Is it NCAH or PCOS?

Do you actually have NCAH and not PCOS?


A few weeks ago, I saw a patient who wanted help with facial hair growth and hair loss. She also had a bit of weight gain, and irregular periods.


This is all pretty normal, and sounds like a very normal PCOS case…..except she wasn’t.


During the consult I asked her about when she hit puberty, and something interesting came up.  She explained that she got her period rather late at 15, but starting growing pubic hair really early at about 8 years old.  


Ding, ding, ding- alarms started going off for me. This late periods but early pubic hair is one of the key signs of a condition that looks very similar to PCOS but is actually a genetic condition called Non-classic Congenital Adrenal Hyperplasia (NCAH).  


What is NCAH?


NCAH is a condition caused by a genetic mutation and results in your body over producing androgens (Testosterone and it’s friends DHEA-S and Androstendione).  Unlike PCOS, NCAH isn’t limited to females, but it’s less obvious in males because they already produce high amounts of androgens- so symptoms like facial and body hair is completely normal for them.


This increase in testosterone means that you:

  • Have an irregular period or it’s plain non-existent
  • You aren’t ovulating, so your eggs or follicles stay ‘stuck’ on the ovary and appear as ‘cysts’
  • This can result in infertility and
  • You might get facial hair, acne, hair loss or other symptoms associated with high androgens.


Sounds like PCOS right?  Exactly, but the difference is that the cause of the high androgens is entirely different.  In PCOS is a mixture of your genes interacting with the environment, whereas in NCAH, it’s a genetic mutation.  


So both have different treatments.


NCAH is also quite common common, research shows that up to 9% of us that overproduce testosterone actually have NCAH, but are misdiagnosed with PCOS as it looks so similar.  


How to differentiate NCAH from PCOS?


Unfortunately PCOS and NCAH look incredibly similar and there are a lot of misconceptions about it  which is partly to blame for the common misdiagnosis. Some common misconceptions are:


If you have NCAH you don’t have any insulin resistance.


If you have high levels of testosterone, you’re more likely to put weight on around the middle and also go on to develop insulin resistance.  In one study, they proved that women with NCAH are more likely to have insulin resistance than women without NCAH, even when they were the same weight.


You don’t have NCAH, unless you’re lean


Again, this is a complete misconception.  Insulin resistance is a rally common cause of weight gain, and as women with NCAH are likely to have insulin resistance, they are also likely to gain weight.  In a study of Classic Congenital Adrenal Hyperplasia (the sister condition), they found that they had increased abdominal weight gain, and in this study, 60% of women with PCOS were obese vs 50% of NCAH


While it’s likely that more ‘lean PCOS’ have NCAH, than obese PCOS, having weight-gain as a symptom is not enough to exclude you from having NCAH.


You don’t have NCAH if you have polycystic ovaries


Having multiple ‘cysts’ on your ovaries doesn’t mean that you have PCOS.  I put cysts in quote marks, as they are not actually cysts in PCOS, they are just baby eggs or follicles that stayed ‘stuck’ on your ovaries when you didn’t ovulate and that’s what appears as cysts.

As many women with NCAH also don’t ovulate, it’s not surprising that 50% have these ‘cysts’ on their ovaries too.


Common symptoms of NCAH


So how is NCAH diagnosed? As you can see it can’t be diagnosed by symptoms alone, but via blood test and is something that should be done with every woman during the diagnosis of PCOS.  I’ve created a download with the research papers which show the tests that your doctor should be doing to diagnose or exclude NCAH, including the reference ranges for those tests.


I’ve included some of the signs and symptoms below, for you to see if you identify with.  These can’t be used for diagnosis, and not having any of these doesn’t mean you don’t have NCAH, but if you do it’s worthwhile getting checked:


You had early pubic hair (around 8). The high androgens in NCAH often cause early hair growth, but they also disrupt periods leading to later onset of periods.  In one study, 90% of those with NCAH had premature hair growth.


