Very high B12 folate

Blood tests have come back with B12/folate level at 4.9 & serum at 1936 ng/L. Dr says all results are fine and I obviously do NOT have a deficiency. Despite my careful explanations AGAIN of how my body might not be using the B12 because it cant get hold of it from my blood he thought that was ridiculous.Discussions ensued,  I asked if he would refer me for an MMA test ( methylmolonic acid test) he said he had never heard of it and wouldnt ask for a blood test that the local testers didn't do, it wasn't in his remit. When I went through all my symptoms again and asked why he thought I had these , Dr put my symptoms down to  chronic fatigue syndrome if anything and  did I want to join a group of like sufferers, if I wanted to look into blood tests of other I would have to do so privately. So does anyone know where I can get MMA tests privately ? 

Dr i

19 Replies

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  • Im sorry, if my gp suggested that to me i would go and all i would see are all these other people who potentially suffered with b12d and hadnt been diagnosed correctly.

  • Exactly and we would talk about symptoms and go around in circles!

  • Hi,

    Have you been taking B12 supplements prior to your blood tests? Some people get high levels of B12 in their blood when they start to supplement, my levels are probably well over 2000. If you are not supplementing B12 then is the GP investigating why your B12 level is high?

    I read that high b12 levels can be associated with some diseases.

    ncbi.nlm.nih.gov/pubmed/146...

    I am not a medic just a patient who has struggled to get a diagnosis.

    Have you ever had thyroid tests? Thyroid problems and B12 deficiency can occur together.

    thyroiduk.org.uk/tuk/

    "Dr put my symptoms down to  chronic fatigue syndrome "

    My personal opinion is that once a person gets  a label of ME/CFS investigation tends to come to a stop.

  • Yes I was taking B6 supplements from November to March 2016 as I was desperate to do something about the symptoms I have been  experiencing for a few years, B12 levels were at 448pg/ml in November 2015. However the supplements have not made any difference to symptoms, I had private thyroid blood tests a more than a year ago which were ok , Dr has made it clear that he wont investigate further as he only has his guidelines to go by which I suppose has empowered me a bit, just need the energy to get on with the search ! 

  • Frustrating.  CFS is really just a label for a group of symptoms - which do read like B12D... but the causes are unknown and treatment is very hit and miss.

    nhs.uk/Conditions/Chronic-f...

    Can't help feeling that giving CFS as a diagnosis is smoke and mirrors - GP feels that you are ticked off the list by giving you a label and sending you somewhere else but ...

    Your folate level isn't brilliant.  And the supplementation does make everything more difficult.  Guessing that other possibilities like thyroid have been ruled out though from other posts I get the impression that the tests for thyroid aren't as specific as GPs might like to believe.

    Sorry but I'm not aware of any private sources for MMA - though sure that a private health provider would be quite happy to charge you an arm and a leg for it if you contacted them

  • Thank you Gambit I have sourced the MMA testing -  Blue Horizon but looking to see if via path at St Thomas can help.

  • CFS is not a diagnosis,  it's a symptom of an underlining cause. The high serum level in your blood is made up of approx 80% inactive B12 and only 20% active. If you've been taking supplements this will increase your serum level but your symptoms will continue to worsen. Folate is needed to activate the B12 and in my experience GP's are not aware of this and are happy to remain ignorant to B12 deficiency and are quite happy to dish out antidepressants, painkillers etc like sweets, hence keeping the pharmaceutical companies happy! It's worth informing him that a low folate result will falsley increase the B12 serum.  I'm no doctor but have thoroughly researched this condition.  After being diagnosed with PA 20 years ago I deteriorated greatly on 12 weekly injections so took my condition into my own hands as I  my experience doctors just don't understand it.  They're *general* practitioners after all...........

    Your doctor should also be looking  at your full blood count as this will tell him more and he should be treating your symptoms not your levels. He should also test your intrinsic factor and parietal cells to test for PA although this is only 40% accurate.  Failing that he can refer you to St Thomas in London for an active B12 blood test and you have to pay (it's not that much, about £20 (I could be wrong). There are other labs that carry out the MMA test but I'm not sure where.

    He should also check your iron and your Vit D as all symptoms mask each other. There is a Facebook support group (pernicious anaemia / B12 deficiency), which haversion an excellent administration team who give out fab advice. I'm where I am today from their advice and I treat myself (inject) and have never felt so well.

