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Addison's Disease Message Board


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Hello,

I'm a 29 year old female, and was diagnosed with Chronic Fatigue Syndrome when I was 15. Back then, I was still able to function normally, I just got tired really easy and had episodes of 'crashes' when I was stressed or overexerted myself. However, I managed to get through high school and lead a fairly normal life until 2000. In 2000, I had a year full of major stress. I could see myself getting progressively worse during this time, and by the end of the year, I literally thought I was going to die.

I was exhausted to the point where I would sleep 18-20 hours a day and still not feel refreshed. I had headaches, nausea, and diarrhea several times daily. I was extremely weak, and couldn't even lift a laundry basket full of clothes. When I stood up, I was constantly dizzy--my blood pressure was always dropping. I noticed after eating each day, my hands and feet would get numb and tingly--this on top of the dizziness. I also began having cognitive problems including memory problems. I felt 'foggy' on a good day. --My cognitive problems got quite severe. (I'm a Mensa member, and at the time, my neuropsychology test showed a 4th grade reading level. I couldn't spell simple words, I couldn't read--I couldn't process what a person was saying to me.) I went to many doctors during that time, and was checked for just about everything--except endocrine disorders. They pat me on the head and sent me home.

Since then, I've been about 80-90% bedridden. I seem to improve for short periods, but whenever I get too stressed, I decline. Actually, my friend pointed out that when I get stressed, I get sick. --I end up with infections that take forever to heal. We've noticed that my well being seems to coincide with the amount of physical or emotional stress I'm under.

Six months ago, I started leaking breast milk. I was sent to a general surgeon to check for breast problems, and he found no problems. (My prolactin levels were also checked, and were normal.) A few weeks later, I started having severe headaches in the center of my forehead. In a matter of a few days, I started having all kinds of strange things going on. The dizziness came back, as did the nausea--but much worse than before. I began having trouble focusing on things that were close to me, and had bouts of blurred vision. (I hit my house in December while backing out of the garage, and had no idea how it happened.) The headaches were getting worse and worse until they became constant--I would wake up with them and go to bed with them.

Because of the lactation, I found my way to information on pituitary tumors, and decided I needed to have that checked out. I saw an endocrinologist who did a of visual exam--she said I had decreased temporal vision, and sent me to an opthamologist. (She ordered an AM cortisol, but refused to do further tests until she saw the results of the MRI. Isn't this backwards?) The opthamologist said I have a loss of peripheal vision, and began asking me if I had various symptoms. He said I have the classic symptoms of a pituitary tumor, and that I need an MRI immediately. He said he was going to personally call my endocrinologist to ensure this gets done ASAP. --That was March 31st. I finally had my MRI last night.

I really believe I have adrenal insufficiency. Last month, I had some sort of 'episode' that I believe may have been an adrenal crisis--or something similar. (I'm hoping someone here can tell me whether it could've been.) On a saturday evening and through sunday, I noticed that I was dizzy a little more often than I had been. Every time I stood up, it felt like my blood pressure dropped. My husband had to help me walk to the bathroom, etc. I also noticed I felt like I had a fever (I usually can't get warm--I'm wearing layers of clothes when it's 65 degrees), my vision was blurred, I was more nauseous than usual, etc. I just felt 'not right'.
Monday morning at 7am, I was awoken by a severe pain in my stomach--this was not a cramp or normal 'upset stomach' feeling. I got out of bed and immediately got dizzy, and could tell my blood pressure was pretty low. I tried to call someone, and almost passed out on the phone. (ears were buzzing and vision was going black.) I layed down on the floor for a few minutes, then felt the nausea getting much worse. I walked to the bathroom, and when I got there, the diarrhea started. I spent the next five hours with the diarrhea and vomiting, and passing out a few times in between. Not only could I not stand up without feeling like I was going to pass out, but I couldn't even sit up long enough to go to the bathroom. --My husband had also come home from work and called my endo's office. Five hours later, a nurse finally called back, and told him to get me to their ER--which is an hour away. So, I drank about a few liters of water because I thought it may help me feel a little better.
By the time I got there I was feeling much better (although not great), and was able to walk in on my own. The dizziness, etc. was not so bad. --My BP was 80/50. So, I'm wondering how low it was when I was at home and couldn't even sit up?? They gave me fluids and sent me home.

