A Haematologist appears to have ignored my recent blood test results after I went to see him in the belief my serum iron is too low but ferritin levels are above reference range. I do not understand the implication of this nor the impact of ferritin upon iron levels. I went to see the Haematologist for an assessment for a second iron infusion as I struggle to absorb iron orally with hypothyroidism, pernicious anaemia, and bile acid malabsorption. My first iron infusion was a year ago but prior to this I was iron deficient for decades.
The majority of my latest iron studies results are reasonable except my serum iron level is 10umol/L (9-30), serum ferritin is 350ug/L (30-250) following an iron infusion a year ago and transferrin saturation index 19% (15-50). I went to the Haematologist to discuss the return of my iron deficiency symptoms and was recommended a scan of my liver to explain raised ferritin levels, which subsequently excluded a fatty liver being the cause of my raised ferritin blood test results. The haematologist emailed me that no action was needed and I do not understand this. I still believe I am iron deficient.
As I have Pernicious Anaemia, Hypothyroidism, bile acid malabsorption and believe that inflammation can also raise ferritin results which would be no surprise. I want to know if I can safely re-start iron tablets because I do not understand the role of ferritin in relation to serum iron levels.
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yorkshiregirl4
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My ferritin test result was from 24.9.2024, less than a year following my iron infusion.
On 22.9.2024 my CRP result was 8.5mg/L with a reference range of 0-5 with a comment attached that it was raised above reference range but on 20.9.2024 my CRP was 5.7mg/L with same reference range. These results have never been discussed with me and I had not "joined up the dots" until your recent comment. Do you think this needs to be discussed with my GP? Bearing in mind I do not understand the role of ferritin in relation to serum iron deficiency do you agree that my iron levels are unacceptably low from the information I have provided? Many thanks for your kind assistance.
Many thanks indeed SlowDragon. I will get these blood tests organised as soon as I can. Thank you to yourself and fellow Administrators for this invaluable service to the growing number of people benefitting from your advice. Much appreciation to all.
Sorry, I think I misunderstood your questions. I receive hydroxocobalamin injections, as NHS patients in the UK are given these injections. As far as I am aware there is no choice and like most patients I stick with hydroxocobalamin. Methylcobalamin is generally used in the USA and is sometimes bought privately as a powder in the UK and mixed with saline, I understand, but I use hydroxocobalamine. I also take methyl folate, Jarrow Formulas.
Hello, My MCV is 98.4fL with reference range of 75-105fL. I have B12 injections only and no B12 pills or tablets. I also believe I could be iron deficient, possibly without anaemia.
Ferritin is a measure of your iron stores. In a healthy person ferritin and serum iron would convert from one to the other, in either direction, as and when needed for different purposes.
This is an old, short, but useful article on ferritin :
Serum iron is a measure of your Free Iron in your bloodstream that is immediately available. Too low OR too high a level will make you feel terrible. If serum iron becomes too high it can start to deposit iron in soft tissues and organs, and that causes a lot of health problems and pain.
MCV (Mean Corpuscular Volume or Mean Cell Volume) tells you the average size of your red blood cells (RBC). In iron/ferritin deficiency your RBCs are too small i.e. MCV is low. In B12/folate deficiency your RBCs are too large i.e. MCV is high. In both cases the RBCs are unable to transport oxygen around the body as effectively as needed for good health, which is one reason why low levels/anaemia causes breathlessness. If someone has low levels of iron/ferritin AND low levels of B12/folate MCV is possibly going to be misleading.
Your MCV is quite high in range suggesting that your B12/folate are too low, but it tells you nothing in your case about your iron/ferritin.
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Bear in mind that I don't have Pernicious Anaemia (PA).
I have read that people with PA don't have their B12 measured either in serum testing or active testing because the injections they get make the results pointless. I've also read that in the UK the NHS is very mean with their injections, and that the injections used contain Hydroxocobalamin (Hydroxo-B12). This is an inactive version of B12 and it has to be converted to Methyl-B12 and/or Adenosyl-B12 which are both active forms of B12. I doubt the NHS has ever wondered about conversion from inactive to active, and has no idea who might be good converters and who might be bad converters.
