Hello all,
I’m a 21 year old beta thalassemia major patient living in Michigan being treated at the U of M. I get transfused every 2 weeks and get 2 units of blood (every transfusion varies how much mL of blood I get but the average is about 650 mL). I had siblings and cousins who were diagnosed with thalassemia as well, but were fortunate enough to have siblings who were matched with them. I don’t know any beta thal. major patients other than myself and I’ve never had an idea of what a normal, or ideal, range of Hb and ferritin should be. My pre-transfusion Hb last time was 7.9 and I usually hover around the 8 Hb range right before a transfusion. My ferritin currently is at about 3200. I have always been around these ranges for as long as I can remember... I currently take 1,800 mg of Jadenu a day along with 60mL of desferal 5 days a week. Are counts like these normal or is there more I can do or should be doing less? Thank you all and everybody stay strong <3