--The same thing happened two weeks later, and again, the nurse told me to come in because I needed to be checked for adrenal insufficiency. I got to the ER, where she told me to go, and they acted like I was crazy. The nurse told me she was sending an Endo to see me in the ER, and he never showed. (This also happened the first time) The ER doc said that the vomiting and diarrhea could cause the dehydration and also the fainting. (No kidding!) I kept pointing out that the drop in blood pressure/dizziness happened before the vomiting, etc. --but nobody seemed to want to listen. (Endos don't either) So, I was sent home again.

A few days later, I returned to the Endo clinic and saw a different Endo--one who specializes in pituitary problems. He was very rude to me, and was quite intimidating. He asked what's been going on, and I thought he was talking about the ER visit, so I recounted the symptoms that sent me to the ER. --He responded by telling me I don't have the symptoms of a pituitary tumor, and he can 'predict' that the MRI will show nothing. I told him I was actually concerned that what happened the day of the ER visit was some sort of an adrenal problem--and I realized those are not tumor symptoms. I said I brought a list of symptoms I've been having that the opthamologist thought were pituitary symptoms. --He never looked at the list. He was adamant I didn't have a tumor, and also said the symptoms the day of the ER visit had nothing to do with an adrenal problem. He specifically pointed out that a person doesn't get diarrhea from any kind of adrenal problem. (Am I completely confused?? It's my understanding that it does happen with an adrenal crisis)

--Today I saw a third Endocrinologist at a second hospital. This Endo specializes in pituitary and adrenal disorders. I was sure I was going to get somewhere this time. --This time, instead of showing him my list of symptoms, I read them to him. I couldn't even get half of them out of my mouth--he was cutting me off and telling me it's not an adrenal problem. He, too, says I don't have an adrenal problem and most likely no tumor. Yet, he noticed drooping eyelids?

I've asked all three Endos for a ACTH Stimulation test, and they're all refusing to do it. I was given an AM blood cortisol (non-stimulated, non fasting) by the first doctor, and my result was 20. All three have said my results from that test rules out any adrenal problem. Is this correct in your experience? It's my understanding that an AM cortisol may not mean anything. --I read that people can have normal morning cortisol and still have adrenal insufficiency. Is this correct?

At this point, I'm hoping one of you can tell me whether these are symptoms of an adrenal problem--because my doctors aren't sitting still long enough for me to get these out of my mouth.
Severe fatigue -worse after exertion or stress
I get sick easily (infections), especially after stress, and take a long time to heal
Heat intolerance (mid 80's causes the same symptoms I went to the ER with)
Cold Intolerance - I can't get warm
Dizzyness, blood pressure drops out of the blue
Nausea/diarreah several times daily
Salt/sugar cravings - I alternate, and never used to eat sweets. --Also been eating jars of olives
Body temperature fluctuates - 97.1 - 102. I've been having fevers at night (no infection), and on some nights my temp is low
Blurred vision - also can't seem to focus on things up close suddenly (20/15 vision)
Loss of peripheal vision - visual field test confirmed
Severe headaches that don't go away - I'm taking Benadryl to knock me out at night
Confusion, memory problems, cognitive problems
Pain in my knees, right hip and bone in right foot. --I also went from having perfectly straight, healthy teeth to having my teeth literally crumbling (on things like burritos!) and falling out at 25. --This happened in seven months time, and dentists have no answer. I now need full upper and lower dentures. I obsessively took care of my teeth.
Loss of sex drive and vaginal dryness
Menses still happen but are irregular in duration and date
Lactation - not pregnant, and never nursed
My naturally curly hair (looked close to a poodle) is now almost straight, and hair falls out
I have what I thought were 'liver' or 'age' spots on my face -- at 29? They're a light brown, and about the size of a dime. I have very fair skin, so I don't know what this is.
(cont.)
If you've actually read all of this so far, I apologize for the long length. I've spent the last three doctor's visits in tears because I can't seem to get anywhere, and I don't know what to do. I'm getting worse and worse, and I have a two year old son that I'm not even well enough to take care of. I've been sick for a long time, and have even dealt with the fact that I may never get my life back, but I'm getting worse. The doctors have been acting like I'm a hypochondriac, yet I'm used to being sick, so I don't go to the doctor until I'm (as my husband says) 'half dead'. I'm scared and don't know what to do. If some of you could please give me your opinions, advice--or anything, I would greatly appreciate it.

