Feeling weak. Anyone has tried vitamin supplements ?

Weakness and fatigue are the norm for most with HH. I can only say what has worked for me. Every morning i drink warm water with a tablespoon of lemonjuice in it before anything else. Thiss helps rehydrate and lemon chillates the liver and lemon (although citrus) becomes alkaline once it is in contact with your saliva. Lemon works on the acids that cause indigestion and heartburn so this is an allround winner.

No white flour or packet cereal at all ! It has many hundreds times more iron than anything you eat. No orange or oranges at all as it lifts the iron from your food and drives it into your liver,. Drink milky tea with all food you eat, make it a habit, i ask for tea that resembles chicken soup. We have to find the funny side.

No alcohol, red meat, offal, tuna, or any of the things on the list from the Haemochromatosis association. Until maintainance is reached then only ever as a one off treat. I HAVE STOPPED SUGAR, diabetes is a bugger I refuse to get from this. Even when knackered try and excersise, it eats iron and sugars in the muscles and tissues. I walk three times a week it isn't a lot but seems to be enough.

Read up on heme and non heme iron, I found loads on the Canadian Haemochromatosis site where they are way further forward with this than our doctors are yet. They also have an iron tracker app which you can download, it is very easy to use. I have every other day a vegetable day, so I get the iron in veg wash it down with tea that keeps the iron going straight by the liver and my body gets the vitimins and minerals it needs. The nack is not to mix heme and non heme so every other day I have white fish or chicken, turkey, pork, with rice or white potatoes, corn, cauli the low iron veg ( but not the dark green or high iron) heme takes the non heme iron to the liver if eaten together. I have a small mandarin once a week on its own with a glass of milk so I get some vit c and because I have always loved oranges and want one!

Turmeric is an excellent anti inflamatory and has lots of wonderful nutriants so I or the husband makes a veg and chickpea curry and a chicken curry most weeks. Far better than suppliments. Before Venesection eat a big breakfast, i have 2 poached eggs on (read the packet) whole grain bran brown bread,, milky tea and take a bag of raw mixed nuts and milk to eat on the way in. I drink the pint lemon water before each meal. A well hydrated body makes the blood flow quick and well fed stops the energy dip.

I was diagnosed in June had my first V in August and have amazed the specialist and doctors by being in maintenance so quickly. I was told yesterday and asked to go to the hospital and talk about how with diet excersise and venesections I got to where I am. I hope this is of some help to you.

Your body still needs iron and to drastically restrict your iron intake will make you anemic and cause your body to store even more iron.

Mario, I typed a long spiel the other night and then lost it due to my wifi suddenly not working.  Now I see Chris' response and he is correct according to research outcomes.  It is not recommended to reduce iron intake other than not take iron supplements, iron fortified breads, cereals, etc. and I would omit liver and clams - clams are recorded as having a VERY high iron content.

For one thing, you need iron to make red blood cells for your haemoglobin, so that you don't get weak and fatigued by having venesections.  While a venesection can remove the iron equivalent of 50 steaks,  it is best not to have red meat everyday.  Mix it up.

I searched the Canadian Haemochromatosis website (I used to follow it) for their recommended elimination list and found the opposite.  I landed on Prof Paul Adams' (who is an internationally respected researcher of HH) recorded address at an Information Session in Guelph, Ontario, October 2016.  He addresses a lot of issues about HH and puts it into perspective.  One being diet, a study his team did, found that going vegetarian made only a minuscule difference to iron loading that was not worth it if you prefer to eat meat.

Prof Adams was instrumental in supporting the very first HH association in Canada (Canadian Haemochromatosis Society) and set up a forum page to answer questions.  He is a valued speaker at all international conferences on HH.   He often refers to Australia as he has worked with Australian researchers too.  I have spoken to him in Australia.

And you can eat all the dark green vegetables you want.  The iron in spinach is a myth.  If you can borrow or obtain a copy of "The Hemochromatosis Cookbook", you will find a lot of information on what you can eat and why.

Vitamins - I have read a medical research that recommended Vit E, and CoQ10 to help with mitochondrial damage caused by long term HH.  I take a practitioners brand multi (without iron), calcium, magnesium etc.  Vit D3 forte drops which work better than  tablets and am currently trying Vit B12 (injections) for its benefits, and Omega 3, - oh, and a chewable Vit C tablet last thing at night which I let dissolve in my mouth.  Without it I am susceptible to sore throats and colds as our immune system is generally low and we need antioxidants.

The tannins in tea, coffee, polyphenols in a small red wine, and calcium products are said to reduce the uptake of iron when consumed with meals.  While Vit C supplements and juices high in Vit C (there a many fruits and vegetables that are higher in Vit C than orange) should be avoided with meals.  Of course, you can eat tomatoes, capsicums as part of your meals, because you have to eat a lot to have an impact.  An orange won't be a problem, and better still because you are eating the fibre with it, instead of many oranges/fruits in one drink which is full of sugar.

It is better to avoid sugars and starches for a lot of reasons.  Helps you avoid diabetes, and fatty liver, plus it is said that sugar also promotes the uptake of iron.

Ellen has said she has reduced her ferritin with her diet, but we all have varying degrees of HH because we all have different systems.  Some of us can reduce iron a lot more quicker that others, a lot depends on how high your transferrin saturation % is.

Turmeric helps if some of your ferritin is caused by inflammation because turmeric helps reduce inflammation.  It makes my teeth yellow, so would rather let the vx do its work.  And inflammation ferritin can reduce very quickly, when that problem is treated.

I keep a spreadsheet recording my Iron Studies, Hb, venesections, and make notes about something different.  Like a cold or injury can increase our ferritin levels despite regular vx but goes away quickly once fixed.

I hope that helps.