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Addison's Disease Message Board


Addison's Disease Board Index


Hi, I'm new to this board and not really sure what is going on with me. I posted on the digestive disorders and on the high/low blood pressure board. The more I read, the more I'm finding out about what might be wrong. Sorry this is so long, but I'm hoping and praying that someone will have some advice for me.

I am 36 years old, have three kids and I'm happily married. I've been sick for many years. The problems really started when I was pregnant with my first child at 18. It was a normal pregnancy, until the 6th month when I had a fever of unknown origin (105.8) that sent me into premature labor. After that, it was all downhill. I started getting sick all the time with colds, flu, strep throat, chronic yeast and bladder infections, mouth sores, allergies (that I didn't have before) and so many other things. I got salmonella when I was 23 and nearly died from it. (misdiagnosed)

As I got older, fatigue set in, as well as bouts of extreme leg pain. I was diagnosed with IBS at 25. I kept gallon size baggies of ice to take to the restroom with me and cried with every BM. The IBS miraculously disappeared after they found I had endo and adenomyosis and removed my uterus at 29.

I was tested for hypothyroid, Lupus, MS, Sjogren's, RA, can't even recall everything. My doctor said he just new I had an immune disorder, but all tests were negative. I was diagnosed with GERD, Reactive Arthritis and hypoglycemia. I had to have an ovary out a year after the hysto due to a bleeding cyst. (I had polycystic ovarian syndrome) I have fibrocystic breast disease and had a 2cm adenoma removed from my neck 4 years ago and a 6cm fibroadenoma removed from my breast two years ago.

Here's a list of my symptoms:
Low BP 90/60 down to 70/40 at times
Low temp. 96.5 on average
Hair is falling out
gallbladder spasms
abdominal pain
nausea & vomiting
intense pain in my lower back, butt and down my legs
kidneys feel like they're throbbing
spasms in my legs and they feel like I have no more muscles
headache
dizzy
extreme fatigue (especially in the morning and afternoon)
low blood sugar episodes (have to cram food in my mouth, sweating, feel like I'm going to pass out)
extreme thirst
salt cravings
moody(biting everyone's head off, husband says I'm hormonal)
depressed
lost 10 pounds in two weeks (and it's not from not eating...I HAVE to force myself to eat with hypoglycemia)
skin has changed in short time (lots of spider veins everywhere and vitiligo on my arms)

I have found that the Licorice Root I take for GERD raises my BP by 20 points! My BP dropped to 76/46 last Saturday morning and I took the licorice root. Withing 30 minutes, my BP was 90/53. The hypoglycemia is getting worse. I used to have problems once or twice a month, but now it's almost daily. My kids know when to run and get the orange juice and candy by just looking at me. I'm afraid one day I will just pass out and not wake up.

I now have no insurance and I've been through the ringer with doctors. I have an appointment tomorrow with a gastro about my gallbladder and I'm scared that I'm going to get the run around about the other problems again. They always ask me how my home life is and want to prescribe Prozac. It makes me want to scream.

Does any of this sound like Adrenal problems to any of you??? Should I be more proactive and ask for specific tests? Does anyone live in Texas and have a WONDERFUL endocrinologist that listens and is willing to work with someone to find a cause? I'm just so tired of being misdiagnosed and told it's all in my head. This is getting worse and I'm really nervous.

Tina
Tina,

Hi! My goodness, you must be feeling awful. I'm so sorry for everything you're going through.

Alas, I am not one of the experts on here, so hopefully they'll chime in, but your symptoms definitely would definitely make me suspicious of adrenal fatigue or even Addison's.

I have been diagnosed with adrenal fatigue, and my main complaints before meds were hypoglycemia and suicidal depression. I started Cortef about a month ago, and oh, what relief!!! I am not exaggerating when I say that the Cortef probably saved my life.

