Hello out there. I have this illness and would like to hear from others with same. As the disease is rare, I have never met anyone with it and my current endocrinologist has heard of it, but never had a patient with this. I would like to hear from anyone with this illness and what kind of symptoms they experienced, how their medical treatment is going, if they experienced symptoms and then sought medical attention, etc.
I was diagnosed January 2003, but had been experiencing increasingly severe symptoms for about 3 years. When I began to have migraines several times a week, and could not make it to the bathroom in tiime -- well, time to see the doctor. But, my first endocrinologist said that he had just treated a patient with P.H., and she had not been having any symptoms, just passed out and was taken to the hospital and discovered to have an abnormally low potassium.
Okay, just a note. I hope to hear from someone.