I had a successful surgery of the pituitary adenoma (11 mm) almost one year ago and continue to follow-up with the ACTH stim test to see if I can taper off my hydocortisone replacement therapy and the past three tests I have had my baseline ACTH has been low 40s, (pg/ml), yet my cortisol is only 10ug/dl. My endocrinologist can’t really explain my ACTH levels and thinks they should be lower (20s) and mentioned it could either be my pituitary gland making ACTH that is not effective (due to low/normal cortisol) or possibly a few tumor cells (ie., recurrence) which I don’t want to hear since I am feeling so good, my mood, great sleep etc again. Could it be that my pituitary gland just makes a normal/high range of ACTH? Other doctors have told me to only focus on the cortisol which has been low to low/normal for a year now. Thoughts?
My daughter is the cushie in the family. She had her surgery last year, too. She’s having similar issues as you are.
Her endocrinologist put her on dexamethasone after surgery, then months later switched her to hydro for weaning. Her pain got so bad she was switched back to dex. She’ll be having her IGF1 tested. I admit, I have no idea what that means!
So complicated but I think it has to do with Human Growth Hormone which signals for ACTH to be made which then signals cortisol to be made.
She was ‘intermittant’ Cushings before finally being diagnosed with a microadenoma, finally at the age of 34. I think how long coming back depends on how long until diagnosis…just how fatigued the adrenals became…etc.
Wish I had more for you. You might want to check out the Cushing’s Help Boards at invisionzone.com. That site seems to be a bit more active and they have a lot archived, too.
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