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B12 and folate deficiency

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by tinacarroll27, Oct 14, 2016.

  1. tinacarroll27

    tinacarroll27 Senior Member

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    Hi all! I have just returned from my GP (I live in the UK) and my GP has just told me they need to do more blood tests for B12 and folate as one of my blood test came back abnormal (my red blood cells were a little large) and they are now going to test me for B12 and folate as they other causes (liver and thyroid were normal). Is B12 and folate deficiency something people with ME/CFS are prone to develop? I know we can benefit from these supplements but I thought all the tests came back normal!
     
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  2. charles shepherd

    charles shepherd Senior Member

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    Tina

    We have a new MEA information leaflet that covers all aspects of vitamin B12 and ME/CFS - causes of B12 deficiency, symptoms, blood tests, treatment, research into the possible link to ME/CFS >>

    COULD VITAMIN B12 BE A SAFE AND EFFECTIVE FORM OF TREATMENT IN ME/CFS?

    New leaflet from the ME Association in which Dr Charles Shepherd explores the evidence base.
    Now available for in the MEA website literature shop:
    http://www.meassociation.org.uk/sho...12-be-a-safe-and-effective-form-of-treatment/

    Summary of the key points in this new MEA leaflet:

    Although some people with ME/CFS report that vitamin B12 injections have been helpful, there is no robust scientific evidence to currently demonstrate that vitamin B12 deficiency occurs in ME/CFS

    And there are no results from clinical trials to indicate that vitamin B12 injections are a safe and effective form of treatment for ME/CFS.

    If people are going to take vitamin B12 it is very important to make sure that pernicious anaemia (PA) has first been excluded. PA is an autoimmune condition that results in decreased absorption of B12 from the gut - hence the need for injections.

    Excluding PA is important because PA can cause very serious neurological complications (ie sub acute combined degeneration of the spinal cord:https://medlineplus.gov/ency/article/000723.htm) if not properly treated.

    The final point is that the MEA Ramsay Research Fund is keen to investigate the possible role of vitamin B12 in ME/CFS

    So we have had some preliminary discussions regarding a small clinical trial involving B12 therapy in ME/CFS.
    Also worth noting that vitamin supplements are not recommended in the NICE guideline on ME/CFS. So most doctors are going to be reluctant to prescribe vitamin B12 injections to people with ME/CFS - unless there are sound reasons for doing so

    Also worth noting that what NICE regard as inappropriate prescribing of vitamin B12 has led to a GMC investigation:

    http://www.sunderlandecho.com/.../doctor-banned-from

    There is also a discussion on this subject currently taking place on the MEA Facebook page:
    https://www.facebook.com/ME-Association-171411469583186/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  3. mermaid

    mermaid Senior Member

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    I believe that the reality is that some people (ME patients among them) are probably low on Vit B12, so it is well worth having it checked out. It is also believed (by people who know what they are talking about - ie other than me), that the ranges are set too low in this country (and others no doubt), and that you can in fact be declared 'normal' and yet be only just 'in range' and get permanent neurological damage at that low level.

    The other thing is that I understand from reading B12 forums, that even if you are diagnosed with pernicious anaemia, that the injections that used to be given every month I believe, have now been extended sometimes to 2 or 3 months, even though injections of B12 are not expensive. Some of these people feel very ill by that time. Yet another NHS scandal of our times.
     
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  4. Mary

    Mary Senior Member

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    The NICE guidelines also state:

    I would not follow NICE guidelines for ME/CFS treatment.

    @tinacarroll27 - There is evidence that B12 can help some people with ME/CFS:
    http://www.drmyhill.co.uk/wiki/B12_-_rationale_for_using_vitamin_B12_in_CFS
    https://www.ncbi.nlm.nih.gov/pubmed/25902009

    And no, all the tests don't always come back normal. Often people with ME/CFS have high B12 on blood work because it is not being properly used by the cells. So the numbers can be misleading.

    It is good your doctors are doing more checking. Large red blood cells are often an indication of B12 and/or folate deficiency. My MCV (mean corpuscular volume) number was high-normal, near the top of the normal range, and I found that when I started taking folate (had already been taking B12 for years), my energy markedly increased. I also discovered I had to start taking potassium as well. If you start B12 and/or folate, this can cause potassium levels to tank because your potassium need can increase as cells start to divide and work as they are supposed to. There are many threads on this board about B12 and folate, and potassium.

    Injections can be effective, if you do enough of them. I used to do B12 injections 3 times a week and noticed no difference. It wasn't until I started taking liquid methylcobalamin (5000 mcg.) 2 to 3 times a day that I noticed a difference. Also, if you take folate you have to take B12 as well because folate can mask a B12 deficiency.
     
  5. ahmo

    ahmo Senior Member

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    B12 and folate are central to methylation protocols. There's a section in the forums for methylation. Getting my B12 levels up resolved my insomnia and neurological symptoms. There's a link to Methylation for Dummies in my signature. Also several links to Freddd's Protocol, a roadmap a number of us have used to correct methylation. Also linking 2 resources on B12 deficiency. The first, a vid, is well worth viewing. good luck.


    Diagnosing and Treating Vitamin B12 Deficiency‬


    http://www.b12deficiency.info/
    This site was created as a hub to bring all the key websites on vitamin B12 deficiency together in one place.
     
