In the past I have always been seen by a medical geneticist who specializes in metabolic disorders. I know a few people in Australia who have said they are seen by endocrinologist, BUT they have told me that this specialization really has nothing to do with PKU and therefore their doctors do not have the necessary knowledge to properly treat PKU.
I researched more in-depth (I should've done this first) and found that endocrinologists do not specialize in PKU. They study diseases and disorders of the metabolic system as part of their job, but apparently PKU is a genetic disorder more than anything, and not a metabolic one. I am not the type of person who would study genetics, but a dietitian was my second career choice and I think they would study PKU more than an endocrinologist would.
Don't quote me on this, but if you get a bachelors in dietetics I think you can then go back to get a masters in dietetics specializing in metabolics.
I am currently studying nursing and later I may go back to school to get a masters in metabolic dietetics. My dietitian told me that today it is becoming more common for PKU patients to be seen by an RN that specializes in metabolics rather than the actual doctor…but most patients are still seen by a metabolic dietitian as well.
I know that in my area there is an endocrinologist and a dietician that tried working with a family here but after talking to the mother of the PKU'er she told me that they really did'nt know enought about it to properly treat her children. She said they really tried but in the end she was uncomfortable in this situation and knew that her children's health was worth a 6 hour drive to go a metabolic doctor with a specialty in PKU. So we also made that decision to make that drive and to argue with insurance constantly just to get the doctor visit covered because they consider the Dr. out of network. Well duh I know that why would I travel that far for a doctor visit unless it was totally necessary. Insurance people have no compassion or concern for anyone. Our children's health is way too important to mess around with or to put a price on. Hope all of you are doing well.