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Beef, Vitamin C, and Iron Overload Caution
This can be useful:
https://www.healthline.com/health/hemochromatosis-diet#foods-to-eat
http://www.irondisorders.org/Websites/idi/files/Content/854256/DietRecommendations.pdf
Calcium with food prevents iron absorbtion, phytic acid.....
I did quite a bit of research on this years ago. I consider iron to be a bit like Vitamin A. We want just enough and not much more optimally. Both of them cause major harm in excess and an excess of either is probably a major cause of aging and disease. I would personally not be happy with my ferritin being over 100, some people aim to have it lower. The great thing John is that you can do something about it, it is easier to remove from the body than Vitamin A as long as the iron in your liver mobilizes after your phlebotomies. Just think how much happier your liver will be when you have lowered your iron and VA levels!
It is abnormal not to lose blood. All through history people lost a lot because of hookworm and other parasites and that didn't stop all healing traditions from around the world from practising some form of bloodletting either with leeches or with a blade.
Thank you for putting things into perspective for me...
Hi John
I have genetic haemochromatosis so my experience could be different to yours because I have a faulty iron metabolism. Regardless there are a few things I have picked up along the way that may be helpful.
Firstly vitamin c only increases the absorption of non-heme iron (plants). It does not increase absorption of heme iron (from meat). Having said that if you want to continue to supplement with vit C I would recommend taking it away from meals.
I currently eat beef 3 meals a day (v restricted diet due to gut issues) and it is making no appreciable difference to the rate at which I load with iron. I think this is likely highly personal though. Heme and non-heme iron are absorbed through different cellular mechanisms so one person might have problems / strengths absorbing heme iron and another problems / strengths absorbing non-heme iron.
Turmeric is reported to be good at chelating iron. Opinions appear to be pretty divided regarding this but I have had good success with it. I can't say categorically that it was the turmeric because I was also consuming truck loads of dairy at the time and calcium impedes iron absorption. I'm not consuming the turmeric at the moment as I think it was aggravating my gut but it might be worth trying it. I was taking 1/2 tsp turmeric paste with each meal. I went 18 months without needing a phlebotomy, which is a record for me, whilst doing this. (colour in turmeric is not from carotenoids, it is a low VA food)
The rate at which people de--iron via phlebotomies varies hugely. I've know people with ferritin in the thousands de-iron in a few months via weekly phlebotomies whilst others take 1 - 2 years. You will see published figures estimating how much iron is removed with each phlebotomy but in practice for what ever reason there is huge variation.
Apart from a few sensible precautions such as limiting vit C with meals and not having high iron meals often (liver anyone 🙂 ) I wouldn't change your diet specifically to limit iron. It's in so many foods and it is more complicated that just the iron content. For example spinach is always quoted as high iron (partly untrue as apparently statistical error originally) but according to the iron institute it has v low bioavailability and you would get more iron from the soil it is grown in than from the spinach itself.
From haemochromatosis forums the deficiencies that crop up most commonly whilst having frequent phlebotomies are folate and B12. Likely because they are needed to make new red blood cells and you are doing a lot of that - the whole point of the phlebotomies. I don't know about other B vits whether that can be a problem too. There might be a testing bias as folate and B12 are more commonly tested. If you don't have enough of those you can become anaemic (sounds crazy to get anaemic alongside iron overload, but you can. You need the excess iron in your tissues to be used to make new haemoglobin and if you don't have enough B12 and folate that doesn't happen.)
From forums vit D deficiency crops up a lot as well but I don't know if that is because of the blood loss or more because of the relationship between Vit D and iron and if high iron drives down Vit D. So I don't know if the low Vit D would resolve itself once your iron levels are lower.
Drs usually aim to get ferritin under 50 or 100 for people with haemochromatosis, so use a narrower range than for the general public. Mine is maintained under 50 - I have phlebotomies when it goes over 50 and I feel fine on that. Some people feel better with slightly higher ferritin levels.
I don't know if any of that is helpful. I have a tendency to give too much info at times. Do bear in mind that what works for me may be different to you. It's a bit like comparing the regime of a type one diabetic to a person with a normal pancreas - they are not equal.
Hi Rachel, it’s not too much info at all. I tend to do the same. I did’nt realize it was non-heme iron that C effects. I suppose the heme is already easily absorb normally. Either case all the beef I’ve been eating didn’t help. Lots of good info, I may try adding turmeric into my diet.
My doctor just told me he doesn’t think my numbers are that bad, and he doesn’t recommend a phlebotomy. Which is very disappointing cause I’m not a candidate for donating. Probably have to just pay for random blood work. $$$
John your ferritin is much higher than the upper healthy range. If it was me I would question the doctor and demand that phlebotomies be done because based on the science you are well outside the normal range for both ferritin and iron saturation. The max ferritin should be is about 150, the max saturation should be is about 35%. Question him why why why and his ignorance or unwillingness to do what is science based will be exposed.
Quote from John on December 20, 2019, 4:44 pmHi Rachel, it’s not too much info at all. I tend to do the same. I did’nt realize it was non-heme iron that C effects. I suppose the heme is already easily absorb normally. Either case all the beef I’ve been eating didn’t help. Lots of good info, I may try adding turmeric into my diet.
My doctor just told me he doesn’t think my numbers are that bad, and he doesn’t recommend a phlebotomy. Which is very disappointing cause I’m not a candidate for donating. Probably have to just pay for random blood work. $$$
Hi John,
I agree with Tim that both your ferritin and T Sat are too high. Here are a couple of links that may be useful from the iron disorders institute. Maybe having something official looking will help your Dr.
http://www.irondisorders.org/forms/
Click to access HHC%20ALL2011.pdf
Click to access HHC%20FACT2010.pdf
The second two are 1 and 6 in the list of forms on the first link.
