My story is like many others, in that I was mis- and undiagnosed for many, many years, while my symptoms were over-looked by both doctors and myself. I went to doctors many times but did not put my symptoms all together until I was totally incapacitated and applying for disability, in the Spring of 1999. I am female.
I had over the years developed hair loss, unprecedented weight gain I could not lose, lowered metabolism, carpal tunnel symptoms, severe joint pain, many miscarriages, severe menses and PMS, loss of memory, mental fog, confusion, extreme fatigue, a goiter (swollen thyroid), dizziness, random shooting pains, tingling extremities, numb extremities, loss of muscle tone, muscle weakness, bruising, eye tics, cold intolerance, extreme heat flashes, low body temperature (96.7 was "normal, the doctors told me). I had developed anxiety attacks for "no" reason, heart palpitations, lost my sex drive, had unexplained fatigue, depression and suicidal thoughts.
I was a very slender, high energy person until in a serious accident when I was almost nineteen, and am now in my early fifties and overweight by about 75 pounds. I attributed many of my symptoms to those old injuries, though doctors for the most part told me I was very healthy.
My symptoms were considered to be psycho-somatic. I also had some emotional problems so attributed symptoms to that and normal aging. I went thru much counseling and therapy dealing with my inner problems, just to get more and more physically ill.
Over the years I was told I was manic depressive-depressive (meaning on the depressed side), bi-polar, clinically depressed, psychosomatic, DXed with fibromyalgia (with all pain points) and was otherwise told I was healthy. Doctors always felt my neck and said I had a goiter, but my tests all were in the normal lab range.
1992, I had to quit retail work, my symptoms were so bad. I could not grasp and hold onto a pair of socks, as they would fall from my hand. My fingers were numb, my knees and wrists were in severe pain. I went on state disability, but it only lasted for a year.
I tried for SS disability but gave up.
I tried massage, heat, food supplements, chiropractors, pain killers, physical therapy, stretches, hot tubs, hysterectomy, gall bladder removal, etc. and they even seemed to help for awhile, but problems got so bad that I finally told my GP doc at the time that I needed the medical profession to either fix me or admit they can't, because I didn't want to live like that any longer. He was not responsible for all my past problems, but he listened.
Meanwhile I was surfing the net, looking for info to aid me in getting SS disbility, when I met someone on the internet that had been awarded SS disability, who was willing to help and offer support, since she had been helped thru the net also. She wondered if I might have Cushings, due to my symptoms, which sent me researching that. I had many of those symptoms, and my doctor began tests.
I didn't have Cushings, but my TSH was borderline hypothyroid. I searched thyroid, and found this healthboards' Thyroid Board.
There were some wonderful people posting, who cradled me in care while I went thru the seriously difficult struggle of becoming my own health-care advocate while very ill, depressed and weak! At one point I was so depressed it scared my board friends, but they kept being here for me in ways no one else could, as others didn't understand or know what to do for me.
I had to discover what my symptoms meant, organize them and write them out in a way the doctor could put together to come to a conclusion of how to help me. I had to learn to be patient and deal with stress so it did not exacerbate my illness further. I learned it is usually a slow road to correct diagnosis and proper treatment.
When earlier I was DXed with fibromyalgia and carpal tunnel, I was so happy to have names for what ailed me until I learned the fruitlessness of those diagnosis'. Thankfully, I never took the drugs or surgeries that often/usually go along with them, to either hide the cause or make matters worse.
My symptoms had become so bad that I cried in front of others from the sudden sharp pain that hit me anywhere in my body at random, and I was one that never cried in front of others. I really did not want to live.
But through much research and suggestions of other posters, support from this message board, the book The Thyroid Solution, and Mary Shoman's Thyroid Forum on about.com, I was able to get a referral to an endocrinologist, get a TRH test (thyroid releasing hormone test) which reveals an underlying thyroid imbalance, and insist on a trial thyroid med.
I had to insist on each step along the way and show my reasoning, as in the minds of most doctors. "borderline" doesn't need treated. My TSH was 2 when I first became disabled from symptoms. The TSH was 5.6 when I was telling my doctor I didn't want to live like that.
The TSH went up to about 24 in the TRH test, revealing hypothyroidism. It was funny, that the endo had been positive I was hyper, due to my heat flashes and palpitations but I wasn't at all. I was hypothyroid.
I learned we can have all, either or any symptoms in hypo or hyperthyroidism, though there are common symptoms in most cases, because imbalances affect other organs and glands which also produce symptoms.
The first endo did not want to treat me, but I demanded a trial of the thyroid med, because I had read the TSH alone is not an accurate reading of what thyroid level a specific person really needs and most females need to be in the lower range. (one article about TSH is in the information archive topic).
Well, well, well, even though I was put on a low dose of Synthroid, my TSH went down and I began to feel energy coursing in my veins.
I was SOOOOOOOOOO angry at all I had to go through to get a simple and very available solution, not that I was healed yet, but to think what I had to deal with needlessly, I was just FURIOUS!
To end my long tale, I decided to use my anger energy to help others which is why I persist to offer suggestions and support on this website. This is where I was helped when no one else had a clue.
Thyroid affects every part of the body, controls whether all hormones and body chemicals get balanced. Not having enough or having too much thyroid affects mood, balance, mental faculties, female hormonal symptoms (my hormones had crashed), mood, the pain threshhold (mine was lower than any seen by my Rhuematologist), organ health, everything!!!
I changed doctors until I found one that truly listens, as thyroid is a subjective experience: only we know what we feel. What we need cannot be measured, but by trial meds we can get what we need, and I finally am getting what I need.
Yes, I still have some other problems, such as I have yet to make myself get out and exercise regularly to get in shape. But with my TSH down to just below 1(one), where I feel best, if I eat right, I can lose weight, I am getting my mind back, I feel good enough to let go of my own and other people's foibles, and have energy to LIVE!!
There were two churches of people praying for me, I was that ill from being "normal" and then "borderline" thyroid imbalanced.
My family feared I was dying.
Now I am pretty near normal for me...which is kinda crazy, but that is another story.
I share this to encourage anyone with some thyroid imbalance symptoms to learn all you can about this so you can factually find out if you indeed have an imbalance. Getting this corrected can make all the difference, just as not getting it corrected can cause all the harm.
This is just one story in the many, and I hope everyone will share here, too.
[This message has been edited by Tree Frog (edited 08-16-2001).]
thx tree frog for all of your help and your honest account of what has been going on with you. No one truly understands all of the symptoms that hyper and hypo can cause us to suffer. At your suggestions, I too have finally gotten a hold of a copy of The Thyroid Solution, I encourage anyone that does not have answers to read this book. In the first two pages I exclaimed "it is me" and felt comfortable knowing that all of these "symptoms" are not my imagination.
For all of those who are currently suffering with hyper and hypo I say please slow down and try to relax your way through this ordeal. Here is the reason why----I have been on an emotional rollercoaster for more than a month now--I have Hasimotos dxed a almost two years ago--I go between hypo and hyper and can tell almost the minute I turn from one to the other-- I get palpitations, brain fog, nervous, panic attacks, muscle pains and the like. 10 days ago 4-5-01 I was terribly upset over something stupid and minor--I left the house in a huff and did some errands--well since I was in such a state I ended up falling and breaking my ankle--now I have that to deal with--can you believe it? Please, please take a moment to slow down and try to let these feelings pass before something happens to any of you---I am glad that it wasn't a car accident or something worse--as soon as I am healed I am going to find alternate ways to help the mind body connection (yoga, etc.) I cannot believe the mental toll this is taking on me--I can almost stand the physical stuff but I am normally sharp and bright and am turning into a blithering idiot--not being able to hold a thought long enough to make a decision etc. I go for blood tests next week and will insist that I take blood every two weeks so that I can keep track of the Hashimoto's--at any time it goes hyper or hypo with little or no warning.
If I wait to take blood every three months it is always too high or too low by then--
In closing, please be careful and try (although I know it is hard) to create a place where you can slow down and wait for the anger, stress, etc to pass.
Good health to all!
This is my first post on this message board, but when I saw the list of thyroid disorder posts, I just had to say hello. Thyroid disorders run in my family, and I have been diagnosed as hypo...... I can't even spell it, but I have to eat every four hours, in order to keep my blood sugar at a good level, so that I don't feel sick..... I don't take any medication at this point, as the doctor sees no need yet, and he says that this is a mild case of the condition, however, in the past couple of years, I have begun to experience some violent panic attacks in public, whenever there are alot of people around me. Occasionally, I do not have the attacks, but I was wondering if anyone could tell me if you know if this may have something to do with a thyroid disorder, or if you have any similar cases, please email me, I am very scared, bacause I am generally a very healthy person, and I am frightened of having to take medication because I don't feel sick, and sick people take medication, but then again, I am sure that we have all been there.
Tree Frog, what a great idea to have everyone put their stories up!
I was diagnosed at 23, although I've had low thyroid all my life. I was pregnant when my doctor decided to test me because of my dry skin and large size. As soon as I was diagnosed I went to the library to find information as to why I had this disease. I received no pamphlet or info. explaining the disease from my endo. I found out any thyroid disorder has usually been passed on from a relative, not always immediate, and if one person is diagnosed, it's a good idea to have blood relatives tested as well. My endocrinologist didn't bother to tell me that either. I went to all my blood relatives to warn them to get tested. I found that the disease had skipped a generation from my father's side. I explained that if left untreated, this can kill. I distinctly remember warning my sister who had high thyroid symptoms about possible heart attack. My parents were tested, by not my sisters or brother. Two years later my sister who was 27 was in the hospital with a mild heart attack and the er doctors had no clue as to why. My mother mentioned thyroid and the doctor lit up. She had all the classic symptoms of overactive thyroid, but had never been diagnosed until my mother had to say something. Honestly, doctors and people do not take this disease seriously, as if it could never kill. Two years later, my sister was taken off her thyroid medicine, only to fall alseep behind the wheel twice. The second car accident nearly killed her. As for me, I've been on synthroid 5 years with no change, despite normal tsh levels. I came to this board because my first and formal endo treated me as if my still having all symptoms was no big deal, and I wanted to see if anyone else was having the same problem. Currently, I've been having dizzy spells for the past two years and am trying to convince my doctor that it's thyroid-related. I hope my story helps someone. Strawberry
Tree Frog: I have a lot of the symptoms that you stated. Last year I asked for a thyroid test and it came back "normal". Should I request a better test? I have been running 3-4 times a week for the past 3 weeks and haven't lost a pound. Have cut down my eating. I thought maybe my estrogen levels were too high due to the fact I went on the depo-provera shot in 1999 (normal weight level) and within 2 months gained 20+ lbs. Went off the shot less than a year later. But, my body still isn't back to normal. Not on any form of birth control but still think my estrogen levels are too high or could it be thyroid problems. Very, very frustrated. Any and all advice would be greatly appreciated. I have a goal to lose 40+ lbs and am giving myself a year to do it but, it seams I'm in a no win situations. Can exercising change thyroid and estrogen levels?
I want to tell my story here in hopes that it will help someone in some way.Just where to start??? Today yes that is a good place to start. I am Hypo I am currently on .3(2-125's mcg and 1-50mcg of synthroid. And my new endo has requested that I take prozac at 20mg which I am not sure how I feel about that as I belive that antideppresant "can be" harmfull to us. He wishes for me to lose this weight ha the weight the body pain the deppresion the emotional outburst the anxiety the emotional and physical greif the dementia yikes! that can drive us to feel as if we are crazy. I was always ill from my thyroid problems just no one ever put it together. Through my pregnancies i was ill no doctor ever checked my levels as a matter of fact I was ignored or put off even told things like if I smoked I would be ill too.
You need to see a mental health doctor (well with my past that was possible)I continued to have body pain, lethargia, vomitting upon rising ,chest pain, headaches, nausea, emotional outburst, tunnel vision, no hunger no thirst poor memory , stomach problems began constapation , hair thin , nails brittle hair begins to come out in spots, so tired I rarely coughed or sneezed .Weight loss, weight gain ,intolerance to heat to cold dizzy spells. numbness tingling, legs very heavy almost like there was weights on them. By this time I had forgot that as a child I was on some kind of thyroid medication. Also my intuitivness was telling me there was somthing more than my past child abuse and my insecurties and fears playing a role in the drastic changes I refused medications.Panic attacks, anxiety. unable to consentrate. I just trusted that there was somthing going on more than mental health and my emotions.(had tried to take my life) showing and feeling failure in many aspects of my life, personality changes.I really belived that there was somthing in my head test for thyroid disorder came back with in normal range (this can be dangerous for some of us)I was sent to another head doctor. Ha and she belived me and sent me to get a MRI ha I did have a tumor in my pitutary, area they call it a lipoma it is considerd non-cancerous at this time, but is considered a malignancy because it is in my brain. You would think someone would have sent me to a endocrinologist right nope, now I am treated even more foreign than before like some kind of odd ball. I was prgressivly getting more ill and so much was happening that I was unable to walk speak (oh they gave me loads of antidepressants (I was this or that you know Manic-depressant and so on)Developed full blown lupus symptoms, I belive this was related to the drugs that I was put on, but had shown simular symptoms as a child (immune disorders)
Milk leaking from my breast my weight had started out at around 112 had now soared to 208. I had a moon face hell I felt like I was no longer real at all that somehow I had become this thing that noone ever bothered to tell me I was not humane at all. Sorry if this is confusing and hard to read it just brings back so many thoughts and emotions.
I could not walk or speak did not desire anything.I lost my job, I had to leave school I could not parent my children consistantly. There is so much more, Maybe I should write it all down and give it to my new doctor it is hard to know I went through all that just to find out that all these symptoms could have been headed off by giving me synthroid and treatinhg me like a person not a thing. Now I am down to 186lbs. and I am leading a somewhat normal life I plan to make it a life that I call my own. I know that I will never trust my life to a Doctor on his or her own again. I will play an active roll in my health care as I have always but it is with the Dr's that we need to bring info to and if we can not get a resolution then we need to seek another and somtimes just giving them info that we find helps.I belive with all that I am that thyroid disorders are a serious health issue, left untreated by the health care profession. I belive that more serious time and money needs to be put into this issue.Today I strive for healthy conscience thinking and eating and drink the recomended amout of water.(which seems to have lowered my blood pressure) have had some cardic issues as well. I went from a healthier person to a medical nightmare and now I am seeking a way of health that makes me feel whole again, in doing that I seek a physical, emotional and spiritual combination to my well being. Thank-you for all of your stories.
Wow, sounds like what i'm going through. I have hyper/hypo thyroid, so I get a bit of it all. Hair falling out and breaking at the roots. joint stiffness, blurry vision, weight gain, weight loss, leggs feel like i'm wearing cement blocks when I jog, anxiety attacks, heart palpitations, tired, can't sleep, loss of memory, hungry,can't loose weight. When I get my T4 checked when I'm hypo it shows normal, but my thyroid is swollen and I gain gain gian weight, tired, depress. I tell the doctor I know it's not normal I know my body. Then I have it checked in 6 months it's over active, I loose weight, anxiety attacks, heart palpitations, can't sleep, talk too much. I have graves hashimoto diease. It's untreated right now I have no insurance. To top everything off I have asthma, so when I work out I have to deal with thyroid and asthma.
I see these posts are a month old but I am new to these forums and find them really great. Im from New Zealand and can identify with a lot of what different people are saying. In particular a lady who said she was 46 and had had a hysterectomy. I too have had a hysterectomy. I was diagnosed with Hashimotos when I was about 19 and have been on Thyroxine (our form of synthetic hormone) since then. Im now 47. I was literally told my thyroid had burnt out. I have my levels checked six monthly and mostly they are within range but I do beleive a lot of my health problems over the years are attributed to this. I have joint problems and degenerative disc changes. I have had achille tendon problems with operations there and on my neck for a ruptured disc plus elbow probms as well. I too have anxiety attacks and mood swings, and anti depressants have never helped. I was a normal weight till this was diagnosed and now am overweight by 40lbs. I cant shift the weight no matter what I do. and I have talked to others with thyroid probs who seem to have this problem too. I have never talked to anyone with hashimotos though so it is great to finally find someone after all these years. My husband thinks I am cracked also. He is sick of all that goes wrong with me, I have had heart probs as well. Last test showed an enlarged heart. I also get palpitations and have learned to live with them....gosh I am rambling ...but it is great to read other people's stories, Chow for now, Linda.....aka kiwichik
I told my story in another topic , but will do it here too.
When I first showed these symptoms I was 18,
I was having anxiety attacks, weight loss, misscarriage(at that time thought to be from - blood) I was tested for HYPER and all of it came back "normal" I was told to quit drinking caffine, I too had depression and a fixation on death, my mom said I was morbid, i cried for no reason, got violently angry at the smallest things..I was a mess!!!
Well, anyway.. I chalked it up to caffine and went on feeling this way only it got worse, at 25, with memory loss, cold chills, low temp, sinus conditions, i also had arthritis at 25! and still the doctor tested me as HYPER because i was so thin, i started getting tired by 2pm every day(even still) At 32 i developed severe strep throat and had lumps in my throat, very noticable ones, i couldn't even swallow water! so off to the Doc i go.. and he sees these lumps and... whoa... he had a cow!
But still, tested for HYPER and guess what?
I turned out to be severly HYPO! my count was a 31.7 this Doc really got on my case about seeing an endo right away, said I was lucky not to be in a coma! He went so far as to call me 3 days later to find out if i had made an appointment! I went to the Endo and he started me on the lowest dose of levoxyl...that was a little over a year ago (may in fact), i have switched 3 times, I still am not leveled off, I recently found out that my count "bounces" up because of stress, this was very important to know, I have 3 kids, a husband who has been with me since i was 15 (no not married that long) I feel bad for him because he honestly thought i was going crazy and he still stood by me. My lumps were biopsied and the doc didn't like the boarderline results so he shipped them to Mayo clinic, where i am happy to report that they said i had lumpitis thyridist(lumpy thyroid) hahaha, 3 weeks of thinking i was gonna die :) I am still not better at all though, the tsh levels are down but i am still suffering all of the symptoms.. If anyone knows what else will help the symptom side of this..let me know cause i am tired of being tired and crabby and nuts! Thanks for reading this.
My 2 small children are watching me cry while reading your stories. Well, here is mine. I hope someone can help me.
In January/1999 (3 days after giving birth to my 2nd child) I started to experience what I thought was baby blues. I cried all day. That night I told my husband. I had left the dinner table so as not to cry in front of him. I went downstairs & cried & then a weird tingling feeling came over my body & started shaking. I thought I was having a nervous breakdown. I called my doctor right away. He said he couldn't give me anything since I was able to take care of the baby and I should call the office in the morning for the # to a support group. That same night, my mom called. I told her I thought I had post-pardom depression. She came right over with a xanax. I took it & within 10 minutes I could just feel the tears dry up & I never cried again. However, I went to bed & shook all night. I wasn't cold but felt the need to bundle myself up to make me sweat. Once I did, I stopped shaking and was able to fall asleep. That didn't last too long. Every hour I woke up because I had diarrhea. Because was unbundling to go to the bathroom, I would start shaking again. This went on all night. In the morning, I called the doctor's and told them what happened & lied & told them I had a fever so they would see me. When I got there, they took my temperature and it was 97.1. They didn't think anything was wrong until they opened my gown. The found out both my breast were severly infected. They gave me an antibiotic. The second night, it started again but it wasnt as severe and it only lasted about the first 3 hrs after going to bed. Each night it got less and less until about 6 days after it was gone. My primary doctor says he thought it was just the way my body reacted to the infection. I bought it.
January 2000, I get the flu and bad sinus infection. I was on and off antibiotics for 6 months. The infection wouldnt go away. June/2000, my kids had a stomach virus later that week I got it as well but much worse (along with my period). I was in bed for 4 days. I had stopped the anitbiotics the week before. On the fifth day, i put the kids to bed & got a shower & sat down to relax. All of a sudden, the feelings came back. Alot of people say they sound like panic attacts but I didn't want to beleive them because I was not that kind of person. I'm still not sure they are panic attacts. I ran to bed hoping if I could fall asleep, it would all go away. I got very dizzy when I laid down. I got up and went back down to wait for my husband. I assumed it was the sinus infection. That it was too out of control and my body couldn't handle it. I called my doctor, he thought the same and gave me another round of antibiotics, this time with antiverts for the vertigo he thought was brought on by the sinuses. Again, after a few days of antibiotice it went away. A little less each night.
November/2000 my kids had a stomach virus again and thanksgiving night I got it too. I got my period and a few nights later, again with the "possible panic attack" but it was bearable this time. The tingling didnt feel like it was in my brain this time but now I started with the neurological symptoms, cold, numb, or tingling feelings in only certain parts of my body (ex: one arm, my knees, a stripe down one leg). I thought i was getting a sinus infection again & assumed that was the cause. the cat scan came back showing no infection. I told my symptoms to the ENT and sent me for an mri. My brother has MS and they thought i should be check for it. It came back negative for MS but they thought I had a stroke. 2 neurologists said it wasnt a stroke but a UBO (undentified bright object). In the meantime, my left side went weak, I would pick something up and my muscles would cramp up, aches and pains in my muscles and joints. I was then diagnosed with Fibromyalgia. I wasnt convinced. It seems to come to easily to the doctor. i wanted to see a rheumatologis then, and he said he didnt like being second guessed!!!! And that I tried to dupe the system by seeing "2" neurologist. Well the rheumatologist says I have a lot of the symptoms of fibromyalgia but other neurological ones that dont fit with it. He seems concerned with the ms since my brother has it. I asked about the thyroid and he said "the test shows it was normal". then he looked and said it does look and feel full and wants me to have a scan done.
Thanks for hanging in here with me. I have the tendency to ramble (as you can see). I just need to get this all off my chest.
Here are my symptoms over the past 7 months:
possible panic attacks with total body shaking after, in winter i had feelings of not being able to get warm, that stopped, now i have hot flashes, recently severe hot flashes with tingling from head to toe with diarrhea (one i go to the bathroom, the hot flash stops but then I start shaking), nervousness, pain in forearms that goes to pinky and ring finger, joint and muscle aches/cramps, menstral cramps almost all the time, just not feeling right/normal, more hair than ususal coming out (especially in shower), tingling on underside of hands and feet when I touch something, chest tightning/pain for 6 months straight (only went away when I took vioxx from rheumatologist), one month i had bleeding in between periods for first time in my life (they put me on birth contro with has helped with hot flashes except when I have my period), left arm goes weak and pain goes from shoulder to fingers, back of scalp i s numb and tingling, itchy, dry eyes, coldness over parts of body. I think that's all.
I appreciate your time. I can handle the pain, numb, tingling feeling. Its the possible panic attacks, hot flashes, and nervouseness I cant. I am 32 years young and i cant think of living the rest of my life like this. thanks for listening, sorry so long.
[This message has been edited by fibrobabe (edited 06-27-2001).]
[This message has been edited by fibrobabe (edited 06-27-2001).]
Well, here's my story. I am 5'5" and I always weighed about 125-130 lbs. Well, while I was a sophmore in college I had a really bad case of the Tawian flu that was going around. It was after I recovered from that, that I noticed things started changing. They were very gradual, so I just figured I was being a wimp and was very hard on myself. I started having massive diarrhea. I attributed it to working two jobs in college putting myself through, and school work. I started putting on weight, just a little every year, but I was so busy, I never weighed.
I had always had problems with my periods from the time I was 10 years old. They put me on birth control pills at that time just to stop the bleeding. I remained on them and they quit working when I was 16. They wanted to give me a hysterectomy, but finally found a pill strong enough to stop the bleeding. While I was in college, I went to a specialist and was diagnosed with severe endometriosis. So everything that I was feeling, I attributed to endmetriosis.
While a senior in college, I had surgery, graduated college, planned a wedding and moved to a new town all in 4 months. I just knew that my fatigue was due to being burned out. I graduated in 4 years, going through the summers as well. The day after I got married, I weighed and was astonished when the scales read 160 lbs! I cried for days. Gradually, things got worse. This was in 1988. In 1991, I hit a big wall. I started passing out between meals, then started losing weight at 10 lbs a week. I was thirsty all the time, hot, sweating and shaking so bad I couldn't write a check. I was tired all the time, slept 4 hours out of every 72, started hallucinating spiders on the ceiling and had severe vertigo where the whole room was spinning. I had to do basal body temperature tests for fertility and my temperature when I woke up every morning was 101. My OBGYN accused me of not doing it right, but I was. And I couldn't get pregnant to save my life. I was mean, and I just don't mean irritable. I mean vicious. And I knew I was being vicious, but I couldn't stop it. It was like having PMS multiplied by 10. At this point, I was on treatments for endometriosis for a while and before that, I had been on fertility drugs. So I attributed my moods to that. Well, when I started passing out between meals, my now ex husband said, "You know that's not normal don't you?" SO I went to the dr. thinking I was hypoglycemic. He said possibly and did a blood test for thyroid. I didn't know he tested for it. He did check my pulse and had a strange look on his face. The very next day, he called me himself and said go to this endo immediately. So I did and he tested for Graves Disease. Sure enough that's what it was and he said I had a really bad case of it. He immediately put me on PTU and straight Iodine. He also put me on Inderal, a heart medication. I was twenty-five years old. The heart medication slowed my heart a little. My resting heart rate before rising every morning was 110. (I started taking an aerobics class one time and I couldn't find my pulse. The aerobics instructor timed it for me, looked strange, and said do not come back until I see a dr. I just attributed it to being out of shape and that I was a wimp) Anyway, they told me to stop trying to get pregnant or that I could die. My dr. recommended surgery, so I did. My surgeon was very worried that I would have a heart attack on the table, so he made me promise I would take my Inderal before the surgery. I was in surgery for 4 1/2 hours. 4 months later, I was pregnant. My OBGYN still says it was the endometriosis, but you know how dr's are. As a fertility specialist, he should have picked up on it immediately, with the high body temperature, shaking hands, irregular periods and not being able to get pregnant. Not once did he do a blood test for this. Anyway, I've been on medication and have had many ups and downs with dr.'s and my medication. After having my son, I started falling asleep in Whataburger, and I had no reflexes. My primary care dr. put raised my synthroid from .125 to .2. Then he killed himself. So, I was able to stay on .2 for a while, got pregnant again (I was now a fertile mertle). After my daughter was born, had to find another primary care doc since mine killed himself. This one dropped my Synthroid to .175. Then he dropped it again to .150. This is where I had been until recently. I kept telling him that I was hypo and he said my tests were normal. So I have gone to 4 more dr.'s trying to get them to listen to me. At this point, I was cold all the time, my hair was falling out, skin peeling on hands and feet. So, my current dr. believed me. I told her I was feeling hypo, my symptoms and she said that we needed to do a free T3 and T4. I had never heard of them. My tests came back that my TSH was 3.14 (normal) but my T3 was not. So she upped me to .175 for the next year and I feel great. Sorry this is so long, but as everyone here knows, the process is very long because the symptoms are so gradual. And most of us are apt to blame ourselves, we are lazy, weak, wimps etc. And it doesn't help if our significant others believe that of us as well and reinforce our negative feelings about ourselves. I now feel absolutely wonderful! I haven't felt this good in years, so finding the right dosage can happen, it just takes finding the right dr! (and the right husband!) I don't trust dr.'s either. But the one I have now is great. I read somewhere that if you are having problems with your dr. go to a DO or a holistic dr. They treat the whole person and go by how you feel and not necessarily by blood tests. That was going to be my next step if this dr. didn't work out. But she's really great. If you are in the Dallas/Fort Worth area and need a great dr., her name is Dr. Karen Spetman and she's in Willow Park. She's wonderful!
Hi all....I'll keep my story short as possible. I am 32....was diagnosed with Graves disease when I was 7 or 8. They didn't know what to do with me, it was unheard of children that young having Graves disease & there is no history of it in my family. Put me on inderol & some other meds until I reached 16 & then decided I was old enough for the radioactive iodine treatment. Dr. overdid it & I became hypo. It's been a pain dealing with it over the years & having to change doctors because of changes in health insurance. I also developed pernicious anemia (can't absorb vitamin b12 naturally anymore, have to get b12 shots)...which is another autoimmune disease. If any of you are lacking energy even though your thyroid levels are normal, get your b12 level checked. It can be connected to thyroid disease.
When i was about 8 my mom noticed a lump on my throat (funny she didn't think anything about my bulging eyes..lol). Anyways, the doctors wanted to operate and due to the side effects of this, my parents said no. The doctors then told my parents that since they declined the operation they could no longer treat me. No one told my (European barely speaking English) parents that i needed to be medicated.
So things went along and i switched from hyper to hypo..the goiter went away...my eyes went back to normal....and everyone was happy.
Flip forward to age 21. After years of sleeping for long long periods of time, i started having fainting spells, vertigo, panick attacks. It scared me enough to go to my new doctor (old passed away) yet again. I was always in there for being tired, not able to lose weight. I was always told it was in my head. Then i had a vertigo spell at work and one of my co-workers asked me about it. She suggested her doctor saying that she found the doctor to be very helpful, innovative. So i switched docs, had one appointment and in two sentences was being ushered to get my thyroid tests done.
From that time on (15 years ago) i've been on Synthroid. My doses have had to be increased a few times. I always knew due to an increased level of exhaustion and lack of ability to exercise.
I recently started having the same and decided enough was enough. I have never felt "really good" since about the age of 29. So, off i went to the net to do some research.
I did my research, came up with what i wanted, went to my doctor and educated her on different thyroid drugs. She had me do new tests, researched on her own while my tests were coming back and agreed to change me from Synthroid to Thyroid (which today was my first day on the new med).
I'm very happy that i have a doctor who listens and is willing to do something that benefits their patient.
I felt wonderful today for the first time in about a month. The exhaustion lately has had me beat. I know it's only the first day, and each of us is an individual in their reaction but i certainly hope it continues like this and to improve.
I hope that everyone reaches the appropriate medication levels to let them have control of their lives again :)
reading all of your stories has helped me so much. Thank you! I started getting my symtoms about 12 months before my son was born (weight gain and knee pains) after he arrived 2 years ago everything went mad. Weight has piled on, behaviour is irrational, either completely down or on a high, a weird stomach thing (very bad cramps that come on suddenly followed by, well lets say it's not very plesent) hair lose, broken nails, no labido, I'm so tired that I'd cry if I had the energy. You get the picture, the list goes on and on. In a way I thought I was lucky - my mum, sister and paternal grandmother all have thyroid conditions so I had a fair idea of what I could be looking at. I went prepared to the doctors with my list of symptoms, he did a thyoid test but it was 'only a bit low' so diagnosed depression instead. I've seen other doctors, one only this week, who still don't seem to take this seriously. I've had more blood tests all of which say the count is low, the last one also showed anti-bodies of some sort, but the doc didn't explain what that might mean. The pain in my knee has recently become so bad I've been refered to a rheumetology unit to see if it is arthritis. The consultant there doesn't think it is, his suggestion is a thyroid condition and off I've gone for another set of tests. Sorry to be so long winded, hope I haven't bored you with all this, it's just good to get it all said, especially to people who understand. I'm going to keep pushing to try and get the help I need, but sometimes it just seems too hard, I'm too tired for the constant battle of trying to get some one to believe me. Well that's all. Again- thanks- for your stories they give me hope for the future.
Hi everybody! My name is Diana, my friends call me Dee, and let me start out first by saying that I'm new to this forum, but am very thankful to have found such a place, where others with similar probs can share in their experiences, and be there to support and help each other. Thank you so much!
My story begins like this.....I was around 19 years old, when a guy with a loaded 32 pistol beat me up and stole my car...and left me stranded at my house which had no phone, in the dead of winter. I had bruises in several spots on my face, and neck, and needless to say my nerves had had it! I walked about a mile or 2 in the snow downtown to my friends house where I could call the police station and report him. Once my mom picked me up to take me to her house, I was such a nervous wreck that I could not sleep, and I had broken out in a nervous rash all over my body for three days straight. I even tried nerve pills but I couldn't sleep or anything of the sort. My mom suddenly noticed that my neck was rather swollen and she asked if he had grabbed my neck in the midst of all this. and I assure her that he had not. Mom's motherlaw had a home care nurse that came to her home everyday so we went there to speak to her, and she said, that I appeared in her oppinion to have a thyroid problem, and that if you have thyroid problems in your family's history, that it can be hereditary and that a traumatic experience can bring it out early. Well come to find out, I have had two aunts, and my grandmother who all had thyroid probs, and now my mother has been diagnosed with a hyperthyroid disease.
Well, to make a long story short...I am now almost 26 years old, a newlywed, with no children, who has been diagnosed by three different endocrinologists as having Graves disease, a form of hyperthyroidism, and am on the WORST emotional and physical rollercoaster ride of my life! LOL And my poor new hubby is having to put up with me through all of this lol. Although he's soooo understanding and supportive, as he is 45 and was diagnosed with thyroid cancer years ago and knows exactly what kinds of things I'm going through.
Anyway, right now, I have started seeing a new doctor, since the others seemed very ignorant in my oppinion, and this doctor seems very knowledgable, and very nice, and patient enough to listen to how I feel, etc...unlike the others. but my problems now are different,....Just as I thought they were getting my levels lowered and straightened out with the Tapazole and atenolol....the have cut my prescription in half, and I don't know why....but I am now having muscle cramps, and really cold chills to the point where I feel like I just can't get warm at all, and I am normally so hot that I freeze everyone out, LOL.
has anyone else experienced these muscle cramps? I am only 25 years old for crying out loud, and there are some days I feel like I don't even want to get out of bed!! help! LOL
I have a doctors appt on Monday, but I can't even run out to the store for 5 minutes feeling this way, it's awfull! and I drive 5 hours to get to my doctor....so I'm not even sure I'm up to the trip, although I have to.
Any suggestions??? please? I'm desperate, LOL.
Hi everyone! I started experiencing panic attacks about 15 years ago. They started to get worse so I decided to go to MD in 1998. He tested my thyroid, TSH, and since it came back within range, 3.3, he said I was normal. The attacks still continued off and on. Then in Dec 2000 I had my second child. Four months later I started to get depressed and thought I was post-partum depressed. My hair was falling out, my skin was very dry, lack of concentration, very irritable (RAGED, is more like it), stress and inability to handle it. My husband said that I needed help, and I told him he was the one that needed it-he WAS the problem. After seeing the woman in Houston sho suffered from PPD I decided I better get myself checked out. I went to another great MD in June of 2001. I told him my symptoms and he was smart enough to check my TSH level. It came back at 8.2 so his office called me back for appt. right away. He started me on .05 mg levoxyl. He had also given me paxil at the first appt thinking it was depression. I didn't want to take it, and haven't yet. He told me that the med level might have to be adjusted. And the hypo that I had was very common. He knew exactly how to treat. But I took it upon myself to go to an endo specialist to find out more about this condition. This was 4 weeks after the MD visit and after starting med. He sent me for another TSH, Free t4, antibodies, and sonogram. The sonogram came back normal (Thank God!) My TSH was now 4.9, t4 was within range but my TPO antibodies were 70. This means autoimmune. He kept me on the .05 levoxyl . Then last week I went back for results and he upped the med to .075 mg. And wants to see me back in 8 weeks, to retest TSH. He wants my TSH at .4 level. He said that I should start to feel more energetic and that I should start an exercise program of weight lifting to build muscle and also low carb diet, more protein. My symptoms now mainly consist of some muscle cramping, some insomnia, still irritable some, weight gain (which is plateau), frequent urination, water retention, a stomach from pregnancy that will not go away!!, still have some lack of concentration, and some bone aches. I do not feel like I should, but am working on it. I asked endo, MD and gyn if this is related to pregnancy. They all said no. It takes a long time for this to progress. So it will take a long time to get back. If I get there, huh? But I do feel sooo much better than the day that I went into MD thinking I was post-partum depressed. My husband and kids think so too. I am very thankful that it was discovered and I am on the road to getting better.
Good luck to all of you!
I am so exhausted I cannot read all the stories at once. I was just diag'd with hypo. I've been on meds for 1 mnth and feel no different. I am getting re-checked next month. I just wanted to say that I had no idea....Of what I have read I have alot of the same symptoms....I assumed I was over 30 and this is the way it is....I also have severe TMJD which causes much pain and suffering. I thought alo t of what I felt was due to TMJD. Nver did I think it was my thyroid. I had asked my old PCP once if she thought my thyroid was inactive she said NO. My new doc I didn't even ask he just did the blood work and well....Here I go.....
geeze, after reading all these stories I feel moved.
