I had my post op appointment with my endocrinologist today. We pretty much got no news. My 8am cortisol levels for the first 4 days after surgery were a little bit higher than she'd like to see them, but then I had two 24 hr urine tests later in the week that had low cortisol levels. I had low levels after the first surgery too, so we're going to do some more tests and wait and see. We discussed what my options were if this surgery turns out to not be a cure for me. They're a little bit better than I had originally thought, but not ideal. I would rather not rely on medication and wait for radiation to work or have an adrenalectomy and also be dependent on medication forever.
As far as how I'm feeling, I feel pretty good. I'm not sleeping well, which could be due to the medication I'm on or because of the Cushing's, it's hard to tell. I never felt the immediate weight off my shoulders like I did with the last surgery. I felt so different even a few hours after surgery, it's hard to explain. This time I did not feel that. I am also not seeing the results like I did last time. I lost a ton of water weight the week after the last surgery, and this time I haven't noticed a big change from before surgery. None of these things are real indicators of anything, which is what's so frustrating. I wish I could tell whether or not the surgery worked, but it is too soon to tell. I go back on the 29th, and before that appointment they'll test the rest of my pituitary function to see what we're dealing with there. There is a possibility I lost some hormone function after they removed more than half of the gland.
4 more weeks of waiting! Hopefully things will start to look up soon!
As far as how I'm feeling, I feel pretty good. I'm not sleeping well, which could be due to the medication I'm on or because of the Cushing's, it's hard to tell. I never felt the immediate weight off my shoulders like I did with the last surgery. I felt so different even a few hours after surgery, it's hard to explain. This time I did not feel that. I am also not seeing the results like I did last time. I lost a ton of water weight the week after the last surgery, and this time I haven't noticed a big change from before surgery. None of these things are real indicators of anything, which is what's so frustrating. I wish I could tell whether or not the surgery worked, but it is too soon to tell. I go back on the 29th, and before that appointment they'll test the rest of my pituitary function to see what we're dealing with there. There is a possibility I lost some hormone function after they removed more than half of the gland.
4 more weeks of waiting! Hopefully things will start to look up soon!
Danielle,
ReplyDeleteJust wanted to let you know that I am hoping and praying like crazy that this is a cure for you!
Sarah