Okay :)
I guess I can start with the easy things first. An abdominal mri showed me with seriously enlarged adrenals. Normal adrenals are supposed to be too small to show up on an mri, but mine look most of the size of the enlarged adrenals on this page http://www.endocrineweb.com/adrtest.html
The radiologist said it didn't look like I have adrenal tumors, they just look like they're full of bubbles. And something just above each kidney hurts like a cold numbing pain.My 17-og-pregenolone was 35ng/dl at 60min, the normal range printed on the lab report said 290-900. That sort of agreed with a web page at http://www.aruplab.com/guides/ug/tests/0092337.jsp at least that 290 was the bottom of normal at 60min.
I don't have my baseline 17-pregenolone right in front of me but I think it was around 15ng/dl. The normal range for baseline was around 45-300 (?)
My baseline 17-ohp was zero, or too low for them to measure, or something. But at 60min, it was 121ng/dl. The lab report gave exactly the same normal range for baseline and 60min. I looked at the chart you pointed me to, and my results wouldn't even be on there. There was another chart at cares http://www.caresfoundation.org/symptoms.html and my results aren't in any of the catagories they show, not even the "normal" circle.
Since I was 7-ish, I've had a problem with not being to exert myself very much, or else I get dizzy and I'm not able to breath and I pass out (for real) It's gotten progressively worse, until now it's pretty much all the time whether I exert myself or not. It's gotten hard to keep any food down, because of nausea. And I feel wicked dehydrated but liquids go right through me without helping.
Sometimes I used to turn into a salt-monster :) but that was only once in a while.
And sometimes I start feeling so cold that I collapse, a couple of times when that's happened my skin turned purple and my temp dropped to 3-4 degrees below normal. On two occasions I've been down on my living room floor for 4-5 hours and not able to move or call for help.
I always used to recover on my own, but recovering is taking longer and longer.
But according to the stim test, my aldactone and cortisol both had high baseline levels and went to 2x the normal for 60min stimulation. The endo said it was impossible, because none of the hormones in the chain ahead of aldosterone/cortisol ever got high enough for them to do that. Then he made lots of mean comments at me, worse than some "Dr House" character. But the people at the NIH also said they didn't know what was going on with my adrenals either.
And that test hurt me really bad, if I had to take ACTH every day it would probably kill me.
At one point the endo prescribed dexamethasone for a supression test, and that was the best I'd felt in a long time. But he wouldn't prescribe it for me just because it made the problems go away.
I don't have virilization problems, if anything I'm just the opposite. My body has always been pretty hormone starved, and puberty was a long time overdue. And even then it takes help to keep my system running. Progesterone helps, and so do a bottle of pregnenolone pills I've got. Only the pregnenolone feels too strong, and I can't handle the hormones I never had to learn how to get used to.
They did an HCG test to see if they could get me to ovulate on command, and it worked but it was nasty.
I don't know what I'm supposed to do now. The whole world has given up on me, like I'm supposed to just lay down and die or something.