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  6. charles shepherd

    charles shepherd Senior Member

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    Mary

    For the sake of accuracy and clarification - in case you (and anyone else) are not aware of the MEA position on the 2007 NICE guideline on ME/CFS:

    We regard this NICE guideline as being unfit for purpose and have been playing a leading role in try to get it revised for the past five years:

    http://www.meassociation.org.uk/201...statement-by-the-me-association-10-july-2014/

    My reference to the NICE guideline was included in order to explain why most doctors are reluctant (or refuse point blank) to prescribe vitamin B12 injections to people with ME/CFS, and why the GMC have intervened in one particular case

    But there are a few exceptions….

    CS
     
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  7. Mary

    Mary Senior Member

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    I'm really glad you're trying to get this guideline repealed. But it doesn't explain why doctors are reluctant to prescribe B12 injections - there is evidence that B12 can help some people. However, if they're afraid of running afoul of the GMC, than that would explain why they are reluctant to use it, although that's truly terrible. However, I don't see any explanation of why the GMC is so opposed to B12.

    B12 is cheap. It doesn't have bad side effects, there's evidence it's helpful. It's much safer than anti-depressants which doctors tend to hand out like candy. So I truly don't understand what is the objection to using B12 or why the GMC intervened. I followed the link you provided, and it says that not only was Dr. Chandy prohibited from prescribing B12, but actually prohibited from even TESTING for B12 deficiency. it's insane.
     
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  8. charles shepherd

    charles shepherd Senior Member

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    Mary

    I'm not sure if you live in the UK

    If you do, it's important to know that while doctors are still allowed to use clinical judgement in relation to how we manage and prescribe for specific conditions, life does become much riskier from the medico-legal point of view if we prescribe a drug that is NOT recommended by NICE for that condition and something then goes wrong (e.g. a serious adverse reaction)

    In this situation the doctor would then be on very uncertain ground if the patient made a legal claim - and there are plenty of lawyers around to help here! -

    In addition, we have been warned about this sort of situation by our medico-legal defence unions - who now take a large chunk of our income each year thanks to theorising number of negligence claims

    So, out in the real world, it's not surprising to find that docs are becoming very reluctant (or refuse) to prescribe drugs or supplements/vitamins etc that are not recommended by NICE for a specific condition…..
     
  9. Mary

    Mary Senior Member

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    I don't live in the UK and am very sorry to hear that. Though I have yet to hear of any serious adverse reaction from B12, apart from potassium levels which can drop rather quickly as the need for potassium can increase very quickly when starting B12 and folate.

    I live in the U.S. and always think of it as the most litigious country in the world, but I have seen what happened to Sarah Myhill and others. I still don't understand why the GMC prohibits even TESTING for B12 deficiency - that makes no sense whatsoever and patients can only suffer as a result.
     
  10. charles shepherd

    charles shepherd Senior Member

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    Mary

    Can I assure you, and everyone else, that the GMC has NOT sent out an instruction to UK doctors that prohibits us testing our patents for vitamin B12 deficiency

    That would be medical negligence!

    CS
     
  11. Valentijn

    Valentijn Senior Member

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    From NICE regarding ME/CFS:
     
  12. charles shepherd

    charles shepherd Senior Member

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    I do not agree with the guidance on B12 testing that is in the NICE guideline

    But this is not the same as saying the GMC prohibits doctors from testing for B12 deficiency
     
  13. charles shepherd

    charles shepherd Senior Member

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    From the new MEA information leaflet on Vitamin B12:

    HOW IS VITAMIN B12 DEFICIENCY DIAGNOSED?


    Vitamin B12 deficiency results in the bone marrow producing abnormal blood cells that are larger than normal – megaloblastic cells – and do not work as efficiently as normal red cells. The resulting anaemia is called a macrocytic anaemia.


    A vitamin B12 blood test measures the total amount of vitamin B12 – active and inactive - in the serum (the liquid part of the blood). If a significant amount of vitamin B12 is inactive in the blood, this can cause a misleadingly normal result. So there is a weakness with the current blood test as it is not measuring the actual level of active B12 in the cells in the body. Second line tests, where use and availability are limited, include plasma methylmalomic acid and plasma homocysteine. Testing for intrinsic factor antibody can help to confirm the diagnosis.


    The level of folate is also usually checked at the same time for the possibility of co-existent folate deficiency anaemia.

    FURTHER INFORMATION ON VITAMIN B12 AND PERNICIOUS ANAEMIA:


    ·This NHS guideline describes how people with a blood test which indicates varying degrees of vitamin B12 deficiency should be assessed and managed:


    http://www.ruh.nhs.uk/For_Clinician.../B12_-_advice_on_investigation_management.pdf


    ·Lab tests online information on vitamin B12:


    http://labtestsonline.org.uk/understanding/analytes/vitamin-b12/tab/glance/
     
  14. erin

    erin Senior Member

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    In real world cheap injection of vitamin B12 with no side effects does not produce large benefits for the multinational big pharma. But the candy is good business for them. Feeling down? No tests required to prescribe candies, just feeling down is enough. Hence, candy is expensive,I mean costly to the NHS and has many bad side effects.
     
  15. Timaca

    Timaca Senior Member

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    This video is frightening! Thanks for posting this!
     
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