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For JMC, re. haemochromatosis

Hi J. Regarding your heads-up about haemochromatosis and vit. C: I looked into this at ‘Doctoryourself.com’. As expected, Andrew was already onto it. Below is a run-down of the information he’s gathered on it. I should add that he stresses in several places that low-to-no meat-eating is a key protective strategy with this problem, allowing continuing use of C. There’s even a paper in the list which suggests that C therapy can help haemo, in the long run! I’m keeping an open mind on it, and would welcome any other information that you can contribute, especially anecdotals about your vulnerable family members. Just so that I can refine my own comments on C use, when asked. Cheers, Rh

http://doctoryourself.com/hemochrom.html

Thanks Rhis. I think the key point in the article (at the beginning) is “A known hemochromatosis (HC) patient should not take megadoses of C unless under the supervision of an experienced physician.” because while it may not be a problem in individual cases (depending on diet etc) it definitely needs monitoring, hence the medical supervision.

One article we have found very useful re diet and haemachromatosis is this one
https://www.gastrores.org/index.php/Gastrores/article/view/1366/1369

which essentially makes the same recommendations as what you have noted above (limit or avoid red meat, vegetarian or veg + chicken and fish, especially fatty fish, is best, drink fruit juices between meals and avoid or minimise Vit C supplements).

We have one family member who is homozygous ie has both faulty genes for haemachromatosis, eats exactly the diet described in the article and still needs regular blood removal to reduce iron levels which he has been having for over 20 years (he was lucky to be diagnosed in his mid 30s before any damage could be done although his iron levels at diagnosis were already over 3 x the normal level). He was the one whose iron levels shot up when he accidentally took a multivitamin containing I think it was 1g of Vitamin C but may have been less. We also have another family member who is supposedly heterozygous (1 faulty and 1 normal copy of the gene) but is symptomatic (ie showing signs of iron overload) but it is possible that they only tested for one of the two possible haemochromatosis genes and he is heterozygous for both which is the second most likely genetic combination to produce symptoms (but they need to test for both genes to confirm that).

I think the bottom line with this is that high doses of Vitamin C are not recommended for self medication if a person has haemochromatosis. If it is indicated by other co-morbidities or for a particular instance of illness it is important that it is done only under medical supervision with regular iron monitoring because there is just not enough information or certainty about the impacts, particularly if high doses are taken over the long term. We know what it does to our family member when they take even a low dose of Vitamin C despite eating a diet entirely free of red meat, mostly vegetarian except for fish and chicken and loads of vegetables etc so would certainly not be considering high doses of Vitamin C unless on medical advice and with medical monitoring.

I will definitely share any further information that I discover if and when I do!
Best
J

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Thanks J! Vital information indeed. Your family experience seems crucial. Clearly it’s an important caveat, and one of which I was not aware previously. True, isn’t it, that in the real scientific method there is never any final, ‘settled’, non-revisitable truth…

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