If you look at the chart with the flow diagram you will notice that it mentions vit C. It's not clear but I presume it means you should not supplement vit C for at least a week before doing the blood tests.
Also and this I believe is particularly relevant to you, if you follow the chart you'll see that where a person has had the genetic tests but have none of the common HFE mutations it still says to consider trial phlebotomy. So they are saying that even if you can't genetically prove that the person has classic genetic haemochromatosis, if their Tsat is above 45% and their ferritin is above 300 (for males) both of which are true for you then the Dr should consider removing some blood to see if it helps.
I am in the UK but I've linked to the Iron Institutes as that is an American organisation so will presumably carry more weight for your Dr.
I've not experienced this personally but from following others stories online it is not unusual to come across Drs who have very outdated information about iron overload. It is a much more common disorder than previously thought. Many believe you shouldn't bother with phlebotomies until ferritin is over 1000 which is rubbish. They also seem to think you can't get any liver damage until then which is rubbish too. That varies a lot from person to person. Having said that, although your Tsat is elevated, it is not way high yet and that is good. It is transferrin which keeps iron safely bound up and the higher the % the more unsafe unbound iron you have floating around which is the really damaging stuff. Many people don't get picked up until they have 100% saturation. So in the scheme of things, your ferritin and Tsat are higher than you would want them to be but not scary high. So if you have to use other methods to try to get your levels down, try not to worry about it too much.
It's a shame you aren't eligible to give blood but not much you can do about that. Definitely give turmeric a try. This is the recipe I use: https://www.turmericlife.com.au/blogs/recipes/turmeric-recipes-golden-paste
It's really easy to use and although turmeric turns everything yellow it does come out 🙂
All the best
Quote from tim on December 21, 2019, 12:21 amJohn your ferritin is much higher than the upper healthy range. If it was me I would question the doctor and demand that phlebotomies be done because based on the science you are well outside the normal range for both ferritin and iron saturation. The max ferritin should be is about 150, the max saturation should be is about 35%. Question him why why why and his ignorance or unwillingness to do what is science based will be exposed.
Hi Tim,
I probably need to find a new doctor. I’ve been through a number of doctors because of this. It’s an uphill battle. Many doctors don’t seem to like patients who bring up medical information that they’re not familiar with. They’re too use to being the one talking and the patient nodding their head in agreement.
I just had a video appointment with an online doctor who said I could make an appointment with a hematologists directly because he believes my numbers are bad. So that’s my next step.
Quote from Rachel on December 21, 2019, 6:55 amQuote from John on December 20, 2019, 4:44 pmHi Rachel, it’s not too much info at all. I tend to do the same. I did’nt realize it was non-heme iron that C effects. I suppose the heme is already easily absorb normally. Either case all the beef I’ve been eating didn’t help. Lots of good info, I may try adding turmeric into my diet.
My doctor just told me he doesn’t think my numbers are that bad, and he doesn’t recommend a phlebotomy. Which is very disappointing cause I’m not a candidate for donating. Probably have to just pay for random blood work. $$$
Hi John,
I agree with Tim that both your ferritin and T Sat are too high. Here are a couple of links that may be useful from the iron disorders institute. Maybe having something official looking will help your Dr.
http://www.irondisorders.org/forms/Click to access HHC%20ALL2011.pdf
Click to access HHC%20FACT2010.pdf
The second two are 1 and 6 in the list of forms on the first link.
If you look at the chart with the flow diagram you will notice that it mentions vit C. It's not clear but I presume it means you should not supplement vit C for at least a week before doing the blood tests.
Also and this I believe is particularly relevant to you, if you follow the chart you'll see that where a person has had the genetic tests but have none of the common HFE mutations it still says to consider trial phlebotomy. So they are saying that even if you can't genetically prove that the person has classic genetic haemochromatosis, if their Tsat is above 45% and their ferritin is above 300 (for males) both of which are true for you then the Dr should consider removing some blood to see if it helps.I am in the UK but I've linked to the Iron Institutes as that is an American organisation so will presumably carry more weight for your Dr.
I've not experienced this personally but from following others stories online it is not unusual to come across Drs who have very outdated information about iron overload. It is a much more common disorder than previously thought. Many believe you shouldn't bother with phlebotomies until ferritin is over 1000 which is rubbish. They also seem to think you can't get any liver damage until then which is rubbish too. That varies a lot from person to person. Having said that, although your Tsat is elevated, it is not way high yet and that is good. It is transferrin which keeps iron safely bound up and the higher the % the more unsafe unbound iron you have floating around which is the really damaging stuff. Many people don't get picked up until they have 100% saturation. So in the scheme of things, your ferritin and Tsat are higher than you would want them to be but not scary high. So if you have to use other methods to try to get your levels down, try not to worry about it too much.It's a shame you aren't eligible to give blood but not much you can do about that. Definitely give turmeric a try. This is the recipe I use: https://www.turmericlife.com.au/blogs/recipes/turmeric-recipes-golden-paste
It's really easy to use and although turmeric turns everything yellow it does come out
All the best
Hi Rachel,
Thank you for those links. Some very useful information. Yes unfortunately I have hep B and unable to donate.
I no longer have kitchen because I’m living out of a Cargo Van and haven’t built it out yet. Ive searched for 6 months for an apt with low enough magnetic fields and WiFi that I could tolerate but no luck.
I will have to look for good turmeric powder that is not raw and easier to absorb since it seems pill forms are not recommended by the recipe article?
I have the Pure Curcumin with the pepper. And was considering organic turmeric powder.
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