Haemochromatosis Society UK

High Ferritin

Good morning i'm new here and so pleased I've found this site as I need advice regarding high ferritin

My ferritin levels are going up and up - 254 range 15 - 204 ng/ml

I'm soon going on holiday for 3 weeks and wonder what I can do diet - wise to prevent it going higher. Obviously alcohol has to be watched--pity I do love Caribbean rum punches,but what foods should I cut out.

On my return I am due to see an endocrinologist who will no doubt recommend blood tests and eventually venesection In the meantime I'm worried sick if I carry on as normal i will be doing great harm to my body

Your advice would be greatly appreciated

Regards

5 Replies
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Go off and enjoy your holiday- the stress you are putting yourself under will do you far more damage than a slightly elevated serum ferritin reading.

Anything under a 1000 is not to be pannicked over. You will get all the tests to eliminate possible causes- and indeed may end up Asymptomatic iron overload. No observable cause. (My situation)- but otherwise healthy.

You will likely be giving blood anyway to get you down to 150- which may take a year.

If you are overweight, then it would be sensible to help your body by a sensible diet-(cut out sugar, carbs, alcohol etc)

Good luck. And enjoy your holiday.

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Hi I hope you enjoy your holiday and a few rums. Moderate alcohol intake is not thought to hurt with HAEMOCHROMATOSIS if you don't have cirrhosis. Common sense must be used though

I got my ferritin down from the 800s to the 300s after a false negative test for HH. I knew I had it and the medical staff were just fobbing me off after they or the lab stuffed up somehow so I did my own research. I took high doses of curcumin which chelates stored iron but not free iron. I also added a lot of green leafy veg and magnesium to my diet. That's about all I could afford to do but it kept me on my feet.

I recently had another test and yes, I am homozygous for c282y as I suspected. I have just had my third venesection but don't feel any better yet. I will go for a blood test tomorrow to see what's happening.

I really do believe you must become your own best health advocate but it is hard at times. A Mediterranean diet seems to work the best

I wish you all the best with the iron and the holiday and hope you don't set off the metal detectors at the airport 😀

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Thank you so much for your reply. Loved your comment about metal detectors at the airport. Thankfully I'm on a cruise so no problem other than the Bay of Biscay but will take care with the rum punches.

Hopefully I'll be able to sort things out on my return when i see the endo

Good luck to you in your endeavor to be well again

Kind regards

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I have two hemocrematosis genes but not the c282y gene to actually five you hemo. So iron collects between the fingers in the liver cells. I did a detox of Bentonite clay for a week ( need to take magnesium) got my blood from 338 down to 228 in one year. So platelets and red blood cells are back to normal.

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Did the detox four times. Need to get it lower. I also have NASH. Lost weight and walked all the time which helped.

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