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.
Hi everyone,
I was just recently diagnosed 2 weeks ago by a hemotologist. I saw her on a Tuesday and was in having my first phlebotomy on Thursday. My ferratin level at my PCP prior to seeing the specialist was 589 or something close to this, when I saw her a month and a half later it was down to 466. During my phlebotomy I passed out cold so they had to stop the procedure with a blood letting of 400 cc., they did give me 500 in fluid right after to help bring my blood pressure back up. The rest of that day was horrible, I was nauseated, exhausted and just plain felt horrible. The next two days slowly got better but was still pretty tired to say the least. It has been two weeks today and I went back to have an ultrasound done and to have regular lab work done to check my levels. I'm only 35 which is young in females, from what i have learned online, and have a child which I am now terrifed I have passed this along to. I really hope I start to feel better and this process gets better because it is HARD. Thank you for letting me just come and talk
If you have never given blood there is a couple rules that may help. 1) drink plenty of water, and 2) eat a big meal,both items before arriving. You do not want to be dehydrated!
Also, after your first experience you may now have a panic attack (maybe even had one during the first one). You may want to consider asking your doctor for something for anxiety.
Your ferritin level is elevated and needs to be lowered. However, it is not real high and should be corrected quickly. Mine was 800-1000 and it took 8 donatations in 9 weeks to drop my ferritin to 13 (too low). It took almost 9 months to get back up to a level that I needed 3 more donations over three months.
Try not to worry and remember to eat and drink before the next time!