My hypoglycemia, like yours, started out with infrequent episodes about 15 years ago, but by the time I got into the right doctor about 3 months ago, the episodes were everyday, sometimes several times a day. It was almost as if there was nothing I could eat that would make me feel good. Even my "emergency" food--orange juice, just like you--wasn't working anymore. I got to where I was having anxiety over simply eating because it was pretty much "damned if I do, damned if I don't". It was really awful. And all the doctors ever told me about it was "you need to eat every two hours". Argh!!! :mad:

I also have low progesterone. One reason I mention this is because progesterone also affects your blood sugar. And with you having had "female issues", one thing I would wonder about is your hormone levels.

Something that really helped me with the hypoglycemia is raw adrenal glandulars. The Cortef is working well for that now, but some afternoons I still have to take the glandulars for a little help with the hypo. I know some people have differing opinions on glandulars, but I'm just mentioning this because I was absolutely desperate to get some relief from the hypoglycemia, and this was the only supplement that helped.

Some of your other symptoms sound like thyroid. Do you have any results that you could post on the thyroid board? They're so helpful over there. Sometimes what a doctor considers "normal" results can actually be abnormal for a person and make a person symptomatic.

With the IBS, something that I just thought I'd mention...I too had IBS in my twenties (I'm 32 now). For me, though, once I cut the sugar (not that I avoid it completely, but it's way down from where it once was!) and overeating, the IBS all but disappeared. For example, anytime I head to Macaroni Grill and uh, overindulge, in their bread and pasta, I can pretty much guarantee an IBS episode. :nono: I'm not saying this is what's causing your symptoms, but I just thought it might be worth mentioning.

Have you had your cortisol checked? Your hormones? I would think this would be something that would be top priority for your docs?

I live in Houston, so I could definitely recommend my doctor. She's not an endocrinologist, "just" a family doctor, but she is the first doctor who has actually listened to me and been willing to work [I]with[/I] me (instead of wanting to quickly write a prescription for Prozac!!!! Yes, I've been there too!!!! :mad: ).

{removed}

Well, I'm sure this post is all over the place! That's one thing the Cortef hasn't completely cured--brain fog!!! I think my thyroid meds need adjusting (have been on thyroid since the birth of my second son)!

Please keep posting and looking for answers. This is a great place to come for help.

Christy
Christy,

Thank you SO much for replying! I went to the gastro doc today and he ordered blood work and an ultrasound of my abdomen. I voiced several concerns over my adrenals and thyroid, but I don't think he took me too seriously. He did say that I MIGHT have a thyroid problem and he ordered a TSH. I asked about the T3 and T4 and he said it wasn't necessary because the TSH is HIGHLY sensitive to catch thyroid problems. He said that if I had a thyroid problem I would be gaining weight, not loosing weight. I'm pretty much convinced that none of the tests will show anything. They never do and they're the same ones...over...and over...and over...

My BP was really low, and wouldn't you know it...by the time I got to the appointment I was sweating, felt like my head was pounding and my BP was 121/79. It's NEVER over 90/60! It's probably anxiety because I get nervous going to the doctor.

D/FW is a 3 1/2 hour drive for me. I was hoping to find somone in central Texas, but I'm willing to travel if that's what it takes to get better. I too, think I have hormonal issues. I did sign up to take part in a study on Bioidentical Hormones in Tyler. It doesn't start till June, but they check EVERYTHING! Estrogen, progesterone, DHEA, Cortisol and they compound an individualized cream for you. I just wish it were sooner.

My girls used to get sick every time they ate pasta, bread, etc... They were diagnosed with gluten enteropathy. Now they hardly ever get a stomach ache, unless they get hidden gluten in something.

Thanks again for replying! It's nice to know someone else has been through what I'm going through and can offer advice. I may need to get a list of tests I need for thyroid and adrenals and just demand that they be done. My legs and back are hurting really bad and I'm achy all over. I call it a flare-up. It can last a week, or three months, and it only gets better with prednisone. I usually tough it out as long as I can to see if it will go away on its own, but it never does. I don't want to take prednisone if I need more tests either. They did a bunch of bloodwork for Lupus and RA a few years back after I had been on prednisone for two weeks. I don't think you are supposed to be on steroids for tests like that?

