I may be ready to say goodbye to this community?
I got back my ACTH stim test results recently, hooray! The endocrinologist diagnosed me with PMOS in the end. Though, I still am still pondering about all of the lab work and discussions I've had.
Labwork presented: DHEA-S was elevated (first 400s, second time during ACTH Stim test was upper 300s), free testosterone was in range but high, everything else was normal for what is deemed female. 17-Hydroxyprogesterone from the stim test was like... 177 ng/dl. A1c and insulin test showed prediabetes (like the start of it) and insulin resistance.
Other history: I have given birth multiple times and don't experience irregular or absent periods. From whatever ultrasounds I've had in the distant past, I don't recall anyone saying they looked abnormal or had a lot of cysts. Birth control and losing significant weight never improved my symptoms, nor did the opposite of either improve things. I also had this bizarre and similar experience while I was very ill with covid with a multi-day fever as someone I personally know with CAH had when ill with a different severe illness. When I asked, she said it what she had was a mild adrenal crisis. Although, I got out of mine fine, within hours after eating a little bit of food and trying to keep a calm atmosphere. Because of that, her encouraging me to test for NCAH, my having low blood pressure, among other things from extensive research, I reached to the present day with a diagnosis!
So, I am in this weird space where I have been experiencing hirsutism that has only gotten worse since I was an older teen and I only fit 1/3 criteria for PMOS while I am showing no signs for any other condition. My endocrinologist even said my history and labworks didn't really indicate either PMOS or NCAH, but it didn't mean it was impossible for either.
So... I guess that this is it? Unless I messed up my tests or forgot something, I suppose I have PMOS? Haha! Anyways, I'll always support every person's journey to advocacy and getting answers for their health. It irked me so much about the clinical overlap of PMOS and NCAH, yet NCAH was often untested for and unmentioned in the medical field. I've learned so much and am grateful to have learned from amazing folk like you on here, r/intersex, and even r/PCOS! Thank you guys <3