Hi Bebe,

Just to avoid confusion or misunderstanding, I think we are talking about treatment for two separate purposes here, right?  1) Taking large doses of dex as prenatal treatment to prevent possible virilization in the baby, if she happens to have CAH and 2) Taking a normal, smaller dose of dex or some other glucocorticoid, in order to treat your own CAH.

Re. #1:

I think it’s terrible the high risk ob is making you feel guilty about not taking the dex.  He/she must not understand the difference between 3-beta cah, and 21-oh or 11-oh cah.  Perhaps you can simply explain to them that the purpose of prenatal dex treatment is to keep a baby from over-producing testosterone in the womb.  Even if your baby had CAH, s/he would not be over-producing testosterone, since s/he would have the 3-beta kind, like you do...and 3-betas UNDER-produce testosterone.  If there is no excess testosterone being produced, then there is nothing to treat, right? 

I think I understand your concern about your OWN testosterone being on the highish side, and having it somehow affect the baby. If you have confirmed 3-beta deficiency, and confirmed PCOS, then probably your highish testosterone numbers are from the PCOS, is my guess, NOT from your adrenal glands. At any rate, remember that prenatal dex treatment is for the purpose of suppressing the BABY’s adrenal glands. It is what the BABY produces that will cause virilization to happen, if at all, not what the MOTHER produces.  If YOU have high testosterone levels, but your baby does not, the baby would not have virilized genitalia.

Re. #2:

As for whether or not you will need treatment for your own CAH during this time, that I really couldn’t say.  3-beta deficiency can also result in salt-wasting, but obviously you are not a salt-waster, since I think you said you were just diagnosed very recently.  I think the indication to treat with very mild 3-beta locah (which appears to be what you have), much like with very mild 21-oh locah, is how you feel, what your lab tests say, and whether or not you are symptomatic.  

Treating the CAH, in your situation, is complicated by the fact that you are pregnant.  With "normal" pregnancies, mothers are always cautioned about taking any drugs that can cross the placenta and affect the baby.  Prenatal dex treatment, to prevent virilization in a CAH baby, is based on exactly that principle, of course, except that the mother PURPOSEFULLY takes a drug that crosses the placenta to affect the baby.  Your situation, however, would be more like a "normal" pregnancy, since you don’t have to worry about your baby being virilized. 

If you had a more severe form of CAH, then you would have no choice about continuing treatment for yourself, even during the course of your pregnancy.  But, since you don’t, it is probably somewhat of a judgment call, which is riskier---taking drugs during your pregnancy, or not.  Because dex crosses the placenta, any dex that you take during pregnancy to treat your own CAH would also get to the baby, something you may not want. At the very least, I think I would talk to your endo about temporarily switching to something like hydrocortisone, for the duration of your pregnancy.  Hydrocortisone does not cross the placenta, in the same way that dex does, so even if you found that your own CAH needs to be treated,  the drug effects on your baby should be minimized.

Hope this all makes sense....good luck!