The brain fog is not fun! It's like watching your life happen on a movie screen and walking around with your head in the clouds. I have had entire weeks go by that I don't even recall what I did. Have you ever gotten in the car, and after you get where you're going, realize that you don't remember driving there? :eek:

I will post test results when I get them.

Thanks again!
Tina
Hi Tina,
I just finished reading your letter and I could really feel your pain and frustration.
I was diagnosed with Addison's Disease when I was 19 yrs. old. I'm now 38. It is possible to live a normal healthy long term life with Addison's.
As I was reading about the symptoms you described having, I've had similar symptoms as well. I've listed them below so you can compare them to yours.

[COLOR=Navy]These are some of my early signs before being diagnosed.[/COLOR]

~Rapid weight loss
~tired and sleepy all the time
~No energy
~Skin appears tan as if out in the sun
~Darker pigmentation in areas of the skin usually around the knuckles on the hands, feet, and elbows.
~Low blood pressure along with constant lightheadedness, dizzy and weak.
~Constant vomiting
~Trouble concentrating and difficulty understanding things
~balance or hand eye coordination way off
~salt & sugar cravings
~back, neck, and leg pain

I was first diagnosed with Hypothyroidism but Drs. still had no clue why I was still sick. Then, I had a Doctor who told my parents I was sick because I had mental problems!! AND..that I was either taking drugs or misusing the thyroid medication as a weight loss method!! Can you believe that! This Dr. put me in the hospital and for 3 weeks he kept me doped up on psychotic drugs. Don't ever let a Dr. tell you it's all in your mind ok?! This happens with lupus and chronic fatigue suffers as well.

Tell your Doctor to run a blood test and specifically check your potassium levels as well as your sodium levels. If the blood work show's high potassium in your system..there's a good chance you have Addison's Disease.

Usually thyroid disease (hypo mostly) and diabetes work hand to hand with Addison's disease. The disease is an antibody that's working it's way throughout your body attacking vital organs and shutting them down. Usually starts with the adrenal glands, then to the thyroid (causing the skin darkening and pigmentation), and so on. When it's diagnosed and treated properly, the cycle can be halted. However, there is no cure yet.

If you ever need to talk, please feel free to email me. I'd love to talk to you.

Take Care hun!
Shelly :angel: My email address: [ [b] please carefully review the posting rules - no emails [/b] ]

[b] [ 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. ] [/b]
Sadie,

Thank you for recommending that I not take the potassium supplements. My legs really hurt, but I don't want to create more problems than I already have.

I'm really sorry that your husband had to go through that. What is wrong with all these doctors? I mean, if it was just a few, I could understand, but so many?????? What the heck are they learning in medical school???? I go through this with every thing that has been wrong. They send me for tests (the same ones over and over) and then they say it's stress and depression. I always counter with, "Yeah, I AM depressed. Depressed because I always feel terrible, can't drag my butt out of bed half the time, and I have three kids counting on me."

I have an even better one! I told the gastro doc Tuesday that I have hypoglycemia. He nodded and asked me about my leg pain. When I left, the receptionist said I couldn't eat or drink after midnight for my 9:00 am ultrasound. I told her that I would try, but if I got hypoglycemic, it wasn't happening.

At 6am...I am shaking and starting to sweat, not to mention about to cry because I know I'm not going to make it. I cheat a little and have a small glass of OJ. I get to the radiologist's office at 8 and tell them I couldn't wait, that I had to have OJ. They decide to try anyway and she can't do it because my gallbladder is still having spasms. They call my gastro. The gastro tells them to tell me to come to their office, and I BETTER NOT EAT ON THE WAY! On the way there, I feel like a child that is about to be in trouble. I get there and he wants to know why I think I have hypoglycemia, that people just don't HAVE hypoglycemia. It is caused from another disorder, like an insulinoma (or something like that) or an ADRENAL problem! I can't just walk in and diagnose myself with hypoglycemia. (remember, I told him Tuesday I had hypoglycemia, and he changed the subject) He said I needed to have it documention showing that I am hypo.

