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Addison's Disease Message Board

Addison's Disease Board Index

Alas, another echos what I said before - that amount of steroids was borderline criminal if only they could prosecute for it.

Normally for Cushing's they would test by doing a lot of 24 hour urinary free cortisol tests, 8am cortisols, 11pm saliva tests. Other tests that support the diagnosis are DHEA sulfate, renin, aldosterone, vitamin D (usually low).

There are dex suppression tests but they are not good for exclusion in my opinion as well, cripes, I know so many who failed yet still had the disease.

My thyroid used to jump up and down like crazy when my pituitary was unstable. Your daughter has not had enough tests to tell.
Can your regular doctor run Vitamin D? Weird that she will not run it... my phospates and all are normal (now) yet my D was in the basement and I am still working my way out of it. It is anecdotal yet strong among my friends that most (seems all) of us with cortisol issues have low vitamin D.

Why all the saliva in one day? Only one day? But if that is not THE day... it just does not seem like she is looking hard enough to catch random cases - or will dismiss it if it happens.

I take 1,000iu of D3 daily and just managed to get myself up to 30. They do now consider D to be more than just a vitamin and essential which is why the better endos I see test for it always and look for it in conjunction with other issues.

Make sure the renin is handled as carefully as the ACTH - both degrade in minutes at room temp so a good lab will draw them in chilled lavender tubes and spin them immediately, freezing them as soon as they come out so best chance for the most accurate reading. I bring ice to labs in a baggie to lay the lavender tubes on if they do not have it (ticks them off) and pester them to spin and freeze otherwise the test is crud. Enough error delayed my diagnosis as low readings were the lab's fault - not mine!

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