Thanks for listening,
Holly
Holly ~ While I cannot tell you exactly what is going on I believe that you should keep on seeing a doctor until you find one who is willing to work you up until they get to the bottom of what exactly is going on. You are your own advocate and you know that you are not a hypochondric and something is definitely going on that is interfering with your quality of life. You are so young & I am appalled at how the medical professionals have been treating you up to this point in time. I once had something going on that the doctors made me out to feel as if I was out of my mind and it wasn't until I aggressively marched into my private physicians office and told him that either he was going to get down to the bottom of it or that I would find somebody else who would. He took me seriously and worked me up until we found out what was wrong. Same thing hapened with my daughter's pediatrician. She was 5 days old & even before we went home from the hospital I knew something wasn't right. After 5 days in his office on a daily basis he finally hospitalized her, once again with my insistence, and ran all kinds of tests and sure enough there was a problem which if left untreated would have led to permanent damage. You need to insist that your doctor do the same for you....and let him know that you are not going to stop until he has a clear diagnosis for you. Nobody should have to live in the state of not knowing what it is that is going on and what can be done to make it better. Your body is crying out for help, it's time to listen and seek it out. Please keep us posted as to how things go for you. And good luck ~ Ivorygirl :wave:
I'm so sorry you are having such a horrible illness and experience with the doctors. I am not an adrenal expert. I have suspected adrenal fatigue might relate to my problems, but my symptoms are not nearly as severe as yours. The only advice I can give is to be persistant, and to bring your husband with you on your next visit, perhaps with the first endo you saw, that never had a chance to follow up with you. I assume that is the one your opthamologist corresponded with, so you might get somewhere. In my experience, bringing your husband with you gets you better care and results. Too many doctors are quick to dismiss women's problems as all in their heads. Having a man there to say "look buddy, she is really sick" gets their attention, and they will run tests they normally would not. It has happened to me both in the ER and in the regular doctor's office.

Also, keep calling about the MRI and get your own copy of it (report and the film) when it comes in. Hopefully, it shows a smoking gun for you, and maybe you will finally get the help you need.

Take care
Sneezy
[QUOTE=infiniteazure]If you've actually read all of this so far, I apologize for the long length. I've spent the last three doctor's visits in tears because I can't seem to get anywhere, and I don't know what to do. I'm getting worse and worse, and I have a two year old son that I'm not even well enough to take care of. I've been sick for a long time, and have even dealt with the fact that I may never get my life back, but I'm getting worse. The doctors have been acting like I'm a hypochondriac, yet I'm used to being sick, so I don't go to the doctor until I'm (as my husband says) 'half dead'. I'm scared and don't know what to do. If some of you could please give me your opinions, advice--or anything, I would greatly appreciate it.

Thanks for listening,
Holly[/QUOTE]

Your experience sounds like a complete nightmare! I sure hope you get some good help very soon.

Have you tried going to an alternative doctor -- a naturopath or someone who specializes in "alternative" medicine? I went to a local pharmacy that offers extended services to discuss what I thought was allergy problems with a naturopath there. After listening to my symptoms, she suggested adrenal fatigue. That's the first I had heard of that, so I made an appointment with an MD who specializes in alternative medicine and he had me take a saliva test (which entailed 4 collections during one day). My results indicated low cortisol and dhea.

