Thanks for your reply Andy!
I have had extensive testing of my stomach and intestines to rule out internal bleeding. They found scarring consistent with prior ulcer disease. Based on my last bone marrow test, one possible reason for the severity of my symptoms is chronic inflamation.
When I spoke with Dr. Giardina about testing to look for more specific alpha thal mutations or deletions, she told me that the number of variations is huge and that my treatment would probably be the same regardless: ongoing blood transfusions.
I agree that chelation makes sense at this point, along with stopping the iron altogether. The packed and irradiated (I think that's what they're called) red blood cells work for two, and sometimes three weeks. The vitamins and drinking tea/coffee seem to help. (I take folic acid also) After so many transfusions of iron and blood, I am actually suprised that the liver iron concentration isn't higher!