Posted , 6 users are following.
can anybody put some light on this I've had 14 venesections levels started at 739 after 14 venesection my level at 710 the lowest it's went down is to 473 very depressing keeps going up I go every fortnight, when I was there a lady was in and she said she had lost 2 family members to this I would like to find out what they class as dangerous ferritin levels.
1 like, 5 replies
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Mrs._Z Tina_72
Posted
Sorry to hear you're having a difficult time being deironed. For those without haemochromatosis, I believe the ferritin level is ok up to the 300 range. However, for those of us with HH, we need to be at 50-100.
If you are watching your iron intake, you may want to have more frequent venesections. You may also want to get the book The Hemochromatosis Cookbook". You may not be interested in the recipes but how to reduce the absorption of iron in your diet.
Good luck
Tina_72 Mrs._Z
Posted
GillianA Tina_72
Posted
There are two reasons for ferritin to be up: too much iron, and inflammation.
If inflammation is a problem, getting rid of extra iron will get rid of the extra ferritin that is caused by too much iron, but it won't get rid of the extra ferritin that is caused by the inflammation.
Did your doctor say anything about whether or not you have any inflammation going on in your body? If blood tests like c-reactive protein (crp) or sedimentation rate (sed rate) are normal, then inflammation is not likely to be the reason that ferritin is up.
bruce97898 Tina_72
Posted
I wouldn't worry about it causing damage. My doctor said in some countries, 500 is considered acceptable. But, to answer your question directly, 1,000 is the point where they start to worry that it will start to damage organs over time. I've read that it is more recently set at 2,000. But that's also not treating it for some time.
I know the frustration...I've been going for 2 years now. I've had some jumps, but don't get discouraged because you are still removing iron, which is the goal, and ferritin doesn't correlate directly to the amount of iron in your system. The less often performed iron studies will give you a better picture. Once my iron (not ferritin) got closer to normal, the other factors, Iron Binding Capacity and Saturation started to normalize as well, which seemed to help the ferritin get under control.
Piggypolo Tina_72
Posted