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

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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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    Hi again Tracey, I am no expert in all of this, but it does sound as though you've managed to raise your B12 levels by taking tablets. I don't think it would be harmful to try the 1000mg of B12, as we excrete any that we don't need. Some of the people who post on the other site I'd mentioned yesterday, have said they only feel well when they get their levels up to 1,500 plus. The highest level I've managed was 1,200. Of course, it's hard to know how much of that was "active" B12! Pursue getting the private blood tests done, but give the other tablets a try. Unfortunately, there are so many variables with the test results and treatments, only we know how well or not we are feeling. Maybe try posting your results on Health Unlocked, and see if anyone on there can be more helpful? Very best wishes Marion x
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    • Posted

      Hi Marion   many thanks for your message.   Yes I was very happy when my doctor rang to confirm the B12 levels had increased - guessing through diet and the Ultra Vit B Complex but she made no comment about the high folic reading even though it had a black star next to it and note to investigate.  I am just hoping that the folate is high as the tablets I took are optimum strength.  I do think they were a shock to my system and as I am feeling quite well today apart from abit of buzzing in my feet, that the awful effect of the pills are out of my system.  I was just so ill yesterday.  I think the level of B6 357% RDA was possibly toxic to my system.  I seem so sensitive to alcohol, caffeine and drugs so guess Im not surprised.  My Neurologist says I am wasting my time getting the blood tests done but if I agree to pay (rather than claim on my insurance) he will agree to arrange through Spire Hospital!  I will give it a couple of days before I start taking the methycobalamin - it was cyanocobalamin in the ones I took - maybe I reacted to the cobalt in the B12 or some other ingredient.  Just hoping for a good nights sleep tonight and less twitching! Thank you so much for your time and support - its been invaluable;  really.  Tracey x
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    • Posted

      Hi Tracey, it's my understanding that methyl cobalamin is easier to assimilate than cyanocobalamin. I really hope this will prove to be so in your case. I wish you a really good night's sleep, because, after all, that is the chief way our bodies heal and repair themselves. In my own case, lack of restful sleep, always makes me feel so much worse. So try to wind down gently before bedtime, a warm bath or shower, followed by soothing music or a good book. Good luck with the blood tests. Marion x
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    • Posted

      Thank you so much Marion.  That is really helpful.  Thank you also for your advice on relaxation - very sound.  I actually paid privately for repeat blood tests yesterday to include Methylmalonic Acid Test such acid apparently accumulates in the blood in the absence or low levels of B12.  This test is considered better than testing for serum B12. Anyone suffered neurological impairment will apparently show more of the acid meaning this test can say whether someone is on the way to neuro damage or already has it  normal levels being 0.04-0.27 umol/L. The results should be back next week.  Although my neurologist is still convinced I am making a fuss about nothing, given my diet, laxness over taking vitamins over the last 6 months (vegi vitamins discontinued by Seven Seas) and falling levels of B12 in the past two years (only recently came to light) coupled with numb foot and neuro symptoms I feel I am having to take matters into my own hands.  After ceasing the 3 days of Vit B Complex I am now just left with slight tremors in legs and insomnia (hence this early morning message - also had a tooth out yesterday which has kept me awake!).  Am guessing the reason I was so ill on the Vit B Complex was maybe the high dose of B6 was becoming toxic to me as I wasnt absorbing the vitamins as I should have (for whatever reason).  Will try just B12 from now on.   I am going to me GP today and ask to be referred to a haematologist - am guessing that would be the right professional who could advise on the issue generally and dianosing any other condition that might exist (??) - have lost faith in my GP and my neurologist is losing patience with me!  Will be very interesting to see what my blood results are next week and to see if the very high folate readings have come down after stopping all vitamins (on the advice of my GP!).  If I do have PA I shall need to address the issue asap given my numb foot, continued neuro symptoms whether this is by taking 1000 mcg B12 or injections I'm not sure.  Many many thanks for listening to me and taking the time to support me on my journey!!  I hope you are feeling ok - sorry aware my messages seem all about me!  Tracey x
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  • Posted

    Hi Tracey.

