Hi everyone. I know I've learned about Addison's in the past but I kind of forget what it is now. But I'm hoping someone can help me. I have a pit tumor, high acth, very high pregnanetriole, but normal cortisol. My doctors *think* I have cushings disease AND congenital adrenal hyperplasia (leading to the normal cortisol). But I've had 2 normal ACTH stim tests. They readily admit they've never seen anything like this and aren't sure whats wrong. They want to do petrosal sinus sampling next.
I'm trying to educate myself as much as possible, but none of my doctors seem willing to explain what pregnanetriole is to me. They seem very unsure of themselves. I keep asking if it is related to progesterone as well as cortisol but they especially don't answer that question! I was hoping someone here would have an idea for me since you all are familiar with hormones :)
Thanks!!

Thank you so much for taking so much time to help me! My endocrinologist did theorize that maybe the acth is only acting on part of my adrenal glands for some reason. He also made this unnerving comment, "Maybe the test is picking up something other than acth, but calling it acth, like cancer. But you don't have cancer..."
Here are my test results:
4/17/03: prolactin 33 (3-23), testosterone elevated .97 (.10-.90)
6/3/03: prolactin 42 (3-23), androstenedione 4.8 (.1-3.0), 17 hydroxy progesterone 3.3 (.1-3.0)
7/8/03: My first acth stim test they did not test my basal levels or my acth levels at all. cortisol after stimulation 46 (4-22). prolactin 11.4 (2.8-29.2). testosterone 2.9 (.2-2.2)
7/18/03: 3-4 mm microadenoma on mri
1/04: acth 205 (I don't have the reference range but I'm pretty sure normal was less than 70); Pregnantriole high 1756 and 1405 (I think the normal was less than 500); cortisol was normal but i don't have the number
3/2/04: 2nd acth stim test. basal cortisol 21.6, after 30 min 39.4, after 60 min 40.6; basal 17-oh progesterone 161, after 30 min 159, after 60 min 136; basal acth 84 (this is the only one I have the reference range for: 10-60). C peptide 462 (297-1419), 1.4 (.9-4.3)
4/7/04: 7mm microadenoma on mri
6/16/04: acth 80; pregnantriole 1789, 1376; cortisol was elevated by like 1 number above the reference range.
I'm sorry I don't have everything perfectly recorded! Thank you again for any help you can give me!

Thanks for the ideas!!