Last Thursday, I went to see my local endo again. I ran out of gas going up the exit ramp! What a mess! I got out and started walking, and some nice lady picked me up and took me to my doctor's appt. She lived close to my doctor. I was so thankful that she stopped. It was cold outside!
My doctor seemed a bit baffled. All of my lab stuff looks good, so we can't blame anything on thyroid (she says) or any of my other hormones. My face and neck was getting really red while I was there. I told her to feel it, as it is hot to the touch. She asked if anyone had ever checked me for a carcinoid tumor before. I said no, so she wants that checked. It can be an ectopic source for Cushing's. It also goes along with MEN1. I'm doing a UFC for that test right now, and I'll do a blood draw for it tomorrow. I don't think that's what is going on. I sure hope not anyway! I don't want to have to go through Chemo! So, I'm hoping it just rules that right out, and I'll just be looking at dealing with regular ole Cushing's. It's bad enough by itself!
I've had a headache all day. A dull headache, that just bugs you. I hate it that I can't sleep right. I go to sleep, and get up off and on all night. When it gets closer to morning, I can sleep real good and stay in bed for hours without waking up then.
I have a phone appt. coming up on Saturday night with Dr. F. I'm wondering if some of my labs caught his attention. I had the ACTH stim test done twice. It was the low dose stim test. My cortisol almost quadrupled from the baseline number, the second time I had it done. The first time was more than double. I've read that a normal response is double. If it is higher than that, it indicates Cushing's. I think my quadruple response would indicate that I still have Cushing's!
I hope we can get it all figured out quick and just move on. I still feel better than I did before surgery, but not as good as I did after surgery. I'm feeling worse all the time. I dread going back to that place! I was almost in tears tonight, just because I've been feeling so bad, and I don't want to feel like this. I've had indigestion so bad, I've had to sleep sitting up on the couch! I just want to be normal and feel good. I can't wait to hear what Dr. F. has to say on Saturday!