Do you actually have NCAH and not PCOS?
By Clare Goodwin
Last updated: September 3, 2020
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 Androstenedione). 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 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 to be white (and possibly 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.