Hi Momoffour,

Unfortunately, "good" is such a subjective term and can mean something completely different to different people. Perhaps it would be helpful to ask your endo what your son’s actual lab numbers are and how they stack up against today’s generally accepted standards of "good" control. Endos today seem to keep their patients in much looser control than in years past, meaning medication doses are generally much lower than before.

Though a too high dose of glucocorticoid medication can cause high bp if you have 21-oh deficiency, bp is usually a reflection of the adequacy of mineralocorticoid (salt and Florinef) replacement. If your son’s bp is very high, you might ask your endo about reducing the Florinef dose, as that would seem like a natural thing to try.

If all other avenues have been exhausted and you are still wondering about 11-oh deficiency, then you could ask him to test for hormones associated with 11-oh deficiency, such as DOC and 11-deoxycortisol, though depending on how your son was diagnosed, it is very possible that those tests have already been run and 11-oh deficiency ruled out. As Cindi said, blood testing is usually the way this is diagnosed, though it may also be possible to test via urine. However, you would then test for the by-produts of DOC and deoxycortisol, which would have different names...unfortunately, I have no idea what they are. (But, bloodtesting is probably the most accepted way to make this sort of diagnosis, anyway.)

Best,
Carol