Hemochromatosis-high ferritin venesection are really draining

Hi i started at 1180 now down to 433 and feel no different still tired aching joints also spoke to chap having same his is down to 250 from 1300 and he says the same no difference

I am totally amazed that your dr has led you to believe you have (genetic) haemochromatosis. 'Wild type' means you do not have the haemochromatosis gene. Perhaps the genetic test says C282Y/wildtype, or H63D/wildtype, which means you only have one of those genes which should not have led to such a high iron overload. Or your dr has misread the genetic results. You do not say what HFE gene if any that the test revealed.

It would mean that your iron overload was caused by something else, e.g. ingestion of iron supplements, alcohol, infection ,inflammation, malignancy, liver disease, cancer. This needs to be searched, diagnosed and treated. Venesections will not cure it. They are ok up to a point and most likely your body is not coping with the frequency.

It is quite possible you have Type 4 haemochromatosis. "Hemochromatosis type 4, is a hereditary iron overload disorder that affects ferroportin, an iron transport protein needed to export iron from cells into circulation. Although the disease is rare, it is found throughout the world and affects people from various ethnic groups." You will have to search this out yourself, as I do not know much about it, but there is someone who has contributed to this haemochromatosis who has it and knows quite a bit, But from what I believe, with Type 4, you are not able to cope with too many vx, and other forms of treatment is required. You will be hard pressed to find a dr who know anything about it or even acknowledge it, so you will have to do your own research, print it off, and give it to your dr.

It is not recommended to eliminate red meat, greens etc to treat haemochromatosis anyway. Ironically, you need the natural iron to keep your Hb in a healthy range to enable you to have venesections. A vx will remove the iron of 50 steaks from your body. So some red meat is negligible in the big picture . Just don't have it morning, noon and night. Calcium is the only proven iron uptake reducer but it also reduces uptake of other important minerals. Nevertheless, I still take some for my bones, and we eat cheese/yoghurt for desert. Tea and coffee is said to help, and more beneficial anyway, and makes us feel like we are doing something about our iron levels, true or not. Avoid Vit C and juices high in Vic C. whole fruit is ok because you still need the antioxidents, ACE, to prevent colds, etc. I do suck on a Vit C tablet (500mgs) last thing at night which, for me, prevents sore throats, etc. Researchers have found that CoQ10 and Vit E helps repair damaged mitochondria caused by haemochromatosis.

We do partake in a red wine with our dinner (the polyphenols are supposed to reduce the uptake of iron) but stick to one .... mostly .... on an everyday basis.

My husband, who is homozygous H63D, cannot absorb Vit B12 from tablets. The deficiency caused severe neurological problems, but picked up almost immediately with weekly B12 injections. He has now moved on to 3 monthly. I cannot absorb Vit D from tablets or the sun (I live in the tropics), but a practitioner's brand of Vit D3 forte drops worked immediately. This is a very important vitamin also. I will leave it to you to search that out. FYI, I am homozygous C282Y, and our son is compound homozygous C282Y/H63D.

Although the retailers of turmeric like to say that it reduces the uptake of iron, it does NOT. It is a myth. If it did , all of India would be anaemic. In large quantities, it may reduce inflammation but I would rather take Omega 3 which does a better job and does not give me yellow teeth.

Because I started having problems letting my blood go during vx, I decided to try a 100mg of aspirin a day to thin my blood. It had the side effect of releasing my body of some pain, I walked faster and I felt lighter. It seemed like it flushed stale iron out of my cells. Very recently, because of some dental work, I had to stop the aspirin, and boy, did I feel the difference. Back onto the aspirin quick smart.

I have been dealing with this for 21 years, read lots of medical research, attend conferences, talk to researchers and always on the look out for new information. I am a volunteer advocate for my country's hemo organisation and have run a support group. Best way is to google '(the issue) and iron overload'.

I hope you get this sorted out and I would love to hear the outcome. Good luck.