I did read that Hydroxo-B12 was used for injections because it "disappears" or gets used up or excreted more slowly than the active forms of B12. I would guess that is related to the conversion issue, but I'm not sure. I was under the impression that Cyano-B12 used to be used in the USA because it disappeared more slowly than any of the B12 forms. I didn't know they had switched to the Methyl-B12 form.
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For the body to make use of the B12 it has it needs folate. The best form of folate is methylfolate. Folic acid should always be avoided.
Methylfolate is a methyl donor. (There are others - methylfolate isn't the only one). The methyl part is really important. People who have poor versions of MTHFR genes can't methylate efficiently, and they end up with too low a level of methyl donors. The methyl donors are used in many, many processes within the body. This can affect converting folic acid to folate, inactive forms of B12 to the active forms, and it can also affect, in some way I don't understand, the conversion from ferritin to serum iron and back again.
One study found that people who were homozygous for MTHFR 677TT had an elevated copper-to-zinc ratio and a higher risk of over-methylation. High levels of free copper are also noted in those shown to be over-methylating, which may lead to irregularities in thyroid function, adrenal hormone production, and lower histamine levels.
I have no idea if I have dodgy MTHFR genes because I've never bothered testing, but I think I probably do. When I tested zinc and copper I had over the range levels of copper and low in range zinc. I am hypothyroid and I have high cortisol.
At the moment you have over the range ferritin and low levels of serum iron. If you started to take iron supplements you will probably find your serum iron stays low, and your ferritin just gets higher. To alter the ratio of ferritin to serum iron you might need more methyl donors, but I'm making no promises.
Supplements that are methyl donors, all available online without prescription :
I am not very familiar with the last three although I have taken the last two. It was years ago though, and I don't remember much about them.
I would suggest the following :
1) Aim for a level of folate of about 20 micrograms/L. Take methylfolate and experiment to find out what dose you need to have a level of 20 mcg/L. I take 1000mcg methylfolate 2 or 3 days a week. But this might be too much or too little for you. The body doesn't store folate so it is needed in the diet or in supplement form regularly.
2) In between your B12 injections try taking methylcobalamin or a combo of methylcobalamin and adenosylcobalamin. As someone without PA I aim for a level of 1000 micrograms/L. You would have to experiment.
4) Watch out for over-methylation, which is mentioned in some of the links earlier in this post. It is described in the link with *** next to it.
Be aware that I'm NOT a doctor and have never had any medical training. Please do your own research on the things I've mentioned. None of them require a prescription, and at sensible doses are not harmful. Anything new to you should be started at a low dose and dose should be increased over a week or two.
Goodness me! That is a lot of information. I am very grateful for your advice and realise that this has taken a lot of your time to send to me. Thank you.
When I was first diagnosed with B12 deficiency I tried methylcobalamin sublingual tablets but also had very severe stomach issues too that I thought could be down to these tablets. However they did work pretty well apart from stomach issues. On one occasion I bought cyanocobalamin by mistake and it was as if I had never taken anything at all. They had no positive impact at all. I do not know what percentage of patients in the USA receive methylcobalamin but know it is available on prescription in a number of States, which appear to operate independently anyway.
I have just read your mentioned article about ferritin and also noted your comments about dodgy MTHFR genes. I am a very poor converter for T4 to T3 too, and have raised cortisol levels. I wonder if I am also a poor converter of hydroxocobalamin to methylcobalamin. Yes, you are correct that people receiving treatment for pernicious anaemia do not have blood tests to check levels of cobalamin because that would only measure the amount in their blood and it takes much longer to get that into their cells where the improvement starts, sometimes many months later.
I have found your comments thought provoking and it is always useful to keep an open mind and keep learning. I will read your other links later but am also considering some methylcobalamin instead of or alternating with hydroxocobalamin. Many thanks for your kindness.
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