Possible adult GH and secondary adrenal deficiency
I’m a guy in my 20s studying engineering in Switzerland, and I come from a family where almost everyone is an MD. Despite that, I’ve had to fight for my own medical care my whole life. Growing up, I looked incredibly young and androgynous, and by 7th grade, I was the shortest kid out of 353 students. My mom insisted I was just a "late bloomer," but I had to beg seven times to finally see an endocrinologist. They completely ignored the fact that I was born with cryptorchidism (undescended testicles) and that my grandmother was extremely short, but I finally pushed for insulin/glucagon stimulation tests. My peak GH came back at 6 and 8 (under 10), and my cortisol was also low. I was diagnosed with hypopituitarism and put on Somatropin. That 1.5 years on GH was the best I’ve ever felt in my life. Even while dealing with massive 8th-grade exams, the death of my grandmother who actually raised me and was basically a mother to me my sleep architecture was perfect, my focus was sharp, and I felt genuinely alive and happy.
I stopped the GH when I hit 1.70m because I was worried about the risks. The crazy part is my endocrinologist who is a pioneer in the field and literally wrote the manual stating that a normal IGF-1 doesn't rule out GH deficiency just let me stop without a word. She never offered an adult transition stim test or referred me to an adult endo. Fast forward to after high school, and my system completely broke down. (The summer before I started uni) My sleep architecture shattered, I developed delayed sleep phase syndrome, and I started sleeping constantly but never feeling rested, surviving only by abusing coffee. I developed this total, bone-shaking anhedonia. I wasn't sad or depressed multiple psychiatrists couldn't even diagnose me because I was still doing stand-up comedy and composing music I just felt totally dead inside. Now, I'm in one of the hardest engineering majors in the world, and while people tell me I have a brilliant grasp of the abstract concepts, my brain fog is so bad I make the stupidest mistakes. Physically, I went from being a highly active athlete doing freediving, football, and placing top 10 in table tennis in a major city, to barely being able to handle a trek. I’ve even developed an early hunchback because my muscles get so exhausted I literally can't carry my own head up.
Recently, my uncle (a retired biophysics professor) pointed out that my childhood cryptorchidism and current symptoms scream untreated pituitary failure. I had a blurry 1.5T MRI back in 2018 that didn't show anything, and multiple adult endos recently just told me I'm fine and to go to psychiatry. I finally went to a private lab, and while my total testosterone is fine at 683, my estradiol is way above range, and my IGF-1 is sitting at 137 (the absolute bottom 1% of the 133-440 range). Despite this data and my childhood history, my mom and her doctor colleagues are furious at my uncle, claiming he made me obsessed and insisting my issues are purely psychiatric. I did recently find a new endocrinologist at a private hospital. She also doesn't think I have AGHD, but she is at least willing to send me for the stimulation test, provided I do a repeated IGF-1 measurement and a new pituitary MRI first. Has anyone else experienced this kind of transition failure where childhood GH deficiency was never re-tested for AGHD? Can untreated partial AGHD or broader hypopituitarism cause this level of physical anhedonia, muscle fatigue, and sleep destruction even with normal Testosterone? Any advice on how to navigate this testing phase and not get written off as a psych case would be life-saving right now. (My cortisol also came out lower than the reference range in 2018 but normal afterwards...)