Woooo...you talk about a hot chick! I was sweating, shaking, knees knocking, feeling like I was about to pass out, and I'd had enough. (I guess I was REAL nervous) I got snotty (tried hard, but it flew out) and informed him that my family doctor had my fasting blood sugar tested twice. Once it was 44, the 2nd time it was 42. HE is the one that told me I had hypoglycemia, HE is the one who said I needed to eat every two hours and keep OJ with me at all times. He is also the doctor that I am no longer seeing because HE can't seem to figure out what is wrong with me. HE would rather just keep throwing steroids and anti-depressants at me. He is the doctor that put me on 20mg. of prednisone for two weeks at a time...several times...for several YEARS without telling me I needed to taper off. He was the wonderful doctor who diagnosed me with IBS, told me I would need to learn to deal with it, gave me sulfa drugs, while I suffered for YEARS before I found out I had endometriosis. IBS is gone now.

Then he informs me that he doesn't think I have hypoglycemia, he just thinks I'm a nervous person. He says this with a smile on his face. Then he tells me all my blood work came back fine. TSH was .8 and NO he didn't do a T3 or T4. (Because TSH is THE best test for thyroid disorders)

He said that if I couldn't make it to this ultrasound, they would have to admit me to the hospital to give me IV insulin so they could get it done. And he said I could not even have so much as an ice chip on my tongue before the ultrasound. I almost asked him if I should spit so I didn't swallow any saliva, but I got control of my tongue before it slipped out. I told him that if I could make it 4 more hours, I would try to have the ultrasound.

Well, I made it and I took OJ and food in there with me. They even offered me more food as I was coming out because they knew I wasn't doing too good.

I'm sorry to go on and on. I just had to vent...and now my fingers are wore out! :D

I feel like I just took $600 and threw it in the trash can. I feel like just not even going anywhere else and forgetting all of this, but I know it's going to happen again. :( Will regular doctors, a family practice doctor or OB/Gyn do the ACTH stimulation test, or do I have to go to an endo?

There's only one endocrinologist in our town, and he's a Hindu guy who is against Armour, and will only prescribe Synthroid. My friend sees him and I don't like some of the things she tells me. He gets angry with her each time she goes because he wants her on Zocor. She doesn't have high cholesterol, but he thinks all "older people" need to be on it. He doesn't sound like the type of guy that I could just walk in and tell him to test me for Addison's. I may have to drive to a bigger city, like Dallas, Houston, or Austin.

How does addison's start out? Before diagnosis I mean. What happens? Does it come in spurts, like...flares that are brought on by illness? Does it come and go, without medication long before it's diagnosed? If I'm feeling like I have the worst flu I've ever had, (body ache wise, not the cough, fever part) and I suddenly feel 100% better on prednisone, is this normal? Does anyone (general population, not people with addison's) feel better after taking prednisone when they are sick? Does everyone get the lightheaded, feeling like they are about to pass out, sweaty, clamy, heart racing, and shakes when they need to eat?
I'm sorry about the long, blabby post. I have been crying all day and I'm not the most positive person right now. I'm sitting here staring at the anti-depressant bottle through puffy, red eyes, like it's filled with Godiva chocolates. As much as I hate medications, I'm about to give in to temptation.

Tina
Hi Tina,
I'm so sorry for what your going through. I don't understand why they're doing this to you. I agree with Sadie....that if it takes driving or flying to the nearest teaching hospital or endocrinologist, then do so. If indeed this is Addison's, it could mean your life. I don't understand why more Doctor's aren't educated with the disease.

The town I'm from has over 200,000 people living in it and yet there's only 1 endocrinologist. In fact, I've been the only patient of that endocrinologist with Addison's for 10 years! And, he's not all that educated about it either.

On that note: So I can compare my medications and dosages, can anyone tell me what their daily amounts or strengths of Cortef is? I'm on 20 mg in the morning and 10 mg at night. What other types of medications do you take for the Addison's? I used to take Florinef as well but I stopped taking it many years ago on my own free will. My present doctor has never mentioned it or prescribed it to me. Also, I don't have diabetes...do most Addison's patients have diabetes? I am also Hypothyroid....since Addison's and Hothryoidism come hand and hand...Doctor's call it Schmidt's Syndrome.

