Recovery woes

by Kristin

About two weeks ago, I met with a new endocrinologist in Seattle to continue my recovery care from Cushing’s syndrome. At the time, I was still on prednisone (a really small does - 2mg/day). The thing was, the prescription for prednisone was written by my endocrinologist in Portland and I forgot to ask my new endo for a refill prescription. So when I ran out, I thought what the hell, I’m just going to see how I feel without steroids. The first 4 or 5 days were great, I mean G-R-E-A-T. No aches, no pain. My energy level was up a little. WOW, I’m finally making progress.

During my first visit, my endo performed an ACTH stimulation test to see how well my one remaining adrenal gland was working. Then yesterday, I had a follow-up visit with my new endocrinologist and he gave me the results from the ACTH stimulation test.

I told him I’d been off prednisone for more than a week and for the most part, I was feeling pretty good. Although, I had now started having aches in the evening and had a couple of episodes where I felt really light-headed. But all in all, I was really glad to be off steroids.

Since my body had responded relatively well without prednisone, I was hoping it would be a sign that my adrenal glad was working at a higher level.

My endo had hoped my cortisol range would have been closer to the double digit range after the ACTH stimulation. No such luck. In fact, I’d barely made any progress since June. Before the stimulation test, my cortisol level was 5mcg/dL. After the stimulation, it was 9mcg/dL. Well, that sure put a damper on things. My body is so damn slow to recover. RARRR.

I can feel the aches trying to creep on more frequently, but I’m trying to keep them at bay. One day at a time, right?

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