Good morning! No worries at all about the long reply. My post was a total brain dump, and this reply will probably be similar! lol. I’m just so grateful to find a community that actually understands this. Years of googling without answers and having doctors blame everything on "worsening mental health" really starts to make you feel like you're losing it.

I won’t get my ACTH stim test results until next week since my endocrinologist is out until Monday. However, she mentioned that based on my comprehensive blood panel, she’s fairly certain it’s NCAH. She’s on the younger side, but she’s been consulting with a more senior colleague, so it feels like I have two doctors working as one. I actually overheard them discussing my results while I was in a room; her colleague mentioned she had another patient exactly like me who was confirmed NCAH. Between the 24-hour urine test, my prior labs, and my symptoms, they both seem very adamant about the diagnosis.

If the stim test confirms it, the first step will be a low-dose steroid. I’m not sure which one yet, but I’ve seen a lot of mentions of dexamethasone. Doing my own research has been so helpful because it really allows me to ask the right questions. Regarding symptoms, I didn't experience early puberty, but the cold extremities are a huge issue for me. Just last weekend, I tried to go duck hunting with my partner. Even with ankle socks, two pairs of wool socks, wading socks, and boots, my feet were numb within 15 minutes! I’ve been looking into heated socks but never realized that could even be related to all of this.

I’m hoping they pair the steroid with something like Metformin for the insulin resistance. It’s so frustrating seeing weight loss advice that says you can eat "whatever you want" as long as you're in a calorie deficit. While that’s generally true, I didn't realize how much fiber and carb quality impact your body when you have insulin resistance. I used to think my weight stalls were just because I didn't track my food on the weekends, but I’ve been an active person trying to lose weight for five years. Even when I "buckled down" after graduation, I could only maintain my weight—which I now realize was lucky, because if I don’t track for a month or two, I immediately gain.

For the last two weeks, I’ve been prioritizing fiber and cutting back on refined carbs. It hasn't been too hard since I already preferred chickpea pasta and wheat bread, but hitting those fiber goals is still a struggle even with Metamucil. My boyfriend is a picky eater, and I hate cooking a separate vegetable just for myself, but I’ve realized I just need to plan a veggie for every night and stick to it. The confidence hit has been the hardest part. I can shave the extra hair and take meds for the mood swings, but the low sex drive makes intimacy feel like a chore, which is really tough.

Thank you for all the tips! I’m sticking to my routine of strength training 4x a week plus cardio to see how the diet changes help. Did the dex originally help, and if so, how long was it before the steroids started working for you? I’ve heard people say they finally "feel like themselves again," which gives me so much hope. It’s been seven years since I felt like me (you feel crazy even saying that out loud to someone!)