Yesterday was my appointment with the nurse practicioner and I got to see the actual endo too. I like the NP much better. She was very thorough and asked lots of questions and listened to my answers. She brought the endo in to see me at the end to get her opinion and she was very rushed which was probably reasonable but of course doesn’t give a good impression.
Anyway. The bottomline was that it seems to be Cushing’s but my previous UFC was normal (wondering still if it was even mine that time). The only tests she feels are accurate are the UFCs, but I have a different opinion after spending a lot of time on a Cushing’s forum lately. Cyclical Cushing’s (which she said is what mine probably is) can be hard to catch and other doctors (including the experts) also use midnight saliva tests but when I asked her she didn’t think those were any good. She said we just have to keep doing UFCs till we catch a high. The thing I’m concerned about is that one of the women on the forums who had cyclical Cushing’s cycled several times a day so her UFCs (btw, that’s 24-hour urinary free cortisol) averaged out to normal. A few months ago I would have more variance in my symptoms on different days, but lately I just feel the same all the time (you usually feel different in highs and lows). And since my endo doesn’t believe in the saliva tests…well I’m worried about ever getting a diagnosis.
At any rate, I’m doing a UFC today and turning it in tomorrow. Let’s hope it turns out high.
Oh and she said it probably is from a tumor in the pituitary gland since my ACTH is normal. Bah.