Pernicious Anaemia Society
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ME/CFS or B12 Deficiency

Hi all

I have been in very poor health for over a decade now and received a diagnosis of ME/CFS nearly three years ago. I have lost a career, friends and any real social life due to my poor health. The illness and its symptoms have developed slowly over time, but now I am less than half the man I was. Before getting ill, I would run several miles a number of times a week, I played squash, climbed mountains in the Lake District and cycled a lot too. Now a walk to the shops or around a park is an ordeal when my symtoms flareup. However, i am not a quitter, and research my symptoms often in the hope of finding help.

I have been looking into B12 deficiency for a while now, and have to say that a lot of the symptoms match mine. for example; weakness, fatigue, palpitations, pins and needles in my hand, tinnitus, breathlessness, sleep disturbance, anxiety, depression (taking antidepressants), pain in many parts of my body, dizziness (almost fainting), brain fog, visual disturbances including Retinal Vein Occlusion (treated with injections into the eye) Hypertension (Lercanadipine, Bisoprolol, Asprin). The list goes on.

I eat reasonable well including meat, fish and dairy. I have been taking over the counter vitamin supplements everyday without fail for two years now. Including vitamin B12 (8.6ug - 344%NRV)

I recently did the Bluehorizon Medicals Active B12 test and got a result of 45pm0l/L (25.1 - 165.00)

I understand that this is within what is considered to be a normal range and that the general view is that 35pm0l/L is the cut off point for B12 deficiency, but I would really value your opinions on this guys.

My question is - should I go back to my GP with this result and what should I ask him to do. Also, has anyone on here had a similar result to mine along with similar symtoms.

Thank you

Paul

9 Replies
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Sorry, I forgot to mention. I also had a CT Headscan followed by a MRA scan. Both confirmed lesions on my white brain matter. My GP was not really concerned about that though. I also suffer with sever full body Hyperhydrosis. Not sure if thats relevant.

Thanks again folks

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If you go to your GP with your active B12 result then they will, correctly, tell you that your levels are fine.

That doesn’t mean that you don’t have a functional deficiency, where there’s plenty of B12 in the blood but it’s not working properly in the cell.

Two of the reactions that B12 are an important part of convert the chemicals methylmalonic acid (MMA) and homocysteine (hCys) into other products. In a functional deficiency one, or both, of these transformations can’t take place properly and the blood levels of MMA and/or hCys will increase.

You could try asking your GP for these tests, or you can, I believe, get them done privately.

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Hi , all your symptoms definitely seem to match PA , b12 deficiency . Did you take supplements including vit b12 before your blood test ? I’m asking as this can skew results and although result in range , could be false result , I’m sure others will be along soon to advice more clearly . It would be worth stopping taking supplements containing b12 and get re tested in few weeks or so . Have you had your thyroid checked .? My husband had all of your symptoms and since regular b12 injections he is a lot better but long way to go . Also be worth having full blood count and definitely need ferritin level , folate level checked . I hope you get some help soon . His fainting reduced when his ferritin level was raised with meds . Good luck

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I’d like to add that many people have been misdiagnosed with ME as symptoms mimic B12 deficiency , Also ME patients can benefit from regular b12 injections , there is an article about the link I hope someone can post as I have limited IT skills .

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Just noticed a huge post by Sleepybunny about 6 days ago about b12 / ME/CFS , just scroll down , Exellent posts 😀

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The complete testing for the Thyroid is TSH - FT4 - FT3 and Thyroid anti-bodies TPO & Tg. It seems the NHS thinks testing the TSH only is adequate - sadly not - it is a Pituitary Hormone. There are iver 300 symptoms linked to the thyroid and T3 - the active thyroid hormone us needed in every cell of the body. Private Testing used by thousands is available in the link below - click onto - About Testing

thyroiduk.org

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Thank you for all your replies and advice so far. Does anyone have the link re B12 injections helping with ME please. Thanks again

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pgw1000, I think this might be the link you're looking for:

healthunlocked.com/pasoc/po...

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Thank you Tricot.

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