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.

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How long before iron levels return to normal?

Mapper
Mapper
My husband is 46 and was just diagnosed with hemochromatitis. He tested high with ferritin at 816. His iron binding capacity was 241, percent saturation 66 and transferrin 172. He tested positive for the DNA C282Y mutation. They are starting him on weekly phlebotomies until his saturation gets down to 30%. How long will he have to do this before his levels are normal? I realize that he will most likely have to do this for the rest of his life, but I am hoping that it will turn into a 3 or 4 times a year thing rather than weekly.
nealpellis
nealpellis
My dad who has 2 C282Y's had a ferritin over 1500.. they bled him once a week for over 6 months to get him back to acceptable levels. Now he donates blood once a month..
DougL
DougL
I was tested in March 2013 and had a ferritin level of 925. They started weekly plebs and it went up to 1350. I had weekly plebs until January this year when I finally got to a ferritin of 45. Now I get tested every 2 weeks. If above 50 I get a pleb, if below, we wait. While getting plebes the ferritin which was tested every time, sometimes got lower, sometimes didn't change much at all. That was because iron was coming out of my organs back into the blood. Still, every pleb removes some iron, so I didn't worry. But I've had bodily damage. Bad arthritis in my ankles, atrial fibrillation from iron deposits in my heart and my liver ultrasound shows damage. You want to get the iron down as fast as possible to minimize permanent damage to your body.
deleted_user
deleted_user
My initial readings were well over 1500, in 1990. I was bled twice a week for a while, then once a week, then once a month... However, once I stabilized--which means getting down to borderline anemic for a while--the frequency got further and further apart. I was doing about 4-5 times a year for a long time till I adjusted my diet and exercise routine and target iron/ferritin levels-- now and I only bleed 2-3 times a year. If one lives a healthy lifestyle, it becomes pretty manageable.
Stevewmarsh
Stevewmarsh
Hi Mapper I had very similiar results to your husband, my level was slightly lower at 700, I have been having weekly phlebs for 12 weeks and my iron levels are coming down and are now almost at the poin where they whant to put me on a maintenance regime, this will meen 3 montly monitoring and 3 monthly plebs at first to see how I respond.
Have a look at my topic "First Venesection Today" as I have tried to keep an ongoing thread of my Phlebs and how they have affected me etc.

All the best to your husband.

Regards

Steve
Irony
Irony
My ferritin was almost 7000 and it took me about a year and a half at 2 phlebotomies a week. Now I have them every three months as a maintenance regime.
mike1126
mike1126
I was over 3500 and did weekly phlebs for over a year. im now on a low iron diet and phleb 2-3 times a year.
deleted_user
deleted_user
I've had six monthly treatments over six months to get from 429 to 117. But as a 'compound heterozygote' I'm not storing as much as the 'homozygous' types, so will require less frequent phlebs. Will wait and see what my tests say in about three months, but not likely to need more than 3 a year.