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Sudden high Folate levels - what could this mean in relation to B12?

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tracey51815
tracey51815

Hello everyone

I have posted previously and have this morning received my blood results showing from September when I last had a blood test an increase of my B12 from 282 to 358 good I thought but (could this be because Ive been taking 3 days of Ultra Vitamin B  (50 ug) includes 200 ug folid acid??) in addition to eating eggs etc (I am usually vegan) Doctor says if I had PA no tablets would increase the levels - is this true?  I tried to get re-tested today after stopping the tablets 3 days ago as I felt awful (thought I was reacting to the tablets) but my doctor wont retest me due to the cost to the NHS!   However my FOLATE levels in September were 12.0 (in a range of 3.1 - 20.5)  they are today  36.1 ug/L using the same range.  Again could this rise be just down to 3 days of supplements?  I am panicking now as Ive read on line high folate levels can mask true B12 levels in a blood test.  I am trying to get privately the tests re-done to include methylmalonic and homocysteine to give abit more info about what is going on.  Not sure whether Ive had an abverse reaction to the 3 days of supplements but numb foot which started 4 months ago - (I was taking the high dose pills then and have done sporadically since) has worsened but worst than that the last 3 days Ive not slept, had horrendous anxiety and aggitation, pacing, trembling and flicking of muscles all over body - particularly in the back of legs, confusion, writing and speaking wrong words, high blood pressure, nausea, sensitive tongue. None of this is like me and Ive NEVER had it before.  Waiting for doctor to call me back about FOLATE readings but when she handed me the read-out this morning she didnt even comment even though there is a star next to the reading to investigate!   Given the length of time private blood tests will take I am inclined to try 1000 mg of Methylcobalamin because Im terrified to try a B12 shot given my reaction to lots of drugs, preservatives and dyes which have landed me in A&E with terrible rashes, sensory reactions.              Many thanks  Tracey

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  • chris27080
    chris27080 tracey51815

    Posted

    I think the urgency thing in relation to neurological symptoms  is that they should not be ignored and allowed to progress and that at one time that meant injections. That won't reverse the damage any faster but the initial booster shots may raise the apparent but not needed forms faster. One reason is that the body is designed for tiny intakes, and sure one might pig out on a buffalo one time and store some for winter, but there are a lot of steps involved in using it that can be rate substrate and cofactor limited. Nerve healing is not instant.

    The traditional view was that the only b12 issue was pernicious anemia  and a concern that folate supplementation might mask the anemia and the neurological part. Most drs will follow medical association guidelines as to limits and dosage based on this.

    However this ignores research since fifty years ago and functional deficiencies. That is because one form is available to be measured that does not mean the other forms are available for use. Normally 5 forms are acknowledged however more specialised research shows that both methyl and adenosyl cobalamins have to be turned into other forms before they can be used. A stress load amongst other things could interfere with that. It is also not uncommon that some people can't use the cyano cheap form often found in supplements.

    I don't want to harp on this but there is a UK guy offering therapy for CFS  based on NLP in part but more on that the primary brain alarm filter becomes hypersensitised and patients become hypervigilant of possible symptoms. He has published in medical hypotheses I think and done a trial report. I think he also offers a dvd type course. The reason I mention it is not that it applies specifically to you but I am familiar with the area.

    Yes it can be a pain dealing with medical issues and practitioners. Tee hee.

    One has to become informed bearing in mind that the research and knowledge is not definitive and one can easily be wrong, as well as not suitably deferential.

    Getting some base tests done is a good idea but ultimately the test is what works for you.

    Have fun.

  • tracey51815
    tracey51815

    Posted

    Another thing that confuses me - my neurologist says if I was suffering from B12 deficiency I wouldnt have numbness just in one foot - I would get in both feet and probably hands.  Anyone able to comment from personal experience??

    many thanks    Tracey

    • marion29181
      marion29181 tracey51815

      Posted

      Hi again Tracey, glad to hear your GP is a bit more clued up about B12 deficiency now. My numbness is always worse on the left side, I am left handed, so whether this is a factor I don't know. My left hand, and left side of that left hand, plus my left foot and lower left leg ( up to the knee) seem to be the areas most effected. Sometimes, when sitting, both feet go numb. It is less common that the lower part of my right leg is effected. I have had migraine headaches since I was in my teens, I get the same numbness in my left hand with those, plus one side of my face has gone numb at times. Best wishes Marion 
    • tracey51815
      tracey51815 marion29181

