intravenous iron (WEDF webinar)
Posted: Mon Jun 17, 2013 7:05 am
Has anyone commented on the recent webinar on iron treatment that the WED Foundation hosted? It was enlightening. Jim O'Connor is fantastic, he has uncovered bits and pieces of how iron is messed up in WED brains and is so keen it was exhilarating to listen to him.
Dr. Earley talked about treatment. I was surprised to learn that ferritin can range up to 300 ng/ml without being regarded as abnormally high, and that he would not hesitate to treat a WED patient with intravenous iron if their ferritin was 200 or less. It was sad to hear that he finds most hematologists (the type of physician that normally gives iron infusions) won't leave their comfort zones to learn about the possible benefits of iron infusions for WED, even when he personally sends them the research and detailed notes on how to proceed.
But that said, it might be something to look into for some of us. When a certain type of iron is used in a certain way, over half the patients have significant improvement of symptoms or even remission, lasting from weeks to months (the rest of the patients don't seem to benefit at all, and no one can predict yet who will benefit and who won't). The method as I understand it is this (bare bones): use low-molecular-weight iron eg. iron dextran, first infusion 1000 mg, repeat when symptoms return but measure ferritin first and use that as a baseline for that patient, the goal being to keep his/her ferritin above the baseline. The baseline for each patient is different (so your "normal" and my "normal" and the dude next door's "normal" could be 250 and 120 and 20, and we'd all be "normal").
Dr. Earley talked about treatment. I was surprised to learn that ferritin can range up to 300 ng/ml without being regarded as abnormally high, and that he would not hesitate to treat a WED patient with intravenous iron if their ferritin was 200 or less. It was sad to hear that he finds most hematologists (the type of physician that normally gives iron infusions) won't leave their comfort zones to learn about the possible benefits of iron infusions for WED, even when he personally sends them the research and detailed notes on how to proceed.
But that said, it might be something to look into for some of us. When a certain type of iron is used in a certain way, over half the patients have significant improvement of symptoms or even remission, lasting from weeks to months (the rest of the patients don't seem to benefit at all, and no one can predict yet who will benefit and who won't). The method as I understand it is this (bare bones): use low-molecular-weight iron eg. iron dextran, first infusion 1000 mg, repeat when symptoms return but measure ferritin first and use that as a baseline for that patient, the goal being to keep his/her ferritin above the baseline. The baseline for each patient is different (so your "normal" and my "normal" and the dude next door's "normal" could be 250 and 120 and 20, and we'd all be "normal").