(Apologies in advance for formatting issues, I’m on mobile). I was diagnosed recently with alpha thalassemia It was a great relief to receive that diagnoses because things have never made sense in the time I’ve been getting bloodwork done as an adult (wasn’t able to receive regular medical care as a child, have no access to what medical records there were due to religious reasons on my parent’s part). I have a lot of health problems and get bloodwork frequently so it is a constant worry. I am so grateful to know and not be confused or anxious anymore. The thing is, the discovery was made on accident and investigated by a specialist that took great concern that no one else was looking into it and had a hunch. He doesn’t treat blood disorders and had no other instructions for me other than to avoid iron supplements unless my ferritin specifically was tested.

I have an appointment with my PCP soon and plan to bring this up. What questions do I need to be asking? Is it absolutely necessary to see a hematologist? I’m so reluctant to go to one because they are often based in oncology units (at least in my town), and my father recently died of cancer and I’m not prepared to walk into an oncology center for a very long time. Apart from questions to ask my doctor, or advice on hematologists, is there any nutrition or lifestyle advice anyone has?