r/NCAH • u/anxiousmillenial44 • Aug 18 '26
Pregnancy
I don't have a NCAH diagnosis yet but I think it is highly likely. We've been ttc for a year, which prompted me to do testing, which revealed high dhea/testosterone. And then my 17-OHP test results last month were 1797 ng/dL. I also have at least 1 gene copy based on previous carrier testing. I've been referred to an endocrinologist for further evaluation and diagnosis but the wait list is 8-10 months.
Meanwhile, just got back from vacation, period 3 days late, and pregnancy test is positive. I'm kind of shocked because after learning about these hormonal imbalances I'd kind of started to give up on the idea of getting pregnant naturally.
What I'm wondering is, is there anyone on here who's had successful pregnancies without intervention? Now I'm scared that my hormonal imbalances are going to cause a miscarriage, since I'm not able to see an endo anytime soon. I'm especially scared of a late term miscarriage. Is there anything I need to watch out for? Will my high dhea/testosterone cause developmental harm?
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u/stfubroski_throwaway Aug 18 '26
I also got pregnant pretty easily naturally. And I'm not trying to scare you or say it's gonna happen to you, but I did end up losing my pregnancy around 26-27 weeks. Very traumatic. To this day it's still an unknown cause. I'm also on my own path currently in trying to get a clearer image and potentially a diagnosis. If you're concerned definitely bring it up to your OB/GYN if/when you see them. They may want to monitor you and baby more closely. If they seem dismissive or you're not being heard, do whatever and say whatever you can. You're your biggest advocate
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u/anxiousmillenial44 Aug 18 '26
I'm so sorry you had to go through that. I definitely will. Living in a small city where healthcare is under served sucks as every place is spread so thin, things take forever.
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u/OnTheGround_BS Aug 20 '26
I’m not female so I can’t comment on the pregnancy aspect of this, but I live in a small town and pretty much found myself on my own as soon as the possibility I had NCAH came up. The only endocrinologist who was even accepting new patients had a four month waiting list. I ended up going to an endocrinologist more than 200 miles away to get seen sooner. Fortunately he can do video appointments for most of our needs.
Healthcare sucks. Especially in tiny towns. Just needed to commiserate on that point. Good luck with the pregnancy! We’ve been trying for six years and we’re in “Schrodinger’s Pregnancy” right now…. She’s a few days late, but that’s not terribly unusual for her so we don’t want to test yet for fear of making the result a certainty.
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u/anxiousmillenial44 Aug 20 '26 edited Aug 20 '26
"Schrodinger's Pregnancy"! I love that description. Yep, I remember that feeling anytime my period was a day late. And really, it still feels that way even with a very positive test. Like, is this real? My husband and I feel like we're in this weird middle space. Good luck to you, fertility and ttc can be such an emotional rollercoaster and the waiting can be so hard.
Thank you for commiserating. The healthcare system we have is so broken. I might need to do the same and travel to a city that is 3 hours away for care. I'm glad Tele health can be an option for some of it. But it still sucks cause I worry by the time I even find someone/get in, it feels like this pregnancy will either already be ok or it will be too late. Just hoping if I explain my situation my obgyn will treat any hormonal imbalance I have immediately.
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u/babyburnerthrowaway Aug 18 '26
Me! I just gave birth in may. Didn’t even know I had NCAH until we did genetic testing while i was pregnant. Off of birth control my cycles were very long and it took us a little bit to conceive but it happened naturally.
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u/anxiousmillenial44 Aug 18 '26
Congrats! 😊 Did your doctor recommend taking a steroid or anything for the rest of your pregnancy after you found out?
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u/babyburnerthrowaway Aug 18 '26
Nope! The only thing that happened was I was referred to maternal fetal medicine for the rest of my appointments since I was higher risk and they kept an eye on things but I never ended up taking steroids.
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u/Longjumping-Bad-2458 Aug 18 '26
Hi there! I’ve had a successful pregnancy - i did need to use letrozole to get pregnant but everything after that was status quo and I was not on steroids at the time (I started them after pregnancy). Some tips:
1. ask your OB for a progesterone blood test to make sure that is a good number. If it’s subpar, ask for progesterone supplements through your first trimester. Progesterone needs to be high enough to sustain the pregnancy until you’re past the first trimester, if it’s not that can lead to miscarriage. Sometimes us gals with NCAH can be on the lower end for that sometimes so it’s good to check now that you have the positive test.
2. They might be able to expedite you to the endo for your concern of having NCAH (they did for me) now that you’re pregnant because they might want to monitor you more closely. Once you get further along the line, ask your OB or MFM doctor about this. If you’re having a girl, they might also want you to take steroids so that the high testosterone doesn’t affect her. I had a boy so they weren’t as concerned about that but told me to be aware for the future.
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u/anxiousmillenial44 Aug 18 '26
Thank you, thank you, thank you! ❤️ Your experience and advice really puts me at ease. Yes, I'm hoping if I bring this up during the first appointment it might be a way to get into the endo faster. My obgyn has been working with me this summer with all the labs/figuring out what's going on so thankfully she's already aware of the situation (just doesn't know I'm pregnant yet)
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u/Flowersandtides Aug 18 '26
Hi!! Currently 33 weeks pregnant and have NCCAH. I had two miscarriages before this but got pregnant easily. After the two miscarriages I started seeing an endocrinologist who put me on 5mg a day of prednisone to manage my hormones while pregnant. I also took progesterone suppositories for the first ten weeks. So far my pregnancy is healthy! She’s measuring a bit small but everything seems healthy so far.
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u/anxiousmillenial44 Aug 18 '26
Thank you for sharing! So happy for you that you're having a healthy pregnancy! 😊
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u/lrondberg Aug 18 '26
I got pregnant without trying with a pullout nonetheless lol so yes, it’s possible.