I've been trying to get my ferritin levels up, but I've hit a snag. Latest ferritin level is still only 41 but serum iron is 202 — too high. So I've stopped all iron supplementation, but find that even eating meat now results in flares of joint pain. I'm wondering what's preventing the iron from being stored as ferritin, and what I can do about it.
Already taking activated B12 + Folate + B6 lozenges. My doctor did not test my B12 level like I asked for, but instead tested Methymalonic Acid (128) and Homocysteine (11.8). Thank you in advance, feeling a bit desperate about what to do.
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ilyfunnybunny
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Low ferritin and high iron is possibly a result of having the MTHFR genetic mutation. It's very common - about 30% - 50% of the human race have it.
The first thing I should point out is that if you have this mutation then taking iron supplements is a very bad idea. Having very high serum iron is a very bad idea. Too much iron in the blood can deposit itself in places where it shouldn't be, like the brain, the arteries, the heart and other organs.
Having the MTHFR mutation means (as far as I understand it, which isn't much) that your methylation cycle is not working well. I'm afraid this is something that I don't feel competent to explain. But the good news is that getting it to work again may be as simple as avoiding folic acid and taking methylfolate instead. (In people without the genetic mutation folic acid converts to methylfolate. In people with the mutation this conversion doesn't work well so methylfolate must be taken directly.) It may also be necessary to avoid cyanocobalamin (one form of vitamin B12 which is artificial) and taking the active forms of B12 instead. These are methylcobalamin and adenosylcobalamin.
The other good news is that the dose of methylfolate and the active B12 vitamins doesn't have to be high - and in fact it is a good idea to start with low doses and build up. There can be side effects if your methylation cycle kicks off too quickly.
For more info on this problem start with searching for MTHFR and try and find out what you can. Worry more about understanding how to fix the problem rather than understanding the biology, at least to begin with.
Be aware that I have no medical training and I may have offered completely the wrong explanation for your problems!
Thank you! This is the only time anyone has even attempted to explain why this imbalance between ferritin/iron might happen, as well suggest some potential strategies for helping it.
I saw on one of these pages that taking hormone replacements can inhibit methylation — I don't have a thyroid gland anymore, so I'm on some form of hormone therapy for life. Since this is a thyroid blog, have you experienced/read about anyone else experiencing this problem, and how to make up for this chronic obstacle?
Someone had developed very high iron after being prescribed iron supplements for her low ferritin. She felt dreadful and eventually came off the supplements of her own accord. It was a different doctor who did a full iron status blood test and discovered that her serum iron had rocketed, while her ferritin had stayed low. Unfortunately, I can't remember who it was who had this issue. And at the time the person didn't know why the problem might have occurred. I did some research into the issue, and found out the stuff I wrote in my earlier reply. It isn't the only possible reason for high iron/low ferritin, but it is the most likely. I've seen a few others mentioning high iron/low ferritin since then, but I've never followed up with them to find out if they managed to fix their problem with the right supplements. (I don't have this problem myself - I struggle to get my ferritin and serum iron high enough. I take iron supplements every week.)
I suspect that the problem of high iron/low ferritin is far more common than people realise. But doctors will usually only test one thing to work out if someone is anaemic or low in iron. They test either ferritin, or serum iron, or haemoglobin (or a full blood count), and decide on the basis of that whether or not the person needs iron. But for the problem you have you need both ferritin and iron tested to know anything about it, and this is only done rarely by the NHS.
The thing that I find difficult to get my head round is the idea that people can have a genetic mutation but it isn't necessarily active. And genes can switch from being active to inactive and back again throughout life. This is a completely alien idea to someone like me who was brought up being told that genes are fixed and immutable and we are all at their mercy.
Have you ever watched Doctor In The House with Dr Rangan Chatterjee? In Series 2 Episode 2, one of the people being investigated was called James. It was discussed very vaguely, but it became apparent to anyone who has heard of it that he had a methylation problem, even though I don't think those words were actually used in the program. Giving him activated B vitamins fixed him practically overnight. But he didn't appear to have any other long term health problems, which I'm sure must have helped. I did read some comments on various message boards afterwards in which people who knew about methylation were disappointed with the lack of real explanation given for the guy's problems.
I finally found some answers to what I already suspected.
I have serum
iron 28 (norm 19-27, whatever units)
ferritin 13 (norm 30-200, lab units) (!!!)
all my other results look and around the middle of norms.
But the only thing my GP told me was to get me hi dose prescription of FeroGrad C, pointing the low ferritin.
But then when I had the papers in my hand, and looked at this high iron I started wondering 'hey, this is not right... why should I take iron if there is enough in bloodstream? is it not problem that my body cannot process it appropriately to ferritin?'
I got disregarded, yay ;(
Anyway, I started digging and found nothing (until now).
I suspected the MTHFR mutation and am testing on it now. (well, my brother has the mutation and me having autoimmune health problems in the past, it is highly probable I have something screwed there as well)
In the end, I did not start the iron supplementation, instead added some of the methyl-b12 and methyl folate, including the whole co-enzymated b-complex. I will see how I feel and if there is any improvement.
I am still trying to get more information on bio-chemistry of this whole process and link between iron, vit b12, folate and ferritin creation, writen in understandable language.
If you have some sources you could recommend, I will appreciate it.
I cannot help you I'm afraid but please, would you help me if you find an answer? I don't know my iron levels but like you cannot raise my ferritin levels, they are bottom of the range after 2.5 years of prescribed ferrous ferritin with no apparent cause.
I was just searching the forum as my last blood test showed iron at the high end (following supplements) but ferritin still toward the lower end. I have the MTHFR gene variation and having investigated a bit more apparently iron requires different trace elements to enable itself to be used properly. I’m still reading about it but apparently molybdenum may help iron to transfer into a usable form (and also into ferritin).
By the way, MTHFR can also raise homocysteine as it should turn into methionine and then be excreted (if I remember correctly). Homocysteine should be under 10.
I hope you have been able to improve your numbers since this last post?
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Low ferritin, high iron
High end iron, low ferritin...
Hypothyroid - low serum iron and saturation, but normal Ferritin
Guidance re: unusual iron/ferritin results, please
Low ferritin, need iron infusions. Also have high Vit D.
