@janetlen .Thank you for your thoughts. I was so hopeful, especially after my visit on the 10th. He spoke with me and my legal Healthcare Advocate for almost an hour, and assured me they would help me. He asked if we minded waiting for a few minutes while he talked to his colleagues. After about 15 minutes he came back in with two of his colleagues and they both asked me a few questions and said I should stop worrying and that they would figure out a way to get the ferritin out of my body. We all agreed I couldn't make the 14 hour round trip drive and that they'd set up video visits and instruct my Hematologist/Oncologist back home on what to do. I felt so much hope when we left . The following week, my Oncologist ordered some labs and for some reason my ferritin level had dropped from 961 to 599ng/ml. I checked online at several reputable locations and got the same answer: that big of a drop is medically improbable with no medical treatment, and it dropped to 599 just 14 days after it was 961. I got a message on my MAYO patient portal the next day saying that since my ferritin had dropped to such a low rate it was determined that I no longer needed MAYO and my Hematologist back home could handle it from here. What a shock. So I'm back to square one, and depressed again. I'll write more as I know more. Thanks for being my support right now. I need it.
Jeffrey