I appreciate any information you can give me. I have never spoken or known anyone who has Addison's ...so when I found this site, I was very excited.

Tina, I truly feel that you will find a compassionate Doctor who will help you and who will guide you to better health.

God Bless,
Shelly
Thank you Shelly!

I can't believe there aren't more endocrinologists around. You would think with it being such a specialized field and having so few doctors, that people would be jumping at the chance to study endocrinology. Just from what I've read in the past few weeks, it is certainly interesting!

There's so many tiny things producing such huge results in our bodies. So much for learning in school that you eat and it comes out the other end eh? God, in His infinite wisdom, made every little cell and function. It just amazes me. Maybe if I live long enough and get healthy I will go to medical school and study this field. Once, a long time ago, I had dreams of being a doctor. Then I had a baby and it was alllllllll down hill with this worn out body.

Has anyone ever heard of immunizations causing problems? I have been up, pretty much typing out my history for the next doctor so it's all down and documented. Then I remember that while I was pregnant with my first child, they told me I had no immunity to the german measles. As soon as he was born, they gave me the MMR vaccination. I always associate my decline in health with the birth of my first child. After looking up reactions to MMR, this is what I found:

"The following afflictions have been reported subsequent to the individual or combined MMR vaccine: neurologic disorders, seizure disorders, learning disabilities, encephalitis, subacute sclerosing panencephalitis (demyelination of the nerve sheaths), Guillain-Barr syndrome (paralysis), muscle incoordination, autism, deafness, optic neuritis (including partial or total blindness), fever, headache, joint pain, arthritis (acute and chronic), transverse myelitis, thrombocytopenia (blood clotting disorders and spontaneous bleeding), anaphylaxis (severe allergic reactions), inflammatory bowel disease, Crohn's disease, ulcerative colitis, meningitis, diabetes, immune system disorders, and death."

Hmmm...wonder if there's a connection there. I think I need to make a connection with my bed. :yawn:

God Bless!
Tina
Dear Tina, after reading your letter to the Alzheimer's Board I looked up your other postings.

I am appalled at your lack of medical insurance. What is this country coming to? Am I correct in understanding that you were kicked out of coverage because you were sick too much? That is unacceptable!

Have you spoken to a lawyer? I WOULD try for legal aid assisted lawyer's help if I were you. Medical insurance is THERE because people get sick, not only for healthy people with a cold once a year ... how could you lose coverage? I lived in Europe for 30 years where every tooth cavity was covered and every pill ..if you worked or your husband worked, and all kids under 18 were covered whether anyone worked or not. My ex husband is covered for his whole life although retired, by a special plan for seniors. He is alo an 'expensive' patient, having been on anti cancer drugs, having had operations, heart drugs, etc .. the very idea of kicking him out of the system because he is sick is incredible. Can NOT happen in most other civilized countries.

I advise you to get legal help to be reinstated in a health insurance plan... also investiagte all other possibilites. I recently heard of a pay as you go plan .. not traditional health insurance, you pay a doctor or group of doctors so and so much a month whether sick or well and are then covered by him and his colleagues. Of course I don't know if an endocrinologist is in the group. I believe it was in California.

I have friends from China. Outside of the appalling political system, there are a couple of good things in that country: your doctor's job is to keep you well. You pay a fee for that service. If you get sick, you don't pay until (s)he gets you well. A complete opposite of our way of thinking.

I wish you well. Please let me know what happens, what your diagnosis is. My sister lived with a painful ovarian cyst and it is shrinking now at age 67.

