Here is a short history. I went to the doctor because I was having regular periods that lasted up to 13 days. They discovered I had a 3-4mm pituitary tumor which has grown to 7mm. They are now trying to diagnose what it is secreting. I have a history of high ACTH, which is indicative of Cushings Disease, but a history of normal cortisol. In Cushings the tumor secretes ACTH which causes your cortisol to go up. So they thought I ALSO had congenital adrenal hyperplasia, where I am deficient in an enzyme that is necessary to make cortisol. But I've been tested twice for that and both tests say I don't have CAH. To complicate things, I have a history of extremely high pregnanetriole. My doctor says he has never seen this except in cases of CAH. He is extremely perplexed, to say the least! My doctors are planning on sending me for an invasive test to take blood from the vessels around my pituitary to see if there is more ACTH on the side with the tumor.

Ok now to my question :) I found a website that says high pregnanetriole is indicative of a high progesterone level and an ovarian tumor. How pregnanetriole can be related to both cortisol and progesterone is beyond me ;) I've asked my endocrinologist about it and he told me to ask my gyn. My gyn had never heard of pregnanetriole before. I switched to a gyn who specializes in oncology but couldn't get a word in edgewise about my blood tests. He was more concerned about my lengthy bleeding. Has ANYONE out there had a high pregnanetriole level? Any suggestions? I guess I feel paranoid getting a third opinion, but the explanation they have for my high level makes no sense (which they readily admit) and I need answers.
Thanks!!!