Helloi KatMc,

I am sorry to hear about your mother's struggle,; it must have been very hard for you and your family as well as for her.

It is puzzling that you were told HH is not a known disease when it is not uncommon for people with certain heritage to carry the HH gene.

There is quite a bit of information on the internet about HH. There are HH societies in the UK,, Australia, New Zealand, South Africa and the USA. Their websits all provide good information on HH.

I have found many academic articles on HH on the internet.

I live in the UK and for my own diagnosis and treatment, I rely primarily on my haematologist and when my liver had stored iron I saw a gastroenterologist for that issue in particular.

I suggest you do lots of internet searching as you will find information and of course this site provides an abundance of information from our own experiences.

Regards, Christine

Christine, What does your gastroenterologist do to treat your liver as far as the iron stored in it?

Hi again Astid. Your doctor is probably checking your iron because there are mutations of the HH gene that can't be tested for but you still store too much iron. Sounds like a good doctor to me. BTW the incidence is thought to be 1 in 200 in people with north European ancestry ie white people.

Hi Astrid and other contributors to this post.

The gastroenterologist passed me over to the haematologist who put me on a course of frequent venesections until my ferritin and transferrin saturation levels reduced to the normal range. This took a few months and during this time my ALT levels reduced to normal. I had a final appointment with the gastroenterologist who was satisfied that my liver was undamaged.

The haematologist then put me on less frequent treatment while she found the right frequency for me. Bi-monthly was insufficient and my ferritin and transferring saturation levels were escalating so I am trying once-monthly and will have a review soon to see if this works for me.

The gastroenterologist and the haematologist both said that if my ferritin levels remain above 50 I will likely experience symptoms again including an elevation in my ALT levels and this will not be good for my liver.

I have done a lot of academic research on this condition and as a result I do a few self-help things to including:

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]

Christine