I am pretty sure I have always been hypo. when I was young I had AWFULL periods, I'd have to stay home from school,would sleep till the afternoon on weekends, but never had a weight problem till after I had my second child,then...... I would sleep ALL THE TIME. Friends would come over and and I would fall asleep while they were talking to me... LOL probably made them feel bad too, they really are not boreing at all. My weight was depressing me. I had some tests done and they said my thyroid was borderline but no meds.
I lost some weight w/ the help of diet pills, then got pregnanat again, and again could not lose no matter what.
long story short: My Dad died 3 yrs ago due to lung cancer, I was mamaging a store in the Mall and I couldn't walk across the Mall without felling out of breath. I figured I was just feeling this way due to loosing Dad, I was depressed, *****y, wanted to be just all alone. I went to the Dr and my TSH was 37!
So since then I have been on synthroid, but it is ever changing and the way I can tellis that I get very short of breath depressed,and irritable! everytime. When I call the Dr he thinks I am goofy cause I say, I can't breath and I need a blood test......
My question is always.. "why can't we just keep it a little high" that when I feel and function the best but they always say nope nothing doing.
I was diagnosed with Hasymoto Thyroiditis when I was 11 years old, I'm now 31. I don't see my doctor very often, and after reading some of your stories, i have a few questions i hope someone can answer. I've had sever sharp pains in both sholders for years. I've had exrays done, and gone to a specialist, no results. Does this have anything to do with the thyroid? Also, recently, someone mentioned that they thought my eyes were getting bigger. In someone's post here, they said there eyes buldged and then it went away after some medication was given. Is it possible, do you think that mine would go away as well?
Hi Everyone...Here is my story. Posted per your request. Take care. NEVER GIVE UP!!
Well came back from Vanderbilt for endocine stim testing.
I will sum up what has happened in the last 19 months.
Aug 2000 I delivered my wonderful son. Ten weeks post partum I Developed Thyroiditis with positive TPO and TGAb. I was very ill with it. My OBGYN said "post partum depression with all the symptoms I was having (hyper symptoms). She did no exam and no blood work. I fired her. Then I was diagnosed Hyperthyroid four months post partum. I had tremendous headaches. So I had thryoid uptake scan to confirm the thyroiditis and an MRI that showed my pituitary was enlarged. Initially I was told it was negative. The endo I saw for the thyroidits said I would recover in a matter of a few weeks and be fine. Well by late spring of 2001, I really became ill. Especially when they took me off my thyroid medication. I had full body tremors I muscle wasted and lost almost 15% of my body weight in a two week period, tachycardia, arrythmias, you name it I was sick with it. No one knew what the heck I had....I was then diagnosed with ANXIETY. I fired these doctors. So in June of 2001, I had new doctors who took me serious. They referred me out to every specialist you can think of. They ran another MRI of my brain and pituitary. Low and behold this is when I discovered my pituitary was enlarged STILL. I was told the one I had in December of 2000 was "negative". Nope. So I went from endo to endo trying to get diagnosed. "It's not your thyroid and your thyroid levels are normal". Another endo told me I had a "bump" on my pituitary and that I had "skinny womens" disease (this man should not be practicing). My "skinny problem" was a result of my extremely low blood pressure that was making me even more ill average 80/40 (my skinny problem I recently found out was a transient hypoadrenalism because of that "bump" on my pituitary)). Fired him. Finally I had a doctor who said it is your pituitary but you need to go to a major medical center like mayo. So my husband and I flew to mayo and got blown off after spending 10,000 plus travel expenses. This was in August of 2001. Finally I did some extensive research on pituitary and thyroid disease. I contacted three major neuroendocrine centers. I choose Vanderbilt in Tennessee. Hooray!! I had testing done. I had stim testing done. Insulin tolerance test to check for pituitary function for ACTH and growth hormone. I am ok with ACTH and results for adequate growth hormone are not back. I have HASHI's. Doctor put me on synthroid 88mcg to put my thyroid "asleep" since it is struggling to work. He said lets stop fooling around with titrating up over time. Your gland is going to fail in the future let keep your tsh below 1.0. I think most of you know what I am talking about. A doctor with a brain. Back to my pituitary. It is making my thyroid work but the thyroid gland itself is damaged and that is why I am on thyroid for good now. My FSH and LH (these are hormones that stimulate your ovaries to give you estrogen and testosterone and make you ovulate) are not up to par. So I am on permanent estrogen replacement, cycled with progesterone and taking testosterone replacement.
I had something very rare. My immune system attacked my thyroid after the birth of my son. It then went on to attack my pituitary gland. When these two things happen together it is called lyphocytic hypophysitis. My pituitary failed for a short period of time (looking back it was between December 2000 and it is still recovering) There is a chance I will become permanently hypopiuitary over time. I will be flying to Vanderbilt once a year or more if needed to have the endo doctor check me over. This doc is down to earth and all brain. I also have two doctors here who now know what we are dealing with and know how to treat me (and trust me that I know there is something wrong).
What is so awful is that not very many endos know what they are doing. They think you can have blood drawn and that is enough to give you a picture of a patients hormone health. I dont care if it is just thyroid or pituitary. Stimulation testing is the best picture. In my opinion if you feel you have just a thyroid problem, a TRH stim test is going to give you a great clinical picture of thyroid function. You also have to have a doctor that listens and really LIKES what he/she is doing and that is to help people. Do not ever give up. I went through 10 doctors four of which were endos that continued my ill health for the last year and a half.
Just an added note....lymphocytic hypophysitis occurs in about 25 percent of all post partum thyroiditis patients. That is scarey. I wonder how many post partum thyroid patients are out who have pituitary disease???
I am a Registered Nurse. I never believed something like this would happen to me. Here I am a healthcare professional and doctors dismissed me as "too worried".
Boy I am glad I kept going. I have to be closely monitored now. Especially for future secondary adrenal failure.
This is definately not a piece of cake. I thought diagnosis would bring relief. Now I have that "unknown" lingering in my thoughts.
I waited a long time to tell me story. I guess I wanted to make sure it wouldn't be to long or maybe I wouldn't say it right. Here goes....
I was 35 and very sick. I couldn't lift my head up hardly. I daughter was only 6 at the time she is 26 now. I would get up in the morning and make a cup of coffee and have to go back to bed because I was so tired. I felt like I had the flu aching muscles low grade fever. I was still working at the time and just had to take a leave I just couldn't do it anymore. I was going to the doctor weekly. Nothing ever changed they said I was depressed and need to see a therapist. I went to one for a few years. I never got any better. I was in a bad marriage at the time. My X husband is an alcoholic and my children were to small for me to get the guts to leave. I finally went to a doctor that specialized in Arthritis I hurt so bad it was the only thing I could think of at the time. He told me I had fibermyalgia. It took me seven years to get over feeling that sick!I then was able to go back to work at a full time job again but not doing the same thing. I went back to school and got my administrators license and am now working in an assisted living facility for the elderly. I was feeling pretty good for a few years. My two boys were living on their own and my daughter was in high school. I finally left my X husband and tried to start a new life.I seem to be doing fine have times when I am still tired go to the doctor every three months. Then my doctor (who I thought I was good ) retired. I had to find another doctor thank goodness!! I complained to him about being tired not myself etc. He did a bunch of blood work and said, my cholestrol was very high. I am not a meat eater and was very surprised it was always just right! He also ask me how long my thyroid was at 6 I said, I have no clue...he said we should try starting you on something see if the cholestrol comes down and you start to feel better. I did and my cholestrol came down to normal. I felt so bad for so long its hard to tell when my thyroid started to go off and the old doctor never said a word so who knows. I am just glad I found this board and am starting to educate myself on my own health. BTW, I am remarried to a wonderful man and its a happy ending. I keep track of my own thyroid now thanks to you all very bright people and I have a doctor that will listen to me. Joy
I waited a long time to tell me story. I guess I wanted to make sure it wouldn't be to long or maybe I wouldn't say it right. Here goes....
I was 35 and very sick. I couldn't lift my head up hardly. I daughter was only 6 at the time she is 26 now. I would get up in the morning and make a cup of coffee and have to go back to bed because I was so tired. I felt like I had the flu aching muscles low grade fever. I was still working at the time and just had to take a leave I just couldn't do it anymore. I was going to the doctor weekly. Nothing ever changed they said I was depressed and need to see a therapist. I went to one for a few years. I never got any better. I was in a bad marriage at the time. My X husband is an alcoholic and my children were to small for me to get the guts to leave. I finally went to a doctor that specialized in Arthritis I hurt so bad it was the only thing I could think of at the time. He told me I had fibermyalgia. It took me seven years to get over feeling that sick!I then was able to go back to work at a full time job again but not doing the same thing. I went back to school and got my administrators license and am now working in an assisted living facility for the elderly. I was feeling pretty good for a few years. My two boys were living on their own and my daughter was in high school. I finally left my X husband and tried to start a new life.I seem to be doing fine have times when I am still tired go to the doctor every three months. Then my doctor (who I thought I was good ) retired. I had to find another doctor thank goodness!! I complained to him about being tired not myself etc. He did a bunch of blood work and said, my cholestrol was very high. I am not a meat eater and was very surprised it was always just right! He also ask me how long my thyroid was at 6 I said, I have no clue...he said we should try starting you on something see if the cholestrol comes down and you start to feel better. I did and my cholestrol came down to normal. I felt so bad for so long its hard to tell when my thyroid started to go off and the old doctor never said a word so who knows. I am just glad I found this board and am starting to educate myself on my own health. BTW, I am remarried to a wonderful man and its a happy ending. I keep track of my own thyroid now thanks to you all very bright people and I have a doctor that will listen to me. Joy
I decided to post my story....hoping to find answers, like so many of us.
I was always bone skinny. At 36 yrs old and After 6 children I was 5'8" and only weighed 121 lbs.
Then I went through a divorce(that lasted two yrs and was very nasty..stalking, etc.. About 6 months into it I started putting weight on, with no changes in diet.
Went to the doctors with this concern...and they laughed (I was up to 135). I was scared though because my mom hit 36 yrs. and started putting weight on for no apparent reason and now is over 240 lbs and is 5'3".
I dieted for the first time in my life, and lost nothing. I began to try other more healthy things than dieting....like watching fat. But continued to gain weight.
Once I reached 150 I demanded from my doctor that something be done...there had to be something wrong with me. So they did some blood work and said everything was fine. I just needed to cut back what I was eating. Stupid idiots!!!!!!! [img]http://www.healthboards.com/ubb/confused.gif[/img] I was only eating 1400 calories a day.
And that was mostly veggies and fruit.
Well with no help from the 3 different docotrs I I started
1.eating vegetarian for 6 months...... still gaining.
2.eating different combinations of food (cabbage soup diet) .....still gaining
3.weight watchers for 8 months......still gaining(they said I was cheating) :mad:
4.took natural trim for 4 months .....LOST 28 POUNDS and then started gainging with no difference in habits.......gained all back and 10 more while still taking herbs. grrrr
5.started on the ER4YT diet. Felt great....still gaining
Started exercising every day alternating arobics with stregnth training...after 7 months .......did not loose one freaking inch
6. Tried Adkins diet. LOST 25 POUNDS IN THE FIRST MONTH.....stalled and started gaining it back after 4 months of altering carbs to try and break stall.
Went to a nutritionist as I was up to 180 pounds. She did blood work....
thyroid was not bad but borderline...she gave me stuff to improve that.
Progestrone was low...gave me stuff to mend that.
recommended the Adkins....still gained.... much to her surprise. She told me it was genetic and there wasnt much else she could do.
Now at 207 pounds I am ready to cry. I have 9 of the 11 thyroid symptoms. THe only 2 I don't have is constipation and heavy periods.
I am so discouraged, so disgusted and so miserable. My husband is supportive as he has seen all I have done to try and get a hold on this gaining.
I guess I am hoping for some miracle...but meanwhile still searching. lol
So that is my story. Hope someone out there has that magic wand. :D lol
Hi, everyone! I'm a newbie and also recently diagnosed with hypothyroidism. I hope you people are patient because I feel the need to tell a bit about myself before getting to the advice I want. I don't know if this happened to many of you, but I had been feeling lousy for more than 12 years before this diagnoses. Couldn't tolerate heat, couldn't tolerate cold, couldn't lose weight on a typical low-cal diet(this drove me to bulemia, though, luckily, I have been over this problem for at least 9 years), even as a kid-I'm now 35-I always had dry sandpapery hands, lost lots of hair, weird periods, depression and very bad bloating and water retention. More recently -about 2 years ago- I was sent to a rheumatologist(is that how you call arthritis specialists?) only to be told that my intermittent shoulder bursitis, knee pain, hip arthritic-like flare, and fatigue were all due to some vague arthritic problem that does not show in blood tests-I was rh factor negative. I mentioned about the fatigue and weight gain in the hopes that this might help the Rheumy guide me towards a solution and answer to my problems but to no avail. What finally pushed me over the edge to go back to my GP to get a complete blood evaluation again (I had tested "normal" for thyroid all those past years and doctor said I might be borderline but did nothing about it..) was that I had been short of breath and was worried about heart disease(runs in my family)I have since learned that this too is a symptom of ypothyroidism. Needless to say that all these years of feeling horrible and knowing that something was wrong with me has turned me into a hypochondriac. This is sad because many times I felt I was crazy and just making up these symptoms. I learned to doubt myself. Anyways, now that I have been diagnosed I am relieved but have many unanswered questions;
Does anyone have localised muscle pain? My left thight started hurting recently...
Does any one have a swollen gland or tonsil? I occasionally get one tonsil or the other that becomes hard as rock and eventually returns to normal.
I heard that Mary Shomon's book - Living Well With Hypothyroidism is good, but after having bought 3 other unhelpful books on thyroid (they focused only on how to tell if you're hypo and how to convince you doc & such) I'm recluctant to buy yet another letdown. I'm looking for info(in book or on the net)on nutritional therapy or diet. I want to know what is the best way to eat when you have hypo since I need to lose about 40lbs. Does anyone know if she (Mary Shomon) talks of nutrition therapy in her book?
Finally, if/when the dosage is corrected will I lose the weight? And how fast? I would like to hear of success stories please!
Thanks to those who took the time to read this awfully long message. I guess I'm venting out all those years of frustration. I'll appreciate ANY help. Thanks
Hi, I'm really new to this board. As a matter of fact the first time I tried to reply it wouldn't let me, thats how new I am. Anway, I'm really greatful for having found this place. I was diagnosed with a multinodular goiter in 1997. I've been suffering with severe anxiety attacks since I was in high school, I'm 31 now. I went to councelor after councelor and no reason was ever "found". My most recent doctor did blood tests to check my thyroid and they all came back within normal limits, however she says the symptoms say otherwise and is sending me to an Endocrynologyst(sp?). Besides the anxiety attacks which include major heart palpitations, I have hot and cold sweats, weight gain over a period of time though I don't eat much cuz I have no appetite, and every now and then I just suddenly drop 15lbs. or so, my body hurts, and I get severe shooting pain through one part or another now and then, I am absolutely exhausted ALL the time, I just have no energy (not a good thing with a two year old), no matter how much sleep I get. I go back and forth between constipation and diarhea (sorry its gross I know), my hair is falling out, and I'm HIGHLY frustrated with the whole thing!!! I wish they would just properly diagnose me once and for all so I could FIX this, whatever it is.
Anway, what was my point? Oh yeah, I'm sorry you've all had to suffer in this way, but I'm grateful that there are people here who know I'm not crazy (at least I hope I'm not!). Its nice to know I'm not the only one out there, and that I probably don't have some strange rare disease that no one has ever heard of.
are always smilin, even when it hurts
Hypothryoidism runs in my family so I shouldn't have been surprised when given bad news in '95 at age 29, but I was. I had misguidedly been put on lithium year before and believe it knocked out t-gland years before it would have naturally occured. My mother developed hypothyroidism in middle age.
When I look back, it's funny how clued out I was in regard to the symptoms: tired all the time, severe weight gain, and the whites of my eyes became very exposed as if the lids had pulled back. Even when I could no longer stand at the fax machine to send things out at work and had to bring a chair to sit, I didn't suspect something had gone awry.
All my life I've had problems with episodes of depression and thought this was a particularly severe onset. My husband finally urged me to go to a doctor for a check up when I couldn't wake up one weekend. Lo and behold, there it was in the bloodwork, hypothyroidism. Was prescribed standard dose of Synthroid.
A lot of time passed before I realized the treatment was not helping very much. It took a long time to be referred to a specialist because I did not have the energy to do simple things like take self to doctor. I know it sounds silly and self-defeating, but the simplest tasks were overwhelming. Every last drop went into holding down my job with nothing left over, especially to take care of self.
I was fortunate to finally be referred to an endocrinologist who was not afraid to try different things. After a year or so of treatment she pronounced me "thyroid resistant" and began trying different things in different doses in a quest to return me to a proper level of functioning. This doctor was fearless, sometimes she would ignore the numbers on the bloodwork to get me back to a point where I felt normal again. I was terribly impressed. Other doctors would freak when they saw my thryroid levels and caution me like I was a little girl outside after dark. They thought she was some sort of dangerous medical renegade until I would mention she was affiliated with and worked out of one of the most respected hospitals in the country.
I'm sure everything would have worked out in the end regarding the hypothyroidism if I hadn't developed abrupt onset of narcolepsy in '98.
Funny, again I didn't realize something was wrong until it was staring me in the face. The diagnosis was confirmed six weeks ago after I took two sleep tests earlier this year. So in a way, hypothryroidism has taken a back seat in my list of priorities which is odd because I used to be so preoccupied with it, almost obsessed. I was sure it was the root cause of everything that was wrong with my life. Nowadays, I just pop my Synthroid pill each morning along with a dose of Cytomel and hope that it does the job. I mean, if it doesn't do the job, how would I tell? Depression, hypothyroidism and narcolepsy have much in common in terms of telltale signs: oversleep, low energy, and fatigue.
Thanks for reading my post. It's delightful to make contact with others. One feels so alone most of the time. My signature is Waiting to Exhale but my name is Sue. :wave:
After reading the board on Thyroid problems I feel that maybe there is a light at the end of the tunnel for me, afterall. About two years ago I started feeling horrible. Every muscle in my body ached, extreme fatigue...I went to bed at 5:30 or 6 in the evening and slept until 6 the next morning when I had to force myself to get up and go to work...no energy whatsoever. I gained about 40 lbs which made me extremely depressed. I couldn't have exercised or walked if someone held a 32 to my head. I had CAD with a stent placed about three years ago and was placed on Zocor. About a year after that I asked the doctor to switch me to Lipitor because I thought it was cheaper. That is when my problems started. I went on line and there were horror stories about Lipitor with all the same symptoms. I went to my doctor again and again and he always said my TSH was normal and it couldn't be the Lipitor. I took myself off the Lipitor against his wishes, and started feeling better but still had fatigue and muscle aches but not quite so severe. I seen another physician who took more tests and stated my thyroid test was high and put me on Synthroid which I just started at 50 mg's once a day. I started this about 3 weeks ago with no results yet. I now wonder if it was hypothyroidism all along.....maybe drug induced??? I am trying to explore my own health issues, trying to find answers. I need to feel good again, with energy and a zest for living. I am a grandmother and I need to be involved in my children's and grandchildrens lives without being a drag.
Thanks for listening.
Hi, I have posted questions on this board but I have never really told my story. I will try now. I am 37 years old. About a year ago I was having major GI problems. I am pretty shy and it took alot for me to go to the doctors. My family talked me into after I ended up in the er one night in so much pain from it. The hospital after doing a ultrsound to rule out any problems with my heart, spleen, appendix,etc. Thought I might have irritable bowl syndrome. :( I followed up with my doctor. While I was at my doctor I happen to remeber to ask him,(which at the time was amazing because I forgot everything all the time) What could be making my eyes swell? He said it could be my thyroid. I asked how we could find out he said lets run some test. So he wrote up the test for me to get my tsh and t4 tested. He allso went on to ask me if my hair was falling out. I imediately responded YES!! I thought my hair was thining not putting it together with a medical problem. I told him I get a handfull every shower. He asked me if my skin was dry? Can I just say he was naming everything I had been dealing with for a long time. Some things I put off to must be a age thing and delt with and never considered medical.
Then I had my test done and the office called and said I needed to come in to talk about my results. So a few days later I did. My tsh was 6.7 He then asked me if I had had these symptoms for along time? I said 3 or 4 years at least. I had since the first appointment read about the thyroid and realized the memory problem was part of it and so was the brain fog. I always thought I had adult A.D.D. My whole family did we joked about it. Well he said I was hypo and that it's possible a thyroid infection that would go away but he wanted to test my antibodie. He wanted to know if anyone in the family was hypo, I told well the only one I knew of was my gramps.
I had my antibodies tested. When I went back to the doctors office a week later to find out my results. My doctor flipped!! He said I have must of had this for a while. My antibodies TPO were 4,670. Range was 0-34 was normal. He right away put me on synthroid. He told me I would be taking this the rest of my life. He started me on 50mcg's the first week then to 100 mcg's. I was feeling better but not quite what I was exspecting yet. So I read and read... I baught every book they had at my book store on it. Including thyroid solutions. (which I loved) So much I took it to my doctors my next appointment and he barrowed it to read. My mom thought that was nutts. I was impressed that a doctor was willing to do that. I told him with all my research including this chat board I felt he ought to try me on t3. He agreed and put me on 5mcgs twice a day. I have to say I love t3. It really made the difference. I feel almost completely normal.
Learning all of this and realizing I had a autoimune disease that ran in familys. My grandfather he I new was hypo and his health is very bad. I pleaded with my mom to have his antibodies tested and he allso has hashi's. He now is in the last stages of alztimers and has congentinal heart disease which I understand can stim from hashi's.
At this point I demanded my mother and sisters get checked. It took alot but they finally did my mother is hypo with hasi's and is now seeing a endo. I have a twin sister with alot of my symptoms but is only slightly hypo without antibodies
But the worse thing that happen was my older sister. Went to have her's checked and they found a nodual. Her lab work for hypo was normal so they did a ultrasound. It is a single nodual, 1 centameter. Has no fluid and is hard. They did a fna and it came back inconclusive. The doctor felt with all the symptoms I have listed along with her voice has become very horse to do surgery. I am so scared. Now that is all I am reading about and have learned alot about thyroid cancer. He allso diagnosed her with fybromyagilia which Im not to sure he is right on that one but I am more concerned about the nodual. She is having surgery Sept6.
Now I pretty much hate the thyroid but maybe in some small little way hopefully I saved her life since I forced my whole family to get checked. I just never dreamed my sister would be going through this now.
Sorry for making this so long. I know its alot but occasionally I ask questions on here and I felt maybe it was rude that I hadnt told my story. Thanks for reading. Please everyone say a little prayer for my sister Tammie. Thankyou :)
Well here's what I know about my story so far. Last year at my physical my dr. said my TSH levels were off and sent me to a specialist. He put me on Tapazole which I had a reaction to and stopped taking. When I went back to see him he asked me if I was taking estrogen (which I was and which was in my medical history). He said he needed to do different tests. He did them and the results came back OK. I stopped going to him and, of course, he told me if I had any problems come back in.
Fast forward to this year's physical. My TSH levels were really off this time. Looking back I realize I was having symptoms - I just didn't put them back with my thyroid. Now I have an appointment with a different specialist but not until the end of Janaury. Last year when I had the reaction to the Tapazole the dr. told me there was no medication I could take and the next step would be the radiation ( is that RAI?) I'm not sure I want to do that but I really don't have very much information about anything at this time so I guess I won't be able to say until I have my dr. appointment in Janauary.
I haven't had time to read all the stories and posts but this looks like a place with lots of information. Thank you all for posting your stories.
[This message has been edited by Mat54 (edited 11-12-2002).]
First, I want to thank those who take the time to post to this site as it has given me a bit of guidance through what has turned out to be my own person 9-11.
Over the last 3 months I have been given a “crash course” in thyroid disease. On Sept 18 I had a total thyroidectomy. No one “found” the mass on my thyroid. I thought I had enlarged lymph nodes directly under my chin. Three doctors told me they were lymph nodes, but that they were not enlarged. One finally referred me for a scan (to placate me I think). The “nodes” were fine (turns out my ENT said they were actually saliva glands), but a 2.5 cm mass was found on my thyroid. I can still hear my doctor telling me about this “small, benign mass” that may be causing my lymph nodes to swell. It sounded so harmless.
A FNA was inconclusive, but suggested Hasimoto’s and possible papillary carcinoma. I went into surgery not knowing what they would find. The preliminary pathology during surgery was also inconclusive, so they removed the whole thyroid. Two days later my endocrinologist told my husband and I that it was indeed Hasimoto’s and papillary cancer. The cancer was a 1.7 cm nodule INSIDE the 2.5 cm benign mass. The FNA could have missed this and come back and benign when in fact it was not. I am very please with the doc who performed the FNA as he clearly “felt” the texture and quality of the mass were suspicious. He was right on the money!
Naturally, I feel my whole world has been turned upside down. I read The Thyroid Solution and have been backtracking in my mind to figure out what has been going on with me. My docs have all said none of this has actually affected how I feel, as my TSH shows a “healthy” 2.4 level. I know better.
For 5 years I have felt wrong. I have felt that I have been aging at an abnormal rate. I have struggled with adult acne – the thing that has actually kept me going back to doctor after doctor. I have had occasional hair loss, which was troubling. I have been tired, depressed, occasionally even thinking I would just rather not be alive. I have lost interest in many activities and found myself unable to keep up an exercise routine that I was able to do easily before. Sometimes holding up my blow dryer caused my arm to ache. While I would never have thought of myself as having trouble thinking, I would say I have avoided tasks which require a lot of sustained concentration – even simple ones like card or board games with my kids.
I can keep up a busy schedule only by very carefully planning times of rest and inactivity. One day I may be on the go all day, but the next I feel exhausted and can’t keep up. To make the whole picture more obscure, I am a petite person – normally 5’3” and about 95-100 lbs, but have lost about 10 lbs over the last year. I even had them check my thyroid about a year ago, thinking that it may be off. My TSH at that time was about 1.7. They never even suspected anything was wrong with this miserable and very diseased organ.
Currently I am waiting on my scan, following RAI. Now that I know exactly what it feels like to be hypothyroid (TSH 75), I don’t need lab work to confirm that I have experienced this in varying degrees for a long, long time. It is as if my body would shift the problem from one organ system to another in order to cope with the deficiency. That explains why I would only experience the symptoms for a while, and then it would change to something seemingly unrelated. You can look back and see it peppered through my medical records – patient frustrate, tired, “doesn’t feel well,” very thin-consider TSH sensitivity (never happened), skin changes, hair loss. Since I rarely saw the same doctor for long (military), they never put it together. Heck, these guys never even read the medical record. Neither did I though.
It is always good to find a missing piece to a puzzle. I continue to hope and pray this process, although slow, will lead me to a place of better health. I pass this same hope on to all of you.
Thank you tree-frog for pointing me to this thread. I feel relieved and empowered now to ensure I get answers from my doc, whatever is going on. I felt your story could be my own, particularly the symptoms. I feel mostly relief that I don't think I am going crazy and there is possibly a solution to all this. I have also posted some positive things at the end of my thread about how I coped emotionally with IBS and how that mindset is starting to come back in dealing with these problems.
My story is that I'm 29 and have been having the symptoms for hypo for at least 6 months badly, and mildly for the 6 months before that. I used to swim 40 laps a day at 22 and more recently a member of a gym. But in the down times I was always slimmish and didn't have to worry about weight. In the past year I've gained two dress sizes for nothing and have no energy to do basic exercise, and I've found this really depressing. I never worried about my weight in the past, never weighed myself and don't intend to start now, but I am sad about no energy and wondering if it will be difficult to keep in shape.
I also have found it bad in having to turn down invitations to go places as I've just been exhausted and sometimes needed to sleep one or two days on the weekends. I felt people thought I was hypochondriac and that has been bad too. They ask how you are and you dn't want to say "I still feel like ****" so you have to pretend you're OK. I have hated that.
In the past 6 weeks I have had a non-stop sore throat, headaches, sinus problems, muscle spasms and it just won't stop. I have been tired and sleepy. I had tingling in extremities for about 4 months non stop, although it wasn't painful, it was frightening.
I've been tested for every STD under the sun just in case as I never was in the past. All negative. Checked for MS with specialists. Checked for diabetes and iron etc, and apparently all normal. So tomorrow when I go to the docs I will request thyroid tests and won't leave until I get the referral. I have just had it and I can't function properly anymore. I even sleep in the office as I'm alone most of the time.
I am a linguist by trade and work in a fairly high level and demanding role, yet I find myself uninterested and unable to focus, recall and concentrate like I used to.
On a positive note, I'll tell this story. When I was 22 I was diagnosed with IBS (irritable bowel) which I thought was the end of the world and I became quite depressed over that. You basically have no control over whether you'll have Diahhroea (D) or Constipation (C), and when it occurs. It was scary as I have jobs where I travel, my schedule was erratic, I have to be in meetings adn can't run out to go to the toilet. I was very upset for yeatrs and every single time I had a meeting I prayed it would be all ok. It's very stressful.
However, with time and patience I discovered which foods triggered D and cut them out. I read and read about nutrition and good health. I had to change my lifestyle a lot, and I still believe that whatever meds we're on, we must give our body the best chance it can have by being healthy. I learnt that some form of meditation is probably one of the best treatments for any kind of stress or anxiety on the body. I strongly urge everyone with thyroid problems to meditate and learn to focus for a short time everyday or as often as possible. I just started doing this again the past 2 weeks after leaving it off for about a year (I got lax as I had the IBS under control and was crusing a bit). It helps emotionally and psychologically to provide balance and focus. It slows you down and forces you to focus on your body and what is going on. Soft yoga is excellent for this. I found that my body funcitoned much better and I was emotionally calmer. Calm is the key to treating many problems. After giving my body the best shot at doing what it could, I managed to be able to go to meetings and not stress out and have to go to the loo. Part of it was psychological and in the sub conscious and I found that even though I felt fine, because I KNEW I had to go to a meeting something happened and it would upset me and despite my best conscious efforts, my bowels fell apart. I did some hypnotherapy with tapes and this was where I started meditatiing, in addition to yoga, They were specifically for IBS, but helped emotionally and psychologically very much. Finally, I discovered a tablet called Imodium that will stop everything for a day and if I'm travelling it's my safety guard and I feel very comfortable and confident now that no matter what I should be OK for work. I would still be nervous if I didn't have the fall back but overall I was doing much better.
And then all these symptoms started happening and I had no idea what to think. I thought IBS was bad, but I will never feel sorry for myself as it can always be worse. So after relaxing a little about the IBS about 2 years ago, I didn't stick to the exercise and yoga as much as I used to. But I just started to remember the positive benefits I felt before and trying it these two weeks has given me some sanity back again. I have also promiosed myself to do the best things for my body again, eat well, and boost my immune system. I have cut out most alcohol again and virtually stopped drinking caffeine and stopped eating sweets. Everything we eat has the potential to boost our health or put pressure on the body in negative ways (immune system inhibitors like alcolhol, tobaco and caffeine) so that it can't focus on doing what it's supposed to for good health. I now think of food as a source of existence which gives my body a fighting chance at making itself healthy. I am going to again focus on making my health and body a priority and make more changes to my lifestyle to ensure I get the time I need and do less of the things that don't help.
I feel the most beneficial thing is change in thinking and slowing down, as an earlier poster mentioned. It seems that the meditation, yoga (even journal writing every day at a set time) helps focus and create positivity from which all the other positive changes stem. i have had feelingss of being overwhelmed and jhopeless for some months due to these symptoms, but I found that the small steps turn my attitude around and make me feel like I can cope again, and not to give up.
I hope this makes sense and helps some others too. :)
Hello. Like Tree Frog, I had symptoms all over the place that became so bad over the years that I was frequently incapacitated and almost took disability! Can't begin to count the times I was absolutely miserable and had to pace myself.
But believe it or not, this all occured WHILE I was being treated for hypo!! I was diagnosed around 1985 with so-called borderline hypo with a TSH of around 6.2. I was put on Synthroid and my TSH went down to a nice low number. But for 17 years, I continued to have those same symptoms. They were so bizarre and debilitating that by late 2001, I was sure I had a muscle disease and was just about to take disability. I had even joined groups on the internet with others who had the same muscle diseases and symptoms.
(For 17 years, no one suggested that the T4-only meds I was taking might be very inadequate for my hypothyroidism. My symptoms couldn't possibly be related to a "treated" condition!!)
But in June of 2002, I suddenly had a bad reaction to the Levoxyl I was taking. The T4 was not converting, and I felt a constant buzz sensation, and achiness. Lucky for me, it got the ball rolling. I did some major research, joined a Shoman email group, and made a switch to Armour, a natural thyroid hormone.
Amazingly, all my bizarre symptoms stopped. I learned that all that time, my fT3 was never in an optimal range. Synthroid and/or ANY synthetic alone was not doing what my body needed. Natural thyroid, on the other hand, gave me the extra T3 I think I badly needed all those years. Cytomel (synthetic T3) might have helped, but I have sure appreciated all I know now about naturals.
Some people appear to do fine on Synthetics. I even have family members who are on it, and seem fine as far as energy. But one relative has extremely high cholesterol and tri's--a symptom of hypo. So I do wonder.....
But some of us certainly have not done well on T4-only. I've begun a new life, in a way, since I switched.
It's taken me awhile to write my story.I am a 39 year old Female. I have been coming to this wonderful board for awhile.. My story begins a couple years ago when I just felt real sick, I had acid reflex for year and gained weight and just felt bad all the time.. My Dr. really had no answers for me. Then the first of this year I felt like I was unable to live life like I have been I was so sick, and went into the Dr. My Dr. found 2 breast lumps and I was told they needed to come out,4 days after the lumps were found, I found a lump on my right side of my Thyroid. My first thought was WHY God ? I had really chaged my life around and had a Wonderful Birth daughter that was in an auto accident when she was 10 (now 24) That is TBI. We have adopted 6 of Gods angels and our life was going so well . In April I had the surgery for my breast lumps and Thank our awesome God there was no cancer :)Well to get back to the Thyroid a FNA was done it came back not 100% for cancer so surgery was in May 2002 and cancer was found. WOW what a huge blow, My thought was how can my husband & children live without me this isn't fair. Then I found this board ( I know God brought me here) This board is so Awesome ,I met so many wonderful people on here But one stands out the most and that is ArtfulD. She has been at my side through all of this and is my piller that God sent my way ( Thank You ArtfulD) I went through the RAI in June and was put on Synthroid I am still not on the right dose but we are getting there. I have good days and bad. I just Thank God for such a good out come, Things could of been so much worse.. God Bless you all , Marcia ( also known as stardust39)
[This message has been edited by marsv63 (edited 12-30-2002).]
[This message has been edited by marsv63 (edited 07-19-2003).]
When I was in my early 20's I lost almost 50 pounds; my diet included a soy protein shake every morning for over 6 months. Later that year, I went hypo, but didn't make the connection until this week, while researching soy and its thyroid connection. I was put on Synthroid by my father's elderly and out-of-it doctor; the dosage was too high, he wouldn't lower it, so I went off of it after a couple of months. I didn't hear from my thyroid again for a long time, but did from time to time have palpitations, which were always checked out with EKGs and were normal. Now I suspect my thyroid was calling out to me, but the odd test came back within normal ranges.
Flash forward to today - 44 years old. In the meantime, I developed asthma, which has caused me some minor problems over the years.
Almost a year ago, my gynecologist discovered an enlargement of the left side of my thyroid, He suggested blood tests and an ultrasound. Unfortunately, I lost work after 9/11 and my insurance, so I could not afford any testing, and I had no symptoms, so I did nothing.
As soon as it started to get warm in April, the symptoms kicked in. The most alarming ones were the sudden, rapid heartbeat and heat intolerance. I began to panic when this happened, and to panic that it would. Thinking that it was asthma, I over-medicated myself with my inhalers and drugs, making it worse. I was working by now and made trips to the ER for unspecified symptoms ranging from painful, sudden UTIs to palpitations. I endured a very hot and uncomfortable summer, made worse by suddenly very heavy menstrual bleeding and periods that never seemed to end. I had 5 UTIs last year. I made it through mid-October, and then had to stop working. Failing to get any health insurance through work, I was able to have some blood tests done at an arts organization; the tests indicated that I was mildly hyperthyroid with elevated T3, and anemic from my heavy periods. I finally bought some insurance and was able to see a doctor in November, eight months afterthe first symptom appeared. By this time, I was in a highly emotional state. I met my new doctors in panic mode and never got off on the right foot with my PCP, who has no time for me, so I have to find a new one. I became a professional patient and was diagnosed with Plummer's syndrome - a toxic hot nodule that had taken over thyroid hormone production. I had all of the blood tests, a sonogram and an uptake scan, but no FNA.