    Only 1% of oral b12 will be absorbed with Pernicious Anaemia. What type of b12 is in your tablets? You may have a metabolising problem where b12 and folate is inactive in your blood but unable to metabolise into your cells. You may do better on methyl folate and methyl cobalamin. Look up MTHFR genetic defect. This could be your problem xx

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    • Posted

      Hello Heather  thank you so much for your message.  Its very interesting that only 1% of oral B12 is absorbed with PA.  As such I  am hopinh I am deficient due to my restrictive diet - mind you bearing in mind Ive been vegan for 20 years it could be alot worse!  The B12 in the Vitabiotics Ultra Vitamin B Complex (premium quality!!) is cyanocobalamin.  Ive bought some of the more expensive B12 Methylcobalamin 1000mg and will give them a go in a few days when my poor body has recovered from me taking the Vit B Complex - no idea whats in them that didnt agree - first I got a dozen or so little red spots on my face and then the horrible neuro symptoms. Ive drunk alot of water and hoping to flush them out of my system.  I am going off to look up MTHFT genetic defect and get some methyl folate and stick to just these and ditch the B Complex - they just dont seem to agree with me.   Thanks again - you're advice and support is so much appreciated.   Tracey x 
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  • Posted

    hi tracey;

    so sorry to hear things r in such a state of flux for u. i so hope u get a resolution to things shortly.

    1)high Folate levels can present in cases of PA, as there's sometimes impaired utilization of Folate with PA.

    2)it's impossible to conclusively say if ur b12 levels have upped in response to the Mega b12 & dietary changes. the body has such a dynamic ability to compensate, adpat and re-adjust from day to day in the name of survival that it's impossible to track or/and explain these nuances of change accurately. for example, in Sept. u might have had an asymptomatic viral/bacterial infection incubationg, been midway through or post a heavy period or were stressed out. so the level may consequently reflect in been lower. it's not a big rise in levels.

    3)re Docs comment re if u had PA, u wouldn't respond to oral b12 intervention: as far as i understand the condition i think that's correct.

    4) with the state of flux & other presentations i.e. allergies/sensetivities etc. there's the possibility of an auto-immune component going on at the moment, that can be addressed.

    5) tracey, have u had the following tests completed by the GP: 1) a 'stomach parietal cell anitibody', 2)'intrensic factor (IF) test.

    7) the Spire Private Hospital Group do the MMA (Methylmalonic Acid )@ a cost of £39.22 plus £22.89 for drawing the blood. the turn around is 10 days. they also do the Homocyctine blood test - turn around for that one is 5 days. the Nuffield Group say their 'turn around' is 7 days.

    check their costs think they are higher. also, as they send them awat be sure to have them done am if it's a friday. woth checking that out too.

    c

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    • Posted

      Dear Caitlin

      thank you for much for your wonderful informative message.  I really do appreciate your time and knowledge on this subject which is new to me.

      My GP has just agreed to repeat my folate test next week which is something.  At least I will then know its if the over zealous supplements or something else going on.  Yes its very interesting to hear that the body adjusts B12 levels from day to day according to what is going on is our system and lives. I am just hoping my numb foot is not down to nerve damage sustained from my B12 levels - I have never been able to get to the bottom of it despite extensive

      tests so as soon as I read about B12 and what symptoms can present themselves in the case of deficiency I thought Id finally found an answer.  I then became incredibly stressed out when the supplements made me ill and my doctor wouldnt agree to an injection as a result of such.  Books like The B12 Deficiency Survival Handbook mentions such symptoms and those horrible neuro ones experienced over the past few days as a final warning - no wonder Ive gone into meltdown!  I really wouldnt be surprised if there was an autoimmune issue going on - that would explain alot.  I saw an allergy expert today - unfortuately it turned into an hour long counselling session at considerable cost - turns out he is a counsellor too think he needs more patients!  He says we can address allergies at our next hour long appointment!!  I havent had the tests you mention in your point 5)  but I will add them to the list of ones I am going to have done privately - cant see my GP agreeing to them.  I am paying for homocistene and MMA - infact I am going to Spire Brighton for these but thanks alot for the information on pricing and turn around times.  Thanks again Caitlin - you've been just great.  Tracey x

