Been diagnosed with GH from an Irish background mum and dad
I need to understand what ferretin levels irons levels are and what questions to ask
had first venesection almost fainted
was told not to eat spinach but all the websites say it prevents absorption
advice please anyone
Hi Tom, I too have an Irish mum and dad and was told this is sometimes called the Irish curse! I am not an expert but I think it's the serum Ferritin iron levels you need to monitor (according to my blood work). I started around a level of 750 and I am now at 17 with 2 or 3 blood donations a year.
I too fainted after my first venesection but i learned to make sure I was very well hydrated, ate well before and after and do not drink alcohol the day of giving blood as this is what caused me to faint after 2 glasses of wine (it was a few days before Christmas afterall).
I drank coconut water before and for a few days after to make sure I was well hydrated and don't do much physical exercise for a few days as it will be much tougher.
My consultant told me diet would not make much of a difference but you will need to take your own experts advice and I wouldn't obviously deliberately target iron rich food.
I know everyone is different but I am lucky that they found out early and I have no ongoing symptoms and donating blood a few times a year can only be a good thing.
Good luck,
Linda
Thanks Linda that's kind of you I'm around 1200 so guess I have a long way to go to get down to a good level, the first vs knocked me for six so I will be better prepared next time
Geting used to a new diet now too and no alcohol , I'm not sure yet if I will be on weekly vs but I'm in good hands the staff at the hospital are lovely
Hi Tom,
When you begin venesections your body often reacts as after all it is not what your body is used to. I was diagnosed a year ago and am just in maitainence now. While you are trying to drop the iron levels diet helps once down where you need to be it is not so important. I manage by eating vegetarian three times a week, that way I can eat all the fruit, veg and pulses my body needs to get its balance of vitamins. The other days I eat white, chicken, rice or potatoes, curried with loads of turmeric, or white fish, cauliflower or lean pork.
I "never" eat anything made with white flour as it is all fortified with iron or any supplements unless your doctor okay's them (almost every supplement you buy has iron and vitamin c) Vit C carries iron straight to the liver. Please be aware (by law all white flour and some brown in UK and USA is fortified) I eat rye bread and rye crackers, (one hotdog in a bun had me bed bound for two days) after maintenance.
No vitimin c at all. No beef, sausages, liver, beetroot, liquorice or tuna, clams or raw fish or seafood.
I do this because I read about and researched heme and non heme food. Basically we (rusty people 😁 should not mix them but need both to get a balanced diet. Once your numbers come down you can have the occasional steak. I do not seem to be able to and quickly know what is making the brain fog and exhaustion and joint pain return.
Before Venesection you need to get in a brisk walk even if it is just across the car park, have downed at least two pints of water and eaten a solid meal egg bacon beans milky hot tea would be good. Another hefty snack after with lots more water. The exercise helps pump the blood and warms it the water makes your blood run free and the food stops the fainting your body does when some one is thieving your blood. All easy fixes, you have done the hard bit and been diagnosed . I would suggest you join https://haemochromatosis.org.uk/ it has more info than the doctors have and you can get the latest results etc. It also explains all the tests and gene results. Good luck Tom you have got this.
There are two kinds of iron foods. Heme (animal) and non heme (not easily absorbable iron food). From what I've read and understand is that all meats have easily absorbable iron. Vegetables don't. Best to cut back on red meats, cereals, Milo. Also if you have a cup of tea with your meal it will slow down absorption of iron. Turmeric is good for that too. Add turmeric to you meals with red meat. Avoid shellfish. Shrimp is also high in iron. Eggs are okay and milk. Don't have oranges or vitamin c close to the time you eat a meal with iron in it. Vitamin c and alcohol increase iron absorption. But best not to let it all worry you too much. The venesections will help. And once you are in maintenance, your trans serum ferritin levels should come down which is an indicator of how much iron your body absorbs. Mine was 66% to start with and once in maintenance dropped to 25%. So now I don't worry so much about what I eat. Everyone is different with their ferritin levels coming down with venesections. Your levels could fluctuate so don't panic if it goes up. It will come back down. This forum site helps. It makes you feel like you're not alone. Xxx
Hi Tom, I have been treated for GH since 1998 after suffering severe symptoms for 9 years, which led to my hips breaking up because my blood was so thick with iron, it blocked the fine capillaries which fed the bone.