I abandoned my first endo, who was a relentless promoter of nuclear medicine. I lost faith in my second endo, who seemed too timid and disorganized. They offered as solutions RAI or surgery. I did my homework. I did not want to go on Tap or PTU for an extended period, and definitely didn't want RAI, so I chose surgery as it seemed like the fastest way to feel better. I found a wonderful surgeon, and on December 13, had the left lobe removed. There was no cancer found. It went very well and I don't regret it. I'm trying to build up my system with vitamins and supplements, rest, and mind-body work.
Before my surgery, I was put on a calcium channel-blocker to lower my heart rate, and Klonopin for my anxiety, which I still take when I need it. The anxiety is still with me, but my heart rate is down. I was on Tapazole for two weeks before the surgery but felt ill from it, so I am glad that I did not choose anti-thyroid drugs, which no one felt were appropriate for my nodule anyway.
I saw a third endo last Thursday for my first post-surgery thyroid function test. I am in limbo for a little while longer, but I feel much better, only tired. I sometimes feel a little hypo, sometimes normal, and in the past few days, slighly hyper again. Have not yet started to exercise, but I walk. Not back to work yet.
I had a very emotional and stressful year due to work situation, finances, and relationship trauma. It was the latter, I think, that really kick-started my symptoms. I have an ovarian dermoid cyst and some recently discovered fibroids that explain the heavy bleeding, so I have to deal with these problems next. The gyno did not want to deal with anything until I recovered from the surgery. My period came early a week after my surgery, and it was not as heavy, so perhaps the surgery has had some positive effect on the fibroids.
It feels as if it has been a very long time on this road, but after reading these moving stories, I see that I have not been suffering nearly as much as many on this board. I am so angry to read about the low level of care that so many have received! I feel as if I want to change careers and become a thyroid patient advocate!
Sorry for the length of this post. I hope it helps someone. I wish everyone a healthier and happier 2003.....
[This message has been edited by bluecab (edited 01-07-2003).]
Hi - I'm posting an update on my situation. It's now seven weeks since my surgery. My doctors assured me that I should be "normal" afterward and up and about and back to my schedule in two weeks.
(Maniacal laughter followed by heavy snorting)
I was exhausted from being hyper and still have not recovered my mojo, and am not back at work yet tho I will have to be, $oon. I am terribly out of shape and strenuous activity of any kind sends my heart rate zooming up. I liked it when my bpms were in the high 70s right after surgery but now they hover at 80 while idle and can hit 100, too. I'm not sure why this is happening but it tells me that my levels are still out of whack and that I am under-conditioned after three months spent lying down or sitting on my butt. I have to lose about 40 pounds now but have stayed the same weight as I was (actually lost a few pounds) since just before surgery, when I gained 10 from being on Verapamil, Tapazole and the iodine drops. I only lost 10 pounds while hyper but I was also eating everything in sight.
Three weeks after surgery, my blood tests showed me to be slightly hypo. I insisted on another test a week later as I was feeling crappy; my TSH jumped from 3.75 to 5.89 (it was 0.01 pre-surgery). T4 and T3 in low normal range. I insisted that my endo put me on replacement hormone and I have been on .025 Synthroid for two weeks now. I feel a bit better. As of a week ago, my TSH is back to 3.71. I expect that it will drop some more. I have another appt with the endo next week, and will just have to see what happens.
Endo #3 seems conservative in his approach but I will stick with him a bit longer. I did fire PCP #1 and am on PCP #2 but I am not overjoyed with him, either. I am a much more anxious person since all of this began and I am rather obsessed with the whole illness thing. I really have to watch myself or I will prattle on endlessly to anyone about my health problems (as I am doing now) - something that I once ridiculed in others. Things have certainly come full-circle.
The two things that have saved me are these boards, the one at About and graves-support on yahoo. I don't have graves but they welcomed me and give good advice. The other is seeing a good therapist. Helps keep things in perspective, and she helps to motivate me. My support system is not what it could be, and in times of real distress I have regularly called Samaritans, which I recommend to anyone else who is living alone and dealing with allof this crap without a network of people around. At 3 AM, it's nice to know that there is someone to talk to.
But I do feel a thousand times better than I did at my most hyper. The surgery was the way to go. I had a follow-up with my surgeon yesterday and he was thrilled with how his handiwork, my tiny cut, is healing. I had no reaction to the anesthesia (unless my tiredness 7 weeks after is part of it), no nausea, and no complications of any kind. I take extra iron for my anemia, antioxidants, cal/mag, supplements w/o iodine, black currant oil in the hope that the scars from my scratched-up hives and rashes will go away, Vitamin C - and will probably introduce other supplements as time goes on. I have started eating meat (anemia) and more chicken, grains, beans, veggies, salads, fruits, cut back on dairy and when I do have it, it's organic, as are the meat and chicken and everything else, with a few exceptions. It's not always possible as I have to shop in neighborhoods that I don't live in to achieve this. Bummer.
I'm still on a low-iodine diet but I allow myself organic eggs and the occasional commercially baked muffin or bread (for the iodine!). I have not yet gone back to eating fish and have to solve the omega-oil thing. I so loved shrimp but think that this thyroid thing has ruined my taste for it now, and my beloved take-out Chinese habit is a thing of the past for sure.
Changing my eating habits and eating less generally due to lower appeite (thank you, Mr. Hypo) has also made a world of difference. When I was hyper I went on a low-iodine diet and felt so much better, and I'm continuing it. I stopped all caffeine and alcohol, and most sugar, but allow myself the occasional chocolate or dessert. I try to look at it as a chance to correct a lifetime of poor eating and poor health choices - to get myself back to wellness by treating the whole body. That is the one good thing that I can hold on to here. Now if I could only manage the exercise thing. I started yoga last summer and will try to do a bit of that along with more walking as I ease more activity into my schedule.
Hoping that we all will feel better soon---
2/12/03 - update
I'm finally feeling better! I started adding Selenium to my supplement regimen and felt an immediate improvement to my energy level and mood. I have been on meds for a month now. My T4 to T3 conversion was poor and maybe the selenium has helped. I tried Selenium 200 mcg for 2 days but it was too srong and my hyper symptoms returned. So I am eating 4 Brazil nuts a day and that seems to be a lower dose without giving me the rapid heartrate and jitteriness that I was feeling. Ihope this helps someone else. Just make sure that your T3 is not too high before adding selenium.
[This message has been edited by bluecab (edited 02-12-2003).]
I don't know how long I've had hypothyroidism, but I was diagnosed November 2002. I started developing symptoms 10 years ago after my youngest son was born. I thought that I had chronic fatigue and possibly liver problems since I am positive for hepatitis C, although my liver function tests are always normal. My main complaints were lack of energy and swelling. Other symptoms that I had were dry skin, weight gain and unable to keep weight off, brain fog, vision problems aching joints and asthma.
Last summer I became extremely depressed for no good reason. I was also at this time having trouble processing my thoughts, which I guess would be called trouble concentrating. I was also very tired and gained 10 pounds. I started taking diet pills to give me enough energy to get things done. I didn't loose any weight, but stopped gaining. I also started becoming a little obsessive compulsive, working on insignificant projects for hours, while neglecting important tasks. In October and November I was very busy and stressed out. I think this led to me becoming very ill. I started crying all the time over nothing and my face started swelling. My eyelids were so swollen that my vision was effected. I looked horrible. And my eyes burned and stayed red.
One morning after I arrived at school I had trouble climbing the stairs. I was suddenly exhausted. When I got home I checked my blood pressure and it was 180/110. I went to the doctor and kept feeling like I was going to die. My blood pressure was 180/120. They put me on clonidine and paxil. Two days later they called and told me that I had "no thyroid" and called me in synthroid 150. When I started taking the synthroid my blood pressure went back up and stayed up and I started having almost continuous panic attacks. I also gained 5 pounds over night. This lasted for 3 days until I fainted early one morning. The next day I was admitted into the hospital and stayed for 3 days. My endocrinologist said that I was almost in myxedema coma. I was taken off clonidine and paxil and put on synthroid 100 and cytomel 25 and norvasc. I had a low sodium and liver enzymes were abnormal (from thyroid condition). I started feeling better when I was put on the cytomel. I also lost 12 pounds in 3 days. When admitted into the hospital my Free T3 was 0.75 (1.45-3.48) and Free T4 was 0.56 (0.81-1.61).
For the next 2 weeks I began feeling better daily although I seemed to be somewhat hyper. Then I started having problems with my memory and concentration. It was so bad that I failed my final exams in my 2 computer programming courses. And that is not like me at all, I am a perfectionist when it comes to school. My doctor cut my cytomel dose in half at the end of December and then my mind started improving. I don't know if that had anything to do with it or not, but he told me that too much cytomel can cause problems with concentration and memory. I was so relieved when my mind started improving, then my hair started falling out. It fell out for about 3 weeks. Now it is Feb. and I believe it is not falling out as much. I do have new hair growing in though.
Now I am on synthroid 125 and cytomel 12.5. I only had to take the norvasc for about 1 month. My blood pressure is back to normal, around 120/70. For the last 2 weeks I have felt really good. I have lots of energy, can think clearly again, my mood is stable and life is generally just great. Here are my latest labs: T4F 1.5 (0.8-2.7) and T3F 2.1 (1.7-3.7).
This board has really helped me alot during this illness and recovery. Thank you to everyone who posts here, you have all been a great encouragement and comfort to me. May God bless all of you!
Boy, it's nice to know that other people have been through the wringer too.
I was dxed with Hashimoto's 5 years ago, although I'm sure I had it before that. Looking back, I can even remember that in my early 20s (20 years ago!), I felt like my windpipe was being blocked off if I tilted my head to the right. Now I believe I probably had a goiter even then, but at the time, I didn't say anything and just chalked it up as another one of my "emotional problems"--which I seemed to have a lot of. Always depressed, miserable, unhappy, anxious, worried, frightened. I would also get dizzy spells when under a lot of stress; my periods were horrific; and I basically had no zest for life. People's response was usually something like, "Well, just look on the bright side." Even though depression ran in both sides of my family, nobody seemed to think I maybe had a little bit of a problem there. I just figured I was just a pathetic wuss, and tried to slog through.
Then, in 1997-1998, things definitely got weird. I went from always being in a gray mood to falling into this bottomless pit of blackness. I couldn't go five minutes without breaking down into sobs, even though nothing depressing was going on in my life. Life seemed to be nothing but pointless suffering and misery, and eventually I started having suicidal thoughts. Finally one day I was supposed to drive to my mother-in-law's for a pool party. Instead, I drove past her place and to my sister-in-law's (she's an M.D.), because I feared if I went near the pool I wouldn't be able to control my urge to die. How I made it across the mile-long bridge on the way to my sister-in-law's, I don't know. I had to fight with myself to keep the steering wheel oriented straight ahead instead of trying to drive over the side.
My sister-in-law said right away, "I want to have your thyroid tested." So I had the blood drawn, but the labs came out normal. (Sound familiar?) So, owing to my family history of depressive nutcases, my sister-in-law referred me to a shrink. I didn't like him. I wouldn't have told him if I'd had a hangnail, never mind any serious emotional problems. He thought I was manic-depressive and put me on lithium--which depresses thyroid function, as I later found out. Things went from bad to worse, as, in addition to the depression, I started forgetting words (not good for a book editor!), losing my singing voice, and eventually stumbling and falling repeatedly. It was so scary and lonely and I felt totally isolated. Thank god my husband stuck through it all. He did his best to be supportive, but nobody knew what was going on, and I feared that I might actually be going insane (schizophrenic).
Finally, after about 3-4 months of this, with nothing getting any better, and having tried and flopped with several antidepressants, my sister-in-law said we better do another thyroid test. The day she got my labs back she called me at my office and said, "Drop what you're doing and get over to my office TODAY." I was scared out of my mind, with all these horrible possibilities like cancer, HIV, or who-knows-what going through. When I got to her office she said, "You are lucky to be alive. Your levels of thyroid hormone are 30 times lower than normal, and your levels of antibodies are 30 times higher. I don't know why you're not in a coma." Then she started reading off this litany of hypo symptoms and it was a revelation. I had never heard of half these symptoms, but they read like a detailed profile of me! She gave me some Levoxyl pills and made me write down how to take them, because I was that far gone I couldn't have remembered.
Once I'd taken the Levoxyl for about 3 days, it was like the sun came back up. I hadn't realized how flat and dull I'd become until I started finding myself taking inward pleasure at things like how beautiful the sky looked or the smell of the summer air. I tossed the lithium and antidepressants, and I had hope again, but I still had to learn to live a completely new life. I didn't know jack about Hashimoto's, and I have had to learn a lot of stuff the hard way--like how it feels to be overmedicated, why to avoid iodine, which meds work, what symptoms indicate that my dosage needs adjusting, etc. Right now I take 90 mcg of Armour Thyroid--60 mcg in the morning, 30 in the afternoon. Generally, I feel alright, but my thyroid cycles from being more active to less active, so I have to change my dose every so often. And if I am sick or for some other reason my body chemistry changes, things get bad. I get frustrated with it at times. It would be really nice to know who I was going to be every day when I wake up, but I know that's not going to happen for me. For the most part, I try to put my frustration in God's hands and just deal with things one at a time. I have learned a lot about how to be nice to myself, and I have a lot more compassion for the frailties of other people. Still there are times when my biggest comfort is focusing on the life-to-come, when there will be no more suffering or sorrow. I try to stay reconciled to the fact that suffering and sorrow are just a part of this life, and to learn what I can from them. I know that does not sound upbeat, but reality isn't always upbeat. Some days I hang in there better than others, but I keep hanging in there. Knowing there is a physical reason helps a lot, because I realize that I'm not a pathetic wimp but actually a survivor toughing out a disease.
My biggest wish is that someone will put together a complete thyroid medicine for human beings that is not made from animal products and that actually works. For now, though, Armour Thyroid has proven to be a big help for me.
My best to everyone else fighting the good fight--take heart, there are more of us out there than you may think!
New to board. Just found this discussion board while surfing the web. Knowing that they're other people going thru the same things that I am helps tremendously. Here is my story:
After seeing my family doctor for almost five years and not getting any answers and pysically and mentally getting worse everyday, I was seriouly contemplating suicide. I was a very active wife and mother with two sons. In a time span of five years I gained about 80 pounds and it was all I could do to walk from the bed to the sofa each day. My symptoms were: chest pains, fatique, dry skin, hair loss, loss of all my eyelashes, migraines, numbness in different parts of my body, low temperature, feeling of lump in throat, high blood pressure, no sex drive, anxiety attacks, memory loss, muscle and joint pain and severe random pain all over. After numerous test and visits to the hospital my doctor decides it is all in my head and suggest I go on antidepressants. For a while he had me believing it but deep down I knew that something was seriously wrong. By researhing on my own on the web I discovered a site about thyroid disease and I knew that was my problem. I shared my information with my doctor and was then diagnosed with Hypothyrodism. That was about fours years ago. I have been on Synthroid ever since but have had to have dosage changed a number of times. Doc can't seem to get it regulated. I just recently changed doctors and he has put me on 125 MCG but not any changes yet. Most of my symptoms are tolerable now except the pain in my joints and muscles. I was also diagnosed with fibromyalgia so there are some days I can't even get out of bed the pain is so bad. My hardest battle has been losing the weight. I tried numerous times but usally just give up after about a month. Jan. 1st I started a new diet and have stuck with it. I walk 5 days a week and play some baseball with husband and sons but haven't lost a lot of weight.(12 pounds) If any of you have any suggestions on losing weight please share them with me. I am getting real discouraged. I have also just recently started having trouble with my stomach. If I take anything for pain, I have terrible stomach cramps. (It is almost as bad as labor pains) I cannot even take tylenol. After eating eggs all my life I can no longer tolerate them. They cause stomach cramps just as pain relievers do. I've never been able to tolerate milk products but this egg intolerance is a new thing. Does any one else have this problem? Finding this board is a real blessing for me. Knowing there are other people I can talk with and knowing they understand will help me tremendously. Most of my family members don't realize how bad it gets and some have even called me lazy and tell me if I would just get up and move I would feel better. Sometimes I wish they could live in my body for just one day. May God Bless You All !!! Sandrann
thankyou SO much for tetlling me what you've been thru' -- i WEPT when i read your list of symptoms -- i was diagnosed with cfs in 1988, and altho' various anti-depressants have helped me over the years, i've been feeling a signficant loss of energy over the past three years, and have only just cottoned onto what looks like might be (and have been) my problem ... and i have taken dilantin for seizure disorder for the past four years, combined with clobazam last september (which both affect the thyroid), and NO ONE thought to test it, or if they did the test just came back "normal" (1.35) and no one told me actual numbers 'til i asked on friday ...
all my symptoms match yours except for the shooting pain ...
Well, I finally got diagnosed with hypothryoidism! A huge weight has been lifted off my shoulders and now I get to start feeling better. I don't think I've felt "normal" for the last 4 years, with off and on spells of feeling sub-par my whole life before it really tanked. I'm 25, female and my mother's side of the family is almost entirely hypothyroid. Even my two great-uncles have it! My mom started noticing behavior and emotional problems in me when I was about 17 that reminded her of how she acted and felt before she was diagnosed as hypo. Almost the first thing she did was haul me into the doctor to have my thyorid tested. The result of that batch of testing is now lost to history, but I apparently was within "normal" limits and was sent on my way (not without my first prescription to Prozac, though!). I remember feeling horrible... Not just because I phyiscally and mentally felt bad, but that I felt as though I was being cheated out of my health because my problem was apparently in my head. I felt a little resentful because I remember seeing first hand the transformation my mom went through when she was finally diagnosed and put on meds. I knew that thyroid medication was practically a magic potion that would right everything wrong with me, if only I could be diagnosed! Slowly, however, I started forcing myself back into a routine and managed to pull myself out of the "funk" I had been in for a year or so. I still experienced regular panic attacks and a lot of depression, but I shoved it to the back of my mind as best I could.
Four years later, shortly after my 21st birthday, I began to fail emotionally and psychologically all over again. I started to notice that I was constantly freezing cold and began to notice strange obsessive thoughts running through my head constantly. I went back in for another TSH test, but it came back "normal" once again. During this time, my boyfriend had broken up with me and I had absolutely no coping mechanisms to speak of. For someone who has always prided herself on her ability to pick herself up by the bootstraps and get on with life, this was disturbing to me. Try as hard as I might, I couldn't claw my way out of the depression and anxiety from the break-up. The fact that my TSH was again normal left me with only one option: That I was slowly losing my mind. Got another prescription for Prozac and took it for about 3 days before tossing it down the sink. I just knew it wasn't what I needed.
Again I managed to struggle through the darkest period of my life that far. I was definitely not doing well. I began to notice strange physical changes: My skin, which had always been dry, now began to flake and pill. I moisturized day and night and took baths in oatmeal to try and help my skin, but nothing worked. I also noticed a that a patch of hair on my head had become scraggly and dry. I thought this was because I had suffered a bad sunburn a few weeks earlier, but now I realize that it was thyroid related. That patch never went away, no matter how much I cut my hair, or conditioned it. It's still with me, even now. :)
Another disturbing thing occured right around this time: I dropped 14lbs in two weeks. The doctor believed I was bulemic and lying to him about it. I thought that maybe I had just forgotten to eat because of the break-up. I am 4'11 and at the time, I had weighed 97lbs since age 16, and had never gained nor lost anything in that period of time. Dropping that much weight, so quickly, was totally unlike me. A year later, however, I gained it back and then some in the space of a month!
That following year, 2000, I had emergency surgery to treat a ruptured ovarian cyst on my right ovary. During that surgery, the doctor found endometriosis. I was placed on the birth control pill and told to expect to stay on it for at least the next 5-7 years. I didn't know that endometriosis is often associated with hypothyroidism in women and ovarian cysts are another by product of hypo. I thought I was getting back to normal after the surgery. I met a wonderful man who is now my fiance and I got back in school to finish my degree which had been postponed due to my trouble with anxiety and depression. In the fall of 2002 it all fell apart once again. This time, a diagnosis was made: Obsessive-Compulsive Disorder. I was given more Prozac and enrolled in behavior therapy.
More blood tests were run and all came back "normal" as they always have. I felt I had just been given a death sentence. I knew I fit the OCD profile, but I also knew that I fit the hypothyroid profile even more. However, without a high TSH, there was no way in hell my doctors would listen to me.
Finally, out of bordem more than anything, I decided to have my thyroid tested once more at the end of February 2003. The result? My TSH was now at 4.1, high enough to put me over the new AACE standard! I felt so vindicated, but predictably, my doctors didn't listen to me. According to them, my TSH was normal, end of story.
But thanks to this board I got in touch with a clinic that specializes in women's hormonal health and I'm now officially being treated for hypothyroidism (possibly Hashi's, but I won't know for sure for a little while longer). It's not cheap, but I'm worth it. :)
To anyone reading this who identifies with my story, just don't give up. Be proactive, find a doctor that will treat you and not your lab results. Educate yourself. Keep fighting for your right to be healthy! I know it's hard when you barely have energy to get through the day...
Hang in there!
My story seems fairly boring compared to other people's, but since I was diagnosed with Hashimoto's about 3 weeks ago, I'm looking at my past in a new perspective, wondering how many issues could have been blamed on my thyroid. So here goes ...
I went to my doctor last December for a regular check-up, feeling OK, no overt symptoms. My doc did a regular blood test and the TSH came back high (9) and the T4 fairly low. She then got me back for another test and that TSH came back 5.3 ("normal") so she said let's wait and see. I went back in February and she did another test and that one was 8 so she sent me to an endo. He tested and the TSH came in at 13.5. (I freaked out, but since reading these boards I see that it can go way higher than that.)
So when I look at the list of typical symptoms, I can see I've had at least some one them:
. fatigue; I can easily sleep 10 hours straight and not feel particularly refreshed afterwards. And I like lying on the sofa and watching TV way more than I wish I did.
. I seem to shed a lot of hair and obsessively check my hairline to see if it's receding (don't think so, though it does seem thinner there).
. I feel the cold more than other people and feel shivery anywhere below about 72 degrees.
. I've had tingling in hands and feet and a kind of vague numbness on my face (cheeks) from time to time for about 3 years.
. About 3 years ago I started having difficulty swallowing every now and then - like my throat had forgotten how to do it and I had to concentrate to get food down - terrible feeling. I'd often miss the timing and feel like I was going to choke. This really freaked me out. I googled the symptoms online (sometimes a very scary thing to do!) and MS came up. I was so terrified I had it I didn't dare go to the doctor. I just didn't want to know). Then it just seemed to go away after a year or so, and I wondered if it was just some kind of nervous thing, a choking phobia (I had nearly joked on some candy as a kid).
I've always had periods of depression/anxiety in my life that I ascribed to just "life," an easily depressive personality, and a string of bad relationships, but it got really bad about 7 or 8 years ago after a particularly emotionally gruelling relationship ended - I was really in a dark pit, staying in bed all weekend, weeping every day, feeling so pathetic I didn't even really confide in my friends. I thought if I didn't do something I'd completely go under. I wracked my brains for ages trying to think of something to do that would make me feel better, and I decided to make a complete break from my situation and environment, and move countries. The first thing I did was I got fit, lost about 20 pounds. Then I moved to NYC (I'm Australian). That move really snapped me out of my depression. I was too busy just trying to pull it off, set myself up and stay above water, and just very amazed to be in a city I'd always dreamed about, that I stopped wallowing in self-pity. When I look back now I can't believe how within months I was able to haul myself out of bed and bring myself over here to a high-stress job/environment. But it worked (though I still get very down sometimes, but never as bad as I was).
Now, in light of my diagnosis, I look back and wonder, God, could that have all been thyroid-related? I never had blood tests back then, and when I went to my old doctor about the depression, he just sent me to a shrink who wanted to put me on medication, which I refused to do, and so I just did some pretty unhelpful talk therapy with him. So I guess all I can do now is wonder, and ponder that if I was hypothyroid back then and medicated, maybe I wouldn't have ever ended up in NYC. Hmmm.
Anyway, the last symptom and one I'm very relieved to know now what it is - was a lump in my throat I started noticing last year. I became convinced it was throat cancer as I smoke sometimes, but as usual was too terrified to get it checked out by the doctor. It seemed to come and go and wasn't painful and didn't seem to be growing, which I figured if it was cancer it would've (I guess I'll be one of those people doctors say to: "If only we'd caught it earlier, we could've saved you ...). So it's a huge relief to know it was my thyroid enlarged, and not a nasty carcinoma. I had a nerve-wracking sonogram a couple of weeks to confirm that.
Now I'm very curious to see if the Synthroid has any effect on my mental state - if I'll start seeing the glass as half full instead of half empty, as I've done most of my life. I'm starting to wonder, What is feeling normal, anyway? Did I ever really feel normal?
Thanks for reading.
Ok here is my story. I feel that I have been luckier than some, but still things have been changing over the last 3-4 years, maybe longer. I cannot even remember when things started to go wierd. I thought many things were due to menapause and stress and just accepted them.
There are two things that have caused me the most discomfort. Whirling vertigo and allergies, and the slow but irreversible decline of my lebido.
I have been on a extreme diet for over 2 years because of multiple food intollerances. Therefore, no weight problems. With avoidance and shots and antihistiamines and nasal steriod inhallers and daily nasal saline irrigation I got to the point where my nose was clear enough that I could breath and therefore sleep at night.
I was disheartened when sexual pleasure slowly gave way to: irritation at being touched and attempts made to sexually arrouse me and an inability to climax. I found I could climax, but I couldn't feel it if you know what I mean(no pleasure). My mind played tricks on me, I became critical of my husband, his technique, his lack of attention and so forth. He criticized my performance and applied pressure. We had some serious discussions about our marriage and his needs versus mine. We reached an agreement. Sex on schedule. He would not bug me other days of the week and once a week he got sex without comments about my being unresponsive. We will not mention my discomfort, I need lots of ky and vagifem(vaginal estrogen) just to tollerate things.
Then in late Feb of this year I got fed up with having so many colds. an average of one a month. When I went to the Dr, he complained that my symptoms were nonspecific. I did not tell him about the sex situation; it never occured to me that they were related. He ordered a TSH because of family history of thyroid problems and an EKG cause I had noticed some irregularities, some regular blood profiling. I requested a nutritionist and he agreed. The only thing he found was an elevated TSH.
My TSH was 5.9, he was reluctant to treat and ordered a retest after a month in case it was a false positive. I talked to my sister(Hypo/nodules) and did some research fast. Then I realized that a lot of stuff was happening, like aphasia and short term memory problems, dry skin, cold intollerance. I was counting the days until the retest. It seemed like the more I read, the more symptoms I had. Including the vague tight-throat feeling, and a feeling that I was getting more and more stupid by the day. That was explained when the results returned; TSH up to 6.71. He advised medication- to my relief. That was the 27th of March.
I, on my own made an appointment with an Endocrinologist as back-up for the Family Doc. And so it begins... my hopes are that my allergies will improve to the point that I can eat a regular diet and that I will someday enjoy sex again. It never occured to me that sexual dysfuction could be caused by hormones (aside from estrogen or testrostogene) I have to confess that I have a degree in Nursing and am married to a Doctor.
I've just stumbled across this board & want to say "Thank You". It's wonderful to know that you are not alone, although not so wonderful to know that others are suffering also.
My story is similiar to lots of others. In late November 2002, I was starting to feel really bad. I was so tired, bone tired, that I knew something was wrong. But more than that, and scarier even, was the fact that mentally I thought I was losing it. People would be talking to me, but I couldn't concentrate on what they were saying. I felt so detached from everyone. My mind would wander & I began having strange thoughts. I thought I was going crazy & with three small daughters to take care of, I was scared to death. I have always been a dependable, head-on-straight kind of person, so I really can't describe how terrified I was. I went to the dr. and she sent me for blood work. She called me back the next day to come in immediately because my "thyroid was seriously out of whack". I just started crying, I was so relieved to know what was wrong, and thanking God that it was curable. The funny thing is that my husband is also hypothyroid, but he didn't have any symptoms, it was just detected through routine bloodwork. He is on 88 mcgs of levoxyl & doing fine, but my having a thyroid condition never occured to me. Although, looking back I can see many more symptoms that I had of hypothyroidism. My first TSH test was 195.48 and I was started on 50mcg of Synthroid. Six weeks later I was tested again and I was at 48, & my Synthroid went up to 75mcg. Tested again & came in at 32, Synthroid now up to 100mcg. Just went for 6 week test yesterday & looking forward to having the medication increased.
Thank God that the mental fogginess went away almost immediately. I still feel bad, though better than last fall, but bad. I've had panic attacks, strange muscle pains, a full feeling in my throat, tiredness & cold all the time. I am looking forward to feeling better & better. I just want to thank you all for posting your stories. It helps me to know that I'm not alone. Most people have no idea how bad the symptoms of hypothyroidism can be. I've actually had some friends tell me that they wish they were hypothyroid so that they could lose some weight!
Thanks & good health to all!
Hi - I need to get my thyroid checked. I am scared to go in because I go in so much, but I think maybe it is all because of my thyroid.
I am cold all the time. So is my mom.
I can easily easily easily sleep 16 plus hours a day.
I have lost clumps of hair for years.
I have memory loss and sometimes I feel I am in some alternate reality. Like I space out.
my feet tingle sometimes.
I have no motivation and I love to sleep. It is the best thing in the world.
Hello! I have went to the doctor to have a thyroid test done, and the only thing he told me that one part of the test was low, it was supposed to be .5 to 4.0, and mine was .7! I went on synthroid for 3 months, lost 15 pounds, but didn't like the way it made me feel. I have quite a few of these symptoms and wondering if I should go back in and get back on some medicine. Thanks for posting your story.
>I had over the years developed hair loss, unprecedented weight gain I could not lose, lowered metabolism, carpal tunnel symptoms, severe joint pain, many miscarriages, severe menses and PMS, loss of memory, mental fog, confusion, extreme fatigue, a goiter (swollen thyroid), dizziness, random shooting pains, tingling extremities, numb extremities, loss of muscle tone, muscle weakness, bruising, eye tics, cold intolerance, extreme heat flashes, low body temperature (96.7 was "normal, the doctors told me). I had developed anxiety attacks for "no" reason, heart palpitations, lost my sex drive, had unexplained fatigue, depression and suicidal thoughts
My story is like everyone else, only I need to add thanks to ******** for starting this it made me realize I needed to checkin to this and my results show Hyper. I am going into my first consultation tommorrow.
When I was 18 my hair stylist said I should have my Thyroid checked. I ignored her.
Around age 27 I began to gain weight (must be my metabolism that caused me to gain 32 pounds) and I began to sleep more but I attributed that to my new job.
My hands and feet would tingle, I thought I was dehydrated.
I have no period since I was 25 - I thought it was a blessing.
I am always cold, my temp is around 97.2
I began to have extreme pain in my fingers and hands, I thought it was from typing on the computer too much.
I have been on anti depressants, anti anxiety and benzos for panic attacks since 2000.
I have gotten to the point where I just can't think and I forget simple words. I thought i was just stressed.
I have no sex drive.
My boyfriend said I started snoring about a year ago. I have NEVER snored.
And my allergies. I am on a million meds for that too.
My choletrol was 264 (I think) I figured it was the foods I ate.
My lips started peeling at age 25 and they have never stopped. I gave up trying to figure out what caused that.
Oh well thank God I found this post. Thank God.
[This message has been edited by Citykittie (edited 06-26-2003).]
After reading all of your posts, I feel so fortunate. Looking back, I realize that I had some very minor hypo symptoms all my life - thankfully they were minor. I did not get a period until almost 15 years old, and then had extreme cramping, and extreme bleeding. I started losing my hair (lots!) at 17. If my basal temp goes to 98.6 I am running a fever, and I am always cold.
When my 1st child was 6 months old I was starting to get waves of nausea and thought I was pregnant again, although all tests showed negative. My husband pointed out that I was losing all my body hair. My doctor knew immediately (before he even tested) what the problem was by looking at me. I have extremely dry skin, my lips are always chapped, even my eyelids peel So, I have been lucky enough to be on medication and am pretty well controlled. However, I have never felt "right" and have mentioned this to every doctor. They test and tell me I am in the "norm". I never thought to ask for copies of the tests, or even what the norm might be. Of course I didn't know that endocrinologists even existed, and no doctor has ever pointed me in that direction. Although I am not physically ill the way some of you are, I do see lots of the things I didn't even know were thyroid related until recently. My legs always ache - always! I still have extreme menstrual bleeding, I am always freezing, and my lips and eyelids still peel. Lately, it's the fatigue and lack of "get up and go" that is so bothersome. If something is not life threatening, it does not get done around here. My kids are tired of me being tired - and so am I!!
Fortunately I have an appt with an endo., and I am looking forward to this more than anything in years!!
To feel like getting up in the morning would be sooo nice.
amazing... i feel like my experience is so minor compared to what some have been through!! still, i'll share in the hopes that people will see common themes...
docs first notice goiter when i'm 8 or 9. this is after a bad case of scarlet fever. blood tests come back "normal" (whatever that was in 1985). i also have a family history of thyroid problems.
starting at puberty, i gain a lot of weight and have painful periods and longish cycles (33 days, but regular). felt cold all the time, always did when i was a kid, too.
had some depression in college, but chalked it up to stressful conditions and the high-dose BCPs I was on. switched to lower dose and was doing better.
moved to canada when i was 20, saw a good physician there who followed up on a number of health issues other docs ignored. she sent me for blood tests, ultrasound and biopsy for the thyroid goiter. started seeing an endocrinologist 2x/yr, taking levothyroxine leveling out at 0.15mg. stopped feeling cold all the time, started losing weight - slowly, about 10lbs/year for 5 years, and with a lot of hard work on diet and exercise, though i'm no saint. i'm now in the normal weight range, though on the upper end... my TSH is now quite low - 0.02, but i'm not entirely sure i don't need T3 support as well.
at some point developed high blood pressure (also runs in family, but not at my age - mid 20s). was told this has nothing to do with thyroid (that and increased hair loss, nothing major). lost 45lbs total in an effort to bring BP down. only dropped after i went off the BCP. i feel fairly active and not fatigued, but mentally i feel foggy often, and have depressed times, anxious times, and a big gaping lack of motivation a lot. i had one panic attack this summer, first in my life... have occasionally had heart palpitations throughout my life, but never often enough that i've ever mentioned it to a doctor. after going off the BCP i've had problems with low blood pressure, especially when i've been dieting. makes it hard to cut calories if it makes you faint!
i also struggled for 9 years with RSI - muscle strain in my hands and wrists. this has improved with B12 and other B vitamin supplements (i'm vegetarian) as well as some chiropractic work. weight loss probably helped reduce strain on my back, too. also have had plantar's fasciitis which has eased up with less weight. my post-pill menstrual cycles are also much more normal than they were when i was a teen - very little PMS and cramps, and shorter - 27-29 days. again, could be weight loss, could be the thyroid meds...
the only other medical thing i can think of, which i have no idea whether it's possibly related is about my skin - i am susceptible to hypertrophic scarring, especially on the trunk, and especially during puberty. was told it could also happen during eventual pregnancy. i am caucasian, and i understand it's more common for people of african descent, but i'm not... to any degree that i'm aware of... and no one else in my family has experienced this.
i never know with thyroid when i'm just pulling random facts together and making a big picture when there is none, but i have felt like i was seeing too many doctors for a generally healthy 26 year old - primary doctor, blood pressure specialist, endocrinologist, dermatologist, RSI specialist, chiropractor... i was getting very tired of it. luckily i don't need the BP or RSI doctors anymore, and the dermatologist only occasionally.
ok, hope i'm getting a few familiar nods here... it's been interesting reading other peoples' experiences. makes me feel more confident about speaking up to my doctors about my symptoms.
Here's my story...one for HYPERthyroid, Graves disease folks. ;)
I was diagnosed with Hyperthyroidism in April of 1999, at the age of 39, through a routine new patient blood workup done by my General Practitioner. I had made an appointment with this GP because of bothersome, persistent peeling of the bottoms and sides of my feet. When the routine TSH test that was done on me came back with a below normal range reading, my GP referred me to an Endocrinologist and told me that the low TSH (0.03) indicated hyperthyroidism and that I either had Graves disease, Hashimoto’s disease or cancer! The 2-month wait to get into the Endocrinologist was grueling. I did some research on hyperthyroidism. I saw myself in the symptom list. For quite some time I had suspected that I was going through some sort of perimenopause due to hot flashes, mood swings and sex drive fluctuations, but my Gynecologist had made me believe that this was not possible, so I chalked it up to aging.