      Posted

      Hi there Marion.  Many thanks for replying to my message.  What you say is very interesting.  Ive only had the numbness/pins and needles in my left foot - no where else.  That is until I took the B12 pills and it then appeared in both feet - how odd is that!  Just hoping its the nerves waking up.  Ive just taken another pill so fingers crossed.  Yes I too have had migraines since I was in my teens;  they tend to be hormonally related but also get them if very stressed or drink wine (rose is ok though in small measures!)  Ive not experienced numbness with migraines although Ive heard this is not uncommon.  Migraines are ghastly - I get the pain in my left temple and to the right of my left eye....not nice.  Imigran takes care of them but that makes me feel weird - better that than a migraine though!!   Hope you are having a nice weekend.  All the best Tracey
    • marion29181
      marion29181 tracey51815

      Posted

      Hi Tracey, yes a good weekend thank you, we had lunch with our youngest son and his Spanish girlfriend. Richard had cooked us a lovely Lancashire Hotpot! Getting ready for bed now, feeling quite tired and foot going numb. I think that a lot of these symptoms get worse if we are tired or stressed. I also have read that the healing process can make the symptoms worse before they get better. I take pizotifen as a migraine preventative, a low dose each night. It certainly has helped, as before I went on them I was getting two migraines a week! Hope as time goes by you will gradually notice an improvement, and remember to be kind to yourself, don't try to do too much. Marion x
    • tracey51815
      tracey51815 marion29181

      Posted

      Hi Marion

      Sounds as though you've had a lovely evening with your son and his girlfriend.  I didnt do too much its been so cold here in Brighton. That said Ive just eaten vegetable flan, egg, cheese and some smoked salmon! Plenty of B12 for what its worth!!   Its encouraging to hear that sometimes things get worse before better - I shall keep this thought in mind to keep my spirits up.  You poor thing two migraines a week - how dibilitating and unfair - I'm glad your medication is having a positive effect though. I can so sympathise.  Out of interest with your foot does it irritate it more if you wear socks?  Mine seems better exposed to the air!  Thank you once again for your kind words and so much valued support.  Its made such a difference, it so really has.    Take care of yourself  Tracey x

    • marion29181
      marion29181 tracey51815

      Posted

      Hi Tracey, strangely yes, socks do make it worse, or perhaps it's the colder weather and wearing socks. When it was warmer weather and I was barefoot I didn't find it as bad. Marion x
    • tracey51815
      tracey51815 marion29181

      Posted

      Hi Marion   thank you for confirming that.....I find the nerves in my toes are rather sensitive and dont really like being surrounded by fabric if it can be avoided!   If I put a needle in the top I feel the same as the other foot its just this horrible feeling all the time as if an anaestetic is wearing off!!   Have a nice day - hope its not too wet where you are.   Tracey x
    • marion29181
      marion29181 tracey51815

      Posted

      Hi Tracey, really a lovely day here in Essex, sunny but cold. We were expecting to have heavy rain, but that might have gone through overnight. I think that explanation of anaesthetic wearing off is a good description of the feeling. By the way I thought you may like to know I've had an email from the Pernicious Anaemia Society. They inform me they are organising a forum in London, with MP's to raise the issues regarding poor diagnosis and treatment of B12 deficiency. It is planned for Tuesday 3rd of February, and they have asked all members to write to their MP's and ask them to attend. Also to think about going with their MP to the forum. I will report back if I hear any more about this. It sounds as though we might actually be able to raise awareness of this awful illness. Marion x
    • tracey51815
      tracey51815 marion29181

      Posted

      Hi there Marion.   Actually just returned from Brighton and not too bad - sunny but windy here on the coast - definitely needed a hat on!   Many thanks for the information regarding the PA Society's planned forum. I could write to Caroline Lucas (our MP) she is very sensible and always keep to help; I wouldnt mind accompanying her - I am sure even my limited knowledge is more than many - certainly more than my GP's!  Let me know if you hear anything further please.  The thing is it really is an issue that can potentially affect anyone - take care  Tracey x
    • marion29181
      marion29181 tracey51815

      Posted

      Hi again Tracey, wondering how you're getting on? Heard today that my MP won't be able to attend the forum on B12, but I think I've pestered him enough by email, that he will take time to read up on it! I hope so anyway.