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    • Posted

      hi tracey. delighted/relieved to hear the vits r out of ur system & things r back to normal.

      a couple of comments that MAY throw some light on the High Folate levels. the Lab/Medics measure 2 levels of Folate:

      1)Plasma or Serum Folate levels, which measures 'short term' Folate intake. Def. levels r <3.0 ng/ml.

      2)Red cell Folate (RBC) levels, that measure 'long term' Folate levels. Def. levels < 140 ng/ml.

      from ur post it sounds u possibly had 'Serum Folate' (short term levels) measured. the reading would reflect ur recent high dose supplementation & enhanced b12/Folate rich food intake. perhaps when u have ur levels re tested they'll be lower or normal.

      3)high levels of Folate r usually OK provided that b12 levels are also normal. cells need b12 to utilize Folate. when the b12 is deficient Folate cannot be used up so builds up in the blood system. Folate tests can give high readings in this instances.

      C

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    • Posted

      Hi Caitlin

      Many thanks for your message.  Its very informative and helpful. Fortuntely since stopping the high dose Multi B tablets I am just left with the numb toe, fluttering in calfs and insomnia!  Regarding my recent blood results I am not sure if my high folate reading measured short or long term folate levels and its very interesting that it is possible to see these two elements in a lab result.  Ive had my Folate B12  B6 and MMA re-done yesterday privately at my own expense and results are due back to the Spire next week.  The results are being sent to my neurologist and I hope he will pass me a copy to read rather than try and appease me with words!  I am sure he will be very surprised if I ask him what the long and short Folate elements are!!   I wonder if you could tell me what a Stomach P Cell Antibody and Intrinsic Factor (IF) Test would show;  many thanks for recommending these in your earlier message.   I mentioned them yesterday to the Spire and the young guy I saw didnt seem to know of them.  Out of interest would you know if I did happen to have an auto immune disease or other underlying condition causing issues with my B12 levels who would be the professional that would diagnose this and I wonder what test would reveal such?  Am rather confused - there is mention of GP's referring patients to haematologists - given my neurologist's view seems rather closed on the subject I feel I need to gem up on this information myself just in case I need it.  I have insurance which is very fortunate.  Very interesting to know if the GP's range of normal (150-883) decreased or increased on 3rd December 2013 as mentioned on my blood test!  It seems the UK range changed at this point.  Seems very unsettling that our 'acceptable' range is so low when according to professional on B12 deficiency deficiencies can show in spinal fluid from 400 or below and some doctors are prescribing B20 injections for 300 or below when others are sending patients off to buy vitamins when their levels are 120!  Its also interesting if you read certain other forums - one I stumbled across about numb toes and the menopause there are hundreds of individuals with symptoms the same as those that relate to B12 deficiency and it is being put down to hormone imbalance and they are given HRT or antidepressants or nothing just because their B12 is within "range".  I spent 4 months on such a forum trying to reassure myself my symptoms must be hormonally related before I got hold of copies of my blood test results from my GP and saw the levels, drop off over the past 2 years and decided to look into the issue of B12 deficiency.  During that time I had multiple scans, MRI's, EMG's, etc all of which fortunately came back negative but the stress of having the continuing symptoms without answers has not surprisingly taken its toll on my health not helped by the dismissive reaction of all professionals involved.  Sorry sounds like I'm ranting - I don't mean to - I am just very frustrated at the lack of basic knowledge on the subject!!  All the very best  Tracey x

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    • Posted

      hi tracey. bear with the bits n bobs of info. my system ceases with a moderate length of msg.

