Pyroluria a million questions please help

Hi, Can anyone tell me where to begin. I believe i have pyroluria after looking at the test and i even have the longer second toe. have been suffering with these complaints for years. Although i have not found one dr. in my area that does this i was going to order the urine test. I have a question on to what other tests are needed? or do i just start there. My other question is for some reason my last iron test was a little on the high side but three months prior was not. Did not know if this had anything to do with this. If anyone can lead me in a good direction i would be so grateful.. Thanks a million..