On my first visit to the Endocrinologist, in June of 1999, after lab work was drawn, I was given a patient information sheet on Radioactive Iodine Treatment, commonly referred to as "RAI". My Endocrinologist, without having the results of my labs that he just drew, wanted me to take this radioactive treatment for my hyperthyroidism. Looking back, I fortunately had a very full summer planned with 2 trips that could not be cancelled. Because of my upcoming trips, my Endo and I decided that I should start anti-thyroid medication (Tapazole, one of the ATD’s) and continue on with my planned trips. I was to get a WBC, liver enzymes test and thyroid labs done the day before I left for my trip and fax it to my Endo. I did this and the Endo called me to increase my dose of Tapazole. I was to see him when I returned.
In July, when I returned from my trips, I saw the Endo again. I got my blood drawn a week BEFORE my visit and we both had copies of my labs when I met with the Endo. The July labs showed that I was responding well to the medication so my Endo and I decided to continue with this treatment. (Another reason for my refusing RAI was that I had read the patient information sheets that he had given me and realized that I could not be around my elderly, dying Shih Tzu for several days if I took this treatment. This was therefore NOT an option for me. I also did some research on my own and decided that RAI was not for me due to several factors. It was around this time that I asked my Endocrinologist what was the CAUSE of my hyperthyroidism. He told me that he “suspected” it was Graves’ disease. I wanted to know definitively, so I asked for antibody testing. At this time, I did have TSI antibodies, but they were at 89% (normal is <130%). I suspect that my antibodies had gone down due to the fact that I had been on ATD’s for a while when this test was done and ATD’s will lower the antibody count. I have remained on the anti-thyroid medication since June of 1999 except for a brief period when I was severely overdosed on the Tapazole and taken off the medication completely for a short period of time while I searched for a new Endocrinologist.
ATD’s are miraculous medications for those of us who need them and they are powerful. They work for those of us that are hyperthyroid by inhibiting the production of new thyroid hormone. They are also a mild immunosuppressant, therefore they work to reduce the antibodies causing our Graves’. I naively followed my first Endocrinologist instructions to the letter regarding dosing of my Tapazole. I had appointments every 3 months with new labs run the week prior to my appointment. During the winter of 1999 I began to get very, very tired. I found it hard to wake up in the morning and even harder to make it through a full day of work. My hands and feet were FREEZING most of the time…they would not warm up. I also gained 20 pounds during this time period. I was depressed, emotionless and had retreated to a world within myself. My hair looked “dead” as one co-worker described it. I felt “dead” myself and at this point thought that the treatment for my Graves’ disease was worse than the disease itself.
I think it was about this time when I got serious about keeping track of my lab results myself. This was the KEY to my getting better. When I requested copies of all of my original lab reports I found that my Endocrinologist had INCREASED my Tapazole dose when my lab results showed that I was entering a HYPOthyroid state. This medication increase sent me deep into HYPOthyroidism….a place where I NEVER want to go again! By my next doctors appointment, after the medication increase, my TSH was 14.4 and my FT4 was a mere 0.07!!! This is dangerously close to a myxedema coma…and I felt like I was one of the walking dead!
I have since learned that many more people die of myxedema coma than die of thyroid storm. I was seriously ill and my health was in serious jeopardy during this time. My Endocrinologist was NOT monitoring me properly or he would have caught that my TSH was too high and my FT4 was way too low prior to the last Tapazole increase….he should have DECREASED my Tapazole at that appointment! When we got the results of this blood work, my Endo told me to discontinue taking the Tapazole for 5 days. When I saw my test results I knew that I had to find a new Endocrinologist, that obviously this Endocrinologist did not have much experience dosing and monitoring patients on ATD’s. Changing Endo’s was one of the best decisions I’ve made.
My new Endocrinologist restarted me on Tapazole but this Endocrinologist did things differently. My new dosing schedule was to take much smaller doses of Tapazole 3 times a day. (So I went from taking 15mg of Tapazole ONCE a day to taking 2.5mg of Tapazole THREE times a day for a total of 7.5mg per day) As the medication worked, I required smaller and smaller doses. I remained stable on a small dose (2.5mg) of Tapazole for almost 2 years. Today I take 1.25mg of Tapazole a day and plan to test my TSI antibodies in the fall, if they are low enough, I will wean completely off of the Tapazole. As of today, I have been taking Tapazole for 4 years and 2 months. I have had no adverse reactions to the medication and the only bad experience I’ve had was going extremely hypo due to being overmedicated by my first Endo.
I believe that the single most important thing someone with Graves’ can do for themselves to help their journey and help themselves heal is to EDUCATE themselves about the disease, it's treatment options, diet – specifically iodine’s impact on thyroid hormone, lab tests and proper monitoring of patients. You, the patient, are the KEY player in your getting well again.
Please know that you are not alone, there are many of us out here that have been where you are now....things DO get better....MUCH better. Read, read, read all you can about Graves. Make sure that you are giving your INFORMED CONSENT when you agree to the treatment YOU choose, as some are irreversible. This is not an easy disease, there are both mental and physical symptoms to deal with. There is no "quick fix" for Graves, regardless of what you may hear. Graves is an AUTOIMMUNE disease and antibodies circulating in our bodies are responsible for the disease - NOT the thyroid gland. This disease will try your patience at a time when you may find that your patience is in short supply! Please remember this, it DOES get better with treatment. (I've been stable with normal thyroid levels since September of 2000 with a very small dose of Tapazole)
UPDATE: I am currently in remission - as of July 11, 2003. I take no medication at all for my Graves and my antibodies are less than 2%. Total time on Tapazole was 4 years and 3 months. Clearly, for me, the anti-thyroid meds worked...although they did not work in the often quoted 12 to 18 month time frame that so many doctors like to put us on. Thank goodness I had a doctor that allowed me to continue on ATD therapy for as long as necessary to achieve remission.
Some days you're the dog...some days you're the hydrant! REMISSION from Graves attained 7/11/03....YAHOO!!
(dx Graves 4/99, treatment w/Tapazole and Atenolol)
From Graves to Hypo:
In the spring of 1995, I was miserable, tired, losing weight, shaking. I went to my doctor for what I thought was another horrible sinus infection. My pulse was 120 so he did an EKG, tested my reflexes etc. Then he gave me some Tenormin, a lab order for a TSH test and said "you either have a heart problem or Grave's Disease. I ordered these tests stat so I should have the results Saturday morning, but don't call too early because I want to sleep in." - that should have been the first sign I needed to find another doctor. I walked out of his office crying and freaking out thinking I was dying.
I had a thyroid scan and antibody tests, then my GP sent me to a radiologist. He told me if I was his daughter he'd want me to take the RAI. So not knowing anything else, that's what I did. 10 days later, he started me on synthroid WITHOUT ANY BLOOD TESTS and sent me back to my GP.
Every few weeks the GP would order a TSH and increase my Synthroid. By this time I was having full scale panic attacks. I also started having problems with my left eye. I had done some reading and asked if it could be the Graves and he told me no since it was only in one eye. I saw my opthalmologist and he told me I was having Grave's symptoms in the eye and he thought I was still hyper. He suggested I asked my GP for a full thyroid panel.
I had to beg the GP for the full panel. Finally I told him I was paying for it so what did he care. (later I found out he had written in my chart I must be OCD since I couldn't stop thinking about my Grave's disease and the eye trouble). When the tests came back, I was more hyper than before. My pulse was up to 180. We backed down the synthroid and he put me on an anti-depressant for the panic attacks. he felt they were un-related.
My GP refused to refer me to an endo so I found one myself at our local teaching hospital. I think 3 different students examined me along with the endo. He told me everything I was experiencing went along with the Graves, I never should have been given the anti-depressant and with closer monitoring, the synthroid would work out fine. I remember he was amazed because I had been graphing my test results in Excel to correlate with the synthroid dosage and he thought that was neat. (How can they treat us if they don't see trends!?)
After this I switched GPs. But I still didn't feel good so my new doctor sent me to an endo right away. The endo began more careful monitoring but pronounced me fine as soon as my lab results hit the normal range. I wouldn't stay there for long. It seemed like every time I got a sinus infection I would go hyper. He'd stabilize my numbers on a new dose and then I'd start to feel lousy again. Brain fog, extremely tired. etc. I would go home from work and go straight to bed. My husband and I had also been trying to have children since before all of this started, without any success.
Finally I did lots of reading on the internet and found that some people felt better on Armour who had my same symptoms. (Oddly enough, my 96 year old grandfather had been taking Armour for almost as long as it had been out. His doctor died and the new one switched him to Synthroid and he started complaining of not having any energy. That got blamed on his age - not the drug switch). At the nurse's suggestion I faxed my endo lots of information. At one point I was told they didn't make Armour any more. I got a letter from Forest Phamaceuticals. Finally I had a pretty heated argument with the endo and told him, "I don't care what the numbers say, doesn't it matter to you that your patient still doesn't feel good?" That stopped him in his tracks and he agreed to try the Armour.
I got pregnant within a month of starting the Armour. I now have 2 wonderful children but I still suffer with boughts of hyper and hypo although the hypo is much more prevelant. The theory is they did not kill all my thyroid so it is periodically burning itself up and causing the extremes. And I do think there is something about the sinus stuff that triggers it.
Most recently I have been suffering extreme brain fog so much so that it didn't even occur to me that it was my thyroid until my GP suggested it. She drew the last panel and agreed to let me up my own Armour dosage every couple of weeks based on how I feel.
My husband doesn't understand why I go to her. She cut down to only being in the office one day a week but it is way worth it to me to arrange my schedule to see her because she listens to me and understands me.
Well, I'm 29 and mother of 4. I have been feeling dizzy off and on for 8 yrs. I just thought it had something to do with being throwed out the back window 150 feet from my car. In aug I had a really bad spell and the feeling that I was going to fall came and never went away, also just felt tired and crappy. It was so bad that I just couldn't get out of bed, now all mothers know there is no way with little kids that you can stay in bed, my husband called and set up an appt with what I thought was my PCP, but ended up being a nurse prac. She did the blood work and all the other special tests and everything came back normal, she gave me some meds for my dizziness which made me tired and just even more dizzy. My father thought it might be hypoglysimic(not sure how to spell) but everything was normal. Doc decided to order a MRI and C-spine to see if I had brain injuries. When I took the x-rays the tech asked what was happening to me he said it sounds like your thyroid, but the test where normal, he said it looks enlarged so he would mention to doc. She called me a week later and said that my MRI appered normal, but my c-spine showed of course the thyroid enlarged and also that my spine has a disk herniation slightly displacing the cord. also there is a bigger space in the spine that is not normal. She had me do an ultrasound and it showed a large cyst on the left and 2 large lumps on the right. Then went to do an uptake scan and found out that both lumps are cold, but haven't heard anything else from the doc, but have to see the nuroligist doc on halloween.
Well, where do I start.
In my twenties i attended an infertility clinic where they run every gamut of tests when you dont get pregnant. I was told I had low thyroid but by then I was so disenchanted with the whole infertility bit I left the program. About 5 years later I had a serious back problem and surgery (disc prolapse) but resolved.
10 years on(I am now 46) I have high blood pressure. I did some internet searching and have found a link between HBP and thryoid. I rememeber the discussions of 20 years earlier and ask my GP for a thryoid blood test. My mother had hyperthryoid as a teen that was treated with radiotherapy and now is on thyroid supplement. My GP said - your cholesterol is low, you are not overweight, your mothers condition was related to her treatment as a teenager so NO blood test! Despite the fact that I had a resting pulse of 55, felt exhausted even when I woke, dry skin and eyelids hanging over my eyes (these later had surgery to removce!) etc
Twelve months later - she finally tested - I was severely hypothyroid. Dr was surprised - I wasnt!
I am now, 12 months later on 150 thryoxine (synthroid) I still dont feel any better. I am getting a second opinion. I hope I feel better soon
I was idagnosed with Grave's Disease about 2 yers ago. I have had the RAI and I am presently on thyroid medication but my thyroid has swelled up 2x now since the RAI. The first tiem my levels were checked and it was found that I needed my medication adjusted which made it shrink again for awhile but now it is growing again and I just had my levels checked and they are dead on perfect yet I am getting rapid heartbeats at times especially when I lay down and I am at rest, I am losing weight again, my periods are way shorter than usual and my neck is swollen. I have no idea what is going on since my levels are normal, my doctor said since my levels are normal they will not adjust my medication but she doesnt know what is up with the swelling this time. The blood work was sent to the specialist but since they are normal he doesnt need to see me. I do not want to have to have a goiter on my neck that cannot be shrunk. I am very afraid of it getting really big, Already I can feel it, I know those who have them know what I mean when I say I know it is there as I can always feel it, my voice is horse and it feels strange when I swallow. Has this happened to anyone else? Since the thyroid will never work again can it be removed is that the next option for me? My mother had hers removed due to cancer when I was a kid and my doctors are aware of that but so far I feel they are not taking my swollen thyroid and perfect levels seriously enough. All my doctor did was have an ultrsound taken and she said to wait for the results and maybe take another on ein a year if it stays swollen and my levels stay good. How long do you have to go with it before they take it out? All I want is to feel good again and not to have this swollen neck which in my own opinion is not attractive to have a fat neck! I am quite worried and scared that it will keep growing. Does anyone else have this problem and what did they do? Thank you, Kathy
How I got my Graves disease
My entire family has some type of Thyroid disease. Mom, Dad, myself, and both brothers (although one brother is to stubborn to actually go to the doc to get diagnosed, he is classic hypo) The clencher- No one past my immediate family has it. none of my aunts, uncles, grandparents, etc. Just us My first doc's explanation was that I just got it from my parents... but then how'd they get it? my Mom and Dad are obviously not blood relatives. So anyway. After much digging we finally noticed the point in time that our troubles must have started. You see, we were all living in Germany in 1986 when the Chernobyl fallout occured. Prior to this time both of my parents were exceptionally healthy and had no real problems. Not too long after we left Germany symptoms started to appear. I was just a few years old at the time, so I wasn't diagnosed until my teens. However, throughout my childhood I had always been VERY skinny with a higher than average heart rate. So we brought this theory up to several docs and as expected, they were skeptical. I just got a new Dr. here near my new home and when i explained to him how I came about my thyroid disease he shifted in his chair and did that very doctorly "Mm hmm" while scribbling something on my chart (probably that he thought i was 2 fries short of a happy meal ) But anywho, that's my story. I'm now being treated with PTU and doing quite well. We are hopeful that my thyroid will just burn out on it's own soon since I'm still young and healthy
i dont know how long i have had thyroid problems, but
i was diagnosed hypothyroid 3 years ago. i have had a
host of health problems since the last 15 years though.
about 12 years ago my hair started falling out in clumps and that is when i got really worried. but i have been underweight all my life and did not put on at all. so no one suspected hypothyroidism or anything else for that matter.
very soon i developed a sleep problem , i used to sleep all the time. and still not feel fresh. the worst part was getting out of bed. at that point most people thot i was just plain lazy.
i also have had abnormally extended periods, very heavy too. but that was attributed to my bicornuate uterus.
after many years, at one point i felt i was going mad and asked my doctor to suggest lotsa blood tests, in the hope that we would find something. that was when i found out i was hypothyroid. but we also found a very high prolactin level and i had to get an MRI done right away. turned out i have a pituitary microadenoma too, which i am told is caused due to some issues with my underactive thyroid.
now my thyroid levels are in the normal range with the thyroxine that i take everyday. but i still have lotsa problems. i am very forgetful, i have weak muscles, i have joint pains sometimes, esp. my knees and elbows, i still sleep a lot, infact i have some sort of sleep disorder, i am constantly tired, my hair still falls, my sinus cold refuses to go away, have severe anxiety and depression too more often than not.... the list goes on and on.
my doctors think that since my thyroid tests are all normal that these problems have nothing to do with my thyroid. i am not sure i agree.
it sure feels good to vent here. if anyone has anything to add , i would love to hear it.
Hi. I have been reading all these stories for the past hour or so. I was dianosed with Hashimoto's Disease in Sept. after my bloodwork showed my Thyroid antibodies over 1000!! normal is less than 35. My TSH was 6.2 (hypo) and my T4 was. 98(normal). My primary doc sent me to screen for nodulues and cancer IMMEDIATELY issuing orders for a SONOGRAM of my thyroid and an uptake scan in which i took a radioactive iodine pill and return in 4 hours and again in 24 hours for pictures of the Thyroid. The uptake scan showed hypothyroidism and COLD SPOT on right side of Thyroid, with right side being TWICE the size of left side. The Sonogram could find NOTHING in terms of nodules or lumps. I was sent to an ENT first who said he could not biopsy based on the uptake scan for lumps, cancer, etc and he sent me to an edocronologist... needless to say all this was quite terrifying. The endo told me i had Hashimoto's (inflamation of the Thyroid and it attacks the immune system for no reason) and was hypo. He put me on Levoxyl at .88 mcg daily. I just went back today, 3months later after getting blood work redone and a follow up sono last week. Sono shows thyorid still enlarged but TSH went down to 3.2. Endo says while this is "normal" that for my age, 45 year old woman, it should be 2 or less and want to increase my dosage by just 1/2 pill weekly.
When i started on the meds 3 months ago, my hair STARTED coming out in my hair brush and after the shower, from the ROOTS, not breakage. I did stop gaining weight but have not lost any of the 20 pounds i gained in less than a year.
I went from feeling on top of the world to anxiety-ridden, easily upset, weight gain, tire easily, trouble sleeping, head stuffiness, severe PMS, etc.
The head stuffiness bothers me the most but i don't know how to communicate this to doctors. They keep attributing it to sinus infections and prescribe antiobiotics. It comes and goes at its own will. I can be at line in the grocery store and all of a sudden i feel light headed and spacey.
I also take 25 mg of Atenelol to control minor hypertension (BP is now 130/74) and xanax for social phobia/anxiety.
I don't really mind taking the Levoxyl except for all the hair loss.
What I want is my old self back again.... I used to feel I could conquer the world, now sometimes i feel my own shadow can overpower me.
I have a pyschiatrist. He wanted to put me on anti depressants. I said nah, let me see a specialist about hormones first.
Saw my gynecologist and he says i am too young to be menopausal (45) but i am sluggish, weight gain, migraines, sensitve to hot and cold, moody, easily angered and upset, etc.. some days i feel i am losing my mind. It has a definite cycle to it as i do record it. I have about 10 good days a month, 10 hellish days, and 10 i have no idea what will happen next days.....
Should i pursue this in terms of other endo possiblilities, pituitary, etc...i am aggressively taking part in my own treatment but am getting overwhelmed by all the possiblities... FSH hormones, brain tumors, and so many more ailments... how do you even begin, and how do you find a doctor who will work WITH you to get you feeling better?
ANyone been there? Anyone successfully conqurered this horrible set of ailments?
I've been borderline hypothyroid (TSH bounces around 2.6 to 2.9) with extremely low free thyroxine (almost clinically ill) with many, many symptoms of hypothyroidism. Reading through these stories, I felt such a kindredship. The struggles with doctors. Being diagnosed with depression, Interstitial Cystitis, Endometriosis, Fibromyalgia, high cholesterol, low pulse rate, asthma, weight gain, extreme crushing fatigue.
I finally figured out a way to get a trial run of thyroid meds WITHOUT a prescription. I found a place on-line that sells dessicated whole porcine thyroid as a supplement not a drug.
Started taking a low dose of one per day. Didn't really help. Went to two a day, huge difference.
Now I am sleeping 7 hours a day, not 14. Now I don't have constant pain everywhere. I am no longer depressed. I have energy to exercise, live life. I can think clearly now, no more "brain fog."
I feel as if my life has been given back to me!
I really wish I had been able to get the meds from a doctor, but with Army health care...sigh...anyway, the point is, I finally got the meds I needed one way or another and am feeling way better.
So here I am.
It's just amazing how many individuals suffer with Thyroid disorders. In November, 2001, I began having problems with hair loss, weight gain, low metabolism, memory loss, mental fog, confusion, extreme fatigue, tingling extremities, numb extremities, cold intolerance, extreme heat flashes, etc. I had also began developing anxiety attacks for no reason, heart palpitations, no sex drive, unexplained fatigue, depression and suicidal thoughts. Another thing that plagued me was the constant feeling of something in my throat, which in turn caused me frequent cough.
My husband insisted that I go for a physical, so I scheduled one for December, 2001. The results (along with the blood work) showed everything was normal. However, I was still suffering all the symptoms. He prescribed me meds for pre-menopause, depression, and anxiety.Because I still didn't feel right, I decided to go back to the Dr to check me for a possible cold and cough. I guess he thought I was a hypochondriac (lol). After the checkup, we sat and talked. And then he decided to check me once more, due to the fact I was constantly clearing my throat. He pressed around on my thyroid pretty hard until he found something. He immediately sent me to a specialist (that day). I was scared, but relieved.
The surgeon found many "nodules" on my thyroid, one of which was the size of a quarterthat had ruptured. No wonder I was clearing my throat. My surgery was scheduled for the following week. I had cancer, therefore, he had to remove my thyroid, along with some lymph nodes. After surgery, I had to take radioactive iodine doses.
My TSH levels have been so off the charts. For instance, last March (2003), my level was at 137.0. WHEW! Finally, this past Sept, 2003, my levels were within the range. PTL!
For someone who was always healthy and NEVER on meds, now not only do I take Synthroid, but I also take Toprol (a beta blocker for high blood pressure), HCTZ (fluid pills), Nexium, and Lipitor (high cholesterol). Can you believe it? I'm hoping that one day I can be off everything with the exception of thyroid meds.
I feel better now, but, am still having a time losing this weight and I cry all the time. Could it be possible that my metabolism is still not right, although my TSH level is normal now? Would it be worth it to see someone besides my family Dr? Maybe an endocrinologist?
My story: In 1989, when i was 18 I had discovered a lump in my throat. Being young I ignored it for a while and after several months when it didn't go away I went to the DR. After some testing there was suspicion I had cancer of the thyroid. Feb 12 1990 , I went in for my first surgery and yes I had papillary Thyroid cancer. More surgery on Feb 15, March 27 and again eve of March 27 to remove a blood clot from a failed hemovac which almost cost me my life.I spent about 1 week in ICU on life support after the march 27 operation. I had so many different throat surgeries but boiled down to modifieds, radicals and total thyroidectomy. I was metastized and it was heading towards my lungs. The march 27 surgery was planned to go into the lungs but due to to much blood loss the dr did not go that far. 6 months later had a dose of I 131 for an ablative treatment-then it was discovered or someone took note-I am radioresistant. My tumor does not absorb the radioactive iodine which they say was proven by my initial studies before surgery- scan showed 1 nodule on rt side of thyroid yet i was metastized to 8 of 11 lymph nodes and almost whole thyroid gland was cancer.
I am now 32. About 4 years ago my chest xray began to show multimillimeter nodules. My endo uses chest xray & ct scan with my blood tests to track my cancer since Im radioresistant. These nodules staying stable for now, no enlargement yet there have been some new ones to show up. So I am on a wait and see type thing. I know my cancer can take 20yrs to affect me enough that I have to do something, but my cancer was aggressive when diagnosed and dr's are cautious.
They say I was born with it since it was so metastized when diagnosed. There is suspicion my fathers exposure to agent orange in vietenam was was a causing factor. I was never a healthy child, always had that cold or flu going around and strep throat more times per year then i could count. From time of diagnosis up to 5years ago my health didnt bother me much but as i get a little older it is becoming evident.
Nice to meet all of you. I will be a regular now that I've found this board. Be well.
Hi i haven't been here for a long time.
I am currently 25 yrs old, very healthy, mostly energetic (other than stress from grad school). If I had been born a decade earlier I don't know if this would have been the case.
I was born 1978 and everything seemed fine for the first few days. I had juandice but lots of newborns do. My parents, bro and sis took me home. But as days went by, my juandice never really went away, my belly button wasn't healing, my soft spot wasn't budging, and I just sat there with my tongue hanging out. My bro and sis hadn't been like this so my parents knew something was wrong.
Eventually they got to Dr. Sotos, endo at Children's Hosp who tested me, found no thyroid hormone and then through iodine tracing... no gland at all. Nada. Zilch. So they started this little 2 week old on Synthroid and within weeks I was healing and perking up.
I went to Sotos every few weeks, then every few months, then once a year for a checkup and blood test. I hated those appointments because the blood test hurt so much. Its the only time I would throw a temper tantrum or try to hide. The nurse made it better sometimes by being nice, but one guy was scary. I had never really met a lot of black people at that point in my life (I was 5) and aside from the nervousness at that he yelled at me and glared in my face when I was struggling. I got scared stiff-- enough for him to get it done... then was nice and gave me a lollipop. I odn't blame him for being frustrated with me. LOL. I laugh thinking about it now. I stayed at the same level of medicine for a long time.
I hit puberty normally (if not a little early) and got my period at age 11. About this time, thyroid testing was more common and our family doctor (I had transferred from my pediatrician at age 13 because altho he was wonderful, he still said "ow" for me when I got a shot) could do it at his office. My parents knew I was fine, and Dr Soto was expensive. They talked it over and the last time I saw Soto was when I was 14.
Things were fine (other than typical teenger forgetting to take her meds) until I hit age 16- suddenly my chemistry changed and I had to increase my dose to .175 from .125. I stayed at this until age 24 when I started having headaches and galactorrhea and my dose dropped back to .125 courtesy of my OBGYN (another person given the charge of my prescription at one point)... delayed chemical puberty?? LOL
Once again all was well, I lost 35 lbs through weight watchers (weight gain from overeating not thyroid). Then last March 2003 went on Birth Control. I am student insurance and get my synthroid and BC through UC Clinic. Well I thought all was well, no one told me about BC affecting Synthroid, in fact one doc said I could take the pills at the same time!!! Fast forward to September- I had gained 15 lbs back, couldn't concentrate, was tired and depressed and something didn't seem right. I researched and read about the interaction and was steaming mad. :eek: :mad: What kind of doctors were these that KNEW I was taking both and didn't even [I]mention[/I] the possibility of needing a higher dose? Even a nursing student friend said she assumed they had done that so she didn't ask. Went and got checked out (even a doc there kept asking if maybe I was just depressed) and voila-- HIGH TSH. :rolleyes: She upgraded my dose and I went back 6 weeks later (feleing much better) and got tested again. She said that I was still on the high side of normal and we had room to bump up more but that was my choice. I felt fine so I have stayed at that dose since altho lately I feel tired again and am frustrated at my lack of losing weight (altho I have lost a bit and my body liked this point last time too)-- I know i can bump up if needed. I also take Selenium when I remember.
so yeah... :) there you go.
Hi I'm Renee'. I want to share my story for someone who may have been struggling with the same things. All these stories here really helped me!!!
I can't ever remember a time when I didn't have hypothyroid symptoms. My Mom has the same symptoms and tried for YEARS to get a doctor to give her something for it, but of course, her tests came back "normal". My brother is in the same boat, but his tells come back "normal" too, lol, yeah right.
Well, about 18 years ago, (I was 29) I started noticing that my symptoms were very slowly getting worse. I have ALWAYS been cold. I'm freezing right now while I type this. It has been so bad that I was actually looking forward to HOT FLASHES, seriously, sigh. I live in Missouri, and July and August are really hot around here. I drive around with my windows up in the car, with NO AC on, and I'm perfectly comfortable, and I don't sweat either. I sleep with an electric blanket on HIGH every night. My poor hubby....thank God for duel controls, lol. Ha! I remember when we were first married......he wanted to take a shower with me......ROFLMAO!!!! After being broiled alive in the hot water, he never wanted to do that again.
And of course, dry skin, dry hair, horrible nails with lines on 'em, allergies, tired all the time, etc. But when my symptoms started getting worse I started getting brain fog too, and digestion problems like LOTS of burping, gas, weight gain/then weight loss, etc. I went through tons of GI tests, nothing. And I went to see an Internist back then. He happened to be an endo too. He ran a LOT of tests and decided I was hypo. Now I didn't know a darn thing about the thyroid at that time, and he wouldn't "TELL" me anything when I asked, grrrrrr. Finally, he said he could just burn my thyroid out, and put me on pills "if I wanted". Well, I never went back because that scared the living daylights outta me. He never even mentioned a follow up visit. So I put up with the symptoms for awhile and went to another doc. He blamed my problems on allergies. Did the meds, nothing changed. I saw many docs and they wouldn't admit I had a thyroid problem. Tests were "normal".
Last May, 2003, I started losing weight, and I had NO appetite, and I was SO tired. Well, on the 10th I was having worse digestive problems, and all of a sudden I really felt weak, and I noticed that my heart was just beating so loudly in my chest and it was doing a weird beat. The doc called it "bi-jemini" (sp). I went to the ER, and all the tests were normal except the thyroid TSH. It was out of the normal range-too high, which of course meant hypo. That was totally IGNORED by the doc in ER even when I asked him about it. There is NO EXCUSE! While in ER (with hypothyroid according to the tests) I noticed that my pulse was high for me, 80 bpm. Now you can laugh at that, but my pulse is usually around 52, and has been "clocked" by a holter monitor at 33bpm at 1pm while playing a board game!
Anyway, in ER I was shaking, COLD, and so very tired. My bi-jimini went away, and my heart seemed to be fine, in their opinion, so I went home. Well, I really started feeling bad. My mouth got completely DRY, and I had to sip on water constantly. I wasn't thirsty mind you, but my mouth was bone dry. I got sores on my gums that made eating very painful. I was COLD like I have NEVER been cold before. Here was my typical day:
Get up force myself (no strength) to go eat breakfast. Teeth start chattering so cold that I go back to bed with a heating pad on high wrapped around my feet, 5 blankets on me plus 3 robes, etc, and I'm freezing. Then I fall asleep cause I simply can't stay awake.
Go eat lunch. Same routine as breakfast with the blankets, etc, and fall asleep.
Go eat dinner. Same routine as lunch with the blankets, etc, and fall asleep. But even though throughout the day I was SO INCREDIBLY TIRED I felt like I was a bundle of nervous energy at the same time. I would wake up at night and be tapping a rhythm on the sheets cause of nervous energy, but I was so tired I couldn't hardly stand it. I also had a "tingling" sensation on the tip of my nose, and my lips a LOT, AND the bi-jimini came and went all the time. One night I was trying to force myself to cook dinner, and I felt so weak and foggy. My pulse was 40bpm. But I've been to heart docs and my heart itself is fine, lol. Well, this hell went on for a couple of months and FINALLY started going back to normal. Normal for me is just the regular hell of hypothyroid symptoms, but last May was beyond belief. I had had a similar experience back in 1993, but not anywhere near as bad as May of 2003. Since then I have found out that I have pretty bad bone loss now too although I've not taken any meds to have caused it etc.
I'm now seeing a doc (DO) who actually LISTENED to my SYMPTOMS and has put me on Synthyroid. I'm so thankful for this forum because I know that I'm not alone. There is so much MORE that I could've written here, but you get the idea, lol. Hopefully, sharing this will help others. It is amazing how many different symptoms someone may have because of their thyroid problems. God bless you all.... :)
Praise The Lord...I'm not nuts after all! My goodness, you all are telling my story. I am a 47 year old female who has a goiter that has steadily grown over the years. 7 years ago (when I still had insurance) I went to an endicronologist. He ran the test. Did a biopsy and found that I was in the low normal range.He put me on a very low dose to see if it would shrink the goiter. It didn't, so he took me off of it. I do not remember even feeling any better while on the med. I can't wait until tomorrow to let my husband read these posts. I think he's convinced I've just become a lazy, cold woman...lol.
Since I no longer have insurance I can't afford the cost of seeing an Endicronologist so I've felt desperate.The Goiter is choking me all the time now. Hard to swallow.So tired all the time. I wake up tired.
My mother had the same thing, and went through three surgerys before the goiter stopped growing back.I do not want any surgery.
Now the next part of my story may freek some of you out, but here goes. A few months ago, my husband and I went to visit relatives out of state.My cousin was at work when we got there and left a note for us to go in, and to make ourselves at home. And so we did. We were starving as we planned to go out to eat with family later that evening, so we didn't eat on the way. We found a tupperware container on the counter with some brownies and decided to help ourselves. (She did say for us to make ourselves at home). We commented to each other that the brownies had alot of texture. Now keep in mind that I'm 47 and my husband is 54. It turnes out that they were marijuana brownies.Well, after we were done rolling on the floor laughing for a few hours (no joke), I noticed that I didn't feel my thyroid.You know, the tightness, choking sensation, etc...And when I looked in the mirror it was visibly smaller.I've not had the nerve to actually ask a Dr. about this, so I wonder if anyone else out there has had a similar (smiling as I type this because it really is strange) experience.For 2 days I had the wonderful feeling of being able to swallow.The last thing I want to do is become a druggie but it's awfully tempting when you feel like I have for years!
It's so great to know that maybe syntroid can help me. I guess I just wasn't on a strong enough dose before. Thank all of you so much.
Hi everyone, "bebettersoon" (hopefully) from Ontario, Canada here for the first time!
My health has been going steadily downhill for the past 14 years. My doctors had me feeling like I was a hypochondriac whenever I complained about my pain/symptoms. Because I am an outgoing person who is physically active they never took me seriously when I would describe the amount of pain I was experiencing all over my body. They put it down to my training of competition horses or my impending 'old age'. My symptoms are: severe joint and muscle pain/aches, a burning feeling in some muscles and twinges/spasms of pain in different parts but in particular my feet. Weight gain 50lbs. Eye vision just 'not right' for the past 3 years. Bloating. Severe constipation. Feeling of thick throat like I'm being strangled. Severe (but not suicidal!) depression. Extreme constant exhaustion. Way too much sleeping - average 10 hours a day on a GOOD day plus a nap. I had my Thyroid checked twice in the past 3 years and it showed a slight increase from 3.14 to 3.28 but I was always told 'within the normal range' and my symptoms were ignored. I was always 'sluffed off' when I told the doctors about the decrease in the range to a maximum of 3 - they would roll their eyes, like 'yeah, yeah, what do YOU know?'
Finally I found a family doctor who listened to me. Two months ago I had 18 blood tests done and an Ultrasound from my Thyroid to my 'nether regions'. (15 years ago at the age of 32 I had a very tiny fibroid that grew into a 7 lb tumour (benign) in four months causing me to have a complete hysterectomy. I still have ovaries. While no one had thought to look at the reason why the fibroid 'went bad' so to speak, this doctor was questioning it and was doing the Ultrasounds to check and see if anything else had gone mad in my body.) My blood tests came back TSH 5.50, T4 FREE 10.5, Free T3 4.0, and my ESR went from a 3 to a 25. My blood pressure and cholesterol is now a bit high for the first time in my life. This doctor congratulated me on knowing that something was wrong when no one would listen! She said that my ultrasound showed that my Thyroid was on the verge of 'turning bad' and sent me for a Radioactive Nuclear Scan. I will receive my results Monday afternoon and hope to be put on meds right away to hopefully begin the process of feeling better. After feeling so alone with these 'symptoms' I started to read this thread and feel so happy knowing others are out there! We're not crazy or depressed pre or post menopausal women just getting old. We are really sick! Thanks for sharing and listening. It IS making a difference in my life!! :)
Although tinged with sadness, every story I read here is like: Wow! That's me!
I am now 24 female mother of two. My symptoms started after I had my second baby in mid-2000. Everything was fine until I noticed a huge knot (for use of a better word) across my neck. Shrugged it off. Then I started to lay in bed, looking in the shadows. Something had to be coming after me. My heart would race as a flurry of emotions would flood my mind. I became unbearable with the kids and my husband. My hands shook so bad I could barely make meals. My mom says I would sit in her recliner taking a nap, and the whole chair shook. The front of my legs would itch and hurt so bad I had to tie bread towels around my calves as tight as I could just so I wouldn't scratch them. I lost about 100 lbs in about six months, while still eating whatever I wanted. It was horrible. I lived in a dream and slept in a nightmare.
My mom and mother-in-law finally forced me to go to a doctor. I was having horrible migranes...I mention the knot on my neck...the PA didn't even order blood work.
Eventually, I ended up with an internist. She said I had grave's and started me on PTU, 6 pills, 50 mg.
I had my first thyroid storm three months later.
I soon began going to a family practice military doctor who wanted to put me on birth control...to control my hormones...*shrug* Yeah, he was a quack. But he tricked me into seeing a surgeon ( I had previously refused RAI. He told me I was going to go talk to the surgeon about surgery. He had actually scheduled a RAI treatment.)
The surgeon looked at my chart. My husband was in basic, I had a one-year-old and a 3 year old at home. He laughed and referred me to my first endo.
Although I could barely understand a word he said, this man was a live-saver. He took one look at my charts and immediately started me on 16 pills-a-day PTU. He said he actually had no idea what my free-t levels were because they were off the chart. My symptoms lessened. I felt like I was finally living again.
