Hi Macas,

The symptoms of HH and people's responses to the treatment seem to be a little different for everyone. There is a lot of good advice on this forum from people who have it.

Diet: I have researched this and have come up with an eating plan that does not create difficulties for HH:

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]

Feelings: HH is a life-long issue and requires regular monitoring and treatment. It is depressing to have it but we are fortunate that we live in an age where it can be diagnosed and successfully treated so that life-chances are the same as if we didn't have it.

Blood-letting makes the most difference and it is important that you follow your consultant's recommendation. Having a good relationship with your consultant and your phlebotomy nurse/s is important.

On the day of treatment keep stress levels to a mininum. Just do what you want to do if you can. I work from home on the day, go early to the clinic and have nice lunch and read for a while before going in. I go into the clinic and sit for a while reading and drinking while waiting for my turn.

I have some permanent disabling issues - I can't walk very far so I have found a hobby that I can do mainly sitting down. This distracts me and I don't think about work or the HH while I am doing it so that helps de-stress.

Coping with treatment:

Drink plenty of water the day before and on the day of the treatment. Always have your treatment in the afternoon. Have a nice, light lunch. Do whatever helps you to relax. I like reading so I always have a book or kindle with me.

I have a little pile of anaesthetic cream put on the site of the phlebotomy for about 20 minutes prior to treatment. This helps.

Stay sitting down for about 10 minutes afterwards. Do something nice in the evening. I like listening to music or watching films.

I hope you can find what works for you.

All the best, Christine

Dear Christine,
Thank you for your reply. Your words gave me a lot of comfort to face this new stage of my life. I will take note of your guidelines to give it a try and find what best works for me. Thank you so much.
Mario

Mario,

Thanks for your reply.

Christine

I am at the "I don't wanna do this any more" stage so understand completely! I am sick of needles. I get blood work in one arm and blood letting in the other every time.
That said ~

The day before and day of drink as much water as you possibly can.

The day of blood letting have a good breakfast, come home and rest and have a good dinner. I will admit to not following my own advice on that one as I usually don't feel like eating on blood days, probably from anxiety more than anything.

I am also celiac which means that I follow a strict gluten free diet. I steer clear of processed foods, eating clean whole organic foods, no grains and limited red meat.

I also do a mix of pure oils, vit. e, lavender and frankincense that I rub on the blood site daily to help heal the vein.

Take all the suggestions and find what works for you! Seems like with the disease we are all so very, very different.

Dear Cap6,
Thank you for your advice. I am brand new to this desease, but up to know neither my doctor nor the nurses that tend to me while the blood lettings have told me anything about applying something on the vein area to relieve the pain. I will ask them next time, because I usually end up bruised for some days.
Regards.

Mario

Hi Macas ~ It was my phlebotomist that told me about the vit e. Don't know where you live but I bought pure vit e oil at Whole Foods. And I am not doing a promotion (lol) for doterra but that happens to be the pure essential lavender and frankincense oils that I mix in. I would think whatever pure essential oils that you prefer would work. I chose frankincense and lavender because they promote healing. I don't know if they work or not, I'm not any kind of doctor (!) but since I started the oils I have had less bruising. Anything is worth a try, right!

Thank you Cap6. I live in Argentina, and will ask my doctor about the vit e oils. Do any of you know what should be and adequate pre-venesection hydration ?. How much water is suggested to drink the day before and the very same day of the blood letting?. I don’t have good habits of drinking water, so this would be a new training as well.

Macas,

The UK NHS recommend 1.2 litres or 6-8 glasses of fluid per day. The weather in the UK is not hot - in hot countries such as Australia adult men should drink about 2.6 litres per day / 10 cups and adult women 2,1 litres per day / 8 cups. If I was living in a hot country I would drink more than this prior to venesections.

I drink only water before and on venesection treatment days as tea and coffee are diuretics. In any case I just cant drink more than that amount of tea or coffee in one day.

In the UK I drink 2 litres per day, possibly a bit more, before and on the day of my venesection treatment.

Thank you so much. All the best.
Mario

I usually drink 6 to 9 flasks of water every day and try my best to exceed that on the day before blood day. I also receive saline iv before and after the blood letting. As the phlebotomist explained - our blood is 1/2 water . Keeping hydrated helps keeps the blood whole and moving thru the body well. If I don't drink enough then my blood tends to be too thick and they can't remove the full pint. Also my blood pressure goes down and I pass put. Fun times. lol I don't drink any alcohol 2 days before and only I small coffee the day of.
Another thing to help with the blood letting - we live in Central Oregon and winter here is very cold. Plus I am a colder kind of person anyway. The day of blood day I wear light mittens with hand warmers stuffed in them. Helps warm the veins and makes the blood flow better.
Feel better Mario!

Thank you. I appreciate the advice. I have just gone through 2 venesecrion until know, and did not know the need of drinking plenty of water before and after the procedure. I will follow the advices next time.