Jerry Paige
I was diagnosed with hemochromatosis approximately 10 years ago. I'm currently seeing an M.D. who is using a combination of phelobotomy and chelation therapy. Desferal is being used for chelation. My condition has seldom been treated agressively in the past. Current goal, monitoring FE,ST, and hematocrit is to get crit down to 40. Currently 47, not unusual for it to run around 52-70. First complained of fatigue, and sleep difficulties around age 30. Have anxiety and depression. Numbness in toes for two years. Joint pain, muscle stiffness, problems with memory and concentration. Interested in anecdotal, or research symptoms attributable to iron overload. As I understand it iron is deposited in organs other than the pancreas and liver. However, I've found nothing in the literature addressing symptoms related to deposits, for example, in the pineal, or other glands. I've been diagnosed with major depression and taken all the tricyclics, MAOIs, and SSRIs without significant improvement. Also been through one course (12 treatments) of ECT. I've argued since I was first diagnosed with Hemochromatosis that it must play some part in problems with anxiety, mood, and sleep. Generally speaking it has been my experience that physicians, even hematologists, are poorly informed. At least, in my case, I have gotten very mixed messages about the seriosness of the condition, and symptomology. At worst my inquiries have been dismissed as hypochondrical. At best I've been told to have a phelobotomy every 3 months. I'm 59 years old. I assume I have primary hemochromatois, but have not had genetic testing. I did have a liver biopsy. Is there any value in pursuing genetic testing to determine what genes are involved? Also interested to learn if there has been any research, even anecdotel, listing symptoms people with hemochromatois have in common. I know the obvious ones such as cirrohsis, arthralia, and diabetes. Recently I saw something that spoke of psychological problems. Is there any specific research being done? If so, where, and by whom? It's unrelated to the medical questions I have, but I'd also be interested in information about the Red Cross. I've heard that they are using blood from patients with Hemochromatosis in some states. What happens to blood that is drawn at sites where the patient, or insurance company, must pay? Are there extra costs associated with processing hemocratic blood? I've run on long enough. I'm obviously very interested in the subject, and have many more questions. This is the first opportunity I've had to ask some of them, with a hope they might be, if not answered, at least responded too. Thank You. JPaige