Can symptoms get worse after taking B12 1000 mcg tabs?

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Hi there   I started off with a numb foot for past 4 months.   I then take 2-3 days of High Dose Vitamin B tablets,   2 days later I have a whole host of ghastly neuro symptoms completely out of the blue,   dizziness, confusion, eyesight problems, extreme anxiety, insomnia and nerve tremors in both legs.  These on the whole subside 2 days later leaving tingling in both feet and legs.  2 days later I start 1000mcg sub B12 tablets and the tingling is worse and my calf musles are stiff - what is going on????     Can taking such high doses of B12 make things worse,  is the dose too strong for me or is this a normal reaction????   Dont know what to do - stop or carry on.   Feel inclined to start on B12 injections (pending formal blood tests results) and forget worry of my allergies and whether I might react to B12 injections and just go for them without further delay - what is the worst that can happen???    If it does transpire I have some horrible degenerative nerve disease can taking B12 in such high does make things worse???  I would not be surprised to have B12 deficiency - been vegan for years,  have count of 282 and displaying text book signs.  My neurologist doesnt believe its possible to get B12 deficiency unless you are over 60 with kidney or liver disease and a count of under 200 - that surely cant be right.   I am so confused.   Anything anyone can add from experience would be so much appreciated.   Tracey

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  • Posted

    Hi Tracey, I see from your other post you've had your lumbar puncture done today. Do you think you've had increased stress levels because of this test? It's my understanding that you can't overdose on B12, any excess is just excreted from the body. Your neurologist is, I'm afraid, well out of date on who can get B12 deficiency! It's one of the chief reasons that so many people are going undiagnosed. Children get B12 deficiency, my own practice nurse's daughter has it at age 11! I believe there can be an increase in symptoms as part of the healing process. Have you ever had surgery that has involved any nerves being severed? I had to have a cyst removed from a finger many years ago, that finger stayed numb for several months. After 6-8 months from the surgery the feeling began to come back, and accompanying the return of feeling there were shooting pains. Obviously I was worried by this, but told it was natural as the nerve endings re-joined. With low B12 the nerves aren't severed, but they are damaged. 
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    • Posted

      Sorry, that went before I'd finished typing! Please try not to worry, stress definitely does make things worse. Sending best wishes to you for your recovery, but don't expect instantly to feel well, it will take time. Marion x
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    • Posted

      Hi there Marion.  Many thanks for your message.  Yes I had lumbar puncture - not too bad to be honest - no headache either yet!  Yes I had back surgery 7 years ago.  A nerve conduction test done in November last mentioned chronic neurogenic changes in the lower spinal area consistent with damage with previous L5/S1 damage sustained following repair of a disc damaged after car accident and the possibility I had somehow aggravated the old injury site. I had no real problem with this repair until 4 months ago when I had an apparent reaction to estrogen cream - double vision/dizziness/palpitations and then numb foot - been same ever since. No idea why I am so sensitive to certain drugs.  Its almost as if (possibly due to low B12) the nerves in this spinal area are extra sensitive so when I introduced high dose B6 Complex a week back I had horrible neuro symptoms (consistent with low B12 levels) these in the main went but 3 days after when I started the B12 1000 mcg tablets the numb foot got worse, both calf muscles got very tight and bruised and have tingling all over.  I really need to get to the bottom of why I am reacted so badly to drugs first of all and how I now get my B12 levels up without B12!!  I am trying not to get stressed but this is all rather worrying.  I am seeing my neurologist Friday but think I had better stay off the B12 tabs in the meantime,   eat some B12 rich food and keep my fingers well and truly crossed!!  I wonder if and when your B12 levels are low whether your previously injured finger is ever affected. It will be another week I understand before I get my MMA and homocystine level and Antibody screening test results back.  Many thanks   Tracey x
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    • Posted

      Hi again Tracey, well my operation on my finger was on my left hand, which is the one most effected by numbness, so I think the answer to that is yes! Maybe your back operation means that will always be a weaker area, and more prone to be upset by low B12? Hope all goes well with your neurologist  on Friday, and your results with MMA and homocysteine and antibody testing will help track what is going on for you. Marion x
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    • Posted

      Thank you so much Marion - you are so kind spending your time messaging me at this late hour.   It does all now seem to make abit more sense now.  Take care of yourself    Tracey x
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  • Posted

    Hi Tracey, try starting with vitamin B2 (riboflavin) and then easing in with increasing the doses of B12. It appears that you can fire up the production of neurotransmitters with folate and B12, but you need to also be able to turn them off and for this you need vitamin B2 (which is converted to FAD in the body). It is actually quite a common experience. It would appear to show you though that you really were B12 deficient. People who are not deficient don't have any such reaction to B12.
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    • Posted

      Many thanks Madge.  Very interesting point.   Also when I had my most recent B12 blood test my folate levels jumped from a normal 11 to a very abnormal 37.  GP says probably Vit B Complex or eating fish that day that did it - seems odd though.  All my horrible so far unexplained neuro symptoms appeared around this time.  It certainly makes sense that I may have fired up production of neurotransmitters with my folate level and large amounts of B12.  Was thinking of starting B12 injections tomorrow but given my reaction am very nervous of this.  I also had back surgery 7 years ago and from speaking to someone else on this forum wonder if the B12 has had an overly dramatic effect on the nerve damage in my back.  Although I dont have any back pain,  nerves have been damaged in this area I understand by virtue of the surgery to repair the disc.I have always wondered why it was only my left foot that was numb - when I had the ruptured disc it was my left foot that was affected - very cold.  I suspect I could well have a double issue here - B12 deficiency and over-sensitive nerves in my back - oh dear.  many thanks  Tracey
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  • Posted

