1:58pm August 18, 2014

Do you guys know any bloggers that have Addison’s Disease or adrenal insufficiency?

(The original post was just the question in the title. I’m answering it.) I have severe secondary adrenal insufficiency. So, originating in my pituitary gland as far as they know. It could be tertiary too (hypothalamus) but they doubt it because that’s very rare. Whichever type it is, I’ve got extremely low ACTH and cortisol (they couldn’t find any when they looked) and I’m on dexamethasone forever, basically. I went at least six years before getting treatment, and almost died several times before they figured out what was wrong. (My doctor’s comment was something like “Usually we find out people have this when they end up in the ICU. You should’ve ended up in the ICU, but you didn’t [because of complicated hospital bullshit], and you somehow survived anyway.”) Anyway that’s my story in a nutshell, I’ve been on dexamethasone for a few months and went from bedridden six years and in a powerchair, to being able to walk up several flights of stairs and I haven’t really needed a wheelchair very often since treatment, can do jumping jacks, all kinds of things. So getting treatment has made a huge improvement in my life, very quickly. I may also have myasthenia gravis and that may be complicating things though.

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