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3:55am June 8, 2014
womanaster asked: do you have CAH?

No.  I have severe secondary adrenal insufficiency.  They haven’t found a cause, but they figure it’s my pituitary gland.  It could be tertiary adrenal insufficiency (arising from the hypothalamus) but that’s rarer.  They did a head MRI but couldn’t find anything obviously wrong with my pituitary gland, which is a relief because that would have meant a bleed or a tumor.  And even though they assured me pituitary tumors are benign and not so bad, the idea of a “good brain tumor” still doesn’t sit right in my head.

Basically my pituitary gland doesn’t make ACTH, and therefore my adrenal glands don’t make cortisol.  And they’ve been not making coritsol for so long, that even when over-stimulated with ACTH they don’t really make enough cortisol, or at least not as much as you’d expect.  So I’m going to be on dexamethasone for the rest of my life, but I’m no longer dying of a mystery illness (which is how things looked before diagnosis) so I’m mostly thrilled to get a real diagnosis and a treatment.  I’d had severe symptoms for at least six years by the time they figured it out.  And when they did test me, they couldn’t measure either ACTH or cortisol in my body, so it wasn’t like the results were borderline or something.  They said that there were many times I should’ve been in the ICU and wasn’t because people didn’t understand how serious the problem was, and that I’m lucky to have pulled through.

So that’s the extent of my adrenal problems.  Life-threatening, but not CAH.  As far as we know, I may have had symptoms my entire adult life but it only got really bad six years ago (at which point I became bedridden and kept almost dying from things that shouldn’t kill people).

Notes:
  1. withasmoothroundstone posted this