Hi Jayne,

WOW...so you were taking 6 Florinef tabs at one time???!!!! That is a HIGH, HIGH dose...in fact, I have never heard of anyone taking anywhere close to that amount! As I siad earlier, I bet it was the high amounts of Florinef that caused your potassium levels to plummet, prompting your doctor to prescribe the potassium supplements. So....instead of trying to fix the first problem, he just added more medications, thereby possibly causing even MORE problems. This is what I meant by being caught in a vicious cycle!

Both too high OR too low levels of potassium can cause heart problems.....in fact, one of the roles of potassium is to maintain normal heart function. It is difficult to say whether your heart issues now may have been due to low potassium caused by mega-doses of Florinef, or high potassium levels due to taking supplements and having CAH. Either way, I feel strongly that your medications and doctor’s approach to CAH treatment have contributed to your current problems....the tricky part now is how to fix things, since there may have been irreparable damage.

I am sorry that you have so few choices of endos, but I think your idea to look for a new doctor is a good one. Besides questionable medical judgment, it is unconscionable that your current doctor would tell someone with the problems that you have described (and the hospital records to prove it!!!) that it is "all in their head!" Perhaps you can ask the Aussie support group for some suggestions about a new MD.

Good luck to you...I admire your positive outlook and strong spirit in the face of adversity!

TC, Carol

Also...though heart problems are more affected by the Florinef/potassium issues, your dex dose ( a total of 1.0 mg/day) also sounds very, very high. I would ask your doctor about that, as well!