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Was Anyone Here Also Tested For Addison's?


JuneFlower
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I see on many websites that POTS can be confused with Addison's Disease. It is pretty rare but I took my daughter to an Endocrinologist. That dr said her symptoms were suspicious and she should be tested for Addison's. I am wondering if this testing was included in anyone's work up for POTS? I had to ask for it.

June

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I also had the stimulation test, and it was negative. This was early on in my POTS, and all my cortisol numbers came back in the normal or low-normal range. Now, about 7 years later, my a.m. cortisol numbers continually come back in the upper high-normal range. I have no clue what is going on, except maybe having POTS puts my body in a chronic "stressed" condition, making extra cortisol secretion a "normal" thing for me.

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I was tested by my endocrynologist, because I have a problem with frequent urination and dehydration during flare ups. Basically, I can't get out of a flare without IV saline. My cortisol was on the lower side of normal. I just came back from Mayo, where they also wanted me to see their endocrynologist to clear up that I don't have Addison's. I don't. I've been also to Mayo autonomic clinic and got an explanation to those symptoms there.

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I've always wanted to get checked but can't seem to convince anyone to run the tests. It's like they don't think about a secondary cause, they just assume that my dysautonomia is the main cause of itself!

It could be, but I might swing the idea of the hormone issue by the doc anyway

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I was negative. But I did read a ton of info about Adrenal Fatigue in which those symptoms overlapped a little with mine. I did use low dose hydrocortisone thru my worst flare and it seemed to help. I still dose it on occasions during flares. I'm about 95% better but the heart of my flare lasted a good year. There's significant reason to be cautious when learning about Adrenal Fatigue and use of cortisone -- also most Endo's completely hate the idea and believe it's a made up internet disease. But most docs's believe POTS is a made up disease for people full of anxiety so it's like picking your battles. Maybe do a little reading and see if some of the info fits you or helps you.

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Thanks for all the replies. I really appreciate it. My daughter actually does have a lot of the same symptoms of addison's. Not adrenal fatigue per say. The endocrinologist wants to run the tests but it takes a few weeks to set up. Ugh. It's a long shot, I know. But I'd hate to find out down the road that we missed it. The dr said people can have it for years without knowing.

June

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