High Ferritin: Good morning i'm new... - Haemochromatosis ...

Haemochromatosis Society UK

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High Ferritin

ppf123 profile image
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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

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Madlegs1 profile image
Madlegs1

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.

RustyIron profile image
RustyIron

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 😀

ppf123 profile image
ppf123 in reply to RustyIron

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

3331 profile image
3331 in reply to RustyIron

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.

3331 profile image
3331 in reply to 3331

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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