love,

Martha
TinaBeena,

I just want to let you know that I know exactly what you're going through as well. I've been through the SAME thing as you, and like Sadie-Mae, could've written your post. I've had doctors tell me the same thing (a gastro, in fact) that people, "Don't just have hypoglycemia" and that "it's all in my head." I honestly can't think of anything more in this world that angers me as much as being told that I'm a mental case and that there is nothing physically wrong with me when I have LOW BLOOD SUGARS, low body temperature, low blood pressure, and odd, orange-tan skin that I never had before. The only difference between you and I is that I'm only 20. People around my age group think I'm truly nuts. They are all as healthy as ever, going out to bars and clubs and partying, and just can't believe that someone as young as me is limited by physical illness. I can't even begin to tell you how many friends I've lost because I'M SICK. It's unbelievable. Luckily, I have many older friends, as I've always connected better with adults my entire life, anyway. My mom is working three jobs and has two children besides me who are 12 and 14. My dad is disabled and gets a sickening 1,000 bucks a month or something like that, and the government pays us his child support, which is also some ridiculously small amount of money. When I turned 18, I was cut from the State insurance I was getting, which my brother and sister still have. Just recently, in the past two months, I am insured, but it's only because my mom is paying $200 bucks a month for a policy. The State won't help me a bit because I'm in the category of something called a "spend down" or something like that. If I didn't live with my mother, it might be a different story, but the only insurance I would get would only cover hospital visits. I live in what is considered the richest county in the entire U.S. (Fairfield County in Connecticut) but I am certainly not in any way rich, or even well off, and you would think that in a civilized country like America, there would be HELP out there for people like us that are sick. It makes me nauseous, I swear. Anyway, since I've had insurance, I started seeing a naturopath, but the insurance I do have WON'T COVER IMPORTANT TESTS I NEED! My doctor just took a certain allergy test and a hair mineral analysis, but can't send them in until I pay him $300.00. I guess that isn't happening. I'm also supposed to get a $250.00 comprehensive stool analysis test. The naturopath is really helpful in the way that he actually BELIEVES that I'm not just a hypochondriac, but he is focusing more on my "IBS" and digestive disorders than my hormonal problems, which I think are more important. He says that he wants to look at hormone and adrenal levels after he evaluates my digestive system, but he really needs to do the opposite because the adrenal problems are what is keeping me from being way too sick to work and help my mom out with the cost of my insurance. Arrgh. It's so frustrating. I finally have insurance and now nothing is getting done. For my insurance to cover tests, I guess I'll just have to insist that he does the tests through Quest, and to focus on my hormonal issues. Well, I guess I needed to vent, also:) Sorry I didn't say anything that would really help you out. I just wanted to let you know that there is someone out there going through thes same thing:) Keep us posted on your progress.
~Katalina
Hi Katalina..and Tina too! Hope things are going better for you today Tina. I've thought about you all day.

Katalina, have any Doctors diagnosed you with Addison's or just hypoglycemia? In my opinion, you have all the signs of full blown Addison's Disease. Like I told Tina, do whatever possible to find a Doctor who will help you because if you don't get on the proper medications, you will eventually go into a crisis. A crisis could mean your life. Also, I said in my earlier post as well....don't let your doctor's make you think your messed up in the head. Addison's is a slow moving illness and many don't even know they've got it until several years later. I was one of those. I was at the top of my game in softball when I was a freshman in high school (15 yrs old), and I wasn't diagnosed until 3 years later. By the time the disease was in full bloom but undiagnosed, I was so sick that I had to drop out of college and give up the softball scholarship. I had all the classic signs but Doctors were uneducated. Finally, I went into a crisis and almost died before they finally came to a diagnosis. It's a scary thing I know.

Katalina, the orange-tan skin you mentioned having...I've got that too. That is a classic sign of Addison's. Do you have any thyroid problems at all?

I hope your feeling better soon and please keep in touch here on the boards.
And by the way...you have such a beautiful name.

We will all get through this one day at a time! :wave:

Shelly
Hi Katalina,
Thanks for responding back so soon. When you talk about having low blood sugar, do you get dizzy often from it?..especially if you stand up too quickly from a sitting or laying down position? Or do you get shaky when you haven't eaten? I don't know why but my dizzy spells seem to be getting stronger and lasting longer. The other day I almost passed out. I'm worried they may get to that point.
By the way, you are very correct about the tan-orange color on the skin. It is in the folds of the skin. I do have a golden color on my arms, no one would suspect it was nothing other than a sun tan. But if you look closely enough you would see the darker pigmentation on the knuckles of my hands, back of the knees, and on the feet. You definitely know what your talking about there.
As far as the nausea...I do get nauseous daily but I don't vomit very much. When I do vomit, it's because of getting sick from the flu or normal stuff like that. The disease does cause the body to be more sensitive to viruses because of the lack of immune system.

