We were told that bilateral adrenalectomy (BLA) had nearly a 100% cure rate. Alex's surgeon said at least a 95% cure rate. We hoped and prayed that, for a change, she would fit into the "normal" percentile. Nope. Too easy. It's back.
Alex's had her adrenals removed the summer of 2009. Slowly but surely things got better, weight came off at about a pound a week for 2 years. Insulin levels, triglycerides, and cholesterol levels all dropped to normal values. Her face shape changed, her "hump" went away, the stretch marks faded to white, the anxiety and insomnia were gone, she started a part time job and made a dent in catching up with school credits.
Forward to summer of 2011. The signs of Cushing's started creeping back in. First, we assumed it was just too much replacement steroid. So we reduced, and reduced, and reduced some more. Without adrenals it's typical to need about 20 mg of hydrocortisone daily. Alex went from 17.5 mg daily down to 6.5 mg daily. It was time to talk about rest tissue with the genius doc in LA.
Here we go again; over the past 6 months Alex has been doing frequent lab testing. The results appear conclusive; she is producing cortisol on her own, despite the fact she has no adrenal glands. Like before, she is cyclic and she feels awful. The search is now on to try to locate the rogue tissue so that it can be removed. So far she's had a CT; the surgeon couldn't identify any suspect tissue. We are working on getting a PET scan with Cosyntropin set up. It's been used successfully in the past. Once anyway. Until they can find and remove the tissue the only other options are a suppressant drug which she tried before (it made her feel even worse and didn't help) or a chemotherapy drug they use to destroy cancerous adrenal glands (that comes with a long list of very serious side effects).
For now I'm praying. A lot. For a CURE.