@bryanf @babsforshort @sbc4a
Hello,
I wanted to provide an interesting update on my SAI diagnosed in 2/2024. After the roller coaster ride of basically being severely ill all year, multiple hospitalizations and mismanaged steroids, I reached out to an advanced endocrinologist who suggested that I possibly did NOT have AI. Mind you, my dx was evidenced based on labs and scans. On my own, without notifying my doctors because I felt they didn't have enough knowledge to treat me, began researching my ongoing symptoms. I realized that I was being over replaced with steroids and all my symptoms fit with this diagnosis. It was a "catch-22" with my AI. As long as I was on steroids, my pituitary would recognize that my body was receiving them from some source, and would just stay in vacation mode. I began a very slow taper, carefully monitoring my symptoms and making sure I stayed well by protecting my immunity. In December 2024, I requested that all the original AI be run again and for the FIRST time in a year, the labs reflected pituitary action. They were in a normal range! As excited as I was, but still feeling cautious, I had the labs repeated again in February. By this time, I had totally weaned off and again my numbers were
elevated. My advanced endo and my regular one were both shocked but agreed that my pituitary was doing it's job again, and although I was told initially that I would have AI for life, I'm happy to report that my experiment was successful.
I did deal with steroid aftereffects for about 3 months, but compared to having no quality of life in 2024, I'm significantly better now. Wishing all of you hope and a better outcome too.