    If you're not on Facebook,  it's worth joining just for that support group alone and remember your doctor has a duty of care to give you the correct treatment and I would be writing a letter to the office manager and him confirming this has holding him/her personally responsible for any deterioration of your health.

    Good luck

  • Thank you for the information, I couldn't face that Dr again but will certainly be considering your advice, by the way I had low vit D in November and was advised to take supplements so have been but he Dr yesterday  poo hooed me taking supplement for vit D saying half the population are low on vit D this time of year and it certainly has none of the adverse affects you are describing, my iron levels to him were normal. I know I have to take the matters in my own hands, I have seen 3 seaparate Drs at that practice so far I am just hitting my head against a brick wall by going. 

  • If you ask your practice manager what the protocol is for your surgery this may help you decide on your course of action.  You can also request a referral to a haematologist but get your Active B12 test and all the other blood tests suggested by Kazza144 done before hand - or ask the consultant to do these when you see her.  You will probably find, as I have, that the surgery and consultant use the same parameters, ie, 6 loading doses followed by three-monthly injections, or two-monthly in the case of neurological symptoms (this latter protocol goes against all current advice).

  • The low vitamin D will give you fatigue and it takes ages to raise, mine was 30 in September 2015 and with supplementing 5000 in a day is now only 65 and ideally its is good to be 100. Unfortunately I can't say it was totally responsible for my fatigue as I was also b12 deficient............just type MMA test in Google and you will get a list of places MMA test are available from.......costs just over £100......I believe GPs have a little knowledge about everything but not enough specific subject knowledge and we have to take charge of our own health as much as we can.

    I took matters into my own hands and started with a comprehensive blood test which tested about 40 things for £150 with bh. This showed many things that GP did not test for.

  • Thank you  Dave -  I will get the ball rolling as soon as I recover from the Drs visit yesterday ! 

  • Look how foggy my brain is - wrong reply & I know that's not your name 😱

  • I had my MMA, homocysteine and active B12 done at St Thomas's.  The first 2 are really important in my opinion and will give you a much clearer picture of where you are. 

    Vit D3 should be taken with K2. Magnesium, Epsom salt baths also good. 

  • I am not a medic but have suffered with this condition for over 5 years. I also think your problem might be your low folate. Surely that is below or at the bottom of the range. It needs to be constantly above 15 to make best use of your b12. I have severe neurological problems caused, I believe by folate levels being low over many months. Do speak to your doctor about this. The recommended dose is 5mg a day for at least 4 months but must not be given if b12 is low without also supplementing with b12.

  • Do not take Folate until you have had your B12 tests as it will skew the results

  • My doctor told me she was discontinuing my injections (after just the loading dose!) following a blood test with 'high' B12 levels, despite my worsening symptoms. 

    I printed out the NICE guidelines for B12 deficiency and took them into an appointment with her, specifically highlighting the part where it says 

    "seek urgent specialist advice from a haematologist if the patient has neurological symptoms" 

    and 

    "if specialist advice is not immediately available, administer hydroxycobalamin 1mg intramusclularly every 2 months"

    (This information should also be available in your GP's British National Formulary (BNF), which you can ask him to consult)

    Neurological symptoms include 'brain fog' (any confusion, loss of memory, difficulty concentrating), parasthaesia (pins and needles), peripheral neuropathy (numbness in your fingers, hands, toes etc.) - if you have ANY of these symptoms your doctor is INSTRUCTED to refer to you a specialist. 

    The British Committee for Standard in Haematology guidelines are similar - noting that "serum levels are not a gold standard" for measuring B12 deficiency and that treatment of clinically presented symptoms is "equally important"

    My GP relented on being provided with this information and referred me on.

    (also make sure your GP knows that you've been taking supplements, as that will allow him to interpret your blood test better, as your levels are artificially high - although the NICE guidelines do point out that ongoing blood tests of a patient who has begun treatment are "unnecessary")

  • Thank you 

  • As far as I know MMA and homocysteine levels will be reduced by supplements. Others have reported they thought they wasted their money but they may have injected. Ask St Thomas how long you need to stop before the test if doing active B12.

  • Link about Active b12 test

    active-b12.com/frequently-a...

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