Hi Caroline,

I am sorry for the problems you are having. The dex:hydro conversion issue is a tricky one. I think you are right to feel that your current problems may be partly due to the fact that you are not being given the right dose of hydrocortisone, relative to your old dose of dex. The same type of thing happened to my son many years ago when he was switched from dex to hydro...the conversion was erroneously calculated and it wreaked havoc with his system.

Couple of things:

1. Long, long story but .625 mg of dex is actually more like 50 mg of hydrocortisone, not 18 mg of hydrocortisone. (This doesnt necessarily mean that 50 mg of hydro --or 0.625 mg of dex, for that matter--is what you should be taking. More than likely, that dose was probably too high, to begin with.)

2. Basically, you went from taking a dose that was equivalent to about 50 mg of hydrocortisone, to 30 mg of hydrocortisone...i.e. you cut your dose by almost HALF in one fell swoop. I would be willing to bet that the sudden dose reduction is partly what is making you feel so poorly.

3. You may very well end up on a dose of hydrocortisone, somewhere between 20-30 mg. However, to get there from your old dex dose of 0.625 mg, it would probably have been better to wean down more slowly, in order to avoid the type of symptoms you are describing.

Unfortunately, dose equivalencies are not at all a straightforward issue when talking about treatment of CAH. I feel, as you do, that incorrect equivalencies may partially be responsible for what you are going through presently. However, in my opinion, it’s not because you are taking too MUCH hydro right now...it could be because you are taking too little, too soon.