      testing for allergies via NHS / conventional medicine is not very successful. it's a rather crude/unsophisticated science for this ''subtle'' area of medicine. the results only show up if u have gross allergies. the immune system will throw up ''Immunoglobulin E'' (igE) cells & conventional Docs uses this as diagnosis. if the igE are absent, they tend to take the line that u r not 'alergic'. this approach is not remotely sensitive enough to pick up food & other senstivities. probably the best way to get a 'sensitivity' test done might be at your local health Food store. many have ''allergy experts'' attached. these, can vary from person to person. some excellent, some not so.might be worth going onto the 'Allergy/Sensitivity section on here & see what ppl say re finding an Expert. it's bit of trial & error effort. a Kinesiologist sorted me when my allergy list grew.

      C

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    • Posted

      hi again tracey. hope ur keeping as well as possible within the circumstances. hope my system stops playing up soon.

      with ur clinical picture - clear SIGNS of neurological compromise (numb toes/foot) & a number of b12 symptoms, the GP should be excluding the ''obvious'' first 1)Diabetes, 2)PA.

      when b12 problems are suspected, it's usual, to ,rule out PA by doing the Intrinsic Factor (IF) test. if this is inconclusive, then the PCA antibody test is indicated. if both of these r negative PA is ruled out. however, procedures do seem to vary with, or even within practices.

      the next step is to start looking at the other possible causes of b12 compromise i.e. atrophic gastritis, insufficient HCI (hydrochloric acid)stomach infection (H-Pylori), Chrons disease (bowel), malabsorbtion syndrome. they need to establish if ur loosing b12 & if so, from where. c

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    • Posted

      indeed, it's the ''accumulative'' stress that causes the body to finally give up the battle of the struggle & cry out for help. it's language is pain & symptoms.

      tracey, to be prepped for Doc (private.........?) it might be helpful if u could have a look at some info. & have it to hand (should u need evidence) to ''educate'' ur GP lol. there's a plethora of articles out there, published in pier reviewed scietific journals, that preach against the dangers of relying on b12 serum levels as 'stand alone' conclusive diagnosis, particularly so, when there's other verifiable b12 S & S i.e numb toes/foot presenting.

      if u go to pg. 6 of the NICE CKS guidelines. half way down in the management section, where it says ''it should be remembered that serum b12 is not always an accurate reflection of deficiecny at a cellular level. it's perhaps for this reason that some patients become symptomatic , if the frequency of their injections are reduced''.

      they have given a reference that support this hypothesis (Turner & Tabolt 2009). u could down load/print out their research findings & bring it along with u. or at least be cognissant with the key points pertinent to ur circumstances. this articel in published in the one of the 'respectable' neurological journals. unfortunately, coz my system's so old (XP2000) i can't find a browser that'll allow me to down load the article. keep us posted & ur doing great girl. we're all behind u with our supportive thoughts ( and bad spelling lol)C

