Hi everyone. I am F26 and was diagnosed with Cushing’s disease in 2018 (pituitary microadenoma, ACTH-secreting). I had transsphenoidal surgery in 2018 followed by Gamma Knife radiosurgery in 2019. Surgery was unsuccessful so Gamma Knife was used as second line treatment. I went into remission and was well for about 2 years.
Since 2023 I have been getting progressively worse. I have been diagnosed with ME/CFS, POTS, MCAS, hEDS, UC, and have a positive ANA 1:320. My hormone values have been abnormal including elevated DHEA-S, testosterone, aldosterone, high-normal cortisol and prolactin, and fluctuating TSH.
My last pituitary MRI was in 2019 — 7 years ago. I have never had a GH stimulation test, DEXA scan, or proper full pituitary hormone panel. My endocrinologist keeps telling me nothing is wrong despite all of this.
I have finally gotten an appointment with the endocrinology department after pushing hard. I am planning my first pregnancy and am very worried about whether these hormonal imbalances are safe to conceive with. And also my declining health in general.
Has anyone experienced late-onset hypopituitarism after Gamma Knife? Has anyone had to fight for proper follow-up care after Cushing’s remission? Any advice for my upcoming appointment - or in general - would be so appreciated!