Yes ordinarily your doctor should have tested for potential salt loss but it looks like he didn’t test for much at all! Perhaps he didn’t forward to you the normal test results only the abnormal - is that possible?

When testing your son the doctor should have ordered a Plasma Renin test also to assess how well he is holding his salt. Plasma Renin is a more subtle assessment of salt retention capacity than checking electrolytes. So whereas electrolytes test (eg. Sodium) may look good, Plasma Renin levels can be elevated.

All CAH people have salt retention problems to various degrees. Many SVCAH people need florinef as their Plasma Renins are quite elevated. SV is Classical CAH with only about 2 - 7% enzyme function. It is very possible and even usual for an SV male to be diagnosed later...but as you have said not without a whole history of other problems which seems to be a common story in untreated CAH. It is obvious the poor little fellow has been chugging along with an abysmal cortisol level which has contributed to all these other issues.

I have read dozens of cortisol levels (pre and post stimulation) in NCCAH people and I don’t believe I have ever seen one that low....so I dare to stick by my neck out and say that I reckon they may find that he does not have NCCAH but a Classical form! It would also help to have known what his 17-ohp level was before starting treatment. Baseline and post stimulation 17-ohp is a very good indicator of severity.