Hello again Julie :)

As of steroid use, I’d had one dose of hydrocortisone in summer ’05, which apparently had unintended effects. It put me under the table for a two day crisis experience, which started before the hydocortisone should have had the chance to wear off. Other than that, I’d never had anything steroidal until a test dose of dexamethasone for bloodwork in May ’06. That also put me under the table, but it got them their bloodwork. I could be on prednisone right now, but after a couple of days I noted that while it keeps me from passing out, it also leaves me too weak to move. So no more of listening to medical advice that never works out right.

I’ve been living with progressively worsening symptoms of insufficiency since I was not quite 8. According to a medical book I’ve got, that is also coincidentally the age of adrenarche. Since january of 2003, I’ve had 7 crisis-like experiences besides the two that were induced. My doctors said they don’t understand why it’s happening at all, because when they gave me ACTH it raised all my adrenal levels except for 17-ohp and 17-ohpreg staying below normal. But they didn’t explain why the ACTH also knocked me out for almost a day.

I seem to recover from these experiences without meds, but it’s been taking longer and I never get back to the amount of energy I had before it happened. Except now, all the doctors have given up on me,
and the NIH said I don’t fit the guidelines.

But where are my adrenals now? The May ’06 ct-scan shows empty space where there was something in May ’05. They aren’t going to disappear by themselves. I wasn’t taking steroids to make them atrophy. I don’t understand.