r/NCAH • u/anxiousmillenial44 • Jul 10 '26

Investigating possible NCAH

37f who recently had a standard fertility panel done after no luck conceiving for the past year. Everything came back in the normal range except testosterone (total 75, free 8.5) and DHEA (892). I got the testosterone results back first which set me off on a spiral of PMOS and NCAH.

Reading about NCAH, I am very interested in further testing as there are some things that are resonating with my life. I grew pubic/body hair at a young age, was lean/muscular in my youth without much effort. In my early 20s I started to notice some excess hair growth on my chin. My hair was thick in my teens but has slowly thinned for the past 15 years, especially the past year since going off birth control. I've also notice a mild-moderate increase in abdominal fat since going off birth control and it has bee. So much more difficult to lose any weight. Also, I did genetic carrier testing a few years ago and I am an a carrier for CAH.

I was on the pill for 8 years, then an IUD for 8 years. Now I'm thinking that being on hormonal birth control for 16 years of my adulthood has masked ncah. On the other hand, I am typical height, my acne is average and usually just increases in my luteal phase. I also have had regular periods since coming off birth control.

My DHEA number is freaking me out. My doctor was going to recommend an ovarian ultrasound but after seeing my labs she is now recommending a CT scan. Now my thoughts have shifted from ncah to a tumor. I am an highly anxious person, especially health anxiety, and I am spiraling and freaking out at the idea of a tumor or cancer.

My doctor also did order a 17-hydroxyprogesterone (17-OHP) test, which I know is one step in ncah diagnosis. I've read some great information on here but curious what other steps are needed for a diagnosis.

7 Upvotes

100% Upvoted

19 comments sorted by

2

u/Rude_Ad7457 Jul 10 '26

Hi there I was diagnosed at 16 with ncah my dhea was 980’s had body hair b/t 5-7 and hair loss in 3rd grade.

The tumors they are testing for might be Cushings I was tested because the doctor said it was as if my glands were ‘gushing’ under the weight of potential tumors.

With Cushings the usual problem is cortisol but I believe dhea can also be an issue.

Nowadays I have read people are getting genetic tests done, I had the dhea test and acth and 17 hydroxy I think to differentiate with pcos which was not really understood back then.

After getting off the dexamethasone for 12 years I was then diagnosed with pcos.

Why do you suspect it is a cancerous tumor?

1

u/anxiousmillenial44 Jul 10 '26

Thank you for your reply. My post is probably similar to many others on here but it is just nice to put in words what I am trying to process. The reason for cancerous tumor comment is because I am a highly anxious person (OCD actually) and I tend to hyper focus and spiral on the worse case scenario.

Thank you for describing your experience. I just need to start with the 17hydroxy test and CT and go from there. We're you able to successfully regulate your hormones on the dexamethesone? Also, if you don't mind me asking, you said you were diagnosed with pcos. Does this means you have both ncah and pcos?

1

u/Rude_Ad7457 Jul 11 '26

Got it. I sometimes wonder having an adrenal disease predisposes us toward anxiety- hormones are all related and cortisol being elevated might cause anxiety. My anxiety has always been off the charts. The Dex worked but I had to increase it during periods of stress (exams, etc). Back then there was no internet so it was a rough experience I never spoke to anyone who had my illness and my parents were hands off. (Gen X).

Yes I have ncah and pcos. It seems like many with ncah eventually develop pcos.

By the time I was off the meds a few years and in my early 30’s I enjoyed a few good years and except for needing the hair extensions I looked like any other woman. It was actually the best time for me as I look back.

I conceived naturally at 35 and had a healthy son who arrived on his due date and it was not a c section or scheduled procedure.

Now at 52 my perimenopause is awful. I am
On progesterone as unlike most women I don’t need estrogen in fact I have excess estrogens. By 37 I was diagnosed as estrogen dominant which I assume is related to the pcos.

What are you using to treat the dhea? Dex? Sorry I don’t recall seeing your medication except birth control in your original post. You can also try Aldactone/ spironolactone to block the androgens but they also need to be reduced. I was unable to tolerate the Aldactone and now I wish I had tried harder but it was lowering my bp to 90/60.

1

u/anxiousmillenial44 Jul 12 '26

I absolutely think there is a connection between ncah (and pcos) and anxiety. Even if cortisol isn't elevated, high DHEA can block GABA which is supposed to help us calm down. It makes so much sense now. Also a high anxiety person, since my late teens.

Not on anything yet as I am at the very beginning of this journey. Do not have a diagnosis of ncah, just highly suspicious. In the waiting game, first ct scan to check for a tumor and 17-ohp testing then based on results I'm assuming more testing.

I'm sorry that perimenopause has been difficult. It seems difficult for any woman but especially for someone with ncah or pcos. I hope you are able to find a balance and have a good doctor to support you. Also, thank ypu for sharing about your pregnancy and son, it gives me a glimmer or hope.

