Caroline,

I can completely relate to your feeling like this should be a simple issue...so why isn’t it??? When we encountered this 6 years ago, I felt a bit like I was in the twilight zone....all these different people were giving me completely different answers, and all sounding very sure of themselves. Not only that, they were all able to pull out different charts and tables to support what they were saying...the problem was, each chart said something different!

Again, it would take way too long to go into all the reasons why they are all right...yet all wrong, too! Suffice to say, I am willing to bet it is the conversion problem that is making you feel sick, at the moment. It is good that you are starting to feel a bit better on this dose....your body is probably starting to adjust a bit to the sudden drop in dose.

The saddest thing to me about this dose conversion issue is that the information has been available since the 1950’s! Lawson Wilkins, the "father" of pediatric endocrinology wrote about the 80:1 dex to hydro comparable potency well over half a century ago. Since then, a number of other doctors have, too. Yet, the same misinformation keeps being re-circulated. In my opinion, it is truly a shame, because it is a problem that is easily preventable.

Do you have a copy of CAH: A Parents’ Guide? If so, this issue is discussed on page 97. (The dex to hydro conversion for CAH). Also, on pages 104 and 105 in the FAQ section.

To answer your question about why no one is ever on 50 mg of hydro (if 0.625 mg of dex = 50 mg of hydro): In my opinion, 0.625 was probably too high a dose to begin with (based on what you have said about side effects.) I am not suggesting that you STAY on 50 mg of hydro...I am merely trying to point out that your feeling sick might have to do with not reducing dose more gradually. In essence, you went from 0.625 of dex to the equivalent of 0.3 mg of dex in one fell swoop...that probably would have caused you problems, too.

As for "normal" blood results on that dose of dex: I agree with Toni..."Normal" probably meant "as compared to people without CAH." Unfortunately, that often spells over-suppression for someone with CAH. Also, I know it doesn’t sound logical, but it is completely possible to achieve similar blood test results on widely different doses of medication...even when you are talking about the same person. (But, that is a whole other topic and can of worms!)