You were tall as a child but short as an adult.  NCAH cause your skeleton to grow super fast in puberty, but then the bones fuse prematurely leading to being short as an adult


You don’t respond to other treatments for PCOS.

I recommend to women going through my 16 week program, The PCOS Protocol, that if they’ve gone through all the changes I’ve suggested and nothing has worked, then they should really get tested for NCAH


You have higher levels of DHEA-S

DHEA-S is another of the androgens- it’s like a brother-from-another-mother to testosterone.  It does the same things that testosterone does (acne, facial hair growth, hair loss etc), but it’s produced by the adrenal glands instead of the ovaries.

A study revealed that women with NCAH produce higher amounts of DHEA-S than woman with PCOS


You’re more than likely likely to be white (and possibly Jewish)

While studies on NCAH and ethnicity report different outcomes, they all show that have NCAH are are much more likely to be of ‘white’ ethnicity and also very likely to be Jewish.


You’re likely to get a regular period

One study found that only 14% of women with NCAH didn’t get a period compared to 90% of women with PCOS.


Just remember these are only some symptoms and the symptoms are so similar to PCOS that the only way to know for sure is to get your doctor to run the tests for NCAH.

Some more blogs you might be interested in

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  1. This is so interesting! I’m training to be a nutritionist and I’m trying to help my sister who has cycts on her ovaries and years of very similar symptoms that go with the condition but not sure it’s actually PCOS, she’s one of those not really taking an interest in her health/ listened to the Dr. If you have NCAH are you likely to have children? She’s had a few pregnancies and has one child, so wasn’t sure if that makes her an unlikely candidate for this? Thanks for all your interesting posts, I’m lapping them up!:)

  2. I was diagnosed with PCOS about 9-10years ago I didn’t think much of it at the time because I wasn’t have too much excess facial hair growth & didn’t want to get pregnant. However, now I’m 34 & would love to get pregnant & being that my symptoms got a lot worse I’m actively searching
    everyone for some help, answers, herbal fixes,etc. Currently I’m really suffering a complex due to hair loss, & not so much the amount but that it is not growing back nearly as fast as it falls out. I used to have so much hair now I’m at 1/3 of the hair I had 4-5 years ago also as of a year & a half ago the BC they put me on stopped working & I went from having absent periods to bleeding heavily for almost 2months at a time. Drs said my last option was the Mirena IUD which they inserted a year ago. I think this may be making my hair fall out even more rapidly with little grow back because it’s about half of what I had a year ago. It’s so depressing I’ve tried so many things a holistic Dr had me do a gut cleanse which greatly helped with some weightless & stomach issues. I do not have thyroid issues but I do have high testosterone & all other blood work is good. It’s so upsetting not knowing how to manage this and get my hair back, period normal without BC & hopefully get pregnant! It’s our dream and I’m getting older. Main focus is getting my hair back, even half, periods more normal & excess facial hair gone. Please help! I’ve tried all sorts of vitamins my OBGYN said use rogaine for my hair there has to be another way.

  3. Cm hospital Fertility Centre in Chennai briefs you out about the pcos and lets you with the specialized treatment from the best gynecologist these would help you to contour the issues that you are about to have as the causes over these syndrome.

  4. I feel like I’m really an intersex person misdiagnosed with pcos. I’m not sure whether its because doctors here in the Philippines aren’t aware of ncah or just don’t know how to deal with it. I have been to four gynecologists who all diagnosed me with pcos. I was recommended birth control pills and metformin (though my insulin levels are normal) but problem is my body isn’t responding to it. My case is I started my period when I was 10 but my pubic hair showed up when I was 8-9 yrs old. Moreover I never felt that I’m a female. I recall as a kid that I’m physically stronger than my female classmates, been bullied at school especially by my male classmates all questioning my sexuality and I was and still always pressured to act feminine or lady like. I can grow a beard, have coarse hair on my chest and abdomen. As far as ethnicity, apart from Asian I also have Hispanic/Mediterranean and Jewish ancestry.

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