Then I moved. I have gone through four or five doctors and one other endo. They still to this day have me on 16 pills a day of PTU. I am now in the process of trying to get the RAI done, because the amount of meds I'm taking is outrageous...
The one main thing I hate about all this is that I have little to no memories of my youngest while she was a baby.
This site looks like something I could really use. You can't explain these things unless someone has already 'been there, done that'. I hope one day to be one of those people...
This is my story. Thanks for your time!!
Here is my story:
I was in the Army and fractured my pelvis, I was sent on temporary leave back home in 1999 to my family dr.. I was told that if I did not have complete bedrest that it would not heal and I would not be able to carry a baby safely. At that time I was 5'6" and 130. Solid muscle and low body fat. My hubby loved it. I had gained 20 pounds by being on bedrest. I couldnt walk...I had no form of exercise.
I maintained 150 until 2002 when I got a really bad kidney infection. I lost 20 pounds in a matter of three weeks. I was on pain pills and antibiotics...I was a mess for almost 2 months. I was hospitalized for a short time as well. Shortly after that I started gaining weight...I ended up gaining my 20 pounds back...but because I was pregnant.
In April 2003 I suffered a miscarriage at 7 months. I weighed 150...and my weight kept climbing and climbing. I went to my ob for followup and she said due to the miscarriage I was obviously depressed...she sent me to a psychiatrist. Who immediately put me on Depakote, Paxil and Risperdol. Medicated me to much and gave me a deadly drug interaction (Depakote and Paxil).
I was so nervous all the time...having panic and anxiety attacks at work, at the grocery store...even while driving. I stopped eating and got back down to 130. I was an exercise queen...I got a membership at an expensive gym...worked out with a trainer in the morning for 1 1/2 hours and in the evening I came back and worked out for 2 hours. My psychiatrist told me I had anorexia...I was still loosing weight. He upped my meds. He couldnt see that it was the meds that were doing it to me.
I had stopped taking Depakote and stopped taking Risperdol...I started to feel better. I was gaining wieght again, I was always hungry. But then I started to get tired all the time. I had stomach problems, skin problems and them in 2004 I started getting dizzy, fainting and having black outs. I couldnt concentrate I was always tired I started to get short of breath and my heart seemed to be pounding out of my chest.
I went to my primary to see if she could help me with my weight...I thought I was having all of these problems because my weight went up again. She sent me for a thyroid test at the begining of April 2004. my results came back the opposite of what she thought I was. I had hyperthyroid.
My test results:
t-4, total 11.2 (4.5-10.9 ug/dl)
TSH <0.01* so low they could not get a reading (0.35-4.94 mIU/L)
Free t4 1.78 (0.70-1.48)
t3, total 293 (60-181)
She immediatly ordered a thyroid scan and uptake. Which I had done on April 20th and 21st.
My scan showed no nodules or cold spots. But it was, according to my doctor, "grossly enlarged". It is almost 8 times the size it should be!
She refered me to an endo...I met with him right away and he told me he treats in an aggressive manner, especially people in my condition. He diagnosed me with Graves Disease. He double checked me for essential tremors and put me on heart medication, Inderal.
He told me the three options he would normally give patients, medication, surgery, or radioiodine. He told me I couldn't opt for medication since I couldnt go with my heart the way it was. He didn't want to keep me on heart medication for the time it would take for the medication to work. I didn't want surgery at all so I opted for the radioactive iodine. I know quite a few people who have ahd this done and they are stable now (within 6-9 months). I knew that surgery carries a great risk and I did my research on all the options.
I had my radioiodine therapy done on May 26th 2004. I went to work the next day...against my drs orders, he wanted me to rest. But I have my own office and bathroom so I could be away from everyone else. I am extremely sick though. I cannot keep anything down and have lost 5 pounds since Wednesday...in addition to my 28 pounds already lost.
I am still on Inderal but will stop once I have my follow up with my endo on July 6th. At that time I will go to the stat lab and have my blood taken and he will get the results the same day and we will begin my course of treatment.
This is my first time on this area of healtboards.com, :wave:
Last night, after what seems like years of suffering, I broke down in tears during prayer! I begged the Lord to help me through whatever this is, and today I found myself in this area of this site! Thank you Lord and thank you to those of you who have posted here!
For the past 6 months I've been fighting, what seems like an uphill battle. About 6 months ago, after an incredibly stressful time in my life, I found myself experiencing chest pains, muscle twitching, headaches, arm pain, racing heart beat, trouble swallowing, muscle tension, trigger points that hurt on my back, exhaustion, feeling cold constantly, shivering, trouble sleeping, numbness, bowel troubles...the list went on and on...Within one week I saw 3 Drs, desperate for help, KNOWING something wasn't right. My blood was taken checking my thyroid, full CBC, muscle wasting, rheumotism, and even for a heart attack. I even had chest X rays and EKGs done. Everything came back "normal." Initially I was told I pulled a muscle, then I was told I could have pnuemonia (scarring on the heart, with no bronchial symptoms), and lastly, anxiety and IBS! I was sent home with Serax and told to get back to normal life. I tried my best to convince myself that I was alright, but started discovering other problems....hair loss, and no cramps or breast tenderness around my periods which seemed so odd.
I visited my Gyno at this point seeking help, wondering if my breast had anything to do with my symptoms. After a routine exam of my breast he concluded "you're a healthy 22 year old, get busy living!"
I tried my BEST to forget about the pains and discomfort but after a few weeks realized things weren't any better, despite working on stress management.... weak arm and loss of sensation in my left arm wasn't getting any better, along with the laundry list of others things. I again went to an MD who ordered an MRI, thinking I had pinched a nerve or a tumor. I got myself all worked up after that scaring myself to death thinking I had a tumor....my anxiety was getting the best of me!!! After my MRI result my primary didn't even call me, he said "no news was good news." Weeks later I demanded I see him, and at this time he prescribed me PROZAC, of all things. (he also said, my MRI showed minimal central protusion at C5 and C6, but nothing enough to cause my symptoms.) He said because I come from a family of emotional women, I too would suffer unless I took the pill. I knew better, so I didn't do it! In the mean time I started seeing a chiropractor, desperate for help. She agreed that my neck problem wasn't that bad and started suggesting a balanced diet, low carb and high protein. She then did a nutritional analysis on me and suspected I had low blood sugar based on my answers! We're talking a simple questionaire and a paragraph I described my symptoms in! After 6 months someone FINALLY found something...what a relief. Last night, like I said I prayed that whatever this was..I would get through it...I miss my life so badly! I miss feeling good, happy and healthy! More than anything I want to feel my age....22, not 62!!!!
Throughout this whole ordeal I wanted to kill myself because I hurt so badly inside and out, and others looked at me like I was crazy, including my boss, boyfriend, and own family. I felt so alone and couldn't handle the pain, but knew something was wrong. I felt so BAD I thought for sure I was dying of something! Thanks to all of you who posted here. I don't know how much longer I could have gone on feeling so alone and in pain!
My chiropractor, who has listened to me FAR more than any other Dr (I've seen almost 7 in 6 months), has earned my respect and trust. She has encouraged me to get back into the gym ( I used to go EVERYDAY for 5 years, at 21% body fat and a size 5), eat complex carbs, good proteins, and stretch. She said that my birth control could be causing my low blood sugar, and has promised me she is going to get me through this, as a team. It's good to know there ARE people out there who care enough to listen and help!
Thank you again! Any suggestions would be greatly appreciated! God Bless....and I hope this gives hope to others close to doing what I almost doing!
[QUOTE=kiwichik]I see these posts are a month old but I am new to these forums and find them really great. Im from New Zealand and can identify with a lot of what different people are saying. In particular a lady who said she was 46 and had had a hysterectomy. I too have had a hysterectomy. I was diagnosed with Hashimotos when I was about 19 and have been on Thyroxine (our form of synthetic hormone) since then. Im now 47. I was literally told my thyroid had burnt out. I have my levels checked six monthly and mostly they are within range but I do beleive a lot of my health problems over the years are attributed to this. I have joint problems and degenerative disc changes. I have had achille tendon problems with operations there and on my neck for a ruptured disc plus elbow probms as well. I too have anxiety attacks and mood swings, and anti depressants have never helped. I was a normal weight till this was diagnosed and now am overweight by 40lbs. I cant shift the weight no matter what I do. and I have talked to others with thyroid probs who seem to have this problem too. I have never talked to anyone with hashimotos though so it is great to finally find someone after all these years. My husband thinks I am cracked also. He is sick of all that goes wrong with me, I have had heart probs as well. Last test showed an enlarged heart. I also get palpitations and have learned to live with them....gosh I am rambling ...but it is great to read other people's stories, Chow for now, Linda.....aka kiwichik[/QUOTE]
"pain in forearms that goes to pinky and ring finger, "...... I have psoriatic arthritis and have had these syptoms. The name given to the condition with thoses specicfic symptoms is "thoracic outlet syndrome." It often accompanies other conditions like arthritis, curvature of the spine, scoliosis, ....poor posture or an accident. My rheumy said the best way to deal with the numbness is to strengthen my back, helping to reduce the nerve compression.
I know that probably isn't the fix you wanted to hear, however, in the midst of people telling you are nuts sometimes, it truly helps knowing there is a name for the symptoms and the hell you are going through.
A lot of the symptoms and and the psoriatic arthritis was diagnosed after going through complications of a ruptured ectopic pregnancy that resulted in ovarian failure and early onset of menopause. From there my body fell apart. It's not in your head.... your symptoms are valid and real and many other people are going through the same situation... HAng in there... gtg Renee
All these stories seem to have the common thread of Doctors who don't seem to listen. I kept telling my Doctor no one knows me better.
I too, was of thin build until pregnancy sent the metabolism aschew. I had two children 9 lb 2 oz and 10 lbs even. I've often heard large babies have something to do with messing up the metabolism.
I long suspected something was up with my thyroid. I told my Doctor that my Mother had thyroid problems (that she left untreated). But at first the he wouldn't test me, just writing off my concerns, and then finally testing me after I worked extremely hard to lose 50 pounds through diet and exercise. (It was a lot of hard work, but I did it and kept it off for 5 years now)! But I still complained of low energy and just not feeling right so Doc, finally ran the thyroid tests.
But my thyroid levels were fine, he said.
Then 3 years ago at age 37, I had a T.I.A. (mini stroke) and was in the hospital. My Doctor was out of town and his associate intern was over seeing my case. A thyroid patient herself, I asked her to again test me. The results came back that I was Hypothyroid. I was put on Syntroid and though the levels were played with over the months, it really gave me my energy and zest back with in weeks. For about a year.
Over the next 2 years I kept feeling off and on these bouts with pressure in my throat and neck. Not painful, just bothersome. I'd mention it my doctors, but again written off.
Last August, I had the pressure again, only 10 fold. It caused my glands to swell, and I ached so bad in every joint. I had pressure and pain, and swallowing problems. I felt like I had run ten miles and my throat was trying to catch up. I had slight headaches, that old confusion and lightheadedness came back.
I called my doctor, who didn't even bother seeing me, he just sent me straight for blood work (I think he finally believes me that I really do know my body best). And those results came back with extremely high levels of thyroid antibodies (the endo said some of the highest he's seen). He admited this was more than a GP could/should be involved in and refered me to an endocronologist.
Of course it was Hashimoto's disease. Now I'm fighting with this doctor. I go through these cycles of the throat/neck pressure, swollen glands, sore throat, ache joints, fatigue, I will lose 5 pounds, without trying, and my carpal tunnel worsens. It will last 3-6 weeks and then stop. Often if he raises my syntroid, it will coincidently stop within that time. I'm up to .125. Last year at this time I was at .75
I think Hashimoto's can (and I read in a few places that it is true), go into a sort of remission and I believe when my immune system is waging war on my thyroid, the thyroid swells (not a goiter-but swelling) and this along with the antibodies cause me all my problems.
My doctor says no way. Hashimoto's isn't painful. And with synthroid I shouldn't have any symptoms. I've read a lot all over the internet where people are still having problems even with treatment and often pressure in the neck and throat is common.
But that pain and pressure is what caught the Hashimoto's in the first place.
I've had several tests done to rule out other things, addisons, lupus, even lymphnode cancer. I've had a sonagram of my neck. The Doctor's are at a point where they don't even listen to me.
I'd be very interested in anyone out there with similar symptoms or stories. I'm so glad there are others out there.
I think it should be enough that we have to suffer with this disease, let alone De-sensistized Doctors.
I feel like i should just type ditto... as my story is so similar to everyone else's on here... Thank God. It is nice to know I am not as alone as i have been feeling. But here it is in a nut shell.
4 years ago, I went to my gyne... and after the typical "girl" exam, she checked my throat and noticed a lump. I was then sent to my medical doctor... who sent me on to the endo (who by the way was a complete jerk with no bedside manner) He did several fine needle aspirations... and i was scheduled for surgery. I had a partial ********ctomy... and have been on Synthroid ever since. My dose has been increased and increased... and i am now taking 200mcg... without feeling any better.
As a matter of fact, the symptoms have taken an all time low here over the past couple of weeks. I have always been a relatively intelligent person, but now the brain fogs and lethargy have made me appear to be a complete dolt. I have gained more weight than i care to admit. Which is not good for a single girl... and I sit by a space heater.. and It is August, and i have been on a crying jag for the past 2 months. The bad days out number the good, anymore, and there have been moments that giving up has seemed like the only answer. People around me have noticed the changes... I have always been an upbeat, life of the party type of girl, and now can bring down a room in a heartbeat. They don't understand that this is a real illness. And i have gotten all of the well-meaning, yet useless, advice...such as.. "you just need to stop feeling sorry for yourself" Geez... why didn't i think of that.
My doc seems to be set, like most, on the TSH levels. I just had them done, but wont know the results til tomorrow. And he was quick to offer effexor for the depression. (which i hesitate to take) I don't want the side effects of a pill that might not be necessary if it is my Thyroid, not my head...
Well that is my story...
I must say that this website has been a wonderful thing. It helps knowing that i am not "crazy" and i am not alone in this craziness. I may not be able to stop the symptoms... but it is nice to be able to understand where they may be coming from... and that they are REAL. And, that there are people out there that really really UNDERSTAND what i am going through
Best wishes for all.... :angel:
Ok, I am in a real Catch-22 here. I was diagnosed with Graves Disease 10/2003. On Jan 15, 2004 I took the iodine treatment. My hyper went to HYPO overnight in April 2004. My first dosage of Synthyroid was 75 mgs. I didn't last a week. I had to beg my dr. to up the dosage as I was traveling out of the country for 10 days...and would like to be awake on my vacation. He gave me the "must be patient" lecture, and reluctantly took my dosage up to 100 mgs. How generous of him. Its now August 18, 2004. My tsh is still reading 27.35 which is rrrreeeaaaall low, and I am now on 200 mgs. for the last 3 days. I did 60 days on 150 mgs, so that I would be a patient little patient.
Guess what, my patience has grown short. Meanwhile, I am experiencing severe gastroententional problems. Severe diahrrhea, abdominal pain, pain around my liver.....oh I could go on, but I won't bore you. After talking to my family dr. (not my endo dr.) I said to her " do you think that maybe I am not absorbing the Synthyroid"? Since anemia is also a big problem, chances are I am not absorbing my vitamins and iron either. She agreed that I probably wasn't and wanted to know what the gastro dr. had to say about that. Well, I explain to her that I couldn't get an apptmt. with the gastro dr. for 4 months. She was appalled. By later that day I was given an apptm with the gastro dr. which took place yesterday.
As if I wasn't frustrated by the endo dr. Now I want to kill the gastro dr. I have gained 6o lbs since April and he tells me that a "low" thyroid isn't responsible for my weight gain. Like I wasn't depressed enough he has to lay that one on me. Then he says "I think you may have Crohn's Disease, but all Crohns people are skinny". Ok....no crap, they are skinnny. They can keep anything in them long enough to turn into fat. It seems that all I CAN keep in me is fat, because certainly the Synthyroid isn't hanging around long enough to do its job.
Am I the only person in the world that this has happened too. I can't seem to get either dr. to put the two together. The endo dr. spends all of 3 minutes with me. I actually made a list of my ailments and he tossed it on his desk. He totally did not want to deal with anything other than what the tsh was on my bloodwork. What a waste of my time to go to his office, when he can adjust the Synthyroid over the phone. Now I start a battery of CT scans, Barium work-ups, and a multitude of blood work for gastro dr. who "implies" that fat might be causing my gastro problems. Yeah I'm fat. But you know something, fat people get sick just like skinny people. Why can't drs. see beyond the fat? Why can't he put 2 + 2 together and get the whole picture here, that I have a gastro problem absorbing the Synthyroid and maybe IF I was getting enough Synthyroid.....I might not BE as fat as I am. God, I am so frustrated.
My family dr. is sweet and seems concerned, but she wanted to put me on Prednisone for the gastro inflammation, and I said whoa...you don't put a fat person with low thyroid on prednisone....I'd probably explode. Can anyone guide me? I seem to be chasing my tail and I am getting so annoyed at the medical establishment and their lacksadaisacal approach to hypothryroidism. I live in the Phila******a/Wilmington, DE area. IF anyone out there knows of a good dr. who might fit well with me, I am sooo open for suggestions. Thanks for letting me vent. But I do need some serious help. Don't I?
I am trying to understand this thyroid thing. I too am told my tests are normal, but suddenly this spring my hair and skim have gone nuts. TOTALLY dry, much hair loss and much breakage. I have bald spots on either side, underneath the thin layer of hair that is covering them. I am 54, female, post menapausal. I have read a lot on thyroid tests and none of it makes any sense, the numbers I mean. These are mine : t3 35, t4 8.1, tsh 0.9.
I had a hormone test and it was analysed by mail and the results gone over by an alternative pharmacist and she felt it was thyroid and told me to take the natural thyroid med, which I am doing. Since about late July, no imporvement. I also have terrible memory and brain fog problems. (Have an advanced degree so used to be very smart) Now my memory is soooo terrible I wonder if it is not early Alzheimers.
Trying to figure this all out as am not making much money, no health i surance, so can't just go to dr after dr.
I don't have a lot of the other thyroid symptoms tho.
I posted earlier in the week. I was recently diagnosed with thyroid nodules when my doctor felt enlarged thyroid during physical exam. I have felt poorly for 6 months. My April blood work showed no thyroid problems. I have been dizzy, joint swelling and tingling in hands, feet and face and a 10 pound weight gain. I have pressure on right side of face which makes my ear feel blocked nd my right eye feels funny. My primary has been trying to get me feeling well, but the blood work through us off. She has sent me to all kinds of specialists and I've had MRI's and a myriad of tests. An ultrasound showed multiple nodules, one being large on the side of my face where my pressure is. I see an endocrinologist this week. My question, it appears, from reading this board, that regulating thyroid disorders is not an over night miracle. Since I don't really know what exactly my thyroid disorder is, I realize the solution will take a long time. Once I get this on the road to some kind of recovery, will my weight gain reverse and my tingling stop? I realize the weight till not come off on it's own, but the gain was not caused by overeating. If it wasn't caused by the thyroid, it was caused by feeling poorly with not enough energy to keep the weight off. My only wish now is to show some sign of feeling better.
I am not new to Healthboards and have been browsing at and have posted and replied to messages on the Arthritis board. My last one was earlier in the summer "Intense Hand Pain". In a hazelnut shell, since March I have had severe pain in my palms with bumps, ridges on the palm-side knuckles. The pain runs up my fingers into the middle joints. I awaken during the night if I make an involuntary movement with my hands. I have had night sweats (2 to 3 per week on average), malaise, and now I am very, very depressed. My neck started feeling uncomfortable recently and I think I may have a lump on the right side under my jaw line, swallowing seems awkward at times. My internist sent me to a Rheumatologist who after running tests determined I don't have RA or Lupus, but I do have a high titer (ANA). She perscribed several anti-imflammatory drugs that have not helped! She has an awful bedside manner and I actually think that she thinks I am making this up! I suggested Lyme disease and she actually laughed. When I mentioned that I read an article in Newsweek on undetected Lyme (that resembles some of my symptoms) she became defensive and dissed the publication! X-rays and MRI have shown NOTHING! And, I cannot understand, I am in horrible pain!!!!!! The swelling comes and goes, which is weird! I know! Friday, fortunately, when I went in to see her (after 2 months) she did feel and see the swelling. My husband accompanied me, but the doc was like, "there is nothing in the xrays or mri that shows you have anything" and drugs aren't helping. I lost it and started to cry, I felt like such a fool! I am starting to wonder if I am imagining all of this. Because she did note the bumps and swollen areas, she wants me to try a 6 day treatment of Prednisone, which I have started today, and I am very nervous. And now, after Friday, I feel like my husband doubts me. I have been crying with great regularity for the last month. I imagine that life is not worth while if I am in such pain, physically and emotionally.
I just turned 44. Until these symptoms started I was a very healthy active person. I have never been overweight (and am not), I used to exercise everyday. I still run 12 to 15 miles per week and walk. Used to do more, but pain is aggravated with other activities now. I eat very healthy foods, always. I still have regular menstral periods and realize that I will experience menopause any time. Could this be? My ob-gyn says that she has never heard hand pain as a symptom of menopause. My TSH was normal in April when I was tested. I just cannot accept the fact that this sudden onset of symptoms comes with no clear diagnosis yet. I feel like I was thrown in the middle of the ocean with a cheap plastic ring inner tube and I'm about to lose that!
I will pick up a copy of that thyroid book mentioned and hope that there are answers for me in there. Thanks for reading my ramblings!
I had hyperthyroidism and I miss it! :mad: That may sound stupid to some of you, but what a fabulous disorder. I lost weight, I could stay up all night and party--because of the insomnia, granted because of the rapid heartbeat I couldn't dance too hard or fast, but hey, if I took an extra Atenolol I had a fighting chance at doing just that. I went down to a size 4 from a size 10! Are you kidding me!? I Loved having hyperthyroidism. It was the Graves' Disease that SUCKED! The bulging, dry eyes, the acne prone skin. That wasn't cute. But If I knew then what I would be going through now...I would have NEVER undergone the RAI therapy...NEVER! This is misery personified. I am SO VERY depressed. The weight gain, UGH! The depressing news about Synthroid not helping me to lose the weight. That even with diet and exercise I won't lose the weight and will more than likely gain more and more. Which is insane to me, especially since everytime you turn on a news program it's reporting that the U.S. is the FATTEST country in the world. Well, no wonder when you have doctors out there destroying your thyroid and not doing anything to help you knowing that you'll gain a tremendous amount of weight. You kill yourself dieting and exercising and it's not going to help you. What's the point? Either you have to go through Liposuction, which the insurance company won't pay for. Or become anorexic. It's so depressing. I have a closet full of beautiful, pricey new clothes that (according to the "experts") I will never be able to fit into again. EVER! I just cry all of the time.
I would like some help from anyone who may be able to assist. Last April I was diagnosed with hypothyroidism. I went in to my doctor last July (2003) to find out why I had been so tired and gaining weight even though I was consistently exercising. I was told that I was pregnant and they left it at that. Even though the nurse asked me initially if I had ever had my thyroid checked. Which of course at that time, the answer was no. Anyway, the symptoms I mentioned were all dismissed and attributed to the pregnancy.
Last October I got really sick and suffered from severe pre-eclampsia and HELLP Syndrome. It was my first pregnancy and I lost the baby girl because I was only 19 weeks along. I lost my baby girl :angel: and now I am losing my grip on being able to stay in shape despite the fact that I try everything I know to try. Afterwards, I noticed that I began to gain weight again. No explanation for this seeing as I had never been an overeater and I stayed busy and always have watched my weight. This was very parculiar to me.
Fast forward to April when I went back for a checkup with my ob-gyn. I had to request my doctor to test my thyroid to see if there was a problem. Low and behold, my TSH level was up to 23.54 well above the norm. I was truly angry because it was never checked whilel I was pregnant and even afterwards, I had to initiate the testing. Only to find out that there was really something wrong.
Here lately, after I went back to my internal medicine doctor to get a check up. My TSH went down to about 3.68. However, after that appointment I began having some of my symptoms again. The fatigue came back, the dry skin, the decreased libido, and the weight gain again. Here I have gone from a size 8 to a size 14 within the last year. This is truly depressing! :mad:
I am trying to arm myself with as much information as possible before my next appointment which is on October 15th. I have been reading some of your postings about t4 and t3 replacement and armour. I want to know what finally helped those of you who suffered from extreme weight gain and other lingering symptoms. Please help as I am desparate and I feel extremely depressed on most days. Especially when I have to get dressed when hardly nothing I have fits properly. HELP!!! :eek:
Hi Mary - I read your 9/13 post with great interest. I am so sorry you are going through this too - whatever it is! You are much younger than I - I am 52. I don't think I should be this bad at this age either, however. We do, indeed, have a lot of the same symptoms. My hands really hurt like it sounds yours do with my "bumpy, knot" kind of things on the top part of my hand. I also have night sweats but I have had a full hysterectomy and take a very low dose hormone for the hot flashes so that explains that for me. My menopause started at age 46 and I had hysterectomy at age 50 cause I was having so many problems but no problems like what I am having now or what you are having so I don't believe that could be your answer either! I had not mentioned this in my post, but I, too, have difficulty swallowing some times. I don't have to have food or drink for it to happen. It feels like something stuck and won't go down. After about 20 seconds or so, it goes away but is very uncomfortable for those seconds. I don't notice any kind of knot or anything around the neck area though. I want to see a Rheumatologist but I am trying to do what my family doc says to do. I don't want it written in my medical records that "patient did not follow doctor's orders". That kind of think will follow you around. I am in the legal field and have to read many medical records and have seen that before. I believe my doc thinks I am making this up too. She cannot understand what a horrible struggle it is for me every single day to get up and move around. I was late for work yesterday by 2 hrs. 45 min. because I did not get up early enough to allow myself at least 2 hours. I am very lucky my boss is very understanding. But how much can she accept it as I am the only other person in the office.
I also have read about Lyme disease and thought about that too as symptoms are very similar so I don't think you were wrong in asking about it. Aren't we supposed to be part of our solutions? I wonder if I have beginning RA. I did have blood work which was to check for RA about 1-2 years or so ago and was told I did not have it. I do have osteoarthritis. I have not had any tests as all this started around the first of last year. I have only in the last 3-4 months started to really get worried that I am not getting better. I truly thought the thyroid hormone was going to do that but it has not. So, I must try to do something about it - following up with doctor and doing what she says to do. But I am tired of nothing happening. The PT I went to on Monday was absolutely a joke! The guy who worked with me did not show me anything that I don't already do on a daily basis - not trying to be a smarty but if I did not do them daily, I don't think I could walk. A chiropractor gave me a printout of exercises and stretches 5-6 years ago and I have been doing them ever since. For years, I have had low back problems from time to time (osteoarthritis I am told) but that is much worse now too. I am going to PT again today and if he doesn't do something that I am not already doing, I cannot see wasting my time and money with it. I did try. I was truly hoping that when my thyroid level got right that I would feel better but I am feeling worse with every day that passes. When did your symptoms start?
Thanks for reading. Hopefully we will both find an answer soon. I am going to aggressively try to see another doctor. I hate to do that because you never know what they will put in your record! I have seen some bad things that can only cause problems down the road when other doctors read them. I will keep you informed and you please do the same. I will be thinking about you.
Okay, I've been on the board a little while now, so I guess its time to post my story. I apologize for not posting it sooner.
I'm a 27 year old mother of four wonderful-but VERY active kids. Ages 9, 5, 2(3 next month!), and 4 1/2(-almost 5 months). I grew up in a violent family. My dad was an alchoholic with schizophrenia. When I was 18 months old, I was beaten very badly- and it caused me to have speech problems. My body also developed its own defense mechanism against the abuse-it would shut down. The slightest touch would send me into an unconsious state-sometimes I would have seizures also. I eventually outgrew the passing out and seizures. And it only took about 10 years to teach me to talk right.....now they can't get me to shut up.
Growing up, I always suffered from migranes and have always felt hopeless. No surprise- one day I collapsed in the cornfield and had to be carried to the house. All I could do was cry. I hurt so bad. I was diagnosed with migranes, depression, and anxiety. I think I was around 14 at the time. I took my medicine as long as the doctor gave us free samples. If he didn't- the prescription wouldn't get filled (with the exception of one time- we got half the prescription filled). This wasn't because I didn't want to take the meds, but because we had no insurance, and my dad refused to pay for the meds. He was always against us seeing doctors- when I fractured my foot, he made me wait a few days before he would let me go to the doctors.... thats just how he is.
ANYhow, I survived. I had my first son at 18. He had to have emergency stomach surgery at 2 months, for pyloricstenosis. He had been misdiagnosed for nearly two weeks before a doctor would actually listen to us and do something. At six months he had surgery for a clogged tear duct. At 3 years, he was diagnosed as legally blind. At six yrs, he was diagnosed with ADHD. He's a real fighter!
My five year old son has eczema and breathing problems (they are hesitant to call it asthma- but they treat it as asthma). He was diagnosed with ADHD and considered disabled because of its severity when he was only 3. Don't let him fool ya though- the kid is an absolute genious. I honestly think he's smarter than my husband and I put together!
My daughter will be three next month. She's healthy- but she lacks in coordination and balance. last saturday she fell from the back of the pick up and broke her nose- and needed 5 stiches for the huge gaping slice down her nose. Yesterday, she tried to ride her hot wheel bike down the steps-she never learns!!!!
Anyhow, After I had my daughter- I started having these bad feelings. It would happen suddenly. I could litterally feel my body shift down into an awful state of exhaustion. Permanant exhaustion. I brushed it off as the depression. I was a complete wreck. My therapist recommended I have a physical. She said I sat stiller, talked slower, and moved slower than anyone she had ever met. I had the physical, and they found my liver enzymes high. So I was sent to a GI doctor. The GI doctor found a thyroid nodule, and monitored my enzymes for a while, then did a liver biopsy.
My baby, I call him my miracle. He's not quite 5 months. A week- week and a half after I found out I was pregnant with him- I found out(from the above mentioned biopsy) that I had a rare liver disease that was uncurable. In a nut shell- the doctor told me they didn't know if or when I would need a transplant, whether I would make it to get one, if I would make it through a transplant, and if I did- how long I would survive on the meds afterwards-because the meds make you so seseptable to illness. When the doctor found out I was pregnant, she told me pregnancy makes the disease worse. Surprisingly- my enzymes started looking better though. But, then I got bad news from the baby doctor. The ultrasounds showed low fluid, two cysts on my sons brain, and he was very tiny (were talking down by the 2nd and 3rd percentile tiny) in the uterus. She said to expect a VERY VERY tiny baby. The doctor also told us their was a chance my baby could have down syndrome. He beat the odds though. He came out 19 inches, 7 lbs 13 oz. Healthy- other than high billirubin (and yes that caused me to freak out-because of my bad liver and the fact that none of my other kids had high billirubin). He has had a couple ear infection in the last month. And he was down at the fifth percentile growth wise for a while there- but he's up to the 25th now and doing good. My little miracle!
About a year and a half went by after finding the nodule and nothing else was said or done about it- then I mentioned it to the GI doctor (trying to find out what I should do). She had some tests done to check it, then refered me to another doctor in the same office. He looked over my file and told me it had only been there for half a year- and for a while I though I was loosing my marbles- loosing all sense of time....but I know how long ago the GI doc found it- I WAS THERE, he wasn't. They did some more tests, and a biopsy. He said he thought it was benign, and that it was a large inflammed nodule-but he wanted a second opinion. SOOOO I saw an endo doc. He said the tests couldn't guarantee me that it wasn't cancerous, and he wanted to run MORE tests. He said he would eventually (soon) want to do another ultrasound,to see what the nodule was doing. He said if it was smaller- I could keep it. If it wasn't- It was outta there. He also noted that I had characteristics of diabetes- and wanted me checked for that. Now- thats looking grim for me.
I don't blame ya if you stopped reading- but if you stuck in there, HOPEFULLY, i'll finish up soon!
So, now I have scoliosis, degeneration of the spine, arthritis, depression and anxiety, migranes, joint pain, bad liver, large inflammed thyroid nodule, and possible diabetes coming on. I have been kicked, stomped, punched, drug, picked up by my hair and shook. I have been cused at, called names, spit on, talked about, talked down to, put down,set down and left for dead- and the only reason I hang around this darn place is to see what will happen next (LOL dont take the left for dead part seriously!). I hurt all over. I'm exhausted ALL the time. My hair is falling out. I talk, walk and move slow. I bruise easy. I have spider veins and get tiny blood spots under my skin. My memory is absolutely awful. I can't concentrate. I have crushing feelings on my chest where it hurts to breath. My right arm doesn't want to work right- and feels like its plugged up. Also, a few years back I had a few abnormal EKG's- makes me wonder about that crushing feeling in my chest. Also, my wounds tend to heal really slow. And My feet and ankles are just killing me! I keep talking myself out of having them checked. Several years back I went through similar pain for two weeks- and when they xrayed my ankles they found one broken and one with bricitis. I don't sleep good and I have gained alot of weight (when I step on the scale it screams ONE AT A TIME PLEASE). And no matter what I try, I can't lose the weight. I feel like I've been run over by a train- and I just want to give up.
As for family members. My dad has diabetes, alchoholism, mental illness, and kidney and liver failure.
My mom has diabetes, strokes, epilepsy, high blood pressure, and had cancer.
Also, my grandpa died of leukemia. My grandma had glaucoma and went blind. She also had cancer- as well other illnesses.
#1- Kidney failure, thyroid nodule, diabetes, and high blood pressure.
#3- hypocondriac-sometimes I wish I were her. At least my problems would be gone when I didn't want them anymore.
#4- other than acne-she's been healthy
#5- cancer once, and being checked now- they think she may have leukemia or lymphoma.
#1- Not sure, but I think he has high blood pressure- because the doctor told him he needed a rest from his job...not sure exactly why.
#2- Sleep apnea
#3- If stupidity and having a lazy wife were illnesses race-he'd have the world beat.
And yes, you found out my last problem- I like to be frank with people. "If the truth hurts- cover your ears!" Yup, thats me. I don't mean to offend people (well-most of the time I don't), but sometimes I do- so I want to apologize ahead of time.
Well, better go now
Thanks for listening
Help- I am new to this board
I have had Hasimotos Thyroid, for over 20 years-have blood done regularly-Ups and downs- too high / too low
and they just play with the dosage-once i nearly killed myself by stopping meds. Wow body temp was so down-gloves 2 pair of pants to keep warm.
Does anyone know of any diets that we can follow- I recently have been diganosed with RSD 2003 Having trouble with weight can loose 5lbs then no more?
Help if you have any ideas that could help me. Trying holistic approaches to both RSD and Hasimotos. Tired of Doctors who just want to give DRUGS all the time looking for someone who will listen to my description of how I am feeling.
hope to hear from you all soon.
Hi, I'm a 21 year old college student and I have Hashimoto's Disease. I don't want to waste a lot of your time going through my story, but I really feel all alone in this and I'm hoping someone out there will be able to help me.
When I was 13 I was diagnosed with IBS... at 16 I went to a neurologist b/c I started to have severe memory lapses... I would forget words and chunks of my memory. I remember the first time it happened I was asking my dad to fix something for me and I spent 10 minutes trying to remember the word fix... it took me 3 days to figure out what I had been trying to say... I remembered the word repair though.. how random... anyway the neurologist diagnosed me with chronic migraines and told me it was probably due to stress. I went through a number of other small things that didn't seem related, but what scared me the most was at 19 I started going through pre-mature menopause. hot flashes... lack of menustration... you name it... my parents have always thought that I was a hypochondriac so they never really took many of the things seriously... just assumed that it was my personality that was completely spacy and forgetful. But it killed me b/c I'm so clear and articulate just trapped in a complete and total fog. We finally went to a doctor about the menopause and he referred me to an excellent endo. Unfortunately I was moving only months after I found out that I had this disease. My doctor and I have been trying to treat me long distance, but it just isn't working out... I'm losing it... I've never felt this bad in my entire life... I'm failing classes... I'm a theatre major and I can't remember my lines... I'm in constant pain and most mornings I just can't get out of bed. I'm trapped in this terrible fog again and I've been so depressed lately. I'm going to a doctor this Thursday, but he's just a family doctor with no history of Hashimoto's Disease so i'm sure he won't be able to help, but maybe he can set me up with a decent endo. here... does anyone have any suggestions of what I can do? I feel so disillusioned... like I'm just wasting my time. Any ideas? I'm really open to anything that could make me feel better.
