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Addison's Disease Message Board


Addison's Disease Board Index


Hiya!

I'm glad to hear you are revisiting your doctors for more work-up. Cyclical Cushing's is exactly what you describe...going from one extreme to another. With this type of Cushing's there is a benign tumor (adenoma) that secretes either excess ACTH (pituitary stimulus for cortisol release) or excess cortisol (directly from the adrenal gland) BUT only episodically. During the times you make extra cortisol, you have symptoms of Cushing's. When it suddenly shuts off, you have symptoms (and test positively for) Addison's. The cycles can be in days, weeks, months or even years, for some people. It is believed (most widely) to be an early form of Cushing's--it's just that many don't get a diagnosis until so late in the game that they are already full-blown (without episodes anymore). It is well documented is the newer endocrine textbooks and research papers. It is harder to keep the doctors updated, though!! Some good materials can be found by searching PubMed with the search terms "cyclical cushing's" or "episodic cushing's"

The challenge of this particular form of Cushing's is that catching the hormonal changes is unpredictable. Just because you have symptoms on any given day of Cushing's doesn't mean that blood or urine testing will catch the change...it can lag behind or ahead of testing. Since you can't realistically do 24 hour urine collections everyday-it can be pretty frustrating. That's why you really need a doctor who has a strong index of suspicion so they will be aggressive in having you do multiple tests.

What is interesting is that if you read some of the Cushing's Boards, many of the people (but of course not all of them)with a diagnosis and successful surgical treatment of their cyclical Cushing's have a history of previous steroid use-either oral or even inhalers for asthma. Most report that they were symptomatic BEFORE any contact with steroids but things were really exacerbated after steroid use. It makes me wonder if the process of coming off of steroids really stimulates ACTH release as it should to turn the adrenal back on after suppression, but then it turns on an already present tumor that then has trouble turning off again. Pathology of the tumors often shows a true adenoma, while others show hyperplasia (overactivity) of ACTH secreting tumors.

I know about this because my husband has been suffering this nightmare for well over two years. What I have learned in the last few years is that endocrinology isn't as straightforward or cut and dry as we would like. There are many gradations of disease that just aren't recognized yet and for which there is no easy answer.

Another thing I have wondered about is this: I don't see why, if Hashimoto's thyroiditis can result in transient overactivity of the thyroid as well as underactivity, that the adrenal glands couldn't periodically experience a similar pattern of behavior as they struggle to maintain a balance.

I hope that your doctors are motivated to help you find answers. Being stuck in the middle of a miserable biologic experiment with no end is really horrible. Good Luck,
Sadie :)





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