Keep me posted on how your feeling.
Shelly
Shelly,

Do people with adrenal insufficiency have long periods of feeling ok (and when I say ok...I still have fatigue, no sex drive, etc...) and then an illness or something causes them to go down hill really fast? (low blood pressure, low bloodsugar, pain in legs, etc...) I know when it's coming on because my first symptoms are usually horrible fatigue and my legs get to hurting REALLY bad. Then I get hypoglycemic and my blood pressure drops lower than my usual low.

I'm actually feeling better. My legs still hurt, but not as bad. My bp is back to it's normal 90/60, and I feel like the brain fog has lifted. This wasn't one of my longer episodes. I've had it go on for two months before. I think my gallbladder spasms, and my nervousness over the possibility I may have to have it out, caused this episode. Would adrenal fatigue only come during illness or stress?

Tina
[COLOR=Indigo]Do people with adrenal insufficiency have long periods of feeling ok (and when I say ok...[/COLOR]

Hey Tina,
I'm glad your feeling a little better. Yes I go through long periods of feeling great! Actually my husband can verify for this...since I'm not working right now due to poor health, I'll go through spurts of energy for several days up to a few weeks and suddenly my home is spotless. He'll come home from work, look around and say "did you have an energy burst today or something?". So yes, that happens...but not often enough for me to be able to go back to work.
About your other question, when you have a low immune system, which you do if you are suffering from adrenal insufficiency, you are probably twice as likely to catch viruses in the air or from other people. The steroids, or cortef, can help to build up the immune system, but if your under any kind of stress...both physically or mentally...and you are with your legs....you have an even more chance of picking up viruses. I've stayed at home for a week, never going outside once...and still caught the flu. It's going to happen. I'm sorry.

Keep me posted on how your doing ok? If you ever need help, please let me know.

Take Care hun, Shelly
Tina,
I also go through the same thing as you, having periods where I feel good (although still fatigued and everything.) I have "episodes" of days or weeks where I'll be REALLY sick. Also, Shelly, like you, I experience the bursts of energy (although not often enough to work as well) and it really confuses everyone else around me b/c during those times, I sure don't act very sick. *Sigh*
~Katalina
I am waiting on an email from a doctor at UT in Tyler to set up an appointment. I signed up for a three year study on bioidentical hormones in April. I decided not to do it after I started feeling so bad, but now I figure I don't have a choice because I can't afford to do this on my own.

I found out hey do all these tests: [B]Hormone Profile, TSH, Free T4, Free T3, Fasting Insulin, TPO, C Reactive Protein, Triglycerides, Glucose, Factor V, Fibrinogen, Antithrombin III, Factor VII, Factor VIIa[/B] (don't know what half of them are) for a $15 per visit office fee. A pharmacy compounds the hormones (if needed) and the cortisol, DHEA, etc... in a cream and the doctor checks the blood and saliva several times to make sure we're getting the right amount. The cost of the compounded cream is $35 each month. The initial tests cost them around $1600 to run. Over three years, they will do $13,722 worth of tests for free, but we pay for the office visits.

The doctor was in family practice for years and is now a research scientist at UT Tyler's Health & Science Center. She is angry that women get treated the way we do at doctor's offices and told we are crazy and to deal with it. She is against artificial HRT and tells everyone she sees that it will kill you. She is getting harassed by male doctors and pharmaceutical companies who do not want to see this study go forward. She's written books and has been published in the New England Journal of Medicine.

She is amazing! We watched a video about how our adrenals, pituatary, ovaries, etc....work together and what happens as we get older, or when stress or illness comes into play. When one is off, they are all overloaded and it's downhill from there! Our hair falls out, we can't sleep at night, we can't get up in the morning, we have no sex drive, (i have no life drive) we have low body temps and low blood pressure, etc...etc... and then it turns ugly because they actually shut down if we do not get the proper care. It was interesting to watch an animated model of our insides and see how it all ties together. It showed what happens when the cortisol levels are off, etc... in a way that was easy to understand. It's actually what prompted me to come looking here for answers.