Had I gone to my regular (traditional) MD, he never would have conducted this test. I have a girlfriend who is a doctor and when I told her about the saliva test, she wasn't even familiar with it and argued with me about whether I really had adrenal fatigue or not... said that it's very rare and she only sees 1-2 cases like this each year.

You need to see someone reputable, which may be difficult, as the alternative medicine field has a lot of weirdo's. Find someone with a lot of credentials and who went to a reputable school. You may have to go to more than one person... it's difficult to find good people, as you've discovered in your own case.

There's a company called "Great Smokies Diagnostic Lab" and they may be able to provide referral to doctors who use their tests. Or you might check out "ZRT Laboratory". Given what's been happening to you, it seems like you may need to take matters into your own hands and get these tests done on your own if you can. My problems are not as severe as your's, but I have come to the conclusion that I have to be my own doctor and get as educated and empowered as I can, so I am consulting a number of different professionals from various backgrounds to try and understand what to do about my situation. I am also paying for my treatment out of my own pocket, as my insurance does not cover this kind of thing... it's unfortunate, but my health is priceless, so I am doing what I have to do.

Good luck.

--CarrieLynn
[QUOTE=Ivorygirl]I once had something going on that the doctors made me out to feel as if I was out of my mind and it wasn't until I aggressively marched into my private physicians office and told him that either he was going to get down to the bottom of it or that I would find somebody else who would. He took me seriously and worked me up until we found out what was wrong. Same thing hapened with my daughter's pediatrician. She was 5 days old & even before we went home from the hospital I knew something wasn't right. After 5 days in his office on a daily basis he finally hospitalized her, once again with my insistence, and ran all kinds of tests and sure enough there was a problem which if left untreated would have led to permanent damage. You need to insist that your doctor do the same for you....and let him know that you are not going to stop until he has a clear diagnosis for you. [/QUOTE]

Ivorygirl,

Thanks very much for your encouragement and advice. I think I'm almost beginning to believe I'm crazy, as the doctors have implied. I'm usually rather agressive with doctors when I believe I'm right, but I'm literally not feeling well enough to fight right now. I took my best friend to my appointment with the second doctor because I was hoping she would do some fighting for me, to no avail. I asked the doctor whether a ACTH Stimulation test would be a better choice than AM Cortisol (done by doc #1), and he said the AM test was sufficient. I asked whether he could just do the stimulation test to make sure, and was told there were no symptoms to support it--and he would look like a fool if he ordered it. When I pressed the issue, he stopped the conversation, and said if I'm not happy with the care I'm receiving there, I can go elsewhere. For some reason, I keep finding doctors like this--and this doctor, along with the first, were at U of Mich. (I went there because I thought they were the best doctors in my area--silly me.)

Hopefully, I'll get some kind of renewed strength soon, and try again more aggressively (as you said) with yet another doctor. I'm just feeling like I'm out of gas, and have nothing left to fight with. However, I'm seeing that just having some support and encouragement helps. Thanks so much for taking the time to respond.

Holly
[QUOTE=sneezydiva]The only advice I can give is to be persistant, and to bring your husband with you on your next visit, perhaps with the first endo you saw, that never had a chance to follow up with you. I assume that is the one your opthamologist corresponded with, so you might get somewhere. In my experience, bringing your husband with you gets you better care and results. Too many doctors are quick to dismiss women's problems as all in their heads. Having a man there to say "look buddy, she is really sick" gets their attention, and they will run tests they normally would not. It has happened to me both in the ER and in the regular doctor's office.[/QUOTE]

Thanks so much for your reply, and I'm sorry you're having problems too. :( My husband was with me at both ER visits, and it didn't seem to phase the ER docs. In fact, upon finding out that they were sending me home the second time, he began screaming at the poor nurse, but there wasn't anything she could do. I will try taking him along to whichever doctor I end up at next. --For some reason, the hospital will not let me see the first endo now that I've seen the second at the same hospital. They've said it's their policy, and they do not patients switch doctors. (They let me switch originally because I waited over a month for blood test results, and couldn't get in touch with the doctor.) I realize this seems very odd, at least, it does to me.