I am homozygous C282Y, my husband (also Tom) is homozygous H63D, and our son is compound heterozygous C282Y/H63D so I have had a lot of experience reading medical research, talking personally to researchers, attending conferences, running a support group, talking to many drs, (and educating them, making them aware of this disorder at least), medical students, and people with GH.
It is not recommended to try to control your GH with diet - you will only affect your haemoglobin, and you need good Hb to enable you to have venesections. Not eating red meat will only have a minuscule affect on your ferritin levels. A venesection will eliminate the iron of 50 steaks. Just don't eat it 3 times a day, as one young fellow I know did (he lived on a cattle property where they killed their own meat) and ended up with a ferritin level of >4000 at age 22. And don't forget, this was before he was diagnosed and had treatment.
You can have as much spinach and green veggies as you like. Liver and clams have the highest heme iron, so best to avoid. Sounds contradictory I know, but everything in moderation as they say. You can eat whole oranges and other fruits which have Vit C, but not fruit juices made with Vit C fruits as you are drinking many pieces of fruit at once without the fibre which is beneficial.
Tea, coffee with meals are said to reduce the uptake of iron, and calcium is proven to reduce the uptake of iron. Eg, have yoghurt, cheese, etc as dessert. To read up on this, try to get hold of a book called Haemochromatosis Cookbook (published by Irondisorders Institute in the US). It will explain why you can eat all these foods. Ask for it at your local library. I bought mine from Amazon.
Eliminate sugars and starchy carbohydrates to prevent or reduce fatty liver to which we are prone.
We have one small glass (100mls) of red wine with dinner as the polyphenols also help reduce the uptake of iron. But if you have liver problems - don't, until that issue is mended. Turmeric is an anti-inflammatory. It helps reduce inflammation which causes a higher ferritin. It, in itself, does not reduce the uptake of iron, but may be effective if you have inflammation. I expect you have to consume a lot of it. It also gives make your teeth yellow, so if you feel you must take it, capsules may be better (but more expensive). But - GH researchers vehemently say it does not reduce ferritin. Only pseudo medics push this and other myths (e.g. cabbage, aubergine skins) in order to get you to buy their products.
As you are having frequent venesections, it will benefit you to have Vit B12 injections (more effective than tablets) and folate (which is plentiful in green veggies. Vit B12 is in proteins, especially red meat. Also have your Vit D checked as a deficiency in this worsens the side effects of having GH.
Other vitamins recommended by GH researchers is CoQ10 and Vit E. But don't waste your money on cheap products for CoQ10, look for a practitioners brand.
Be aware that drs do not read up on GH, they often only become aware of the basics and the myths. Haemotologists know how to read blood levels and know when to change the frequency of venesections. Overall, though, current research says you must be de-ironed to <50 to get all the stored iron out of your organs, and an international program yet to be published advises it best to keep to same. My ferritin level is currently 21 and my TS% has finally come down to <45%. I will continue to have venesections every 3 months to keep this happening. A low ferritin level is not harmful, but a low Hb is.
I was constantly searching for a dr who knew a lot about GH in order to get treatment of damaged organs according to having GH. I got the best advice from a heart specialist. He said "even if they found deposits of iron in my heart, they cannot cut it out, drain it out, etc., just keep having venesections". So any health problems that may have arisen from having GH should be treated same as those who don't have GH - just keep having those venesections.
Good health.
Thank you so much I’m at the start of treatment so it’s been s but of a shock but your kind words are very informative and encouraging nice to know this forum exists thanks again
Ellen
thats great I will take that advice on board it's not to different from my current diet so should be no hardship loved the comment as to rusty people made me laugh thanks enjoyed that
will do lots more research now and am armed with good ideas to take on board the venue sections the first was horrid but it was an awfully to day too
I'm very grateful for your advice their is so much to learn , you keep well too please thanks again
tom