She said that doctors for too long have ignored women and told us that we are just stressed and we are not actually having the problems we are having. "It must be in their heads. They just want attention. Write a prescription to make 'em happy and get 'em out the door."

I will keep you posted on the results of this study. There are doctors that are already doing this, but are labeled quacks by the medical industry. This study will prove them wrong, and we will FINALLY get the help we need! (if I'm eligible after testing)

Well, on another note, I had one great day and thought the worst was over. Today I was in bed all day feeling awful and now I'm running fever. The legs are aching again. If I lay in the middle of the road, will one of you come and run me over? :rolleyes:

Katalina, I also get those bursts of energy and it makes people wonder if I'm faking it all the other times. It's too bad they don't last long enough to clean the entire house!!!!!! Hang in there...we may figure this out eventually. I did figure out that licorice root will make your BP go up to a normal level. It's good for your guts because of the magnesium in it. (I have GERD) Sometimes it gives me a headache though. But, it's dangerous if you have heart problems. I'll put what it's used for below.


Categories: Glandular System

Licorice Root is good for:
Arthritis, Asthma, Bladder, Constipation, Depression, Fatigue, Fever, Intestinal Inflammation, Kidney Problems, Liver Problems, Sore Throat, Spasms, Ulcers
[QUOTE=ukiahvalleymom]Hi Tinabeana,
I have been posting on the Fibromyalgia, since having been dx'd with that a year ago. My symptoms changed recently to include:
Abdominal pain and tenderness (started about 4-5 weeks ago)
Back pain, bone and joint pain
Pigmentation of skin change (noticed a couple of months ago)
Nausea
Fatigue (different then FMS)
Weakness
Headaches
Dizziness when standing up
Eyes: milky, ill looking, w/dark bags and lines under
Color was almost jaundice a week ago now very pale
Low Blood Pressure has always been a struggle
Low Tempature: 96.3-96.7 very rarily is it in the 97.'s
No Appetite, (I am eating,tho)
Dehydrated
White tongue
Dry mouth and eyes
Extreme Weight Loss, have been having bouts of weight loss over the last 2 years, this last bout 20lbs in 2 months without trying. I weighed in 105lbs at the hospital a week ago. the week before 113lbs.

I have been on a low dose of Cortisol since December '04 and recently started Heparin treatment. An interesting note is that I have been dx'd with a compromised immune system, and ANS, and with cellular level viruses: HHV6, CMV, Mycoplasma Pneumonia, and Candida, two of which are noted under the addison's disease. I found all of this very interesting.

Tomorrow I will have a CT scan of my abdomen, I don't now if I should pray for positive results or negative results. I really feel that there is something other than the usual symptoms of FMS going on, and I have missed a week of work. This is unusual...for me.

My family and friends are scared for me, my husband is worried that I'm dying,(I look really bad!)

I have had all of those tests listed in the treatment by Dr Kenna Stephenson by my doctor; Dr Kent Holtorf. My FMS symptoms have been brought under control, through the findings from those tests, I know that if there is something going on with the Adrenal System, those tests, and the CT scan will reveal it to the doctor, sounds like you have found a great pathway for yourself, I wish you the best, and keep us posted on your journey.
uvm[/QUOTE]

Hi UVM,

I've seen you on the FM boards. I've been dxd with FM and CFS. If it makes you feel any better, I have also had all those symptoms on your list with the exception of low blood pressure. My bp used to be low when I was younger, but not anymore. My symptoms seem to change on a daily basis. As this illness progressed, new symptoms continued to arrive until I eventually wound up with a TON of them! Now, I never know on any given day which ones I'll be waking up to or develop as the day goes on. I have always had a lower than normal body temp as do my children, often around 96.

Well, just wanted to give you my two cents so that hopefully you won't worry too much and they won't find anything else wrong with you!

Good luck,

Robin





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