Thank you, also, for the advice on the MRI results. I will be going to get the films and reports as soon as they're available.

--Holly
[QUOTE=carrielynn]You need to see someone reputable, which may be difficult, as the alternative medicine field has a lot of weirdo's. Find someone with a lot of credentials and who went to a reputable school. You may have to go to more than one person... it's difficult to find good people, as you've discovered in your own case.

There's a company called "Great Smokies Diagnostic Lab" and they may be able to provide referral to doctors who use their tests. Or you might check out "ZRT Laboratory". Given what's been happening to you, it seems like you may need to take matters into your own hands and get these tests done on your own if you can. My problems are not as severe as your's, but I have come to the conclusion that I have to be my own doctor and get as educated and empowered as I can, so I am consulting a number of different professionals from various backgrounds to try and understand what to do about my situation. [/QUOTE]

Carrie,

Thanks so much for sharing what you've experienced with me. I have not tried anyone other than MDs. Unfortunately, if my insurance won't cover them, I won't be able to go because we're really having enough trouble just trying to buy food at the moment. However, I will definitely check into it and find out what options are available to me with my insurance coverage. At this point, I'm not too thrilled with MDs in general, anyway.

I agree, and have always felt it's important to be as educated and empowered as possible--especially when you have an illness nobody seems to be able to figure out. I've spent years researching CFS on the internet because I was told that's what I had, and have come to the conclusion it's just a term they throw at you when they can't figure out what's going on. If I'm ever able to consult alternative professionals, I will try that also. --I have heard of the Great Smokies Lab somewhere, and will look into it a bit more.

Again, thank you for your help and encouragement. I wish you luck with your own health, and hope things improve for you.

Holly
Holly, reading your posts made me sick. Know why? Because I could've written it years ago. I had a very difficult time getting a diagnosis, was told I need a psychiatrist, nothing was wrong, etc. As it turned out, something was wrong, just like I knew it was, just like you know it is. After a very serious adrenal crisis, I was finally diagnosed with Addison's disease, thyroid failure and ovarian failure. I had all the symptoms you listed except the lactation, which does imply pituitary involvement. Please do not give up. I remember so well the feeling of not having enough strenght any more to fight and finally giving in to the thought that I was just going to get worse and worse and die. I did get worse and worse and I did die for several seconds during that first crisis so I wasn't very far off, was I?

A lot of your symptoms sound thyroid related; the heat and cold intolerance especially. Maybe you can at least get someone to run some thyroid tests? If you can get the thyroid treated, you might find some renewed strength from what little improvement that brings, to continue on for further answers.

Please do not give up. I was diagnosed over 24 years ago and I do well with my challenges although it is sometimes not easy. But the first step is getting that diagnosis. Good luck.
Hi Holly!

I just read your posts. I am appalled at the way you have been treated. And even more so, appalled at the utter arrogance and pathetic handling of your case by these doctors. I just don't understand why endocrinologists(supposedly trained in these matters) have such a poor understanding of the diseases in their area of "expertise" It is incredibly worrisome to me.

Endocrinologists are among the most arrogant and irritating of the specialists and I am not sure why this is. As a part of their training, one would have assumed that they were taught to look for waxing and waning symptoms of broad range and odd presentations. And that baseline hormone testing is of little value for any endocrine disease-especially pituitary forms.

My heart goes out to you for what you have suffered all of these years and I am very angry on your behalf!! I know the feeling of being a fighter but then not having the energy to fight when you have a doctor appt. go bad. The idea of taking your hubby is excellent. I have always been assertive and well-spoken in situations like doctor appts but lately I just crumble unless my husband is with me. I find it frustrating to need him there and yet the doctors DO seem to respond more with him there.

