I'm only 5 weeks out of surgery, so I'd say it's too soon to come to any kind of conclusions about anything at this point, but I do have some concerns.
I had my morning cortisol checked at 3 weeks post op, and it was 5.9. That's not so bad, but it's also a bit concerning when it was down to 0.7 just 3 weeks before. In one way, it's good that my adrenals and pit are functioning again. Here is what concerns me. I've weaned down to 20 mg. in the AM, and my plan was to wean 2.5 every two weeks from here on out, if I could. Well, before I even get 2 weeks away from a wean, I start getting "high" symptoms again, and feel my cortisol is just way too high. I don't know what to think of it. I don't know if it is because I was in a low just before surgery, (I know I was) and my body was use to that, or if it's because my cortisol is rapidly coming back up.
When I did my first 2 weans, they were 5 mg. at a time, in the PM. I did feel them, but not anything very bad. My withdrawl symptoms were very light. Then, I don't make it two weeks before I'm having hot flashes again, zits, indigestion, bruising, red marks, trouble thinking... need I say more? Oh and sleep? Well, I'm still messed up on that. I DON'T sleep at night unless I take a sleeping pill, period! I DO sleep in the day some days, and most days I sleep really late, and hate getting up. I can sleep without a sleeping pill for hours and hours in the daytime. It feels like the old pattern. I feel like my diurnal rythme is still flip flopped. Another concerning thing is with 2 sinus infections and a really bad cold, I never needed to stress dose, and never felt a difference! Infections are suppose to lower your cortisol, and I had no ill effects from it. In fact, when they started getting better is when I start feeling worse.
As for how I feel... well, I felt great right after surgery, when my cortisol was so low. My thinking was much better, I felt alive and like I wanted to do things. Now I have that blah, I don't care feeling again. When I wean, I feel better as far as Cushing's symptoms go, and just feel some AI'ish type stuff.
I partly wonder if my cortisol is going to a normal state so soon because I had a mega small tumor, and I had minimally invasive surgery. Then, I also wonder if it's because I was so low prior to surgery, that these replacements are just too much. I guess it could be a good thing to be able to wean off of the steroids quick, but then again, it makes you wonder if it really is a cure.
Eh! I guess it's one of those things where time will tell. I'd rather not think about it! I'll just call it a cure and go with that! Ha!