Here are a list of my current symptoms... if you can help me feel better with even one I'd owe you :)
loss of apetite
exhausted all the time
trouble staying awake in class
Enlarged thyroid gland
heart beating faster
Shortness of breath
stuff in my throat
forgetting how to pronounce words
forget what I'm saying in the middle of a sentence
too disoriented to drive
eyes sensitive to light
pain in the neck-like fire ant bites or needles
tightness in chest
my ears ring
trouble sleeping at night
numbness and tingling hands
cold all the time
I've been on and off synthroid every time I go on my levels shoot out the roof... and they take me off and then I'm miserable.... I can't seem to find the correct dosage.... anyone else have this problem? What did you do?
Hi my name is Natalea. Im 18 and was born without a thyroid - this was picked up on my 5-day heel *****. I also have hereditary angioedema. I feel rather guilty when I read posts by other hypo people as ive never really had any problems with my condition other than dosage issues etc.
Well I dont think that lacking a thyroid has made me any different to anyone else: ive had normal growth (physically and mentally), had good grades and generally been a happy wee thing. The only thing thats really set me apart from my friends is the fact that i have to take a couple of pills every day.
In saying that though ive had my share of hopeless doctors and depressing hospital visits. The doctors that are so fascinated by your condition that they feel the need to change your meds, diet etc, have to be the worst.
One bit of advice I have about controlling hypothyroidsim is to arm yourself with information. Generally speaking most doctors have no idea about hypothyroidism let alone how to treat it: this is how mistakes are made. If you read up and research your conditon and become as knowledgeable as you can be, the easier it will be to treat. It also makes it less scary when you know what your dealing with.
If anyone wants to ask me any questions, please feel free to reply :)
Hi Obudramaqueen. I was diagnosed with Hashimoto's Disease back in the early '70's. I had no idea I even had it. I had gone into the Dr. for my annual check up and he discovered the lump in my throat. Hashimoto's is an inward growth on the thyroid glan and is not very visible like a goiter. It enlarges and pushes against the esophagus and wind pipe. I can't believe no Dr. has suggested you have it operated on. I had mine done about a month after it was discovered and with meds I have been doing fine. They removed one side of the gland and the bridge between. It is actually 2 small glands joined with a 'bridge'. The test that he ran was a PBI count (Protein Bound Iodine). My mother also had the disease, but some Drs. say it is not hereditary, yeah right!!! My older sister was showing symptoms of Thyroid problems, but all the test were negative and when I told her to have the PBI test the Dr. said it wasn't necessary that it did not run in the family just because 2 of us already had it. As a last resort he ran the test, and guess what, she had it. Her's was controlled with Synthroid. I have mine checked every month with the TSH and have had to have meds adjusted. Right now it is out of whack or the Dr. is, one or the other. The drugstore said they had stopped producing Synthroid and I was put on Levothiroxin and have had trouble ever since. I have just recently changed Drs. and will have this checked out. I have recenly been diagnosed with Osteoporosis and one of the causes of this can be from being on thyroid medicine, as well as other conditions. So I would suggest anyone with Thyroid prob. to have a bone density test done. I had no idea I had Osteo. until I had a compressed fracture of the L3 disc. Hope this gives you a better understanding of the disease.
I am 43 years old and I have no thryoid now. It's a long story, as most of yours are:
We have three children, now 10, 7 and 5. After I had my second child, I started noticing a feeling of there being a lump in my throat when I swallowed. I went to my primary care doctor and she said she couldn't see anything there, so you are fine and you can go home (first pat on the head). All she did was look down my throat and feel my glands. The sensation would come and go, so I though maybe it was allergies.
After I had my third child, I started feeling warm all the time. In addition, I had a few of the other symptoms, like frequent bowel movements etc. Knowing the feeling of warmth was a symptom of hyperthryroid, I went to my primary care doctor (different one this time.) She ran a T4 level and found that it was in the normal range (hah!) She was going to run other tests, but with a family of three children, I just didn't bother going back. The feeling of being warm all the time passed and it just didn't seem that important.
Finally, in 2003 I again felt that lump in my throat, but it seemed to be worse. I went to my primary care doctor again (different again since the second doctor's practice disbanded). This time I saw one of his associates. This doctor really listened to me. He said he couldn't feel anything in my thyroid and that it was probably gastro-esophageal reflux disease (GERD). He told me to take Zantac, but just in case, he would order an ultrasound on my thyroid. Bless him!
Turned out there was a nodule in the left side of my thyroid. They did a needle biopsy that was indeterminate. So they scheduled me to have the left side removed and biopsied. It turned out to be hurthle cell carcinoma. This is a really rare form of thyroid cancer; only 3 in 100 cases are this type. The endocrinologist recommended removing the remaining half of my thryoid. My case is also unusual in the fact that most people diagnosed with this cancer are in their 50's and 60's. So listening to your body is very important; only YOU can tell when something is off, even if it's only off by a little bit. The reason no one had ever felt the lump was that my thyroid was mostly under my collar bone. To feel the lump, I had to be lying on my back, which is how they do the ultrasound after all!
This cancer grows very slowly, so it has been there for quite a while. And looking back, I can say there were other signs that something was off...not by much, but some. Feeling dizzy at times. The frequent bowel movements. Shaking hands (which I have had all my life; I have an essential tremor, so I just figured it was more of the same). Dry skin (ditto..always have had it). Bowel problems (diagnosed with IBS in college, so figured it was more of the same). Problems with blood sugar (GD in first pregnancy, so was figuring I was pre-diabetic). Yeast infections due to the same.
I have been on Synthroid since the last surgery and the endocrinologist has been working to level me off since then. I gained a lot of weight after the second surgery, but have lost some as she has upped my dosage. At my last visit, my weight is still above where it was at my second surgery :( My blood pressure was up and I am once again battling yeast (I highly recommend Twin Lab's Yeast Fighters supplements...so much better than that OTC cream!) But I am feeling great and hope to keep on keepin' on.
I have had problems for a while with my Thyroid. Just 1 yr ago I weighed 120lbs in which that was my weight before I had 4 C-Sections. So even after 10 yrs of my last child I was tiny. I even got to wear Leather pants!
Now I have moved from the Boston area to CT and within the past year I am up to 170lbs.
I am seeing a specialist for this and my dose of Synthroid is 125mcg/2 pills a day. It seems to be a very high dose and they most likely willl keep going up. My body looks like I gained weigh yet my face feels like my entire throat is totally swollen. Thyroid disease is so tricky and seems to take forever to get it right. I am know basically on my own. I have been on my 2nd marriage for 4 yrs and my husband always says, You are not the person I married, You should go to the gym, you should go for walks. So, There is no support and I wanted to see if anyone gets this from spouses. It hurts really bad when you know you can't do a thing about it.
first of all,i want to thank me for finding this site,its the best thing thats happened in a long time.well ill start by saying my problems started when i turned 40 im now 44.for 4 years i have been on syntroid,the doctor said i had to take this medicine for life. didnt know anything about hypo.so i never took it to serious,i just took the little pill everyday different times sometimes missed a day or two.since i have never really gotten sick untill i turned 40.
ive always felt that when i got sick my immune system would tackle the problem and get rid of it.(ignorant)anyway since i didnt take it serious i still drank liquor every now and then.(is it ok or no?)anyway in the last 6 months i have gained 30 pounds i have been feelinf pretty miserable with all the symtoms mostly depresed and worthless with no drive for nothing.finding this site has really helped me i thought i was alone i felt like it was the end of the road for me i had no idea this thyroid problem could be so complicated.i only ask for more knowledge about this and advice would be appreciated.thanks to all that reply.
I am so glad to find this site and thread!!! My story is I had thyroid surgery in June 2004. I had my whole thyroid removed. I figured no big deal, having it removed since they found a nodule in my throat and the biopsy came up positive for cancerous cells. After the surgery, I was in the hospistal for about 2 days or so.. I was going to leave wednesday afternoon. Before they discharged me, my hands and legs were feeling numb.. and the right side of my face was numb and tingle.. It was a very weird feeling!!! So, I pressed the button for the nurse and said I feel like i'm gonna pass out but i'm not and my face is twitching and numb.... The nurse came and did the regular routine, they checked my blood pressure, checked my temperature.... took some blood for blood work...
And they realized that my calcium was a tad bit low... so they gave me some calcium.... and right away.. the numbess was gone... but they suggested that I stay another day in the hospital for monitoring..
Everything seemed fine through out the night and in the morning..
As they were gonna discharge me thursday afternoon.. same symptoms came back.. the numbness and the twitching... But they said, it is normal, and prescribed thyroid hormones (cytomel), calcium (over the counter supps)...
and off I went home..
Still feeling groggy and all... Went home.. rested.... watched some tv.. had some food... and then slept... through out the night I fell odd.. felt like my hands and legs kept going to sleep.. and feeling numb.. and tingly...
Woke up around 10am...... was only able to get up then... And I thought it was because I got up too fast... felt dizzy.. and right in the back of my neck on the right side and top of my head.. i felt this complete numbness over come me.. then my whole left side went numb.... I started to panic !!!
I woke my bf up and said.. quick we need to go back to the hospital now!!!
As I tried to get dress.. it was hard.. my limbs... were completely numb!!!
And my face started to twitch.... my words started to slurr.... It felt as if I was turning down syndrome. my face felt like it started to drag down my face.. the tension was so intense... I barely was able to speak...
All this time.. my bf called the taxi... (now I wish I called the ambulance)... but we all thought... hospital is not that far.. we can get there faster..
Got to the hospital.. tried to explain to them that I was admitted 3 days ago.. for thyroid surgery.. and that I need assistance quick....
By this time... my left arm was all twisted, I couldn't get it back straight.. my face felt like it was going to drop to the floor.. I was slurry my words so badly and i felt dizzy.. my right side of my face kept twitching.. then my whole body started to twitch!!!
The whole time I was in the emergency room area....... nurses barely came to make sure I was ok... and it took them 5 hours before they found my profile and have a doctor to come see me........ all this time my whole body was twitching so much to the point that my left arm almost twisted towards my back and my face felt like it was totally diformed!!!
All this in the end they tested my blood work... and found that my Calcium was low and they gave me some calcium through I.V. and quickly then my whole body relaxed... the tension in my face felt like it was melting.... twitching stopped.. no more numbness... and I think I passed out then...
Woke up.... felt normal again...
I am still experiencing some twitching and numbess now-a-days.. And I know it does have something to do with my calcium being a tad bit low...
Like now.. My right side of my face is twitching near my cheek and eye lid..
and my upper lip twitches to the point it tenses up .....
Again.. I went to have some blood work done.. waiting on results....
But I am sure my calicum is low again..
Funny, how when you start taking medication to replace something that was taken out... your whole body simply reacts right away.. Medication has so much affect on your body once you start to rely on them....
naomie.. *hoping things get back to normal soon*
Well every case and every operation is different. Now in my case I had a goiter and a very large one. So in my case they had to remove some of the parathyroids to be able to get most of my thyroid removed. And you will find that is usually the case with some operations that sometimes other things get removed or damaged to do the job they need to do properly. Don't forget the neck area is a narrow area as well so I'm sure that is no help in situations like these.
will tell you my story :
i was diagnosed of GD aPRIL 2001 after making the thyroid scan .. and my T3 AND T4 tests were triple higher than the maximum ref range ,i didn`t know at that time what does GD mean??i went to a famous and very crowded doctor which i used to stay in his clinic sometimes till 3 a.m. waiting for my turn....when i was first diagnosed my whole family members were not supportive at all ..because i think they believed that i look good then i must feel good!!!! my father is a pharmacist and he believed that GD is not a serious disease and it is all in the head although after having those freaky panic attacks which may wake them up in the middle of the night!! i took carbimazol first and beta blocker but i had allergic reaction to the carbimazol that my hands and legs got swollen all of a sudden then the doctor changed it to thyrocil which i started with 300 mg a day ...doesn`t having supportive people in your life increases ur stress and anxiety and accoringly the GD symptoms ..i turned to be a monister(very nervous and rude) ... my tests became better in 2002 till the T3 and T4 reached the nomal range (not hypo) i never reached hypo ....then i started to have some sympotms like severe IBS , severe depression and muscles aches all over ...doctor syas i should take it off ( surgery)....i didn`t agree because i didn`t like the idea of being hypo forever ..so i went to another famous doctor who refused any discussions but RAI ...i was about to do it but i changed my mind because it may affect my whole body(radiations!!!!!!!!!) so i went to a third doctor who gave me some pills for my digestive system which didn`t work actually and my muscles case got worse ( this was early 2003) i was so confused at that time going to many doctors and no result...no body is supportive ..left my boyfriend..everything was really bad..my collegue at work told me that i have to visit a psychiatrist ..he helped me and took me there ...i started taking "CIPRAM" wow it is amazing after two weeks i started going out again ..i don`t feel sad anymore and i used to take some digestive medicine and antiinflammatory(feldin) for my muscles ...i started feeling better ..i took cipram for 5 months ..i felt great...my thyroid tests were ok except the T.S.H test wich is always 0.01 !!!
i knew another guy ..i liked him ( he is my fiancee now and will get married in few months) i passed through stressful period early 2004 ( they always drive me crazy..soooo tough) then in April 2004 i started feeling fatigue and palpitations so i knew it ...damn thyroid..i made my tests April 2004 i found them (T3 AND T4 )also triple the normal....started from all over again thyrocil 200 mg and 60 inderal...my fiancee is a nice guy , he takes me to doctors ( my parents didn`t do that at allllllllll) but i guess he is not aware of the case because he is tooo busy to concentrate with me...he is an engineer and he is busy with his masters studies..i lived in hell since April 2004 ..i made other tests in 1/2005 as follows :
T.S.H 0.01 0.35-5.5
T3 4.5 1.5-4.5
T4 1.6 0.8-1.9
BUT i started to have some really bad symptomes...my body shakes and vibrates , my teeth aches , muscles aches all over even my fingers hurt, my toes got numb alot especially during sleep!!! i have depression again :0( , anxiety , insomnia , and digestive problems....i went to my doctor and he asked me to do the Rheumatoid factor test and ANA Test ..i made them and they were negative...i`m too tired to do anything even to work...he says that i have nothing wrong ( like my family say!!!) my pain and fatigue increased so i shifted another very expensive doctor who says that i have myocits ( muscles pain due to graves) he made me uric acid test which was ok and some antibodies tests which showed that i have microsomal antibodies 195 and the normal range maximum is 40 !! ( what does this indicate???) we started another treatment 10 days ago which is as follows :
steroids small dose
thyrocill 300 mg
eltroxin 50 mg
i still doesn`t feel ok and extreemly in depression that i cried all night long yesterday..i feel i`m 80 years old lady although i`m 29 ...my family are not supportive ...my fiancee is busy....doesn`t know what to do..do i have another serious disease!????i don`t feel like living any longer...i`m fading away!!!
PLEASE I NEED YOU ALL TO HELP ME ...WHAT SHALL I DO??
I am new to this and I’m learning a lot but getting even more confused about medications and tests I should have done. I wanted to tell my story and ask a few questions.
I am realizing that basically every complaint I have about my health could all be coming from my hypothyroidism. I am 25 and was told I had hypothyroidism 7 yrs ago after I complained to my family doctor about losing my hair. She put me on Synthroid and then never mentioned it again. No regular tests or anything. I just assumed this was normal cause I didn’t know any better and didn’t know to have more tests done. I still lost my hair but figured I’d have to live with it. A year later I started having burning in my back between my shoulder blade and spine. Doctors couldn’t find a reason. A few years later I started having arm, wrist and hand pain. After 2 family doctors, 3 orthopedic doctors, 1 neurologist, 1 chiropractor, and 3 physical therapist, they finally said I had cubital tunnel syndrome in my elbow causing my hand to burn and go numb. I had to have surgery so they did blood tests. Well they found I needed to increase my Synthroid and never mentioned my hypothyroidism again. I had the surgery a year and a half ago and it didn’t help one bit. It’s starting on the other side now. I am getting to the point where I can’t even work because my upper back and wrist hurts so bad. I started researching on the web and thought my problem must be from trigger points or possible thoracic outlet syndrome. After more research I found those problems are sometimes misdiagnosed and could be from hypothyroidism. I also learned about all the other symptoms. I have most of them. I have extreme hair loss from my head and eyebrows, joint and muscle pain, bloating and constipation, psoriasis on my scalp, adult acne, constant fatigue, depression, and unexplained weight gain. I’m a fairly small person and I’ve gained 15 lbs in the past 6 months even though I eat healthy and do weight training/cardio 4 days a week as I’ve always done.
I asked my doctor about my constipation recently and he finally said it could be from my thyroid and is sending me to get blood work. The thing is that he never shows me the results so I have no idea what he is testing and where I am or where I should be. He doesn’t listen to me very well and always rushes me out the door. He doesn’t like to give me referrals either because I asked for referral to an endo before. I’m afraid he won’t test my T3 levels and whatever else he should test for. I don’t know of any good endo’s that will look into that either. I want to try some of the other medicines that combine T4 and T3 because after reading these threads it sounds like people are having luck with that.
Does anyone know someone I should try in the South Jersey/Phila******a area who knows what they are doing? What medicines should I ask for? What tests should I make sure I get? All I know is Synthroid and the generic version does not work for me!!
I am sitting here sobbing from the relief that maybe i can find some help. I was hospitalized twice last month for high blood pressure and went and got my lab work today so i could see it. I am shocked to find out that both ldl and hdl cholesterol were extremely high back in december at my annual physical they were 272 and 197 i was given lipitor and was taken off inderal and put on diovan and atenolol also she prescribed paxil which i wont take then she sent me home. I ended up back in the hospital, thank god my husband took me to a different doctor and hospital, while there they did a left heard cath which showed no blockage. The cardio said there was nothing wrong with my heart and said go back to work. I have gained 70 pounds in the past 2 years and feel like every muscle in my body is bruised i am tired all the time but yet have trouble sleeping at my annual physical the TSH was .580uIU/ml after finding this board and reading this today i am wondering if all this mess could be my thyroid, I have had tingling hands aand feet severe muscle aches flaking fingernails and tiredness like i have ever known I am 41 years old with a very heavy but regular periods and also experienced an abnormal ekg 3 times at the hospital with slow heart rate. Does anyone know if this could be thyroid or what tests i should request since so far all the doctor has to say is your symptoms are from menapause. Thank you in advance for any help and thanks to all of you for posting to this board, I know i am not alone like i thought i was.
Hi, my name is Michelle and I too have a thyroid disorder. About 5 years ago, I was diagnosed with Grave's Disease and had a large goiter on my throat. The doctor had my thyroid removed with radioactive iodine. Geez... I wish I had only know how much that was going to change my life. He said that I wouldn't gain weight (my main concern then) and that I might no even need to take the synthroid. He was giving me a small does of the radioactive iodine and that it might work perfectly. HA! 5 years late, I've been through hell. I've gone to 4 different doctors because I was still having hypothyroid symtoms yet all my blood work results as in the normal range. I've been diagnosed with fibromyalgia, my hair is falling out, my skin is cracking and bleeding, I have reoccuring yeast infections, been diagnosed with tendonitis, have irritable bowel syndrome, heart burn and acid reflux, unexplained depression, irritability, have been diagnosed as bi-polar, ugh! What a list. I'm so sick of it. Recently I've been doing more research on the web and all these symptoms point to hypothyroid. So, I decided to go see another doctor and got on Amour. It's my 4th day and I feel worse. I can barely get up in the morning. I've ordered Mary's book and can't wait for it to get in. I'm really hoping that this switch to armour is the answer. Could use some support right now. :p
Here is my story, I was told in 2003 that my thyroid was off I was 35, I had no idea yes I gained weight, had no energy, but no other symtons. They started me on synthroid I can not remeber the doseage, I went back 3 months later to retest, I get a call they are uping my dosage to 100 mg of synthroid, I was like okay, I was on it a few weeks when all of the sudden I woke up one day took my meds and it was like bam it felt like someone gave me speed I could sit still, It felt like my hair was growing, I could not sleep, my mouth was very dry. I called my dr and she was laughing telling me to slow down (well I could not) she told me to cut my pills in half and only take 50 mg. Well I did not like the feeling. so I stoped taking it all together, I went to a new Dr in Sept of 04 and she put me on Levoxyl 50 mg. What I do not understand is from 1999 to 2002 I worked in a casino as a cocktail waitress I weighed 103lbs I walked approx 2 miles a night, then boom, now I am 142 my weight fluxurates between 139 and 148 and I am 37. Well i stoped taking the meds in Jan of 05 due to mouth surgery.
My story... Whew, I don't know where to begin and to be honest even thinking about it wears me out! I will share more later on my background. But for now I am really desperate for some advice. I am pasting what I just sent on another thread. Please help me if anyone has any suggestions! I am praying and praying for wisdom on this! One thing I will share is that I had to have a hysterectomy at age 19 due to endometriosis. Currently I am on premarin and wellbuterin for fibromyalgia...My current age is 48.
My doctor told me my thyroid tests showed borderline. He put me on 50mg. synthroid a couple months ago. I am due to go back and have lab work done again for him to see how it is effecting my levels now. The thing is I am seriously thinking about asking him to take me off the medication. Since I have been on synthorid I have gained 13 lbs.!!! I need to be loosing not gaining. At first I thought I could see a little more energy in myself but now I take my med. with water and just go right back to bed. I have been sleeping at least 10 hours a day and if I could I'd just stay in bed!!! I make myself get up. Then I have problems going to sleep at night but I figure that is because I had slept so long. Yet once I go to sleep I do the same all over again and sleep forever!!! It's not that I am staying sleepy, just when I fall asleep I don't want to get up. After the first two weeks on the med. I told my doctor that my appetite was really out of wack. I wanted to eat and eat more than ever! He told me that was okay because it was a sign that my metabolism was kicking it. I just don't have a lot of trust in doctors sometimes. By the way, I also suffer from fibromyalgia.
PS The 13 lbs. really blow me away since I have been dieting!!! I do well for about a week then I do blow it but only for a few days. No way only a few days can cause me to gain 8 lbs. one time and then 5 then next time!!!
I'm new to this board and really appreciate everyone sharing their stories. It seems thyroid disease is one of the more frustrating ones out there. Here's my story, sorry it's so long.
I had radiation for two birthmarks on my face when I was an infant -- it was 1959 and that's what they did. The birthmarks went away, but I feel that was the source of my thyroid difficulties. All my life, I've had trouble focussing, and found out that is a common side effect of cranial radiation to small children . . . but that's another story.
At the age of 28, I had surgery to remove half my thyroid, which had a cold node. Not cancer, but extensive hashis. I took synthroid for a couple of years, but then stopped with no adverse side effects, so I went on with my life. At that age, taking a daily pill seemed like a horrible inconvenience. :p
As the years went by, I pretty much forgot about my thyroid, as my levels stayed 'normal' but I had very heavy periods, always cold, brainfog, hair loss. But the worst symptom of all were the extreme mood swings. I'd be fine one day, then nearly murderous the next. I put my fist through a window and a couple of walls, and had intense crying jags that lasted for hours. I screamed at my kids just for being kids, and that's what I feel the worst about. I would yell and be awful to people, and then crying and apologetic in the same breath, then back to yelling, over and over again. I seriously wondered if I was possessed.
I went to see several counselors, then a psychiatrist, and he diagnosed me with ADD and put me on dexedrine. The dexedrine really helped when I took it, but then I would experience extreme crashes and would feel terrible til I took my next dose. Also, I had a hard time eating and sleeping.
Last November, I started feeling a lump in my throat. I went to an endocrinologist, and she couldn't feel anything, but because of my history sent me for an ultrasound. There was a lump, and she recommended I have my remaining lobe out, again because of my previous history of radiation. I had it out five weeks ago, and there were four carcinomas, all under .5 cm with good margins, along with extensive hashis.
Three weeks later, with my TSH at 75, I did the radioactive iodine treatment, followed a week later by a full body scan, and I'm now awaiting the results of that to see if the cancer has spread. I've started on cytomel for the first two weeks, along with levo, which I guess I'll be taking for the rest of my life.
I'm looking forward to feeling better. I've put on about 15 pounds in the last couple of months, and am feeling pretty miserable. I just can't seem to get up off my rear end, and the house looks like a tornado hit it. My husband, who I've been married to for 25 years has been a saint, and I'm so grateful to him, and also to all of the rest of you who have shared your stories. I no longer feel as though I'm the only one dealing with this stuff. Hugs to you all!
Hello.....I am new to this board. I found this site while researching the hair loss I've experienced for a few years now. I read some of your stories, and things started to fall into place. I used to have extremely thick, healthy hair. Now it feels brittle and is so thin (especially at the crown) that you can see my scalp. About 4 1/2 years ago, my weight ballooned from 175-180 to almost 260 in less than a year. I wrote it off to being unhappy in a new place. My carpal tunnel I wrote off to my computer job. My cold hands were from the air conditioning. My sudden fear of everything unknown ( from asteroids to road trips) were just me being silly. My complexion went from oily to dry, and my lips are really dry too. That is just me getting older (I'm now 28). I've also had headaches, pretty bad fatigue and a case of the blues, can't seem to get motivated, my heart beats really fast and hard at times, my body aches for no reason, my allergies have worsened considerably, and i always have a low body temp. I was diagnosed with ovarian cysts 2 years ago, I have had problems with yeast infections, vertigo, and I take naps alot. I NEVER used to nap.
I thought my ob/gyn had tested my thyroid, but going through some papers last night, I discovered that she ordered a metabolic panel but no thyroid/tsh test.
:confused: Stories, huh? Well, I bet you have heard this before. I was misdxd with bipolar for 15 years. Yes, I took Lithium for awhile. But, I never hit mania. So strange, it was like I had the mindset, but never felt the deep lows or the wonderfly sky high highs. I sat in the middle, my pdoc said i was stable. He never ran any tests on me, other than when I demanded it for my Lithium levels, which I was taken off of due to side effects, I was almost toxic. Mad? Yes, I am angry. All hell broke loose in December of last year, and I ended up leaving my husband. Oh, everyone thought, I was just being a "psycho" (that is the words people I love used for me), but in reality, when I went to the gyno for an estrogen level check, because I had been feeling like I was flying into menopause after my hysterectomy, he accidently had a thyroid panel ran on me.
Viola'. There is the answer, the labs said the TSH was at 26. I was put on 75mcgs of Levoxol, then I got a call from the endo. My TSH was now reading 76, after one month of being put on Levoxol. So, he upped the dose to 125mcgs.
I have never felt better or more clearer mentally. So, the bipolar meds were messing with my whole thought process. Yes, I have the classic symptoms of Hashimoto's Hypothyroidism. I have an ultra sound to prove the dx. I also have the brain fog, the low energy, and lately, i have been sweating so bad that it is unbearable. I told the endo that last tuesday when I saw him, along with complaining about the Fibro I have been told I have too, although there is no blood work. He did run a cortisol test for my adrenals, and is not happy with the numbers. So, in 3 months, I have to have my cholesterol, TSH, adrenals, probably a few other tests, because there are 6 in all. I have dropped from 236 to 214 since January, no dieting. My bad cholesterol has dropped near 100 pts, and I have 50 more to go before he tries to slap a statin on me. I won't go on a statin, because of the Fibro pain. My emotions feel like they are doing this :bouncing: I want to feel good again. I have a nice sized goiter, but nothing I want them to cut my neck open for and remove, it's not that unsightly.
I am just so angry about the 15 years of wasted dx, the incorrect dx. I refuse to go on the medication merry go round again. I am tired :nono: of my pdoc trying to still insist I have a mood disorder. For some thyroid problems hit physically first, then mentally. For others like me, it hit me mentally first.
Get this one. I am supposed to avoid all stress :rolleyes: as if that were possible. I have 3 teens. I just need some support. The bipolar communities I have visited, not on this site, but others, won't accept me, because I am not bipolar, I have been to a fibro board, and well, maybe I should try to stay here, and get some tips.
So, without writing a book, and boring you all to death, I will close. My TSH is now at 2.5. And people, I *still* don't feel good.
I was diagnosed as Hypothyroid in 2002. I was put on Synthroid and was fine for a whole year. Then, I started getting lightheaded (dizzy)after meals. And then one day the dizziness just never went away. I have been feeling dizzy since April 18,2003!!!! (I even remember the date!) I have gone to my doctor repeatedly He keeps telling me my thyroid levels are fine. I've been to a Neurologist, Endocrinologist, even a Psychiatrist and no one knows what is causing my dizziness. Over the course of the two years that I have been going through this, I have developed many more strange symptoms for example; my ears constantly ring and always feel stuffed up, I feel like I always have a sore throat, I keep getting this gurgling sound coming from my throat, My left eye lid constanly twitches, I am always fatigued, My hair is starting to fall out, I get the numbling tingling feeling, I get random sharp shooting pains! Yet the doctors find nothing!! I've had MRI's CT scans Ultrasound and nothing! I too thought I was going crazy, but when I read your message I felt like I finally found someone who understands, it was comforting. I am 24 years old and have 2 children and feeling dizzy 24/7 is just driving me crazy! I just wish the doctors could find out what to do about this cause it's been over 2 years already and I'm just hopeless.
I was diagnosed with Graves' Disease in 1993 after being mis-diagnosed for over 5 years and told it was all in my head, that it was depression and anxiety and I was treated with anti-depressants. I had a 57 LB weight loss, but an appetite that wouldn't stop. I looked like someone that had been in a concentration camp that was starved. I was treated with RAI and was told that everything would be great. I went hypo and was put on Synthroid. After 3 years I became hyper thyroid again, even though they kept reducing the thyroid medicine. In 1996, I was told that my thyroid "grew back" and that I needed a second dose of RAI. I graciously complied thinking that this would end the nightmare of being sick. I was then put back on Synthroid and have had nothing but a horrible time adjusting the thyroid medicine. I thought I would give Armour a try, broke out in a rash, and was told I must be allergic to pork. However, pork shops, bacon, or ham have never bothered me! I've tried cytomel with the T4, but this wasn't any better. I continue to have neurological problems and muscle problems. I have tried numerous anti-depressants to try to help me deal with these symptoms to no avail. That's my story and I stickin' to it. Unfortunately, no one seems to know how much damage can be done in a person that goes many years undiagnosed with Graves'/hyperthyroid, being subjected to the extremely high hormone levels for many years.
I am new and thought I would share my story so far.
In late February this year, I returned to the company I had worked for for 4 yearsprevoius before leaving to have 18 months off to try and conker my "nervous Breakdown". I was not diagonosed with a breakdown as when I went to a Dr, he seemed disinterested and prescribed "chill out" drugs.
At this point I decided to get over it myself, and after 12 months I managed too. The breakdown turned me into my complete opposite. I was too scared to go in the back garden, answer the telephone or even have visitors to the house.
I got better and I returned to work with so much determination that nothing or no one could stop me. I was lucky the company I worked for understood and alloweed me back. I woed them and I was going to work very very hard ot make up for it. I started February 28th.
First I noticed my memory was playing tricks on me. I lost entire conversations, numbers, names, and this is way out of Character. I am well known for hearing a number / name once and never forgetting it. This problem caused me great distress and I took to actually documenting everything.
Then the heat. I was so hot I felt giddy. My colleagues teased me about being on the change, and at a point I too thought this was a problem. I am 39.
I returned ot my GP who after me only telling him about the memory and the 4 weeks of diarrhea sufferings, he said nothing except "oh it is your nerves again." Started to type into his pc when I said " I have lost over a stone in 2 weeks too" . He never looked at me, he just said " well done"
I said no more, I just went home to cry, another thing I am prone to.
3 months went by. Each week brought a new illness. Headaches, insomnia, cramps, tiredness, etc etc, but it was not until I tried to put a teaspoon of coffee in a cup and through shaking it went everywhere, did I return to see a GP.
This is where I fell lucky, a Locum sat in the office as I entered, and he said " oh your ..." and paused. I said " beg your pardon" and he said, " I think I know what is wrong, but please tell me why you have come"
After I spilled out my sufferings, he pulled out a mirror and asked me to look in it and see if I saw anything different. I looked, I saw nothing.
He pointed to my swollen neck at the front. " Oh yes, I have had that for about 2 years" Over th eyears, since I gave birht to my first child, I have gained and gained weight. Slept for hurs and hours and always felt tired.
He was a very good Doctor and explained everything. I went for blood test and I was told to ring back on Monday. I did, only to be told by the receptionist they were all Negative and not to worry . I asked her to double check, after the Dr the week before had explained things, he all added up to me. She got a little grumpy (witch) and said she woold check with the nurse. A few moments later and with a patronising voice she said" the Nurse agrees with me"
So That was it.
By Thursday that week I am so distraught about the shaking and over heating that I ring to book another appointment. I was scared they would say it was my nerves and that I am crazy, btu I am ill so I decide to risk it.
This time another lady asked why I had missed my Appointment that morning. I asked which appointment and she explained it was a results appointment.
I explained about me calling on Monday and she went very quiet. She then asked me to hold the line.
The surgery manager came on the line and then explained I must have been given the wrong results and Dr had sent me an appointment to see him as my results were positive. She could not apologise enough, but oh how I cried.
I saw the Dr on Monday and he was fantastic. He explained he would send an urgent refferal to the hospital and as I was suffering so badly he prescribed Carbizamol and Beta Blockers, but being an asthamatic gave me soem warnings.
This is where I lost part of my memory as I cannot remeber him saying " If you cannot breath or feel pain in your chest ring 999"
I did get the above and was never more scared in my life, I stopped the medication and tried for 3 weeks to get another appointment.
Finally I saw the Dr again and he explained he had chased up my appointment and it was to be the following week.
Specialist was lovely. Explained abotu Carbizamol and how it would take 2 - 4 weeks to kick in etc, explained I had overactive thyroid and I went away happy that I would soon be cured.No Beta Blockers as too dangerous. He never mentioned the Glucose level being four times it's normal rate? I never asked, memory really bad, and hence why I have edited this post twice.
I am now 3 weeks in and my symptoms are worse than ever. I cry, shake, overheat, cramp, and generally suffer with a heavy sadness that life is tumbling ontop of me.
I am lucky as I have a fantastic husband who helps me a great deal, but with a full time job that takes me out of the family home for 12 hours a day and 3 children, one living away, and all the other day to day stresses of a mother, I know I cannot cope. I cannot afford to give up work, I have looked at my finances and there is no way. I have been told by many many people that knows someone who had this and that the medication can take upto 6 months to help and even then it might come back.
I personaly do not know any one with this. I have no one to talk to. Could I have had this for 4 years, as the depression ect started then. What is causing this. Do I have cancer. Should I have pain in my neck and the choking feeling, How do other people cope. When will I be able to talk to people without crying.
In my job it is important I can talk to people.
Long Post, sorry, but sort of stuck somewhere I do not know how to leave.
Also, just weird mind things happening. Loosingminutes in a day, for eaxamle today I was driving in a City centre, the next thing I knowI am 5 miles out of town and no idea how or why I was there. I feel giddy, wobble alot and shaking legs when I am driving I judder along sometimes.
I am at the Gp's again tomorow, just to ask for some help, reason etc
I am at the Hospital in 3 weeks time. 3 weeks seems so long away.
Crikey don't I go on, I just feel very alone at this moment. Suicidal? A little, I see my Boys and I chatise myself for even thinking it, but then I thnk how much better off they would be having Aunties and Uncles doting after them rather than a mum who is ILL all the time.
Your story is so comforting and insporational to me. I have been trying to get a diagnosis for over a year, to no avail. I have a family history of thyroid disease, all the symptoms, and already have an autoimmune disease. I'm only 16 and all this horrible pain began on my 15th birthday ( what a great present, I know) and my dad doesn't care enough to get a trh test for me. However, after listening to your story, I'm going to try very hard to convince him to get me this test. It's so nice to know I'm not alone. All my doctors and family have been so unsupportive, blaming it on depression.
But I now know I'm not alone and will try to get diagnosed and better. Sometimes its just hard, what with doctors telling you its all in your head (i feel like i'm going crazy)!
Best wishes :)
I am new to this so I don't know whether I'm doing this right.
My story is very similar to the ones i've read. I have been going to doctors for years with no real results. I am in constant pain, muscle ,joint pains,can't seem to remember anything,always tired no energy to do anything. I have been on antidepressants,NSAIDS, also had carpal tunnel release surgery a couple of weeks ago. I went to the doctor and he ordered some tests well my tsh level was .4 which he thought was just slightly low but really not low enough to start on meds. Also had an ultrasound which showed nodules in my thyroid. I haven't gotten the results back yet. Everyone in my family seems to think that all I need is a nice vacation and all my problems will be fixed. I don't know what to do anymore. I started keeping everything to myself as far as pain and things because i don't want to seem like I'm constantly complaining. Sometimes I just don't know how to keep going on like this. If it wasn't for my children and husband i think i would have given up long time ago. I'm sorry for jumping all over the place with my story but I am at the end of my ropes(not suicidal yet). I'm not sure whether I'm asking for advise or just some understanding .