It seems highly unlikely that you have chronic fatigue syndrome--your symptoms are not consistent. I agree with you that it sure sounds like you have some sort of pituitary issue. Lacatation can be caused by more than just elevated prolactin. Hypothyroidism is likely the second most common cause of it. But you clearly have issues that go far beyond hypothyroidism.

I am so happy that they did finally do the MRI-I am anxious to hear your results. I do not wish for you anything bad to be found and yet I almost hope the tumor is there staring at them so they are forced to listen a bit more!!

Please know that even if no tumor is seen-you still likely have pit issues and need appropriate biochemical tests for it. Has anyone done a full pit work up on you....including LH/FSH/estrogen/testosterone, IGF-1 (for growth hormone), ACTH, cortisol, TSH and free T4 and T3? My guess is that some major abnormalities will come to light with those tests.

From there, though, almost every pit patient needs stimulation testing. This would include growth hormone stimulation, cortisol stimulation for Addison's, and possibly TRH stimulation for central hypothyroidism (with this your TSH is low at the same time your T4 is low). These are complicated tests and ones that very few endos perform or know the indications for.

You desperately need to find an endo at a pituitary center. I know you mentioned having financial concerns but if there is any way for you to travel, I hope you might consider it. There are pituitary centers on your side of the US that will likely be far more responsive to your concerns. Do a search for Cushing's help and pituitary, there is a site that has many recommendations of doctors that CAN help you.

Pituitary issues are likely one of the most challenging issues to try and get help for and I am so sorry for your experiences. But-YES!! you are on the right track and you will just have to keep pushing hard until someone listens.

If you can't travel right now, then I would start seeking out the help of malleable doctors that are willing to run the tests you ask for. Go in with a smile on your face and insist that you wont feel comfortable until the tests above are run. Take in print outs from reputable sites of symptoms of pituitary diseases (oregon health science university has a whole write up of how to get your doctor to do the right tests and what to ask for). You may get one test at a time from each doc-but you can usually get in quickly over seeing a specialist. Be sure to always get copies of all of your labs and MRI results to take on to the next doc.

If it does end up that you have a large tumor up in your pituitary gland (a macroadenoma, 1.0cm or close to it) please consider seeking the help of a pituitary center for surgery. Surgery done right can give you your life back. Surgery done wrong the first time makes your challenges even more serious. There ARE surgeons who can get tangled and difficult tumors out even when others say it can't be done...but you need the right doc doing the surgery. Research and travel for the right person---I cannot stress how much this matters.

You are very sick and I am so sorry that at this juncture when you need doctors to help you-you are having to look at them as the enemy. They aren't all like that and you will find the one who will help. It may come from a least expected resouce (like the ophtho doc) but take whatever you can from each doc and don't be afraid to move on quickly.

Let me know if I can offer any help. Feel free to post any blood results or MRI results and maybe we can help you decipher them.

Hang tough...you will get there and you have already made huge strides in getting on the right track,

Sadie
[QUOTE=tcnj_mom]Holly, reading your posts made me sick. Know why? Because I could've written it years ago. I had a very difficult time getting a diagnosis, was told I need a psychiatrist, nothing was wrong, etc. As it turned out, something was wrong, just like I knew it was, just like you know it is. After a very serious adrenal crisis, I was finally diagnosed with Addison's disease, thyroid failure and ovarian failure. I had all the symptoms you listed except the lactation, which does imply pituitary involvement. Please do not give up. I remember so well the feeling of not having enough strenght any more to fight and finally giving in to the thought that I was just going to get worse and worse and die. I did get worse and worse and I did die for several seconds during that first crisis so I wasn't very far off, was I? [/QUOTE]

Thank you for reassuring me that I'm not crazy. I see, now, that I really need to find the energy to keep trying. I find it disgusting what you've been through, and many others, too. I'm really beginning to believe that the doctors would rather have us just die than be wrong. I just don't understand it. I'm glad to hear that you're doing better now, and hope to join you soon.

I have had my thyroid checked, but it was years ago. I will try again at the next doctor I see.

Thanks so much for your support,

Holly





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