CAH always expresses itself as the least severe form inherited. Now that I’ve said that, let me attempt to clarify.   My husband and I have a SWCAH daughter as well, so I’ll use us as an example. <grin> And remember 2 alleles = 1 gene

I am a carrier of SWCAH. So I have 1 allele that codes for the enzyme 21 hydroxylase , and 1 allele that does not. So through that one allele that codes normally, I get enough 21 hydroxylase to function normally (altho if you took hormone profile of me, they’d be a little different from the norm cause I dont produce as much as 21 hydroxylase as someone without any mutations)

My husband is also a carrier of SWCAH, but his mutant allele is different from mine- there are tons of different mutations differing in severity as Lynn said.

So our daughter just happened to inherit the allele that didnt code for 21 hydroxylase production from my husband and I and consquentially has SWCAH.

Now in NCCAH a person has an allele that codes a little for 21 hydroxylase production and another allele that codes for no 21 hydoxylase production. So these people have some enzyme action, so they’ll produce some cortisol- which is a ton more than our SWCAH kids do!

So I wouldnt worry too much about carrying the NCCAH gene unless you or your husband exhibit symptoms of NCCAH. As for the genetic testing, my husband and I had it done so when we decide to have more kids the people doing the genetic testing already know what mutant alleles we carry. Therefore they would be better able to diagnose the baby through CVS to see if we needed to continue dex and what the plan of action would be once the baby was born. Last of all, some alleles are associated with salt wasting more than others. A lot of kids with CAH are usually just assumed to have the SW type cause docs dont want to risk taking them off flourinef. So, for example if your daughter was suffering from high blood pressure and hypertension and genetic tests revealed that perhaps her mutations arent associated with SW, you’d have a more sound reason to take her off flourinef.

Hope this helped- good luck with the endo!

Martha