From Stubborn Swede:
I'm still in the midst of tests for my doctor, but something has happened in the mean time, don't know if it's just a coincidence, or if I've found the cure. A couple weeks back I had a coconut punch at a Chinese restaurant. It was pineapple juice mixed with whole coconut milk. I couldn't get enough of the stuff, craved it like mad. Began making my own at home and downing approx a gallon every two days. I noticed my energy levels jumped up, my mind cleared somewhat, and I lost a couple pounds. Researched pineapple and coconut on the Internet, found both to be good for weight loss and that coconut stimulates the thyroid. Since then I've continued with my "punch," plus added coconut oil capsules, and a Neuro type enhanced vitamin. Weeks later, I still have energy, my mind is clearer than before, still dropping weight slowly, and best of all, my eyebrows are starting to grow back in! There was no change in them for over two years. Whether this is a coincidence, whether I'm a hypochondriac, or whether there's something to this, I'm sticking with it. I'm feeling so much better! Just thought I'd share in case it could help anyone else.
OK, my turn!
I was diagnosed literally this past Tuesday with hypothyroidism. They said it's probably been building up for quite a while and I'm on 50mcgs of Levothyroxine, which [I]I think[/I] is the generic of Synthroid from what I've read. I have another blood test end of October to see how my levels are and what needs to be done with the meds, if anything.
My symptoms were/are: very achy limbs, tingling in limbs sometimes, very bad memory, hot and cold intolerance, weight gain, hair shedding, dry skin, very very tired, insomnia, and anger (which I don't know if it's related or not). I also have depression to a point.
I'm slowly coming to terms with the diagnosis. I was very flippant and cavalier when I was told, but upon reading more on my condition, I now realise it's a lot more serious than I thought and I need to be more careful about my body now, especially as my immediate family has a history of cancer, heart disease, high cholesterol and diabetes. I've ordered 2 books, "Living Well With Hypothyroidism" and "The Thyroid Diet" so I'm hoping they'll help me to understand better and deal with it.
Anyway, I'm grateful at least that I know what's wrong with me now, and I'm not just going spare because no one seemed to know why I was experiencing what I was experiencing (if that made sense). Now it's time to tackle it and get on with it...although a possibilty of a lifetime on meds doesn't thrill me. Ah well, to be healthy, eh? ;)
I have been kind of a lurker for a long time but here is my story....
I'll be 40 next February and when I was 5 years old, I was an extremely skinny, active kid. Just after I started Kindergarten, I missed 3 months of school due to a bad case of mononucleuosis. I finally recovered but soon had my tonsils removed. The only thing anyone seemed to notice was that I had started to gain weight.
So for 7 years, I continued the uphill battle gaining weight, starting my teenage years and my mom had just about enough of my weight gain. I had always been active but something just wasn't right. She told our longtime family doctor that she wanted my thyroid tested because thyroid disease ran on both sides of her family and that no matter what kind of diet she put me on, I just kept gaining weight.
The doctor (while smoking his cigarette in the office) said to my mom, Suzanne doesn't have an underactive thyroid, she has an overactive fork! That ticked my mom off bigtime and she told him that he either run the bloodwork or she would find another doctor who would.
He ran the bloodwork and needless to say, he had to eat crow. I was diagnosed with Hashimoto's Thyroiditis and I was immediately put on Thyrolar. Over the years, that doctor never wanted much to do with me and I dropped him when I had my first kidney stone at age 21.
Over the years, my view of doctors has been tainted and I went off and on my medicine for many years before finally going to Mayo Clinic for an overall evaluation. I haven't missed taking my medication in 14 years but unfortunately have only had increasing endo problems over the years which now of course include Type II diabetes.
Sadly, my view of doctors has probably shortened my life as I have carried far too much weight for too long. I am 113 lbs lighter than December of 2002 and still have a ways to go. If my thyroid condition had been taken more seriously by my doctor back when I was diagnosed, I have to think I would have taken it more seriously while I was growing up. I guess the moral of my story is if you aren't happy with your health care team, you have to keep searching for better. I'm still learning the ropes here in Sweden but I won't give up trying to find doctors I am happy with.
Hi! My story is a lot like the rest... I had had two healthy baby boys and at 30, during a screening, a small lump was found on my thyroid. This is going to sound crazy (because it does to me now) but I totally forgot about it! I was still breastfeeding and had 2 kids 14 months apart and just forgot! In the next few years I starting gaining weight and truly I had never been more active! No diets worked, I just kept gaining. My energy level dropped, my hair was falling out in handfuls, I was depressed, and no libido to speak of.
In March of 2004, shortly after turning 34, I saw my family doctor about the lump in my throat. I had been cleaning and found the paperwork from the screening in 2000. He felt it and said there was definitely a problem and berated me for not doing something about this sooner. He recommended me to an Endo, but the Endo could not get me in for nearly two months and I was a wreck certain that I had cancer and had done nothing about it for so long. Therefore, I took it upon myself to find an Endo who could get me in sooner and went to him instead (big mistake). He was as clueless as I was! He told me that I was gaining weight because I ate too much and told me to go on the South Beach Diet to get it off. He diagnosed me with Hashi's, put me on a low dosage (50mcg) of synthroid and sent me home. On my follow up visit he ordered me to have an ultrasound and noted it had grown significantly, but still felt we could shrink it via the synthroid.
At my six month check-up he doubled my dosage (now to 100mcg) and said we should just "keep an eye on it." Since my husband and I were thinking of trying to have our third child I asked him if it was okay to conceive while being on synthroid. He went off and told me I needed to get off Prozac (which I had been taking since shortly after the birth of our first child) before trying to get pregnant and stop worrying about synthroid! That did it for me. I informed him it was none of his business whether I chose to remain on the Prozac weekly as I was on it not only throughout my second preganacy, but all the time I nursed my very healthy 9-pound-at-birth baby boy! I told him that was between my OB/GYN and myself and perhaps he needed to get his facts straight before saying things he obviously knew [B]NOTHING[/B] about!
In April of 2005, I had my annual at my OB/GYN. By then, my husband and I had been trying for 9 months for baby #3. I expressed my concern and told her about the nasty Endo and what he had said. She ordered me to have a full blood work-up to check on several things to see if something in me was out of whack and preventing us from conceiving. Once again, we found my TSH levels were low and she referred me ironically to the same Endo that my family doctor had initially referred me to. Again, it was 2 months before I could get in to see him, but this time I was willing to wait.
On June 6th, 2005 I saw the highly recommended Endo. Without even feeling my thyroid said he could see the large growth on the right side. He ordered me to have an ultrasound later that week. When we met again to go over the results he read what the old Endo had forwarded and could not believe it. He said the old Endo had written down 2 different measurements, for the same goiter, neither of which made sense. He also said he used medical jargon that NO ONE used anymore. (Scary!) He said then that he thought ultimately my thyroid would need to come out, but that he would prefer to have needle biopsies done first. A week later I went in for the needle biopsies and a week after that we got the lab results back. They said I had follicular neoplasms and they could not tell whether they were malignant or not and recommended a total thyroidectomy and referred me to a local surgeon who specialized in thyroid issues.
On August 1st, 2005 I had a total thyroidectomy. The surgeon told my family that my thyroid was [B]HUGE[/B] and therefore my scar was a little larger than most. He said he saw no red flags of cancer and was very positive that all was well.
This past Tuesday, August 9th, my husband and I went for my post-op appointment to get my stitches out. I was so nervous about it that I had forgotten all about the lab results. My husband said he knew right away after seeing the doctor's face. I was concentrating too hard on the scissors in his hand getting ready to remove the stitches to notice. He was very blunt. He simply said, the lab results are back and it was malignant. I did not hear anything after that. Unfortunately, neither did my husband.
I am scheduled for my consult with an Oncologist on Wednesday the 17th to go over the upcoming Radio Active Iodine treatments. I am still pretty much in shock. I do not know what to expect! I do not even know if my cancer is follicular or papillary?! I have gone through the "WHY ME?" stage, and the "POOR ME!" stage and now I am trying to stay focussed on the "NOT GONNA BEAT ME!" stage. It just still does not seem real, or maybe it is just that I really don't want it to be?
[B]I am a fighter! And I will soon be a healthy 35 year-old CANCER SURVIVOR!!!![/B]
God bless you all! Stay strong!
Thanks for reading!
It seem that we allhave similar stories to tell about 6 months ago i was very nervous and mywhole body would ache so much having hot flashes cold sweat hand and feet cold, swollen and sweaty all the time any noise would bother me, gaining weight feeling depress all time crying for no reason ,tightness in my chest my heart palpating
and what the worst part i lost my sex drive this is hurting my relationship.
had told my Fiance about all the systom and he stated to me that is sound like i was going to be menopausal at an early age of 32 told him ,he is wrong need to see a doctor to see what is wrong me and see if they can help me. When i did go to see the doctor was in 7/02 i explain to her what health promblems are in my family she decide to check for me thyroid, cholestrol and diabetes. When my result came back i had my cholestrol high it was 210 she does not want me on medication jsut ot change my way of eating but mythyroid was 9.36 it was very high and she ran a second test same results so i was put on synthroid 25mg for now and the truth is has been one moth and the some of the systom have improve not allbut hopefully i can feel better much better i am loosing my fiance because i cannot perform like a women should
hi i am a new user to this i found it on a link and here i am registered anyway , i found out in may this year i have something called turners syndrome and just now at the beggining of september just been told my thyroid levels are way low were im not producing enough thyroxine in my metoblism.i have never been a healthy child when i was born i would eat and i keep having projectile vomiting and my mum was pulling her hair out because she has had my 2 brothers before me and new it wasnt normal.
tghe doctors said i was just fussy about my milk and my mum basically cured me of the vomiting herself.because i eventually wouldnt eat because i keep being scared about vomiting she braught a different load of milk and and i didnt eat goat not sma.then my mum braught some semi skimmed watered it down and i actually drank it adn didnt throw up.which in my mums eyes was like winning the lottery .anyway cutting to the chase id like to say i know what its like to keep going back and stuff if youd like to chat my email is [i] [ please read and follow the posting rules - no emails ] [/i]
[i] [ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ] [/i]
I have been reading all these postings and I have to tell you that this is very scary. I have a similar story...
I started having unexplained heart palpitations when I was about 20 years old only to be told to avoid caffeine and chocolate. Soon after I began getting feelings of depression and moodiness which occured on and off for about 4 years. I was given prozac, which made me want to jump off a building, and then Paxil. With the Paxil I began slurring my words and having trouble concentrating. Durring all of this time I was getting sick with sinus infections and bronchitis every three months or so and was sleeping about 3 hours a night. Finally I woke up one morning and could not walk into my living room. I physically could not lift my arms or legs. I was 24 years old and lived alone. I called my sister over and she took me to the doctor. I was diagnosed with a severe case of Graves Disease which was treated with tapizole for about a year and a half. My results were then normal again for about 4 months when my thyroid became overactive again. My doctor informed me that I needed a radio iodine treatment. Since I wanted to avoid this at all costs and didn't trust a doctor who ran into the room for 3 minutes to bark orders at me and then leave, I went to another endo who basically told me the same thing. So I did it and immediately became underactive and put on 10 pounds and became a bit over weight.This second doctor gave me levoxyl and told me to come back in a year. That was about a year ago. Several months ago I began have trouble sleeping again so I went to my family physician who told me that I am overactive again and to stop taking my medication on Sundays. I've now been having thyroid problems for 7 years and I still feel horrible. In the meantime I had precancerous cells on my cervix and had to have 2 surgeries. I think that I have actually been exhausted for 7 years and recently lost my job due to too many absences even though I've had doctors fill out paper work destifying to my illnesses and provided them with a stack of doctors notes. What scares me is how many times I've heard about people being treated for the symptoms with antidepressants and doctors sending people away telling them it's all in your head or stress induced. Thank God I finally realized that I had to take my health into my own hands and be persistent.
I'm also thinking about starting a family this winter and have no idea if all of these problems are going to keep me from doing so.
My storybegins with me, I was diagnosed with hypo in the 80's was told the weight would just fall off of me onced I started meds, well guess what it didn't. It only got worse. I was in a car accident in 1999 and 4 weeks later my husband was killed on his job. WOW! I started having panic attacks like crazy, and I thought I was crazy. Drs said I had post traumatic stress syndrome. Needless to say I was crazy! Since reading your boards I believe that it is thryoid related. On Friday of this past week my 8 year old was tested for thyroid and guess what she has it too. I have asked the drs for 4 years to test her because she went from being underweight to being overweight in about 6months time, drs blamed it on have tonsils and adnoids taking out. Her level was 973.36, already in 3 days of meds I already see a difference in her. Her skin does not feel like leather, she doesn't want ot sleep 20 hours out of a day. I also found out numerous women in my family have hypo and a few guys have hyper. So I urge anyone with thyroid to have their childrent checked and if the dr says no go somewhere else and have it done.
So this is my story...HUGE!!!
After my daughter was born, I went thru a small bout of post partum depression. I excused that as to being with a then jerk husband that didn't help and being so very tired. (my little girl didn't EVER sleep for more than 20 minutes at a time till she was 6 months old) At 3 months, I finally got back to see the midwife (for that 6 week follow up) and while I was there, I told them I was still producing milk, even thou I'd stopped trying to breast feed by the end of the first week. I was told that wasn't unusual and it was nothing to worry about.
Fast forward to her being 3 years old. I went to the same midwife and again told them I could still express milk. Was told this time that it wasn't totally unheard of, so not to worry. I think if I'd pressed the issue back then, things would have come to a head sooner. But I didn't.
At Christmas time 2003, my daughter got the flu. She felt so bad, we postponed Christmas to the next day. I made a bargin with God that I would stop smoking if he would make her better. He did and I kept my end of the bargain too. I weighed 170 pounds. Not a rail by any means, but I was healthy, so I didn't really care. I gained a bit of weight after that, but more, I started getting tired. I just figured it had to do with stopping smoking.
Spring of 2004, I started having some problems that I couldn't figure out. I would wake up in the middle of the night and I would have the funniest feeling in my chest, sort of like a cold wave passing over me. My heart would be racing and I felt totally out of control. Sort of like I needed to get away. I did some research and I came up with panic attacks. So I was off to an emergency care place and I was put on paxil. The dr did this without even touching me. I swear it, he never even shook my hand! He asked me if I felt suicidal, I said no and he said, here, starting taking this. He did tell me that sometimes people gain weight taking it, and that's about all.
So when I started gaining weight at an ungodly rate, I never really thought much about it, now I was blaming it on the paxil AND stopping smoking. The truth is, I never even realized I was having that much of a problem...tilll... We had a family reunion to go toin early summer. I bought a really cute outfit about 3 weeks before. The morning of the reunion, I couldn't even squeeze into it! But again I really didn't think much about it. I knew there was a problem, but it was easy to blame the 2 other things and the mental problems I was having. I was feeling depressed. Thought that was cuz of the meds and all that other. Yadda, yadda, yadda, yet one more excuse.
That summer was very hard on me. I would be working in the gardens and my arms would feel funny. I'd get a "pumped" feeling and it just wouldn't go away! I walked around looking like Popeye, but again, I didn't think much more about it.
Then my hands started giving me troubles. I was dropping cups and dishes so often that I was breaking on average 2 things a week. I had carpal tunnel so bad that I would type good morning and my fingers were numb. Aches, pains, bloating, skin prblems. But still I didn't think anything of this stuff! I must have been TOTALLY nuts! I was starting to blame all my problems on the Paxil. I would see some of the minor and rare side effects and is was sure that was the problem.
We went on vacation at the end of August that year. We went to Niagra Falls and then on up into Canada. I was so tired, only I didn't really think of it as being tired. I felt old. We took my 60 some year old mother in law with us and I swear it, I had a hard time keeping up with her. And by the time the vacation was over, I was sure that if I took the Paxil anymore I was going to die. So I quit them cold turkey as soon as we got home.
I remember the day after we got home, we had to get our daughter to the school to register her in her Pre-K class. They asked me to sign papers, only I couldn't get my fingers to work well enough to sign. That little bit of effort "pumped" arms and made the CT act up. But I was still blaming it all on the Paxil.
I did feel a little better after getting off the paxil, and finally getting some time away from my daughter (she'd hardly been out of my sight in 4 years) and getting some work done and relaxing made me feel less depressed, but I was so tired! I'd wake up and get her on the bus and then get back and fall asleep, wake up just in time to get her off the bus and then take a little nap right before it was time to make dinner. And then I'd fall asleep watching TV till it was bed time. I really think I was only awake about 6 hours a day back then.
Finally, it all came to a head about the 1st week of October. I noticed one more my legs were swollen. I don't mean hugely grossly swollen, but the edema was pitting. That scared me! Everything I read said it was heart troubles, couple that with the racing heart, strange pains here and there and I was sure there was something wrong. So I called my DR and he was on vacation. His office refered me back over the Emergency Clinic. The DR there ordered some blood work, and assured me that it wasn't my heart. But he told me I needed to follow up with my DR ASAP! Thankfully, all the tests came back fine. The only one that wasn't ready was the Thyroid. It would be ready in a few days.
About a week later, I was able to get into see my GP and we went over everything and he perscribed a diuretic and an elastic stocking. (LOL how helpful is that?) But since all the other blood work came back fine, there wasn't any need for further testing. But he did suggest maybe it was time to do all my bloodwork, you know, counts, cholesterol and all of that. I told him that they had done a thyroid over at the ER place. But it wasn't in my file and they couldn't find it (it was later found in my husbands file) So I just went and had it retaken later that day.
He called me a few days later and the first thing he asked was "do you feel tired?" Well yes, I do. But remember, I run around after a 4 year old all day long. He said to me, "I don't know how you put one foot in front of the other!" And now, thinking back on it, I don't know either! He then told me my level was at 118!!! That didn't mean much to me then, but now I know it was WAY out of line!
So I was started on Synthroid at the lowest possible level. I think that was 12 mcg. But it only increased a little at a time, once a month. He did apologize saying that some people, it only takes a little bit to correct the problem, so we had to do it slow. The real problem was that I had to go into his office everymonth from Oct thru to I guess, well, where ever 125 mcg is in the progression of the pill dosage. :)
But I sat there one day, back during those first couple of months, and listed from head to toe, all the symptoms I had and missed. I literally found something from the top of my head all the way down to the soles of my feet! Honestly...every part of my body was suffering.
And I'm going to post these in case there are new people wondering if their odd symptom is normal...
hair was brittle, and wirey, LOTS of it! I didn't start losing it till after each increase in medication
my scalp itched so bad I would have big bleeding sores
my face was dry
my eyes were going bad
my ears would ring
my sinuses were either tood ry or stopped up
my tonsils were always flared
I needed to clear my throat or I felt like there was something stuck
I coughed a lot for no real reason
I got huge pimples on my shoulders
I could express milk even 5 years after having my daughter
I had chest pains
my sternum hurt
High Bllod Pressure
Rapid heart beat (I am medicated for both of those now)
I was short of breath
I was blaoted
Stomach pains, not more tummy sounds
I was constipated
my period were irregular
My arms hurt and my muscles would cramp and get pumped, and I looked a bit like popeye (Wilsons Symdrome)
Would drop things
Brittle nails that break opening a soda can
my legs hurt, would cramp, get pumped
my feet hurt so bad I couldn't hardly walk
Tired, Tired, Tired!
Sleepy, tired, exhausted, tired...
But couldn't sleep the night thru
Waking up with heart pounding
RAPID weight gain (went from 175 tp 245 in less than 6 months-there was a time I was gaining 5 pounds a week!)
Inability to lose weight dispite exercise and eating the same)
Gained the weight in the stomach
No sex drive
That's the physical (I'm sure I'll think of more soon)
Panic attacks (VERY bad)
Complete apathy...I just couldn't care less about most everything
No motivation to even care
Terrible mood swings (I could be laughing one minute and crying the next)
Hypocondria (I was sure I had a huge tumor in my big bloated tummy)
Hmmmm...I'm recently diagnosed (Hashi's), and, like most of you, it seems, I'm in a crash-course on learning about thyroid health. I suspect, now, that I've been sick for a very long time, possibly since my teens or 20s. I'm currently 39 and the last few months have been horrible.
To sum up, I've suffered from many of the common hypo symptoms for 20 years or more, but never knew they were symptoms. The ones that have been around a long time--major and minor--are:
* Early greying of hair (age 25)
* Severely Dry Skin with dry patches that wouldn't heal
* Brittle Nails
* Carpal tunnel/ Ulnar Tunnel/ Tendinitis (shoulders, elbows, wrists) so bad I had to change careers
* Headaches (may or may not be related, I don't know)
Just about a year ago I was suddenly hospitalized with a severe asthma attack that nearly killed me. Since then, my medication for that has been working well, and I began taking care of myself for the first time in a long time. I'd quit smoking a few months previously and I began eating better and exercising regularly. I've always been overweight--sometimes terribly so--but I've also always been relatively healthy and active and rather type A, if you know what I mean.
So, last spring I was feeling better than I had in years, with my asthma and allergies under control and I was de-toxing.
Took a long trip in June (I teach and it was my vacation), and then July happened...suddenly, I had no energy.
My eyes went blurry and everything hurt. I gained 30 additional pounds (which I certainly didn't need, being very overweight already), and I didn't have the energy or coordination to do my usual summer activities, like go for walks and garden.
By the time school began in September, I was an entirely different person. I didn't recognize me in the mirror, I couldn't move, I could barely get through the day.
They couldn't figure out what was wrong with my eyes, and by the time October rolled around, I couldn't comb my hair or button my blouses. Thank God for my fiancé, is all I can say. Getting ready in the morning for work was like running a marathon, and the pain was so bad, constantly, that I wanted to die.
And there were the muscle spasms. I have a high tolerance for pain--extremely high--but for the first time in my life, I was laid out by pain.
At school, where I do NOT teach from my desk but am constantly moving, I could barely function--was having to lean on a table by the end of the day, hoping I could remain standing. I described moving as trying to "swim through mashed potatoes."
And then I lost coordination and I started slurring my words.
For months, I'd been trying to get rid of a frog in my throat to no avail, but that didn't even register with me because of everything else.
Every joint hurt, and all my past years of carpal- and ulnar-tunnel were back, along with my tendinitis. I knew from my previous damage (I used to deliver mail) that I would never be back to 100%, but this was ridiculous. I'd not been doing anything to cause this much backlash, and it was lasting for months.
When I saw my GP/asthma doctor in October (I have checkups every two months), I explained this all to him. He ordered some tests (checking for RA, etc.) and they came back with only mild inflammation. However, because of the severity of the pain I was describing to him, he referred me to a rheumatologist (or what passes for one here in the sticks, LOL).
He ordered several tests and suspected, I guess, from the get-go that I was hypothyroid. My TSH level came back at 84.75. I didn't know how bad that was until I began checking around. The doctor's office called me--this would be the first week in December, now, nearly two months ago--and said I should run, not walk, to the pharmacy and begin on Levothroid (1.00) that very day, even though I was scheduled to see him for followup five days later.
The Hashi's has thrown off, as usual, my blood sugar (suggesting I'm insulin resistant), cholesterol, etc. They did a CK/CPK test to see how badly my muscles were damaged, and my level was at 757 when the reference range was 17-142. I'm a mess.
But thrilled to have a diagnosis!
After that first week, he raised my Levothroid to 1.5 for 10 days, then back to 1.00. My latest TSH test has me at 24, still, however, so he's raised it to 1.5 for now.
Even though I'm still at 24, I feel like a whole new person compared to what I was. I'm looking forward to feeling more and more myself as time goes by, although with all my new research and reading, I'm worried about how long the process will take, and whether I'll meet resistance once I get down to that highly-contested "normal" range. (The lab my doc uses has 0.3-4.7 as the reference range for TSH.)
However, I figure if I can survive 84.75 (and I didn't miss a day of work through all of that, even if I felt like I wanted to die--but I'm a bit of a workaholic), I can deal with that when the time comes.
I'm also just angry (not any anyone in particular, just angry) that I've likely suffered symptoms abd conditions for 10 or 20 years, and I woudln't have had to if only I'd known sooner.
I did have two thyroid tests when I was about 20--I'm adopted, but the one thing I know about my birth mother is that she was hospitalized with thyroid as a teenager, even--but they were "normal" (whatever that means...I don't even remember the tests they ran). I've suffered from depression and anxiety since I was a kid--much less as an adult, my last bout being set off by a divorce several years ago--and I have to wonder how much of that misery could have been avoided, or lessened, as well.
But, can't cry over what's been done. I'm just hoping that as I turn 40 next week, I'll feel, ironically, younger than I have in a long time.
Oh...and I've lost close to 45 pounds since I gained taht extra 30 over the summer. The first 20 befroe my diagnosis through hard work, and the last 25 coming off much more easily since I've changed my diet to help my metabolism and have been taking the Levothroid.
Anyway, found this site today and am hoping to learn more about my "new" disease and coping strategies. Knowledge is power, and I intend to be powerful.
Hopefully I will not bore anyone with my story, but here it goes...
I am new to this board and want to say that is comforting to read so many posts from people that have finally started to get real help. I am a 45 year old female with 3 children. My youngest is 11.
For the past 11 years I have had what I feel are thyroid symptoms. I have had 2 thyroid test2, both were normal. The last one was 9 years ago. I had a very high heart rate so the Dr. was sure of a few things. 1, if it is a thyroid problem that it was hyper, 2) Because I was 40 lbs overweight I must eat a lot of fried foods etc.. 3) my sugar and chloesterol levels would be high.
Because of the high heart rate he did a ekg...it showed nothing. Then he did a thyroid, a cholesterol and bloodsugar test. All of which were "normal"
He told me to quit smoking, and give up coffee. I tried, didn't help at all. So I decided it must all be in my head.
Forward to now. Over the past 11 years I have poured over pages and pages of information on thyroid disorders. Though I feel most of my symptoms fall on the hypo side, some seem to fall in the hyper.
Symptoms I recall/have
1. Sometimes rapid heart rate 120+ resting
3. sometimes hot. sometimes cold (I went through about 6 month were I would sweat very easily, but not anymore)
4. though my periods are regular, they are heavier and I had never had regular periods in the past
5. Headaches that seem to correspond to periods
6. Cold hand and feet
7. Swelling ankles
8. afternoon fatigue
9. terrible sinuses
10. assortes aches and pains.
11. PMS, which is something I never had as a teen
12. occasional lightheadedness
13. occasional forgetfulness
14, Can't lose weight. I gave up on that
15. Very bad digestive system
16 Gall bladder problems
I have recently decided that I really need to go back and have this checked, but so far I have found 1 endo in a 30 mike radius of where I live and the 1st appt I can get is in July.
I have a family history of thyroid problems. My mother was diagnosed with Graves 23 years ago(another long story). She had radio active iodine treatment and has been on synthroid ever since. Though a sad truth, she has no thyroid left and she has had doctors try to take her of of thyroid meds.
Thank you for having a great place to express these things, it makes me think I might be a little more sane.
Also, I apologize for spelling and grammer.
I guess I'll add my story to this tome:
I am a 32 yo male who was diagnosed in September 2005 during a routine physical for my wife's and my adoption. As with most younger men I had been postponing my physical (much to my wife's chagrin) and only went so we could finish the adoption paperwork. When I was talking to my GP I listed the typical litany of "stress-related" conditions that I always thought every early middle-age guy had (esp. with a stressful job): fatigue, carpal tunnel symptoms, joint and muscles aches, mild hypertension (129/89... up from my norm of 110/70), and moderate weight gain. I didn't complain about my thyroid, didn't have a goiter, no family history of AID or any other "archtypes" but my GP scheduled a TSH test along with the litany of standard tests that I had been putting off, as she put it "to rule out my thyroid as a problem."
Needless to say my test was positive, much to my surprise. I had an initial TSH reading of 19, and follow-up testing found a high level of anti-TPO Ab. My GP was concerned with the possibility of other autoimmune conditions so she ran a plethora of ancillary tests (pernicious anermia, sodium/potassium levels, celiac screen), but all were negative. Right now I am normalizing my levothyroxine level, but having some problems since my TSH level seems to alternate between mildly high (6) and pretty elevated (~19) every other time we run the test. I am currently up to 100 mcg levothyroxine/day but I think my GP may pass me off to an Endo if she can't regulate the levels in the next round.
I guess the take away message is that there are some GPs that will consider the possibility of thyroid disease even if you don't fit the stereotype.
[FONT=Comic Sans MS]Hi there :wave: another newbie checking in. Don't know the lingo, so bare with me , , ,
I'm 46 and my ride began 3.5 years ago. My new primecare Dr noticed that my thyroid was enlarged, so she sent me for an Ultrasound. That came back w/ nodules, so she sent me for a nuclear scan. That test showed the nodules were cold (whatever the worst is). Then I was sent to an Endocrinologist. He did a needle biopsy & another U/S and decided to [I]"watch"[/I] it. A couple years went by & the 2nd U/S wasn't good. It showed that thyroid had doubled in size, so Endo wanted it OUT.
The enlarged half of my thyroid was removed Oct 05. The surgery went very smoothly. Dr used that plastic skin stuff, [I](NO :bouncing: STITCHES - yeah!)[/I] so my scarring is minimal. After surgery, I could be drenched in sweat in 60 degree weather <<~yuck! My 1st blood test was done too soon after surgery for "true" results. [I](should of had another in a few weeks time - but I didn't know)[/I]
In late January, I was still suffering with hair that was filthy after 1.5 days & body odor, so I asked for another test. It showed that my thyroid was somewhat low, so now I'm taking Levothyroxine 50 mg. The first week, I had insomnia beyond belief. 2 1/2 weeks into the med, I notice that I'm cranky as all get out. It's like the Levothy is totally counteracting my Zoloft. We'll have to find something that doesn't overtake the other,,,
Being heavy all my life, I'm wondering if my thyroid has been underactive [I](hypo?)[/I] for some years, just not enough to SHOW on a bloodtest?? [I](don't answer that - I've always wondered how they could know what normal WAS for MY BODY :rolleyes: - b/c we're NOT wired the exact same way)[/I]
Glad I found this site :D - there is a WEALTH of info here
Here'sy story: I had a partial and then a full thyroidectomy in 1974, after being diagnosed with Papillary Carcinoma. I later had the radioactive iodine. (As a child in the 50's, I had received radiation treatment for enlarged tonsils. Back then, they used radiation rather freely). I was initially on 300 mcg of thyroxin until about 10 years ago. Then a new doctor changed it to synthroid and lowered the dose to 200mcg. I have been feeling pretty normal with my one pill a day, until about 1 year ago. I have no energy, a foggy brain, and basically a sleepaholic. I am going through menopause and was taking HRT until 2 weeks ago. I'd rather have the hot flashes back than this feeling like a slug. Psychologically, I have this very protective attitude about my thyroid meds, and am now in the process of setting up an appointment with an endocologist, not my HMO general doctor. The good news is that I consider myself cured of cancer, since my surgery was 32 years ago-so I am grateful for that. Love reading everyone's journey down Thyroid Alley!!
I have had the exact symptoms of hyper thyroid. It started with my throat feeling tight. My periods are irregular. I swet for no reason. Headaches and brain fog feeling. When I try to sleep it is like I am having a heart attack. I had my TSH tested in NOv and they said it came back normal. I went to the ER this past Saturday and they said it came back as a reading of 6.14. I then went to my Dr again on Monday and he wanted to test it again and also do a T4 test the TSH test came back normal. I have not received the results from the T4 yet. I am unable to understand how it can be above normal by that two days earlier. All the symtoms are there I just cannot figure out what to do. I used to exersice everyday and now I am always tired. Any suggestions.
Oh Thank y'all so much for being here.
I like so many others was confused and had no idea what was wrong with me. All my life I had been a very healthy woman with an immune system that most would love to have, but as you noticed I said had been. I am a 51 year old woman 5 ft. tall, use to weigh 128 lbs. very active retired Emergency Medical Tech - Intermediate. I worked in the health care field for over 30 years, meaning I know just enough about medicine to make me dangerous (hehe). My Hyperthyroidism story started last year, around May of 2005.
I'll try to make it short, but with finally finding someone to listen makes me want to jump with glee. As I said, it all started a year ago. I one morning decided to loose alittle weight, not know this was my biggest mistake. After putting myself on a diet of cutting my intake way back, I started to show signs of that weight coming off. Starting weight was 128lbs and the next thing I knew I was down to 105lbs, now this didn't send up any warning flags to me heck I have gotten down to that before (when I was younger). Before I knew what was going on my weight dropped to 93lbs. I started becoming very excited internally, fits of depression and crying jags, failing eye sight, memory fog, muscle loss, and the worse thing my hands and legs would tremor. Slap in the face here I lost muscle strength. Before I finally admitted something was wrong I was weighing in at 89lbs (a weight I hadn't seen since age 10). My first trip to the Doctor was to our GP. I told her my signs and symptoms and just how I felt, snd suggested to her that my thyroid was out of whack. After a raised eyebrow from her (which I should of known would happen, never does a patient suggest anything to a Doctor), she began the tests, blood draw for my thyroid levels, since I insisted and a Pap Smear. Finally after 2 weeks my results on the blood test were back and the pap. Yep, I was right, my thyroid levels were off, showing that I had hyperthyroidism, and my pap was abnormal. According to my GP, the abnormal pap had to be addressed first, and I was off to the GYN/OB Doctor. There a Colposcopy was preformed showing some abnormal cells (dysplasia). The GYN. wanted to do a hysterectomy and scheduled the surgery. Now my blessing in disquise came about, we had just changed Insurance Companies, and they decided on thier own that the surgery would not be covered, stating that it must be pre-exsisting, so I cancelled the surgery. Needless to say that made my GYN mad, ooops I wasn't going to pay for her new house (hehehe).
With that behind me I next went to find out what was going on with the thyroid, so on to the ENT (Endo) Doctor. Here he drew more blood to get his own levels and scheduled a scan on my thyroid. This is where I took the radioactive iodine pill (I was always told I was allergic to Iodine), and the scans were done. Results; Thyroid slightly abnormal, nothing remarkable. Back to the Endo, after talking the results over with him he tells me that I have Hyperthyroidism, I do not have Graves or anything else, as he said it's just hyper (producing to much of the thyroid hormone). He then informs me what his course of action is going to be, prescribing me "PTU", a med that stops the thyroid from producing the thyroid hormone, in addition to prescribing Levothyroxin. Yep, I'm sure your thinking what I thought. Now wait a minute, if I'm taking a drug to stop the production of thyroid hormone, then why am I also taking a thyroid hormone. One would think that the PTU would also kill that hormone being introduced. But who am I to question, he's the Doctor! After a year of decreasing and increasing the dosage of both meds, I started to realize, hey I'm a Guinne Pig.. Like I said I was on this PTU and Levothyroxin therapy for a year, and now the problems have started..
Two weeks ago I developed two rather large Kidney stones, one in the tube was a 9mm and the one in the kidney a 8mm. This meant a trip to the Uro. DR., his suggestion, blast them because I can't pass them. Next step blasting the kidney stones, this went alright no problems, at least not that I was aware of until later that evening. It happened, anyone that has been on PTU has been told that any type of high temp can kill you if not treated. You guessed it, I spiked a temp, after calling the URO. Dr. I was told to go with no delay to the ER. As we all know a trip to the ER is an all day affair, not this time. I reported to the desk and was wisked to the back, there waiting on me was a surgerical team. I had no idea I was going to have emergency surgery, for a elevated temp. The URO Dr finally came in after which seems like all my blood had been drawn out of me for tests. The Dr. then explained to me that the blasting of the kidney stones worked but in turn blocked the tubes now. So it was surgery to open the tubes or become septic and die. Septic? Now I learned all about that in my EMT training, and it's nothing to mess with. Well it was to late, I was already septic, plus my potassium level was near the bottom, this is not counting any of the other levels being way off. My blood was filled with bacteria, and according to the DR, I was in bad shape. But wait I didn't feel that bad. The surgery went on, even with the bottomed out potassium level. I being very lucky had an aggressive Dr. They pushed Potassium, and anti-biotics, and like I said I was lucky I made it off the operating table. I spent one night in the Hosp, and was then released to recover at home. Since then and still to this day I have done more research on Hyperthyroidism, and realized that not once did my Endo Dr. tell me exactly what my T3, T4, TSH levels were only that they were high or low. I was so mis-informed. Well as of this date I decided to take matters in my own hands and take my life back. I D/Ced all meds, PTU, Levothyroxin, and trotted my happy little hinney to a Herb Dr. I know most will think I am crazy for doing this but thanks to the PTU, my blood calcium, potassium levels were almost gone, I was begining to have casscading multiple-organ failures, this drug had already started to kill my liver too. I am at this time being detoxifyied, and have had kelp introduced into my system. It appears Kelp will naturally cause the thyroid to work normally. I guess what I'm trying to say is "If I'm going to be a guinne pig then I'll do it myself." A week has passed with the Herb treatment, and so far I have not had mental-fog, body tremors, eye problems, weight loss, nor does my wedding ring turn my finger black. Then again it's only been a week, I will not, nor will I recommend this type of treatment for everyone, but I wanted my life back, and I don't want a chemical drug to kill me in the end.
