Hello abookreader,

I had weekly phlebs for the first couple of months, then fortnightly for a while, then every 3 weeks. My ferritin levels reduced fairly incrementally - this doesn't happen for everyone though. For the first year I would feel really good at about the 3rd day after treatment - energetic and focused. Now that I have reached some level of stability - and my consultant wants my serum ferritin to be under 50, the effects of treatment is not so noticeable.

The thing that tired me most was that I found (and still find) the phlebs to be painful - even with a little pile of anaesthetic cream on the site of the treatment.

It is not possible to restrict our diet so that we eat no iron but following research, I have adopted the following:

Reduced consumption of:

 Alcohol (but didn’t eliminate it completely) and stopped cooking with alcohol (if fibrosis or cirrhosis is present alcohol should be avoided completely)
 Red meat (but didn’t eliminate it completely)
 Pate
 Lentils, chickpeas, kidney beans, lima beans, pinto beans, black beans and black-eyed peas
 Sugar (it enhances iron absorption)
 Food with beta carotene

Stopped altogether:

 Breakfast cereal fortified with iron
 Drinking fruit juice with meals
 Eating fruit for dessert
 Lobster
 Eating dried fruit with breakfast cereal (it enhances iron absorption)
 Offal (I wasn’t keen but I wouldn’t eat it at all now)
 Uncooked shellfish (because of the possibility of bacteria vibrio vulnificus – people with HH can die from this – even handling raw shellfish can result in death)

Changes to combinations of food:

 I have stopped eating vegetables high in vitamin C at the same time as eating red meat
 I avoid tofu and quinoa
 Spinach is okay as much of the iron is unavailable (other molecules are too big to be absorbed and bind the iron)
 I eat whole grains
 I eat foods high in vitamin C and beta carotene as snacks in between meals (we need it to move iron out of ferritin tissue stores)
 I drink fruit juice in between meals but not with meals
 I have increased my consumption of dairy products and eggs
 I have started eating foods with Calcium alongside of red meat e.g. yoghurt with curry
 I started taking calcium tablets (now and then – I forget every day)
 I drink black tea or green tea with meals containing red meat (coffee is also good but I don’t drink it much) (these beverages impair the absorption of non-heme iron)

Also:

 I stopped using cast iron cookware (casserole pot and griddle)
 I will not take iron tablets / supplements (when I was advised to take them I felt sick and always discontinued)
 I will not take vitamin C tablets
 I will not take any vitamin supplements that contain iron (most do)
 I will not drink energy drinks or eat sports energy bars – they are often fortified with iron
 I will not take Milk Thistle as research has shown it may be harmful to people with haemochromatosis
 I will not use diet products with a total higher than the average RDA (recommended daily average) for iron (for women aged 51+ the RDA is 8mg / day)
 I will not eat molasses
 I will not eat soyabeans
 I don’t cook with salt
 I don’t rub-down iron furniture for restoration work and I never stay around people who are restoring iron furniture
 I don’t use an iron-based powder for cleaning jewellery
 I have never smoked [but it is problematic]

I hope this helps, Christine

Thanks for your healthy eating tips. I didn't know that about milk thistle; I thought it was good for liver support, but apparently not with hemochromatosis. Thanks for sharing.

Thanks Christine..I am altering my diet as well, your list of items not to eat is great. I couldn't believe the other day when checking a cereal before eating how much iron they put in some of them. WOW!