      I'm guessing you've not got your blood test results yet, are you taking any B12 supplements at the moment? If so, have you had any bad reactions? I only ask, because another lady posted about having a bad reaction to the injections. She has been OK on methylcobalamin supplements though. I'd never heard of anyone reacting to the injections before, but I immediately thought of you and your allergies. Best wishes Marion

  • chris27080
    chris27080 tracey51815

    Posted

    It might be of interest to you to read Vitamin B12 status in vegans Herrman Schorr et al Am J Clin Nutr 2003.

    In short it compares normals, vegans, lvegans and lovegans vitamin supplementing and not.

    The non supplementing vegans showed 80% low B12, 92% low holob12, 83% elevated MMA, and 63% elevated homocysteine.

    The other groups particularly supplementing l or lo vegans were not quite as bad but still bad.

    They make the point that there are four stages of B12 deficiency not all detected or distinguished by the tests. However it looks clear that such a diet can have an effect in months. In your case over years and more so in recent months.

    Obvious nerve damage is a later stage and takes time to reverse with some odd symptoms and exacerbations in the meantime.

    One of the advantages of the vegan diet is high folate levels. However the B12 is the second factor in the basic cycle changing homocysteine to methionine a basic pathway in the Krebs cycle. To try to preserve this such as is available is diverted away from cell replacement and the folate ends up exacerbating nerve damage. A reference to this is “The methyl folate trap” Lancet 1981. However at least as far as the abstract goes it is difficult to follow and grasp. There may be easier explanations of it. Some find that B12 requires higher levels of active folate eg quatrefolic.

    I note that all appeared to have adequate B6 although there was a wide range with some very high.

    There is a link between B12 deficiency and CFS so that groups experience can be helpful. Particularly on start up symptoms ie an initial worsening and the time taken for various issues to normalise like 9 months, although often there is a rapid indication that something is making a difference within hours although that may appear bad initially. They also highlight that potassium can be required and this tends to be indicated by sore muscles.

    As you also appear to have diverse intolerances and an overactive immune system, you might consider leaky gut usually due to phytates in grains and gluten intolerance. Zinc can help with that but you may need to eliminate gluten.

    I suspect that repair may involve a number of steps and time. It certainly is not just a matter of adding some B12. It is important to do each thing one at a time so you can distinguish effects and to start gradually.

    I would also encourage you to get counselling - not some fringe type! While support has a useful function I would strongly advise a properly qualified counsellor. I also suggest meditation and perhaps yoga. This is not to suggest that it is all in your head, rather that the path is long and probably complex and getting stressed will not help.

    • tracey51815
      tracey51815 chris27080

      Posted

      Dear Chris    many thanks for yet another helpful message;  it makes very interesting reading.  I certainly will look up and read the passages of text you suggest on veganism.   Ive never been able to work out why on a healthy but supplemented vegan diet my bad cholesterol was too high and my good cholesterol too low;  it will be interesting to see what happens to me levels following a change in diet;  I had read low B12 breeds high homocystine levels breeds heart disease. Overall my cholesterol reading isnt great given that I eat lots of pulses, grains, vegetables, nuts, good oils etc.  Until very recently I have felt very fit and healthy.   I definitely suspect I have an overactive immune system (possibly due to high histamine - probably stress induced - going to get this checked out)  I have a borderline overactive thyroid and the intense stress with my legal career, bereavement, illness, spinal injury and surgery etc has I think finally taken its toll on me and Ive burnt out.  I have wondered whether a lack of animal resourced calcium hasnt helped my stress levels.  Thank you for your suggestion I look into leaky gut syndrone - thats something Ive had on my mind for a while - that makes sense.  I dont plan on turning my back on my beliefs and eating meat but I have found the website of Liz Jones where she supports a dairy farm producing milk, cheese, eggs humanely in that the animals live out their full lives which is important to me.  I dont want to get ill but neither do I feel happy at being well at the expense of others.  This is a compromise I can live with.  I agree that its not just a matter of adding B12 - I need a radical overhaul and this includes some proper grief counselling in particular.   Meditation also appeals so many thanks for suggesting this and reminding me I need to take care of my body and  my mind.  Thanks again Chris!    Tracey
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