Laura KRoberta, Minoo and Carol have given you good information about ways to determine carrier status. There are benefits to each of the methods.
My children both have CAH. I opted for the ACTH Stimulation test over genetic testing (for myself) for the following reasons. 1) We will not have any more children so the exact identification of my mutations wasn’t important for managing future pregnancies. 2) My doctor was concerned with exactly what was happening in my body at that time, and genetic testing wouldn’t give us that information. The same mutation will manifest itself differently in different people. 3) Some mutations are not detectible with genetic testing. False negatives have been reported several times on this board.
A combination of the two methods is the best of both worlds. The ACTH Stimulation test involves an injection, but you’ll know exactly what your body did with that stimulation. Your endo will plot your results on a nomogram with test data to see where you fall. If the results indicate that you are either affected (2 mutations) or a carrier (1 mutation, 1 normal), and if you are planning on parenthood, you may want to have genetic testing done.
My personal experience with the ACTH Stimulation was not too bad. I felt a serious rush soon after the injection (like WAY too much coffee), and a few hours later I felt very tired. My results fell neatly into the carrier range, so our questions were answered.
My initial reaction to the comment “growing out of it” was disgust for the doctor that said it. The concept of a re-mutation of the affected gene sounds like my fondest dream come true, but I fear it is ridiculously unlikely. Some carriers do report symptoms at various times in their lives. Some mild LOCAH (or Nonclassical) patients do well on no meds. Perhaps this is what your doctor was referring to. There is a tremendous lack of understanding of CAH in the medical community. Please investigate your doctor’s experience with CAH. Good luck.