NCCAH

relax&smile2

I am 12.5 weeks and was just diagnosed with NCCAH (non classic congenital adrenal hyperplasia). My doctor and Endocronologist recommend starting hydrocortisone (steroroid) tomorrow. Anyone else have NCCAH?

snikai

I'm sorry your going through that. Glad to hear your OB is in top of it though! I've never heard of this issue before!

relax&smile2

It is not something commonly tested for unless you go to a specialist, I have PCOS. The doctor believes this may be why I had difficulty getting pregnant. My brain is producing too much testosterone. I was just wondering if anyone else is dealing with this, and if so what they are doing to make sure I am not missing anything.

mill1020

Sorry to hear you're having to deal with this.  I don't have that but I have another endocrine issue, so I can sympathize.  The good news is that the doctors are aware and able to do things to treat you, and it's not life-threatening (as far as I've read just now, googling it--please correct me if I'm wrong).  Maybe you'll even get more monitoring (and more ultrasounds) out of the deal, which can be kind of neat.  Best of luck.

babynum1rr

I actually have it. I found out in September after my obgyn did some blood test to check hormones because I'd go months without a period. Once I was diagnosed they placed me on prednisone 2.5 MG to get my hormones under control. They checked my levels a month later and they were dropping but not enough. They brought my dose up to 5mg hoping it would take care of the problem and bring the levels to normal. The next appt I had was Dec 15th, it was a big one for my SO and I because it was when we found out if my levels had dropped and if we would ever be able to conceive and if so, when we could start trying. The doctor gave us the best news ever and said that my levels were within normal range and we should have no problem getting pregnant or carrying a baby to full term. It just so happened that 4 days later, we conceived! Since I suffer a non classical form, I was told I do not need to be on meds during pregnancy because my body will balance itself out now. I've done quite a bit research and I've even seen a maternal fetal doctor who gave me an all clear for my pregnancy and said I should have no problems. If you have any questions, you can feel free to ask me not sure if I can help, but I can try! You can PM me if you'd like also! Sorry this is so long

WDDCH

ftmsept142015 said:

It is not something commonly tested for unless you go to a specialist, I have PCOS. The doctor believes this may be why I had difficulty getting pregnant. My brain is producing too much testosterone. I was just wondering if anyone else is dealing with this, and if so what they are doing to make sure I am not missing anything.

I have PCOS with high testosterone. I'm not a doctor but it doesn't seem to make sense in my head that they'd give your steroids when you already produce more testosterone than a typical female. I've never heard of NCCAH - is that different from PCOS or a type of it?

The only thing I've done is take progesterone during the first trimester because I don't produce enough before the placenta takes over in trimester 2.

There's a lot out there I'm not sure about in regards to hormones and I can only share my experience.

babynum1rr

NCCAH is different from PCOS. I'm having a little pregnancy brain right now and can't seem to remember exactly how my endocrinologist explained the steroids work. But they definitely did! I believe when you have NCCAH your body fails to make another hormone like 17 hydroxy progesterone (there's a 21 derivative also) and then produces too much testosterone. It also plays a role in your bodys way of producing cortisol, your body's stress hormone. Somehow the steroids replace the cortisol and allow the other hormones to come into balance. Don't quote me on any of this stuff because it's a lot to take in, but I believe that is how it works. It's a tricky process and it took some time for me to understand it fully and I'm still learning

Edited for spelling, darn autocorrect

WDDCH

Thank you for clarifying @babynum1rr - I really appreciate you taking time to explain! So goodness, makes me wonder if I should revisit my hormone testing because I CANNOT lose weight (obviously I can't now but when not pregnant I can't shed it) and I wonder if my cortisol is all messed up, which I hear causes increased weight when not in balance. Okay not going to hijack the thread, just thinking out loud to myself. OP I truly hope your little one sticks and that the meds help.

babynum1rr

You're welcome! @WDDCH I have struggled with my weight for a long time and being put on steroids definitely didn't help! Hope you can figure it soon

relax&smile2

Thank you everybody for the feedback. I started hydrocortisone today. I am taking 10mg when I wake up and 5mg before dinner. After a week they will retest my testosterone level to make sure it is dropping just enough. The reason they said I need to take the steroroids while pregnant is A) My body is not producing cortisol which impacts how my body handles stress. So when I go into the labor they said they are actually going to increase my steroroids to ensure my heart doesn't stop from the stress labor will be putting on my body. If I am having a girl, they worry that I am passing on too much testosterone to her which could cause ambiguous genitalia. The steroroids should reduce the amount of testosterone I am passing on to my baby. I took the Harmony test and should find out the gender sometime next week. I am by no means a doctor and was just diagnosed this week so I apologize if any of the above is incorrect, this is just my understanding of it.

From what I have read, worst case scenario my baby has a very small chance of CAH (although somehow I keep ending up on the wrong side of the odds) and CAH is not fatal. Kids with CAH can grow and develop perfectly normal, they just would need medication their entire life.

I was diagnosed by a specialist with PCOS. Based on an elevated 17 alpha hydroxy blood test and elevated testosterone, they recommended going to a geneticist to see if I am a carrier of NCCAH. From my reading, NCCAH has many of the same symptoms as PCOS, 10% of people with PCOS have it.

I am also trying to make an appointment to have my husband tested to see if he is a carrier.

Please let me know if anyone has any additional information or are doing something different to manage during pregnancy. As I said, I was just diagnosed this week and am 12.5 weeks pregnant so it caused quite a panic....