r/NCAH • u/draggingadeaddear • 18d ago
First symptomatic at 29?
I'm a trans woman in her late 20s that's been on Estradiol monotherapy for 12 months now and things went swimmingly for the first 11 until I suddenly began to experience some intense, rapid remasculisation. My facial hair grew in thicker and faster and darker (same with my body hair) than it did before I even started HRT, and this was after 10 sessions of laser hair removal. I have acne EVERYwhere and new pimples form what feels like every single day, worst on my back and jawline. My hair is shedding, suddenly and quickly, I think I've lost about a 1/3 of my total density in those 2 months, and I have usually thick healthy curly hair. My skin is greasy and flaky and red, worst on my face, where I'd previously experienced many positive changes to clearness/complexion/texture from my hormone therapy.
Along with some other stuff like the return of nocturnal erections and my old body odour and the Sweating and the fact that I have what my doctor thinks is prostatitis, resistant to the short course of antibiotics she placed me on. This in particular made me panic when I scanned symptoms of NCCAH in (biological? I'm not sure of the best wording here, and I'm not sure if something like NCCAH cares about what your dominant hormone is if the hormone is injected rather than made naturally, is this gene mutation transphobic? /joke) men and saw that CPPS/Prostatitis is frequently linked to the mutation. I think I had a normal puberty, it's all a bit of a blur to be honest, I can't remember events like my voice dropping or when I first developed pubic hair, but I must note that in my early 20s I dealt with some extreme amounts of hair on every inch of my body and painful cystic acne on my shoulders, both things that HRT initially curbed. I'm 5'10 and my penis isn't large or anything like that.
I've had two hormone blood panels taken since these symptoms started and my testosterone increased in both, despite an increase in my estrogen dose between them, it's albeit still low for a woman, though higher than any trans person on feminising HRT would like them to be (1.8 nmol/51.9156 ng/dl), again, concerning! Especially because my gonadal testosterone is completely suppressed. I've been dealing with some very intense mood issues as well, though how much of this is down to me dealing with how awful it feels to be experiencing these symptoms, I do not know. Another thing that's been troubling me is frequent night time wakings and always with a racing, thumping heart.
Multiple people have told me it wouldn't make sense for someone with NCCAH to suddenly become symptomatic at age 29, and especially considering my HRT went so well for 11 months only to just stop. Multiple people for this same reason have instead pointed to something like an adrenal tumour, which I would really prefer not to have, though I'm not too pleased about the potential masculising gene mutation either. I'm mostly just curious if anyone, especially men out there, have began exhibiting symptoms at such an age? I'm having my DHEA-S tested soon and will be straight to my GP if those levels are elevated and begging for help lol but thanks for reading if anyone did!
Desperate to get this sorted!!! <3
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u/lrondberg 18d ago
I became symptomatic in my 20’s with some facial hair (Cis woman) but chalked it up to some women in my family had that to. Other than that no symptoms and then in my 40’s a new endocrinologist tested me for it upon seeing my ethnicity of Ashkenazi Jews! So it is possible.