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    • Posted

      Hi there Caitlin   thank you so much for your messages.  I stayed over night at my mums last night as I didnt feel very well after taking my first 1000 mcg Methylcobalamn.  I dont know if you might be able to comment but 4 hours after taking it I experienced tingling in the toes in my right foot (its my left foot that is numb) and in the night I was shivering alot.  For the last three days I have also felt like I have abit of  a lump down my throat like I have a lump of bread there.  I did look up B12 deficiencies and can see difficulty swallowing as a symptom; I can swallow just this odd thing going on with my throat and a tight feeling inbetween my shoulder blades coupled with tightness in calfs and itchy throat. The dizziness has gone and thanks to a valium (over from when I had back problems) but close up vision isnt always great.  I think the B12 pill was a shock to my system.  I am nervous about taking another but feel I must given my symptoms - I am worried that if I have had this reaction to the pills I might react more to an injection.  I had an interesting day yesterday with my GP.  In the morning I felt incredibly anxious (really do feel its the condition and not worrying for the sake of it) so I rang my GP.  She rang me back and asked me to come in at 11 am.  She sat me down and said she had been on a course last week about B12 deficiency and had learnt that sometimes people can present with 'in range' readings but can still be deficient;  she had that morning spoken to a clinician about the required tests. She immediately sent me down to the hospital for MMA, Homocistene, Auto-immune test and one for copper.  She felt the bad reaction I appeared to have starting last Monday after taking a strong Vit B Complex had too much folic acid - and she had heard this could push down B12 levels further - seems odd!  Something has to explain the terrible insomnia, dizziness, weird vision,  bad twitching in lower legs and paralysing anxiety.  Given my adverse reactions to a number of drugs she said to start immediately on the sublingual B12 rather than injection and the blood test results should be through early next week.  She said on the course she went on they said pills were as good as injections.  I fear this may not be the case for those presenting with neuro symptoms.  Anyway I am up and about preparing for a lumbar puncture test tomorrow (ordered by neurologist) (to find out why foot numb) bet it turns out to be unnecessary.  Half minded to postpone and book in for an urgent injection.  GP did comment that she wonders how my neurologist will react if it transpires I do have B12 deficiency and my week long emailed appeals to him summarising my horrible symptoms brought about a reaction from him that it was all anxiety and stress!!  I wouldnt mind but he is so convinced its all in my mind that he refused to recommend my insurer pay for any more blood tests saying I would have to fund myself.  Many thanks for all your information to date - my GP was most impressed when I arrived with more knowledge about the required tests than she did.  My GP says my iron levels and red blood cells are ok presumably meaning no PA but possible B12 deficiency.     Many thanks indeed Caitlin - youre a live-saver (literally)!!      Tracey x

       

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    • Posted

      Hi Caitlin    Just thought I'd update you if that's ok.    I had my lumbar puncture test today - results take 2-3 weeks I'm told.   In the meantime my calf muscles are very stiff and lying in bed produces tingling down the lower part of both legs.  Numbness in left foot now spread to whole of foot.  I am really confused now - can taking Vitamin B12 make the problem appear worse?   A week ago I had had four months of purely a numb left foot.  I take 2-3 days of high dose Vitamin B, 2 days later I have experience a whole host of ghastly neuro symptoms completely out of the blue which last three days.  3 days later I start 1000 mcg B12 tablets and although no horrible neuro symptoms exist the tingling is worse as is foot and the tingling has spread throughout my body.  Is it possible that taking such large doses just simply makes all nerves heightened?   I am really worried I am making the situation worse.  Ive emailed my neurologist and asked 'god forbid' if I do have something other than B12 deficiency (MMA, Homocistine etc results will take another week to come back) can taking large doses of B12 damage any damages nerves further?  If not then I really am inclined to start injections tomorrow - my doctor has agreed to me having one every other day for two weeks.   My Neurologist is continuing to take the same line that its purely anxiety and I dont have any deficiency.  I have been vegan for many years, have a lowish B12 count and are displaying all the signs of B12 deficiency - what do I have to do to prove its not all in my head?  Have put out three enquiries for test doses to no avail - no one ringing me back and my GP doesnt offer these.  As such I feel what the hell - go for the injections - I may be concerned about allergies and possibly reactions but that said Ive taken 4 days of high-dose B12 tablets and the only side effect experienced thus far is tingling in legs, stiff calfs and abit of throat itching (which could be down to something Ive eaten).  Really sorry to ramble but I feel like Im hitting my head against a brick wall.  I really am wondering if its normal to have all this fluttering of nerves taking something which is supposed to be helping!!    Anything you can perhaps add from experience would be so gratefully received.  The way I feel at the moment is curling up in bed for 2 weeks and awaiting the test results.     thanks  Tracey
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    • Posted

      hi tracey. plsd. to hear the LB is over. 3 weeks is long time to wait though?

      1) firstly Tracey have u had any previous back or pelvic injuries

      stirred up more nerves and pathways.

      tracey do u have the facility to send me a private e-mail i.e. off line. my computer goes into snail mail speed at this time of evening - heavy on line traffic.

      c

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