I'm sorry for this being so long, I know I said that I was going to make it short, but in order for my story to be told I guess I had to tell it all. I'm going to remain posting on this site (if allowed) for as long as I'm able, and will let all interested in on the results of my decision.
I thank you all for listening, and also for sharing your stories, they made me realize just how in the dark I have been kept, and by my own Endo Dr.
Thank y'all again so much. :)
Hello everyone! My name is Krista, I am 29 years old (I feel 18!?!), I just graduated from college a few weeks ago with my degree in the wonderful world of art. Now to get to the bad stuff/ lifestory:
I've ALWAYS been a very thin person. Up until the age of 21, I've been naturally underweight, when I turned about 22, I started rapidly gaining weight (we are talking 90 pounds in about a year) and I really couldn't figure out why. Eventually, I went from being 5'10 tall, 130 pounds to 220 pounds in no time flat. I couldn't model anymore or continue pursuing an acting career, so I was a little depressed, but not as bad as I am now.
In very early 2000, I started taking Herbalife containing Ephedra. I lost ALL of the weight I gained and was back to my regular 130 that I always had been before. I lost the weight in about 6 months, which I thought was amazing, and I was happy to be back modeling again and doing commercials for tv. I had a wonderful boyfriend who I started remodeling an apartment with and couldn't have been happier. To make a long story short, we broke up after a three year relationship, and I went off to date other people and had fun being skinny again and I felt great. I was still going to college and started working as a professional makeup artist while studying graphic design. I loved my life and everyone in it.
Slowly, but surely, the weight creeped back on. Possibly because I thought I could eat anything now that I was back to 130. I am not sure if that's the case. It took up until 2005 to gain most of the weight back and in May of 2005 is when I started to feel weird. I was feeling so fat and gross, I went to have my thyroid checked because I wasn't starting my period on time and sometimes I missed it for months and it would show up out of the blue. My test came back as an underactive thyroid and I thought that was actually the reason for my weight gain.
I was put on Levothroid by Kaiser, and well, my thyroid is now 2.5 uIU, within normal range. I became suicidal and depressed around August and my therapist put me on Prozac. My hair started falling out pretty bad about 6 months ago and I stopped having a period for 4 months in a row and finally started again. My hair isn't falling out as bad as it was a month ago, but it's still coming out. I am still overweight and pretty much SICK of it. My doctor keeps telling me that the hair loss is caused by stress, but when I read responses here, it says that their depression and hair loss is caused by the thyroid condition! I don't know what to to. I see people on here changing meds, seeing other types of doctors, etc. I think I should be doing this too.
Thanks so much.
Ok, for those that have these issues and don't see the light at the end of the tunnel...
Last November I could hardly get out of bed. I was either eating all the time or not eating anything at all. I went from running a half marathon and lifting weights to not being able to workout at all unless I was to run at almost half my "normal" pace.
Since starting meds: I have worked my way up to running a 5:46 min mile and surpassed my old running speed (on a treadmill) from 9.2 to 9.4 mph for 20 min straight.
I am able to lift weights again without feeling weak. I have finally dropped some weight and started to gain muscle. Something I was not really able to do (especially the muscle gain). I was able to lose weight, but had to workout very, very hard to do so. Back in November I was running everyday and could not lose any weight. The first two weeks of starting thyroid meds I initially dropped 10 lbs and then started gaining it back (either due to needing increase in meds or this was pure muscle).
Even though I hate feeling the way I am now (even though it is sporadic it is getting worse) I know how far I have come in the past 6 months and know that it will get better.
Find a good doctor. That is key. I did my research after my GP blew me off. I used this website and others to find prospective docs. I then sent emails to a couple and then the doc I have now was the first that I went to. At first I thought I made a mistake because he focused on other things. He was simply trying to rule things out. When you feel as bad as I did you only want resolution and when docs focus on other things you get upset, angry, and depressed that you will never feel good again.
After other things were ruled out we focused on the thyroid. I was the one that ordered the cortisol test on the side and brought the results with me. I believe this was key because the adrenals really have to be supported before you begin thyroid replacement. When they saw the results they immediately started me on adrenal meds for three weeks before deciding what to do next.
I felt symptom improvement withing 2 weeks. I was having episodes of dry heaves and/or vomiting, adrenaline spikes just to keep me awake, and weird hormonal "waves" not unlike hot/cold flashes. These started to subside.
Then I was started on a compounded form of T3/T4 and have been on it ever since. I have had two dose increases and am currently on 35mcg T3 and 60mcg T4.
I am also on replacement therapy of testosterone (my levels went down to 226). I inject .25 mg of 200mg/ml testosterone every 3 days. This has helped out as well.
So, do your research. Find a good doctor (easier said then done). Present your research (I presented the T3/RT3 ratio to my doc who now monitors that with me). That ratio has gone from 0.98 to 1.33 (over 2.0 is ideal). My RT3 would not budge from 31 and went down to 26 after the thyroid meds.
A good doc will listen to your arguments and research and if sound will at least give it a shot.
Finally, make sure your doc treats on symptoms as well as labs. Symptoms are key especially if you have "normal" labs. Mine were all within "normal" range but were not optimal and the RT3 was affecting my T3. My TSH would fluctuate from 4.541 to 1.91 for no reason. This is usually indicative of an autoimmune thyroid disorder (even though I have no antibodies).
It also helped that my mother (who has diagnosed Hashimotos), came in for treatment and has almost all the symptoms I had/have. Find out if you have any family history of thyroid. My mom has it, her sister has it, and now my mom's niece has it (we encouraged her to get checked due to history). We suspect my grandma had it as well.
Don't give up hope. You are not crazy and you will start feeling better once you find the right doc. I won't lie. It has been a long road and I think there is a lot more to travel, but it has been worth it.
Thanks to all that have given advice and encouraged me along the way. I know you all will be there in the future.
Had U/S of thyroid in 2005 for multiple solid nodules in right lobe and region of isthmus. The dr order thyroid uptake and scan in 2006 which was negative thyroid scan and euthyroid uptake and I have NO idea what that means.
Dr. didn't say a word - so I guess it means everything is alright.
Had another u/s done in March, 2010. Wo. Lots of stuff. The nodular density has enlarged and the isthmus anteriorly as enlarged and demonstrates hypoehochoic halo. Increased vascularity is also seen.
[I] FNA in April, 2010 - consistent with hyperplastic nodular goiter. Repeat FNA within 12 months.
Same FNA - different lab - 1.8 cm nodule of undetermined significance. (The FNA specimen shows a monotonous population of follicular cells arranged in cohesive clusters. No nuclear features of papillary carcinoma are seen. We also notice few cell groups being infiltrated by lymphocytes in the form of "tangles" suggesting an element of chronic lymphocitic thyroiditis. [/I]
I will repeat FNA in September, but in the mean time I am going to find at least three top endos to send reports to and/or see about this. I have no symptoms for thyroiditis presently but did in 2005. The doctor at that time wasn't interested in my symptoms at all.
My daughter had her thyroid removed in 2005 (which prompted me to have mine checked). She hasn't been the same since.
I wish the nodules would just shrivel up and go away. I don't want the surgery, but the only way to determine cancer is to remove the thyroid.
It's just a shame the majority of doctors don't care about the patient after surgery - just my opinion. I am presently watching my beautiful 25 year old daughter suffer with brain fog, weight gain, and on and on and on. Ever since her thyroid was removed to determine cancer - which there was none.
Here we go...weeeeeee
Although I really feel for you all, its good to no there are others out there who know what I have to go through. When I talk to people, they don't see how horrible things can get for me at times, they think it's not too bad. They think that taking medication for the rest of my life is easy. It's not. Im only 20 years old. I was born without a Thyroid Gland. I was dignoised when I was 3 days old. Im hypo when im hyper. I experiance all symptoms at the same time.
I have days when I wake up and decide ive had enough- im not taking them anymore. Why should I have to depend on this medication all the time? It was difficult growing up thinking I was alone-I didnt no anyone with this problem. Thinking I was some kind of freak...obviously growing up I fully understand what was happening. For the last 4 years no doctor has been able to get everything right. Exepct the one doctor i have now. For the first time in a long time my test results have come back normal. That was a month ago. Now ive began to feel symptoms- severe pain in my left hip, left knee, left lower calf, left ankle. Im unsure if this has anything to do with our condition. I should no by now considering Ive been dealing with this for 20 years. But like I said, I thought I was a freak-and as my levels have been wrong for such a long peirod of time I was having lots of depression and sucidal thoughts. I never bothered to get in touch with people who could understand this. Im feelign alot better now- and my bf is so supportive. Reminding me every day-putting my medication on the wall so I see it everyday-he's so supportive!! Anyway, this is the first time i have posted. Im young, yes, but would really really appriciate some friends who I can talk to that .....know.
Hello. I'm a newbie on this board. I happened to change Gynocologists. She just happened to do bloodwork because I hadn't gotten my period since Jan '10. I'm 49 years old and I just figured it was Menopause. The crankiness and the no period I thought were for sure Menopause. I have no weigh gain or loss. And a bit fatigued, but nothing too bad. My thyroid came back HYPER. I went to an Endocrinologist and had the sono and radioactive Iodine Uptake scan of which came back NORMAL. And while I'm very happy to hear that, my bloodwork is showing different. 2 weeks ago it showed I was HYPER, THIS WEEK it shows I'm HYPO!!! The Endo dr wants me to start on Synthroid 75 mcg. I am NOT a med taker!!! I also have no intention on taking this medication until I get a second opinion. I said "how can that be that in 2 weeks my bloodwork shows different?" She had no answer (time to change drs!) and wanted me to start the meds. So not! My mood is ATROCIOUS and still haven't gotten my period but then again I always got a very light period (thank you, God). I know why I'm feeling like I am and try to control my mood best I can but WATCH OUT FOR ME! lol My poor husband! I'm going for a second opinion and am not starting the Synthroid. Until I know for SURE that it's HYPO, no. No meds. I see there's such thing as Thyroiditis. Anyone that has that - do you take meds? This board is WONDERFUL!!!!! And so helpful!!! Thank you!
Hello, This is my first post on this site, but Ive been perusing for a while. There are some really knowledgeable people on here that have experience so many thyroid issues. I really appreciate all the insight any of you may be able to offer.
I was involved in a motorcycle accident 25 years ago (age 15) and as a result developed kidney stones from all the broken bones. While I was in the emergency room in the late hours for the kidney stones the tech repeatedly injected me with imaging contrast anticipating the the radiologist to come review the scope or whatever they look at. I received approximately 3-4 doses in a 5 hour period of time.
Ever since that time Ive suffered from extreme bouts of depression, anxiety and panic attacks, bouts of anger / rage / irritability and often mentally 'out to lunch'. These symptoms would come in swings although initially seemed to be pretty constant.
I eventually pieced together that if I ate foods that were high in iodine i.e. sea food, dairy, sea or iodized salt, kelp, etc I would have a swing a number of days later. This was HUGE. I was able to have some semblance of control over what was until then a catastrophic tailspin that my life had become. So this went on for another 15 years where I controlled my symptoms (sometimes loosely) with my diet.
Interestingly though I began to find that when I eliminated overt sources of iodine (impossible and detrimental to get rid of all intake) mentally I became more forgetful, more out of it. My drive and motivation suffered and I became more irritable. Seemingly a little hypo. So I would ingest a meal with iodine, and like clockwork I would get a swing of the above mentioned symptoms, BUT I would also experience a window where I was right on and felt 100%.
So this became my routine and it worked, however crudely, for a while. Over the past 5 - 7 years however Ive noticed that even when I would take my iodine the feeling of being 100% became less and less. Same with the extremely negative feelings of depression and severe anxiety, which was a very good thing. I still do get really grumpy when I have the iodine, but nothing like how I used to get. Rage was a better term. Now it seems Im at a perpetual 70% level without a way to achieve 100% and the frustration of it has forced me to seek the help of a doctor (I have absolute disdain for most doctors for obvious reasons).
After finding a GP doctor and explaining my symptoms he said I didnt have a thyroid problem, and was pretty dismissive of the entire thing. Said perhaps I was having seizures from a head injury from the accident and wouldn't refer me to an endo. As he was wrapping up his summation and as a passing thought did a quick palpation of my thyroid and discovered a nodule. Gave me a script to have an US done (at least he was competent enough to do that).
US came back as a complex mass that may have calcifications, size 2.4 x 2.2 x 1.5 and they recommended I see an endo. I went to an endo and he (after reading the 'comments' from my GP) seemed a little doubtful that my symptoms where a cut and dry thyroid issue, but did want to have a FNA done of my nodule. My labs came back in the "normal" range btw, although because I imagine they fluctuate with my iodine intake this these have to be relative to that.
The results of the FNA which was done on 05/11/10 were inconclusive, even still they recommended I have it taken out surgically. I declined and said Id rather just keep an eye on it with periodic US. Because the nodule was complex, 2/3 a gelatinous and the rest solid, they were able to reduce its size considerably by the number of 'samples' they took. Now, 23 days after the procedure there's another lump pretty close to where the first one was and a little bigger than it was originally (there was no palpable lump immediately following the FNA) . I've read that this doesn't necessarily mean anything one way or another but was still a little worried.
Has anyone experienced and increase in the size of their nodules immediately following a FNA?
Also has anyone developed the same types of symptoms as mine after receiving imaging contrast for a CT or any other procedure and/or finds that the consumption of iodine precedes their symptoms?
Thanks for your interest in reading this looong post and I really appreciate the help any of you may be able to offer.
Just found this site, so much interesting information its going to take me months to read it all!
Hello to all, I have just been to the doctors and had to insist that he give me some treatment for being hypo.....if not I was going to go to the chemist and buy it myself, I felt so desperate for help with the symptoms. I have been plagued by dry skin and hair, sleepless nights, always being freezing cold etc for over two years now.
Six months ago I started gaining weight weekly , despite being in heavy training with weights, kickboxing and power walking six days a week (I compete as a female bodybuilder at the age of 55 years). I cut my calories down to 1000 a day, but even that did not help the weight gain. Then I started feeling depressed and low and found it hard to keep up my motivation. I applied for a test for thyroid, had it done, then the Greek nhs decided they no longer pay for them to save money.
so I went and paid for it and the T3 and T4 are normal but the TSH was slightly raised at 5.9. I went back to the doctors and he told me he wanted me to have a scan done of the thyroid gland,but he said I would show no symptoms at these levels....
I am afraid that I lost my temper........I have been suffering long enough to know it is not right!!!! So he gave in and put me on 50mcg of T4 daily. Within half an hour I felt better than I had for months and felt warm for the first time in a couple of years! I have an appointment for a scan next week. Why do doctors not listen to what you are saying to them??????:mad:
Hi Tree Frog and everyone! Tree Frog, you have said a lot of what I want to say already, this is a search for the problem I am having! I have been a active woman all my life, raising five kids, have husband, job and all of those things. I am a small woman, and never really struggled with weight problems at all. Not until the last four years anyway. For no specific reason, I have lost my energy almost entirely, could sleep most of the day if I could, am foggy headed most of the day, when I used to be a pretty quick minded type, used to love doing things. As I said above, this did not happen overnight, but has been progressing for the last four years, I can't seem to lose weight, even though I have dieted faithfully, done yoga, weight training, walking, even though I have to muster up all my energy I can possibly find, I'd lose maybe 2 lbs or so and thats it. I haven't gained a lot of weight, but would be a lot better if I could lose a few lbs. My hair is a lot more brittle than it used to be, my nails have ridges in them and sometimes I look just plain crappy, no matter how I do my hair and make up. The biggest problem is the total lack of energy, I can get 8 hours of sleep a night, but if I go to the grocery store, work in the garden, take my son somewhere, I come home exhausted, and head for the couch, for a rest, so I can muster up the energy to go on with my day. I hear the same old things with my doctors, my primary, and my gyno both said, well you know, your getting older and things slow down, yes I can understand this. Surely I do not have the same energy I had at 25, or even 45, but to have it all go away? MY gut instinct tells me there is more to the story. My regular md, ordered some blood tests and said my thyroid is okay, (this has been a few years) and then my gyno, a nice young woman dr also did this (also a few years ago) and said you're thyroid is ok. She thought I might be depressed, although I have never had this problem, or don't even have another family member who has this problem. She put me on some sort of prozac pill, which I did not like, it made me more tired, and made me gain weight, she urged me to take it for a few more weeks, I did, but they did nothing for me, so I gave them up. I don't believe I'm depressed, frustrated for sure!, but not depressed. I do have a lot of muscle aches, carpal tunnel in my left arm, yes I get sore muscles and acquired a slipped disc with a little arthritis in my lower back. The energy level is getting worse and worse, my kids gave up asking me to do things with them, since they say, Mom you are always too tired, or sick. Its wrecking my life! I wake up each morning only to drag myself through the day, wishing I could live a normal life again. I also seem to have a shortness of breath as well. I am going to another doctor on the 28th of this month, and am going to plead with her, to test me again, and tell me why this is happening. When did it start? I didn't have any serious injury or anything, but after seriously pondering this, I believe it began after my hysterectomy in 2005. I still have my ovaries, just no uterus. I started out being a little more tired than usual, but its just gotten worse over the years. After much research online, the underactive thyroid seems to fit the symptoms I have the best, after all I've read, outside of anemia, but you usually lose weight with this I think, so the underactive thyroid fits very well. I would love to hear any feedback anyone has on this, and I look forward to reading your stories as well. Thanks!
I have a long story with tedious details if you can bear with me:)
I am currently in search for the root cause for my symptoms and am now in the process of looking deeper into thyroid and hormonal causes.
For me it goes like this:
I have lived in a lot of fear and anxiety my whole life and have had panic type of attacks and some fainting also from low blood pressure over the years. I have found in the last few years I have become more emotional around menstruation time sometimes severely, more forgetful. Currently my periods are fairly normal but I KNOW something is going on with other symptoms as I will mention.
Where do I start? Well about 2 years ago I was diagnosed with Acid Reflux disease (which is barely there now thank God) although I was eating fairly healthy, my research says this is from stress. Then about this past Sept 2010 I starting getting headaches-strange ones, one lasted a month straight and sometimes I would feel slightly nauseous and light. I got a CT Scan- "It is just stress". Well that went away. Soon after (Sept.) I started a job that was hard on the wrists and developed severe Tendonitis in both wrists- after only one week of work! At that time as well I started developing a lot of muscle pain everywhere (and still feel it on and off more in my back) especially in the back of my thigh. I had swelling in my ankles even a lot at that time (still Sept /Oct 2010). This leg pain and often wrist pain continued all this past fall an into Christmas especially with my leg- and a lot of times the circulation would be cut off. (I did fall down as well around this time- the leg thing MAY of been from that but not sure due to aches mentioned)....
Well all is alright, usually the aches were bearable... and then about the 24th Dec got very bad heart burn and nnoticed some of my food was not being digested properly in my stools..SUDDENLY...a few days later all of the weird stuff really started. This what happened.:
1) heart palpatations- kind of like a panic attack and I had a weird fearful feeling and unreality on my brain before this happened. My heart jumped to a fast and strong beat. I went to emergency- they checked my thyroid and said maybe bc I took Pseudophedrine I went into a Thyroid disease. All clear. The Dr. said, "Ok, what is wrong in your life are you under stress?". I said, no not really. Gave me some seditives and went home.
2) a short time later I started having ongoing shortness of breath, severe heart palpitations. Go to emerg again, have chest and lung exray, even a lung scan- all clear. Dr said if it is astma, here is a puffer perscription. Generally feeling nervous (not visible-yet). So I starting taking a multi vitamin with natural amino acids and a little bit of a detox formula (this is all about end January now) and a lot of vitamins/minerals/natural supplements.
3) ABout Feb 1/11- BAM! I wake up VERY dizzy and light-headed- bad diareah, parasites, etc in my stools (sorry for gory detail), an dI can barely function mentally and physically,. At hospital with a day or two and they checked my blood, liver adrenals- all good. Hmmm.....Dr. called it a virus and it should go away in a couple days. It didn't.
4) In the meantime I get my heart tested- stress test and moniter test- "your heart is strong and healthy"
5) This all continues for a couple weeks, and I cut back my hours at work because I felt like someone stuffed my head with cotton balls and I could barely think or function. I lost at least 10 pounds in 2 weeks. Still I am taking no meds except for some natural serotonin boosters which helped sometimes (5HTP). Feb11 th I can't take it anymore I go to the Mental Health ward at the hospital. I get a referal to a Gastro specialist, find out that blood is good, get a diagnoses from a Psychiatrist that I have Panic Disorder and Major Depression (all the while I am saying- NO THIS IS ALL MORE PHYSICAL I HAVE HAD NO TRAUMA!). Get a prescrip for anti- depressants and anti-anxiety- I do NOT take them.
5)Beginning March- found fogginess lifting but still experiencing: light-headedness esp at period time, some aches and pains random, pain in eyes and some blurry vision, eyes almost feeling crossed. Went to Gastro specialist who said "This is classic Hyperthyroid!!!" I said yes, that is how my symptoms have been. He is doing colonoscopy end June 2011. Also showed in ultrasound I have 3 small gallstones (no doubt from rapid weight loss and malabsorption)
6) mid-March to now- had CT scan- still waiting to hear back. Now, beg April I have noticed for a while a bit of a more obvious nervousness and can feel in my body ALTHOUGH a lot of my anxiety is gone, it is in my body. From the beginning to now I have some insomnia (feel adrenaline a lot or something) but can sleep 6-7 hours unbroken with calcium and Valerian Root every night. I feel restless, still very headachy at time but my eyes are better. I get achey in my muscles a lot and I am still a bit forgetful.
SO this is where I need to get tested I am thinking:
1- recheck vitamin levels bc of malabsorption
2- check hormones (My Dr thinks there is no need I am too young at 40)
3-do MORE thyroid tests- HERE ARE THYROID TEST RESULTS SO FAR:
Jan 28/11- TSH -1.57 (Range 0.35-5.00)
March 2011- Free T3- 4.7 (3.5-6.5 Range)
Free T4- 15 (9-23 Range)
4-check cortisol, adrenals
5-check any specific nerve problems
6-full blood panel?
8-food allergies (Dr said specialist should do this)
I may be forgetting something, but I hope this makes some sense and perhaps someone may have some opinion about what is happening? I just wonder what started all this- the stress, the hormones, what? I mean if someones serotonin is generally good how can they say you have major depression? At least I am getting better but something is still going on . I still have the malabsorption but it isn't quite as bad.....Any thoughts are welcome and thanks for reading! I can expand on something to explain better, I am just in a hurry today:P
Hi all I'm Chantelle and here is my story.
I was born with no thyroid and so I have taking Synthroid since I was 3 days old. Like all children I just wanted to be 'normal' and so I started telling my parents when I was 14 I had taken it when I hadn't. I didn't take it for a total of 3 months.
I did not like to admit it to them but soon after I started feeling really tired and didn't want to do much and when it was my annual blood test at my doctors, my parents were shocked to discover my TSH was 100 +! My doctor didn't believe I was taking it and in front of my parents he said these exact words to me "Chantelle if you don't take this medication eventually you will DIE". Well after hearing those words I started taking it and haven't missed a dose for 14 years.
To the newly diagnosed don't worry about your fertility as my mom had her thyroid removed at 29 and had my sister at 31, my brother at 42 and me at 43. I have 3 children myself, my brother has hypothyroidism and he is a father of 3, so far it has not affected my sister.
About passing the disease on to your children.
All children by myself and my brother are all healthy thank god.
Synthroid has never affected me, I grew to a good height 5'7, have healthy hair and fingernails and have been overweight in the past.
I am new to this board and just found this thread and had to join in.
I am 23 and for as long as I can remember I've had anxiety issues. I remember being 5 years old and having anxiety attacks every single day. So much so that I can have even a severe anxiety attack and no one around me will know it.
At 13 I was taken out of school and put in homeschooling because I had missed several days due to severe swelling in my knees. Within a year I went from being 94lbs to being 170lbs. I was never a lazy kid, but after I was put on homeschooling I was depressed, extremely fatigued and experienced a lot of joint pain. Because I have almost always complained about pain, unless I had any sort of physical proof that something was wrong I was told it was all in my head. Thankfully though, in the process of identifying what was wrong with my knees my doctor noticed that I had gained weight and asked me if I had been feeling depressed as well. (The only reason I was taken to the doctor for my knees was because they were visibly swollen after running around the field at school.) He originally thought I had mono but tests for thyroid conditions to be on the safe side. That's how I found out that I had hypothyroidism. My doctor told me that it was probably the cause of my weight gain and depression but did not go over the rest of the symptoms that go with it. He put be on synthyroid and over the course of a year tested every few months to be sure I was on the correct dosage. He did explain that this is likely something I would have to take everyday for the rest of my life. By this time I had just turned 14.
After we found the right dose that worked for me. I was on the medicine all of maybe 3-4 months before my mother agreed that I was fine now and no longer needed this medication. When I was 15 I started to develop allergies and severe heartburn. When I revisited my doctor for this he strongly urged that I continue to take my synthyroid and so he prescribed more. Once again, my mother decided he was just trying to sell me medication I didn't need so we never filled it.
By the time I was 17 I was severely depressed and very suicidal. I've always been against suicide but the thoughts were always there. I never thought twice about the source of my depression since I had only online friends, dealt with some molestation by one of my mother's ex boyfriend (she never believed me and continued to let it go on for 3 years), the fact was her boyfriend at the time was verbally and emotionally abusive, my older brother was the same and that my mom had two children with this current boyfriend that I was expected to take care of every single day. So depression seemed only natural.
When I was 18 I finally made real friends and I have been relatively happy since then. However, I worked at a retail store for years, at first I loved this job. I thought it was fun, friendly and kept me busy. Sometimes I would feel slightly faint. I would feel lightheaded and like I was juuuust about to pass out. This feeling became normal to me. If I did say something to anyone in my family it was always dismissed as me being lazy and not wanting to work. After working there for a while my weight stabilized at 140lbs. I worked night shifts there one Christmas season and despite the extremely strenuous work I did stocking I only lost 5lbs. After that season was up I went back to working days, gained 10lbs and the happy conditions at work deteriorated. I attributed it to having a lot to do with the new supervisor trying to get everyone fired by lying to the managers and spreading rumors about them. But I was growing paranoid about people ganging up on me behind my back and stressed with having to go somewhere almost everyday with people that I couldn't stand. My hair started to fall out. I decided it was time to quit and go back to school. This was last summer. My hair didn't stop falling out until earlier this year. But it has since start falling out again, I've gotten back up to almost 160lbs and my hypo symptoms seem to be returning. Little did I know that I've had them all along.
Going through and actually researching it for the first time do I notice that all of these things that I have been made to believe are normal or all in my head have all been actual symptoms of something I've already been diagnosed with. It just makes me angry to not only be dismissed so easily but actually made to believe that I was crazy or just wanted attention. The only person to ever sympathize with me was my aunt who also has hypo. I do not currently have insurance or a job. After finals for this semester I will get a job and try to get back on my synthyroid. I've barely been living most of my life and I made up my mind a while back to stop letting others hold me back from things I need for myself.
First off, thanks so much to everyone for sharing their stories. The suffering is so evident and frightening.
I am 52 and up until October of 2010 I was healthy (I thought I was just getting old)
Over the past couple years I have fought with fatigue and weight problems despite a good diet and exercise. I had my TSH level checked once and it was normal so I thought I was just having the usual stuff that went along with aging. I had muscle cramping and joint pain as well as insomnia and brain fog and my hair was falling out in hand fulls, but because the doctor said my thyroid was normal, I accepted that.
Then in October I got really sick with pneumonia! Never been so sick, three bouts of antibiotics and almost 3 months to get over it. I had a terrible cough.
Then in the new year people started asking me if I was sick, or had a cold. I didn't but my voice had drastically changed in that is had become very hoarse and croaky. I thought it was because I coughed so much when I was sick
I finally went to check it out and my PCP felt a "lump" and sent me for a ultra sound. He also did a TSH which came back normal at 0.82. Again the thyroid was okay!
The lump turned out to be a huge tumor that was compressing my vocal cord and was growing in my thryoid. He sent me to an EENT, who after a FNB suggested removal of the right thyroid with possible total. Lucky it was not cancer and he did not have to remmove the left side. I do have permanent paralysis of the right vocal now, but my voice is getting stronger each day.
I had surgery on the 21st of March, felt great, when home next day, no pain and back to work in a week.
Then noticed that I was not feeling so great, really tired wanting to sleep ALL the time, muscle cramping so much more worse than ever. Hair falling out and migraines daily. Every bone in my body ached. I thought I was going crazy....
fast forward to my follow up appt with EENT on April 20th. He walks in room and says "how are you today" OMG, I burst into tears! I never cry! Instead of running out of the room, he pulled up a chair touched my hand and said tell me how you are feeling.
I told him...LOL
He said no wonder you are feeling that way, you are hypo. My TSH was 9.7 with Flex Free t4 of 0.8
He said he is not totally up on caring for the thyroid but that we will work together to get me straightened out. He said that a lot of endo's don't recommend treating hypo unless the TSH is over 10 but he was not willing to do that as it is evident that my thyroid is failing and he was not going to wait to treat me.
There are no Endo doctor where I live, so happy he is willing to work with me and help me.
He started me on Synthryoid 75 that day. Said we would start at that dose and recheck in 30 days or sooner if I started to feel worse. Today was my third day on it and so far no change but I am hopeful after reading this forum and seeing how awful a struggle some pple had gone thru, and blessed that my doctor is willing to work with me and help me.
I feel so bad for what some of you have had to endure.
I think these forums are a wealth of information and acceptance and advise, and I am sure that with the information here and a doctor that is willing to work with me that I will once again be able to enjoy good health.
I hope that for all of you too!
Wow! I can’t believe how many people are having such a hard time with this, and that they still understand so little about the thyroid. I wish everyone the best, and hopes of having answers and feeling better quickly.
Before my story began, I thought I was a pretty healthy 33 year old woman. I just had some sensitive skin, severe lactose intolerance, the occasional migraine (maybe 1 a year), Endometriosis, Hypoglycemia (controlled very well with diet), and IBS (only acted up when I drank a few alcoholic beverages, or got really stressed). I also had a lot of sensitivities to medications, fragrances, and chemicals. It was overall, not too bad and very livable.
My story begins July 26, 2010. We were currently finishing a remodel on our home, and having a garage sale that day to get rid of some of our old things. I began feeling strange during the sale. By the time we had cleaned everything up, I felt even stranger. I was weak, feeling cold and sweaty, I was having trouble thinking, and I felt like I was going to pass out. Even though I was either in the garage with a fan or in the house with AC, and drinking a lot of water…I thought maybe I was having heat exhaustion. I was getting worse, so we decided to go to the ER. At this point I was also having a terrible migraine and feeling nausea, so my parents stayed at the house with my son while my husband drove me. I began throwing up in the wait room, and it didn’t seem to help my migraine any (like it would in the past with migraines). They checked my BP (low, but okay), they checked my temp (fine), they checked my pulse (85, high for me), and they did and EKG (which was fine). When I saw the Doctor, he said he wanted to run a bunch of tests. He said he was concerned about an aneurism, and meningitis. He also wanted to give me a drug for the headache and nausea. I told them I was really sensitive to most drugs, and would prefer not to. He convinced me, and they began putting Reglan into my IV. With about 3 drops of it, my pulse raced from 72 – 120 and I had a panic attack! Later, the Doctor came back to say that the CT of my brain didn’t show an aneurism, and all the other tests were fine. He also said he wasn’t convinced this was heat exhaustion (since I showed to be well hydrated), and felt like something was really wrong with me…then he sent me home! That was a Saturday, and he asked me to follow-up with my GP Doctor on Monday.
Well, my GP Doctor wasn’t in on Monday, so by the time I saw her on Tuesday I had a list of new symptoms that were happening since Saturday: Headaches, neck/lower skull pain, anxiety, panic attacks, cold sweats, fatigue, brain fog, body pains, and much more. She had me go get more blood work, wanted me to start an anti-depressant, and sent me to see a physical therapist for my neck/lower skull pain. She thought that maybe I hurt myself during the garage sale, and that the experience at the ER may have started some anxiety/panic problems for me (which I have never had in my life). The blood work was a just-in-case. The antidepressants made me way worse (suicidal thoughts), so I stopped them (Doctor completely agreed). She asked if I would be willing to try one other kind, so I did. It did the same thing. I have always been very sensitive to medications. I’m one of those people that get all the side effects, and even invent new ones. We decided to try a low does of Diazepam, and to use it as needed. It worked well, even helped with the sleep problems that I now had too. The physical therapy seemed to be helping my neck (sometimes), and all my blood work came back normal (including a TSH of 1.66).
Eventually, I stopped the physical therapy, after it seemed that my pain would just come and go anyway. It has now been a few months and I still had all the same symptoms, plus some new ones. I was now losing lots of weight (even eating very well), losing lots of hair, getting a petechiae rash (mostly on my legs), having terrible heat intolerance, but sometimes freezing too, weak, muscle/joint pains, muscle cramps, body pains, reflux, indigestion, heartburn, using the bathroom a lot, very soft stools, dry skin (seems like I can’t lotion enough), blurred vision, dizziness/vertigo and many more. My Doctor sends me to get an MRI of my neck area, and to see some specialist. The MRI came back normal, just some slight protrusion at C5 and C6. The Rheumatologist diagnosed me with Fibromyalgia. The Neurologist diagnosed me with tension headaches, wanted me back on antidepressants (NO WAY), and confirmed the Fibro. The Dermatologist said she thought my rash was from Ibuprofen, and to stop taking. Then she also diagnosed me with psoriasis and eczema. The gastroenterologist thought it was my getting worse, and maybe my gallbladder. I had a HIDA scan done, and it showed my gallbladder low functioning (45% functional). It was never a problem before all of this. He said not to eat fat!
My GP Doctor didn’t really believe the Fibro part. It doesn’t explain why I was losing weight. She wasn’t sure what to do at this point. They had ruled out so many things, like: MS, Lupus, and thyroid (so she thought). She said lets give it about another month. My anxiety was pretty much under control at this point (so we thought). She said that time may show which symptoms stand out the most, so she will know where to look next. I think I had her completely baffled. The poor thing was trying so hard.
In the meantime, I saw a Chiropractor, Nutritionist, and an Ophthalmologist. The chiropractor (using applied kinesiology) determined I had a soy intolerance. So, I cut out all soy. It did make a lot of things better, but not gone. We also worked on adjustments that were supposed to help with Fibro. The nutritionist said that I was bringing in 2300 – 3000 calories a day, but couldn’t understand why I was still losing weight. I started off at 143lbs, and I’m now 116lbs (64in tall). She thought it may be due to my low functioning gallbladder, and wanted me to go on a high protein – low fat diet. Then my gall bladder would allow me to get the calories from the food since it wasn’t so hard to try and process the fat. It didn’t seem to make any difference. At last weigh in I had lost another pound! The Ophthalmologist said my eyes were fine, so he could see no reason for my blurred vision.
I saw my GP Doctor again. I was really upset, and told her I needed to get better. My husband needed to miss less work, and I wanted to be able to take care of my 3 year old son better. She sent me for more blood work. She and I both feel like my symptoms scream thyroid problems. The TSH (2.35 this time), T3, and T4 all came back in range. She said she could send me to see an Endocrinologist anyway, so I did.
The Endo says that maybe my TSH normal range before all this was .3 (example), and that my symptoms are because I am out of what “my body” considers normal. She sent to have it tested again, as well as testing for antibodies and my cortisol levels. I think she is also testing my calcium levels. I’m now waiting on the results, and I have a follow-up appointment. She said that there is a problem though. If I test with antibodies (Hashi’s), she wouldn’t treat me now. She said it would make the weight thing worse, and that losing weight with Hypo is very rare. She would just watch my numbers, and treat as things change.
My GP Doctor has also referred me to the Mayo clinic at this point, and I have an appt with them on May 26th.
Sorry for such a long story. I was hoping to either help someone with all this information (or at least help them feel not so alone and crazy), or maybe someone has some information that may help me. Good luck to everyone!