    Hello Tracey, I have read your message.  In my opinion, one can take too much of everything.  However, like you I have perniceous anemia and also peripheral neurophaty.  For the perniceous anemia like you I have a deficiency of B12 and for that I receive injection of B12 every 3months, however, I do not know what your dosage should be, that would depend on what the neurologist and the gp decides.  I went to Charing Cross hospital in London for the necessary test and return to the neurologist assigned to me. The neurologist has also prescribed Gabapentin, first 300mg x 3 a day but I found it was too much and she has now reduced it to 100mg because I found it was hard for me to function properly as a carer.  I was always sleepy.  The Gabapentin helps with the pain of neuropathy.  WHAT I also found out this Christmas is that alcohol (which I rarely drink) seems to worsen the condition, so I avoid it altogether.  Everyday I also do excecises for two reasons, I have spinal problem and was operated a few years ago, as well as osteoporosis for which I also receive treatment. I find that the excecises does help for the lot. I also meditate daily for 20minutes in the morning and 20minutes in the evening so I can find the strength to overcome these problems.  Perhaps you should try and be a bit firmer with your neurologist and/or your gp and request that tests be done to find out what really trigger the neuropathy as there are many causes.  I know each individual might react differently to treatment and I tend to beleive that through trial and error one will eventually settle for the right treatment. I wish you all the very best in finding a solution to your ill health.  Take care.  Catherine
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    • Posted

      Hello Catherine  thank you so much for your message.  Its very useful hearing from someone that has had spinal surgery and is having B12 injections. When I saw my spinal surgeon and told him about my numb foot that had come on it appeared in a direct reaction to a fairly harmless drug his view was simply that I had had surgery which can damage nerves so  a numb foot is to be expected and take some pills!  I advised I wanted to find out why my foot was numb and not just take medicine.  If it transpires I do have PA (results due back next week).  I wont be very happy to think I have been the only one making a connection between my symptoms and my low B12 levels.  I had to pay for the blood tests myself as my neurologist is convinced I am wrong about my suspicions even though I am vegan and my symptoms are a text book case.  I am glad that exercise and meditation helps you - I will certainly try this.  It seems I went from a healthy person 4 months ago to a physical and mental wreck!!  Ive been left to make my own decision as to whether to have B12 injections knowing my adverse reaction to drugs and seeing my symptoms worsen.  Attempts at trying to get a test dose done have proved fruitless.  When taking B12 supplements I get tingling all over and my numb foot worsens (maybe the PA is progressing and that tablets not strong enough though) so I'm blaming the supplements. All I know is that body seems hypersensitive to anything I put in it and very worried about making the problem worse!   Despite worsening symptoms I am inclined to sit it out for the next week pending test results before going down injection route.  Many thanks and take care of yourself   Tracey
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  • Posted

    Hi Tracey. I was wondering if you found out what was going on with your situation. I had a similar experience with 1000 mcg B12 and 800 Folate. I have had progressive neuropathy for 18 years. When I had blood clots last year, my blood tests came back with normal B12 levels but a heterozygous MTHFR a1298c mutation. Despite both of these, the doctor decided to put me on the higher levels of B12 because of the blood clots. As soon as I started this, my neuropathy went out of control. New annoying symptoms all over the place. When I stopped the B12 and folate, my neuropathy symptoms went back to my normal level of symptoms.
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  • Posted

    Any updates? I had some nerve pain (suspected) in all extremities for a week. Dr gave me a shot of b12 and I started supplementing and now I'm a complete wreck. Not sure if the b12 supplementation is to blame or if I have some scary disease. Im helpless and hoping for some answers or suggestions. I have burning, twitching, numbness, tingling etc. I have been a veg for a decade and am low b12.

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    • Posted

      Did your doctor not check your serum B12 level before giving you the injection? You also need to know what your folate level is as this is essential to process the B12.

      It is certainly not unusual for neuropathy symptoms to get worse before they get better once B12 treatment starts to repair the damage already caused by a deficiency - if that is what you have.

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    • Posted

      Hey Julie. I'm curious how are doing now with the b12 shots? Were you having the symptoms prior to the shots or just after?

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    • Posted

      I had symptoms of just occasional twinges of pain in extremities before. Nothing super painful just odd. All the neuro symptoms came after but I stopped injections and things didn't get better. Still not sure what's up. I do supplement w b12 but feel my symptoms are worse when I'm taking the supplements so idk if it's related or in my head.

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    • Posted

      It is not uncommon for some symptoms to begin to get worse before they get better and ironically it can be taken that the B12 is actually doing what it is supposed to do and that is to repair the damage done to the nerves caused by the B12 Deficiency in the first place.

      That you are vegetarian is probably the main cause of your deficiency and it may well be that you will need B12 supplementation for the rest of your life.

      The NICE and BNF Guidelines on the treatment of B12 Deficiency say to have injections of hydroxocobamalin 1mg every other day until there is no further improvement so if you have stopped injections early on that was not the right thing to do,

      As I said before you will also need to find out what your iron and folate levels are as these work together with B12 to make healthy red blood cells and if you are deficient in one or other of them they won't work properly.

      If you still have neurological symptoms, to avoid further damage go back to your doctor and ask him recommence the B12 injections in accordance with the guidelines.

      I am not medically trained but I've had P.A. (a form of B12 deficiency) for 45 years so I know how critical a thing this is.

      I wish you well,

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