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Addison's Disease Message Board


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Hi,
New to these types of boards, but am frustrated beyond belief and looking for advice.

A year ago, I was a healthy, 25 year old female...recently married, working full-time...enjoying life. It all started with fatigue, occasional night sweats and heart palpitations. Didn't think anything of it. Things progressed to include tremors, high blood pressure, 12lb unexplained weight loss, headaches, insomnia and numerous gastrointestinal problems. The symptoms come in the form of "attacks", which are random and almost always begin just as I'm about to fall alseep...you know, that second before you fall asleep and your body sometimes jerks?

My GP told me she thought it was anxiety. I disagreed. I am a trained health care professional myself and had no difficulties dealing with stress in my life (nothing a good workout couldn't cure!). After another few attacks and at my whits end, I finally agreed to try Paxil. Well...after 3 days/nights with zero sleep, I ended up in the ER. The only finding...a potassium level of 3.5 which is considered 'borderline normal.' Finally, after a 3 week bout of severe gastrointestinal problems and a nagging pain in the left-side of my abdomen, my GP ordered a CT scan at my insistence. The results? A "1.5cm adrenal adenoma" on my left adrenal gland. The GP stated it was an incidental finding. Needless to say, I switched GPs.

The new GP was understanding and referred me to a surgeon (urologist who specializes in laproscopic surgery). The surgeon ordered tests, which came back normal. At the time the tests were taken, I had been off work for a month and literally spent all my time resting to try and avoid the attacks (it had been working). I had not had an attack for two months at that time. The surgeon then consulted with an endocrinologist, who has ordered another 24hr urine collection test...and that's where things stand now.

The surgeon told me I need to try and provoke an attack so that it can show up in the lab tests...otherwise they won't do anything about it. I realize most of you on this board are dealing with Addison's, but has anyone else experienced their symptoms in the form of attacks? Are there any specific tests I should be requesting? I am extremely frustrated and dying to have my life back.

Any suggestions and words of wisdom appreciated greatly.
[QUOTE=heb12]Hi,
New to these types of boards, but am frustrated beyond belief and looking for advice.

A year ago, I was a healthy, 25 year old female...recently married, working full-time...enjoying life. It all started with fatigue, occasional night sweats and heart palpitations. Didn't think anything of it. Things progressed to include tremors, high blood pressure, 12lb unexplained weight loss, headaches, insomnia and numerous gastrointestinal problems. The symptoms come in the form of "attacks", which are random and almost always begin just as I'm about to fall alseep...you know, that second before you fall asleep and your body sometimes jerks?

My GP told me she thought it was anxiety. I disagreed. I am a trained health care professional myself and had no difficulties dealing with stress in my life (nothing a good workout couldn't cure!). After another few attacks and at my whits end, I finally agreed to try Paxil. Well...after 3 days/nights with zero sleep, I ended up in the ER. The only finding...a potassium level of 3.5 which is considered 'borderline normal.' Finally, after a 3 week bout of severe gastrointestinal problems and a nagging pain in the left-side of my abdomen, my GP ordered a CT scan at my insistence. The results? A "1.5cm adrenal adenoma" on my left adrenal gland. The GP stated it was an incidental finding. Needless to say, I switched GPs.

The new GP was understanding and referred me to a surgeon (urologist who specializes in laproscopic surgery). The surgeon ordered tests, which came back normal. At the time the tests were taken, I had been off work for a month and literally spent all my time resting to try and avoid the attacks (it had been working). I had not had an attack for two months at that time. The surgeon then consulted with an endocrinologist, who has ordered another 24hr urine collection test...and that's where things stand now.

The surgeon told me I need to try and provoke an attack so that it can show up in the lab tests...otherwise they won't do anything about it. I realize most of you on this board are dealing with Addison's, but has anyone else experienced their symptoms in the form of attacks? Are there any specific tests I should be requesting? I am extremely frustrated and dying to have my life back.

Any suggestions and words of wisdom appreciated greatly.[/QUOTE]

Hi. Have you been checked for a pheochromocytoma? This would be a catacholomines test. Here is a link for better understanding. Your problems sound like they could be related to that. Let us know what you find out.
Thanks for the above messages. It's nice having this forum to discuss what you're going through with other people experiencing similar circumstances.

I had heard the word 'pheochromocytoma' thrown around and I'd imagine that's what they're testing for with the 24hr urine collection (catacholamines). The endocrinologist said they need to determine if the adrenal adenoma is 'active' or not. My concern is that the test is going to come back normal (like it did before) if I don't have one of my "attacks" in that time frame and then I'll have to start all over again. I have an idea of what activities are likely to induce an attack, but the thought of having to purposely provoke one is frightening. It would be nice if doctors actually took the time to listen to the whole story...a ten minute appointment does not begin to cover the symptoms...or give you any answers.

All I know is that I know my own body and have to trust my instincts. A year ago, I was a happy healthy person and now I'm unable to work, exercise or get upset without experiencing attacks. It seems to me, after reading some of the postings on here, that adrenal gland dysfunctions are not well understood or readily identified by the majority of physicians out there.

I feel the same way as you Malcolm...and I thought they had finally figured it out when they found the adenoma. Apparently not...

Thanks again for the replies!
I had a cat scan for my gallbladder, and the cat scan show that I have a mild prominence of the lateral limb of the right adrenal gland which may be a normal variation or represent a small adenoma, the dr sent me to a kidney dr.
and the dr. that I was going to see was call to the hospital and could not see me, so I saw a pa, and she get me to take the 24 hr. test.
could anyone tell me anything about this, the cat scan show a 2cm cyst on my kidney any help .....
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