Dr. Chris' Story...
I'm a 44 yr old Doctor of Public Health (UCLA educated US citizen--born in NY --currently living in the DR) who was diagnosed with cyclical Cushings Disease by OHSU. After two transphenoidal pituitary adenoma removals (one prolactinoma & FSH producing, but the other pulsatile ACTH) I still had elevated ACTH and underwent a bilateral adrenalectomy. Currently I am managed via hydrocort and fludrocort, as well as my own addition of DHEA, estrogen (I had a hysterectomy prior to diagnosis), and various vitamins/minerals.
My history of being misdiagnosed is classic of Pulsatile Cushings and I feel very fortunate to have finally been diagnosed at 41 (I'm now 2 years out of bilateral adrenalectomy, which followed the second pituitary transphenoidal by 2 months and the first by 18 months.) The time immediately prior to diagnosis and during the surgeries was hell and my taper off from 200 mg hydrocort to current 20 mg was almost as bad. I have lots of experience with self-mangement, educating others (including professionals) and consider myself a "success" in terms of treatment; however, because I no longer have adrenals, I am technically an "addison's" case on top of being a Cushings case (I still have elevated ACTH and am monitored for Nelsons.)
Living in a developing country presents all sorts of challenges including the simple obtaining of non-fake medication and hoping no one steals my gold medic-alert off my neck. I have learned to carry a kit with injectable Solu-cort (because many clinics don't carry it) and oral meds at all times.
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