You have to remember that your typical ER doctor isn’t all that well versed in the myriad orphan diseases out there, so his opinion would be based on very limited information.

For example about 10 years ago I went to the doctor with chest pains, and he diagnosed it as acid reflux, and prescribed anti-biotics to fend off the H. Pylori bacteria. I got better, so we assumed that was it. But, he did no tests to confirm his diagnosis, only treated what he guessed was the problem.

Ten years later, the chest pains return, grow worse. But this time we have insurance, so there’s no hesitation to delve deeper, and it turns out I had gall stones, and as it turned out a severely deteriorated gall bladder that was beginning to cause my liver to malfunction.

My point is, one opinion but one doctor, out of his specialty, shouldn’t be taken all that seriously. Get it confirmed by a doctor who actually knows the condition.

High potassium could be caused by bad kidneys. But with the presence of CAH, you have another direct cause for it--undermedication--which makes much more sense. Frankly, to tell someone with CAH that high potassium might mean kidney failure makes about as much sense as telling someone who just lost their legs in a traffic accident that their loss of stature could be caused by osteoporosis.