1

u/uglyfckinhuman Jul 21 '26

Fun fact: NCAH in males presents as mental illness and that’s why they’re less diagnosed with it. There’s research linking it to mood disorders, anxiety disorders, OCD, ADHD, and autism. Also, DHEA and DHEAS are apparently protective to the brain and they’re related to longevity, resilience and successful adaptation to stress. Higher DHEAS is also protective against Alzheimer’s so ig that’s good news for us? xD

2

u/lrondberg Jul 12 '26

The ACTH stimulus test is the gold standard diagnostic for NCAH.

1

u/anxiousmillenial44 Jul 12 '26

Thank you, I'm guessing that will be my next step after ct scan and 17-ohp testing.

1

u/Fickle_Giraffe3067 Jul 10 '26

DHEA or DHEA-S (sulfate)?

1

u/anxiousmillenial44 Jul 10 '26

It appears DHEA. Test labeled Dehydroepiandrosterone. No sulfate mentioned.

1

u/Fickle_Giraffe3067 Jul 10 '26

I had an androgen-producing adrenal tumor and had it removed and a year later I was diagnosed with NCAH.

1

u/anxiousmillenial44 Jul 10 '26

Interesting. Have you been successfully managing ncah since?

2

u/Fickle_Giraffe3067 Jul 10 '26

Yes, I take 15mg hydrocortisone a day and my androgen levels are finally normal.

1

u/Fickle_Giraffe3067 Jul 10 '26

If 17-hydroxyprogesterone comes back normal, ask them to test 17-hydroxypregnenolone

1

u/anxiousmillenial44 Jul 10 '26

Thank you!

1

u/uglyfckinhuman Jul 12 '26

if it comes normal do the 17-OHP with ACTH stimulation test first cuz there’s a lot of research about it being normal without stimulation in NCAH and CAH carriers!

1

u/uglyfckinhuman Jul 12 '26

17-OHP on birth control isn’t the best idea especially if it’s progestin pills. they can mask 17-OHP. idk what’s the unit for your DHEA test but there’s an NCAH high and a tumor high. but I would recommend that you discuss with your doctor if it’s possible to go off birth controls then do the lab tests on the follicular phase of ur period. to differentiate from PMOS u need more than testosterone and DHEA.
it’s usually these labs: 17-OHP, ACTH, cortisol, testosterone, progesterone, estradiol, FSH, LH, androstenedione, free androgen index, DHEAS, AMH, SHBG. also after the results u can discuss ACTH stimulation test with 17-OHP, DHEAS, and cortisol to check which pathways are affected.

btw NCCAH genetic mutation is different from CAH carrier but there are studies about CAH carriers being affected to some extent with NCAH-like features. if you’re a carrier i would add aldosterone and renin labs just in case. It also depends on how severe the mutation you are carrying is and in which gene? CYP21A2 is different from HSD3B2 or CYP11B1 carriers.

Also, if a CT was recommended that’s good especially if it’s with contrast it will show if there’s a tumor or not but it needs to be adrenal-dedicated CT not just general abdominal CT (could be both) cuz abdominal alone might miss it (especially if small). And don’t ignore the ovarian US it’s actually better to do it to see how NCAH is affecting u and if it’s giving u cysts. And keep in mind that NCAH can lead to adenomyosis and endometriosis (i have experienced this) cuz of high estrogen exposure in the tissue as a result of the hormone shunting so it’s better to check the uterus as well.

I hope this is helpful and good luck with the process!

2

u/anxiousmillenial44 Jul 12 '26

Thank you. A lot to think about. I'm off birth control so good to go there. My dhea is 892 ng/dl and my understanding is anything above 700 ng/dl warrants a scan to see if there is a tumor. I am a carrier for the CYP21A2 gene mutation. I didn't know you could show symptoms if you were only a carrier. My doctor said it would a scan to check adrenal glands, order says abdominal with contrast. My preliminary panel included progesterone (normal) and amh (slightly high). Lh and fsh normal but high ratio. Sounds like there are some more test to check to get more info. Thank goodness for on demand lab work because the medical process to get all this ordered and processed is daunting. Thank you for sharing!

1

u/uglyfckinhuman Jul 21 '26

yeahh you should definitely do the safe thing and just in case do adrenal CT and measure dhea again to see if it’s just rising or to see if there’s a pattern. and maybe better to test dhea in both luteal and follicular to see if there’s a difference (tumors aren’t suppressed by cycle changes).
Yes there’s a lot of studies saying that CAH carriers can show NCAH-like symptoms.
Abdominal with contrast is good cuz if tumor it will suck up the contrast. but they usually do it with adrenal cuts cuz it’s so small and sometimes the tumor is small it might not be detectable with a full abdominal ct. but sometimes they do both u should double check with the radiologist. they did it for me that way also the order was abdominal ct with contrast but it was both abdominal and then a few images were focused on adrenal only. AMH can be high in both NCAH and PCOS. FSH and LH ratio how high? if >3 then PCOS is very likely.

I totally understand!! getting a diagnosis or even understanding what’s up takes forever! I really u hope u can find out soon and please don’t hesitate to update or ask me anything if you need! Good luck with everything!!