Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
hey everyone! New to the group and double mutation HH. Ferritin is 1780 and I began my phlebotomy treatment. I am stationed in Germany and so being treated by German doctors as well as US. I just did second one and feel so weak. I feel my Dr is good, but I worry that I will run out of blood doing this weekly! Should I worry? I know to ask for hemoglobin levels prior, but other than that I am basically trusting him.
One last thing, it’s the day after and I basically ate alllllll day. Anyone else have strong appetite? Thanks in advance guys!
And there are other ways to lower your hemoglobin. Yea blood letting is faster, but I think “overall” health should take presidents. I mean if you can’t function or feel horrible every time, why torture yourself? I went for less blood being taken, not caring if it would take longer to reduce my levels. I needed to be able to function as a human being. Granted I wasn’t in danger levels mode either. Wow, what we have to go through with this.
I just wish my symptoms wouldn’t last so long, every single time I get a phlebotomy. They start about a day and half -two days after the phlebotomy and last 4 to 5 days. More if they take a whole unit. I’m totally fine Day 1. Talk about being on the “I have no clue” side of things. Ferritin 29, saturation 85%, binding 233 & hemoglobin 15.6. I’m a conundrum.
I would watch my diet and limit red meat. A good read is Dumping Iron. Good book and taught me a lot about HH. Good luck, eat before your phlebotomy and drink plenty of wTer afterwards.