how to decrease ferritin level when your hemoglobin is below 12.5 (red cross will not take blood with a hgb less than 12.5.

[trythis2ok]

I am a carrier of hemachromatosis and have a liver fatty score of 5.4 but a fibrosis level of 0-1. The problem is that my ferritin level is often high as I'm a carrier of hemachromatosis. The Red Cross will not take blood donations if your hgb is under 12.5 which mine is and I'm also on blood thinners for atrial fibrillation. I do not want to take the chellation drugs due to the effect they have on the liver. How do I get my ferritin level down when I can't donate blood being on the blood thinners?? If my hgb was above 12.5 I could do the occasional blood donation if I was not on the blood thinner, but that is not the case.I understand that a doctor can write a prescription to have your blood removed by a phlebotomist, but if I'm anemic that is not an option either?? I hear turmeric helps. Where do you even find the places that will take your blood even if it has to be disposed of. Is anyone else in this type of situation and what recommendations do you have. I'm becoming very frightened about how my disease process is headed. I had a repeat liver fibroscan done recently and it showed no improvement and I have tried so hard with diet, exercise, no alcohol, etc. UGH. Nevertheless, happy holidays everyone!!

[Hidden]

The minimum donation at the blood bank is a 500cc draw, so it's important you don't give this much blood when hemoglobin is marginal.

A referral to hematology should provide some answers. A hematologist can prescribe smaller phlebotomies, & monitor you closely to see how you respond.

Besides iron, Vitamin B-12 and folate/folic acid is also required to build new red blood cells, so your doc may want to look at a blood test for B-12, particularly if you're on an acid blocker, as this can inhibit absorption of B-12 from food. It may be a B-12 shot could resolve your marginal hemoglobin issue.

Folate deficiencies are rare, as foods are fortified with this, but the foods fortified with folic acid are also fortified with iron, so you may be avoiding them. I believe your doc can test for folate levels too, or perhaps prescribe a B-Complex supplement containing folic acid.

A hematologist is the expert in all these areas, so if you haven't been referred to one yet, I'd ask about this. Hemochromatosis is something that must be treated, by hook or by crook, so don't let your GP shrug his shoulders and brush you off.

[trythis2ok in reply to Hidden]

Thanks so much. I do see a hematologist and a liver specialist. I'm just complicated.

Happy Holidays!!

[mncold]

Hi trythis2ok,

Wishing you Happy Holidays.

It would seem to me that you need to speak with your doctors. If you don't feel you are getting good advice, perhaps you could get a referral to a different doctor or a specialist.

Hope things improve for you soon.

Mary

[trythis2ok in reply to mncold]

Thanks. I do see a hematologist and liver specialist. My condition is just complicated. Happy holidays to you!!

[Porphyriamaniac]

Hi trythis2ok, in short, you can't lower your ferritin level without blood removal or chelation therapy unless it's high because of inflammation of course, there are plenty of whackjobs touting cures that dont work though, cabbage being my favourite! 😂. I have a condition which makes me load Iron, I was trying to follow a low iron diet (counterproductive and nigh on impossible! 😁) and my ferritin actually raised whilst doing this! I'm lucky that my haemoglobin has been stable enough to handle a venesection regimen. Metonoia is right, you really need to see a haemotologist about this, especially as you're on blood thinners too, they will know the right course of action for you, we can only speculate. Eat properly aswell, if you try and reduce iron rich foods you can end up deficient in the other vitamins and minerals contained there too needed to keep you well, the only things I would avoid are things fortified with iron, such as white flour/ breads (advice from my haemo 🙂). All the best and merry Christmas to you, Stacie. xxx

[trythis2ok in reply to Porphyriamaniac]

Thanks. I do see a hematologist and a liver specialist. I'm just complicated!! Happy holidays to you!!

[Hidden]

You shouldn’t be going to give blood without proper medical advice as to whether it is needed as there’s a very fine balance with your blood. I have the opposite issue -low ferritin and anaemia but have PV which results in too thick blood and clots in my liver with normal levels of iron.

I have regular blood tests and they try and increase iron but then end up having venesections to reduce red blood cells.

I wouldn’t dream of trying to control this myself without blood tests - let your liver specialists and haematologists control and monitor your ferritin levels

[trythis2ok in reply to Hidden]

Thanks. I do see a hematologist and a liver specialist. Have a happy holiday!!

[GrittyReads]

I don't understand.

If you are in the UK, and you have been formally diagnosed as having haemachromatosis, then you should have regular appointments for blood removal. Also, how much they remove and other necessary treatment - depending on what else is going on with your blood/body - should be monitored and advised at each session.

I don't know anyone with this, but I have read about the treatment procedure - and how careful and precise the Medics are - in accounts written by people in the public eye, who have this condition. I think one example 'account' that I've read was by the writer, Will Self.

You should not be thinking of blood donation, or anything else as self-medication: your treatment should be by medics who know your condition … and who adjust your treatment accordingly.

Go back to your GP or consultant and ask for a review.

[trythis2ok in reply to GrittyReads]

Thanks. I do see a hematologist and a liver specialist. I'm just complicated:)) Have a happy holiday!!!