Pituitary

I'm a 30 year old female, post bilateral adrenalectomy 9 1/2 months now for Cyclical Cushings.  Previously I had two transsphenoidal pitutiary surgeries also for Cyclical Cushings, with the first showing two adenomas and hyperplasia, and the second showing one adenoma and hyperplasia.

My adrenals were 5 and 6 times larger than normal ones.  For the first 3 months after my BLA I lost 35 lbs and nothing in these last 6 months.  I have such severe fatigue that after taking my morning meds I sleep for another 5 hours or so and also need naps.  I was tired before the adrenal gland removal, but now its too much to function.  My renin, T4, T3, growth hormone, estrogen, progesterone, testosterone, hydro replacement levels, and everything else is checked constantly, so that isn't the issue.  

I got to a point where my endo thought maybe I had adrenal rest tissue and had me do 3 tests on dex (2 midnight blood draws and an 8am blood draw) which came back normal.  I still feel Cushings symptoms of hormonal shifts, exhaustion, no libido, inability to lose weight, etc but I don't know what's wrong.  Also, after my adrenals were removed I never got a tan (my ACTH is usually 100 or less).  I'm currently on 11.25mg of hydro (which my 24 hour 17ohc tests show is the right dose), but I fear that isn't a normal level for someone who is supposed to be cured. My pituitary MRI came back normal, but I am having problems with the field vision in my eyes.  Do you think its possible I could still have Cushings?  Possibly an ectopic source (even with the relatively low ACTH levels)?  What do you think my next steps should be??

[Daniel M Prevedello, MD]

Dear Sparkvicious,

The only way to know is by starting all over again in terms of investigation. I had patients that even after adrenalectomies, they had persistent Cushing's disease. One of the reasons is that a little bit of residual normal adrenal gland tissue is enough to be hyper stimulated by ACTH in excess produced by the pituitary adenoma or another ectopic tumor in the body.
I would need to see the specific lab normal range for your ACTH, but in general 100 is elevated.
You will need to talk to your endocrinologist to then do the tests to check if you still have Cushing's syndrome and go from there.