B-12 deficiency

I am new to this site and have limited information. First, I have fibromyalgia. I started having tingling sensations, etc and was referred to neuro. I was told two months ago that I am b-12 deficient. I was not given the numbers. Had 3 shots threedays in a row and then to have one per month for three months and then recheck level. I am on the first monthly shot. I feel worse now than before starting shots and have more symptoms. Nero said it's just "repairing" and that's normal. I left in tears. Suggested add more lyrica. Already take lyrica, neurotin, and cymbalta. I make myself go to work, but that's all. I hurt too much and I am so tired. Neuro said do yoga -no energy. Was told not to take supplement until after next test. Any advice or encouragement? Thank you!

20 Replies

  • Am sure that after your injections the levels in your blood could be artificially raised. Others here will reply - who are more knowledgeable than me. Having spoken to the Chairman of the PAS - Martyn Hooper - about a family member - he did tell me that taking supplements could skew the results for months. Not sure if that applies to injections.

    I think your Neuro was right in saying that the repairing can be painful - I too suffered some of that. I have weekly injections. Like the old saying - it gets worse before it gets better. Also if you have been deficient for a long time - it will take longer for you to repair and heal.

    Regarding your Fibro I am wondering if you may be low in Thyroid hormones - especially T3. Almost everyone who has low thyroid output has Low B12 too - along with low Ferritin - Iron - VitD - Folate. All these things should be tested and results high in their respective ranges. It is quite common for patients to be told they are 'normal ' when the GP means in range ! However where you are in the range IS important. You may have had the thyroid tested - just the TSH - and told everything is normal. Rarely the case. Normal is an opinion and not a result :-)

    You need the following thyroid tests - TSH - FT4 - FT3 - Anti-TPO - Anti-Tg. The last two are tests for Anti-bodies and if positive then you have Hashimotos.

    It is your legal right to have copies of all blood test results with ranges and you do not have to give a reason - as per the link below.


    I am not a medically qualified person but have learnt from others who know more than me ! - and still learning. You can click onto my name to read my edited profile !

    I think that maybe your B12 deficiency is only part of the jig-saw. Hypo and B12D symptoms often overlap - something GP's rarely seem to understand. The good thing is you have a diagnosis for the B12D - it is a start as diagnosis is a problem for so many - as it is with the Thyroid. Millions left to suffer due to poor diagnosis and treatment.


    Am wondering if you have any gut issues and if the medications you are taking have any effect on B12 absorption. It can be complicated :-)

    Stick with this forum and you will learn so much and soon be well. For information on Fibro and Thyroid it may be worth going to the Thyroid UK forum here on Health Unlocked or type Fibro into the Green Search Box on the Green Bar above - Press Enter - and see what appears :-)

    Good Luck !

  • Where do you live.

    Normal treatment in the UK if there is neuro involvement is one shot every other day works out as six) until the symptoms stop improving, followed by two monthly.

    Don't think your neuro knows much about B12 if they think they are going to get meaningful results at the end of 3x monthly shots - unless they are double checking that the levels aren't still low - which would imply that you are someone who doesn't retain whichever form you are having for very long and need more frequent treatment.

    Recovery can be a time when pains get worse - I think of it as being sensitivity to pain being like listening to a radio. When the pain signals get weaker because of damage (without B12 the insulating layer around your nerves degrades) you turn up the volume. Suddenly the signal starts coming through a bit stronger and it is deafening - but it takes the brain a while to adjust and turn the volume down a bit.

    Sometimes the effect of the insulating layer degrading isn't just signals getting weaker but does include additional sensitivity which just makes things so much worse.

    Meditation is an effective way of treating pain sensitivity in some people - but not all - which is probably why the neuro is suggesting yoga, though I'm not sure that yoga would be the best meditative practice to follow. Mindfulness has unfortunately got a bad name now in terms of being banded around as a buzz phrase but that is the sort of meditative practice that tends to help - getting you to a place where you can recognise that the pain is something that you are experiencing rather than a part of you and for some that can give them the ability to 'switch off' from it ... but it doesn't necessarily work for all. Some hospitals/health authorities run courses in the UK. It might be worth looking into. Or if there is a local budhist meditation group you could try that and see if it/the leader of the course can offer any help.

  • I understand that when we are low in B12 the red blood cells repair when we supplement B12. This deprives our system of Potassium which can (I know) be very unpleasant. We need to supplement with Potassium and be mindful of sodium and magnesium levels at the same time. I also understand that being low in Potassium can be very dangerous, so perhaps a blood test might be an idea to take the guessing out of it.

  • Hi Jrha,

    I am also B12 deficient, I have been for 5 years this month, I got six loading injections alternate days for 6 injections then one every thirteen weeks, but now I get them every eight weeks, as thirteen weeks were too spaced out for me, it initially took the edge of the severity of my Fibro pain, but not so much now, I try not take prescribed medications, although at times I have got to, yesterday I was at a recommended homeopathic/herbal stall & have a couple of things to take, something for energy & something for hormone balancing for my mood/depression, the girl was very helpful, made sure what I was given, did not interact with my thyroxine or depression medication starting this morning hope to notice a difference in a couple of weeks, I wish you well & hope you can get something positive from my comment Hugs xx

  • Hi

    I'm just waiting for my B12 to dip below 200 before Dr will start treatment. April tests showed B12 at 396 and folate 2.7, retested June and B12 was 366 , folate 2. Then aug B12 was 274 folate 2.4.

    I was told due to having anti bodies I would have pernicious anemia within 5 years from my April tests, however it looks like it's taking less than a year. I have all the symptoms for lupus too with the antibodies, however I was less than truthful with my symptoms as I was scared to have the label. However my joint pain is getting worse and the numbness and tingling in fingers and toes is getting worse , and quickly.

    I know I need to be more honest as I need it addressed, however I thought it would impact on my Uni Health check if I had the diagnosis.

    I am still having exploratory tests to find out why I have bad stomach and bowel pains, and IBD was ruled out initially and confirmed it was just IBS albeit tests showed I had H Pylori which I had treated.

    I have 1 last test tomorrow, a barium meal swallow and if that is clear I have no idea what is causing my issues.

    I was suffering with terrible headaches and took meds but had to come off as they dropped my BP dangerously low.

  • Your doctor is not treating you correctly.

    If you have IFA then they should have started treating you at that point to prevent you becoming B12 deficiency rather than waiting for you to be B12 deficient - which is what you are now from the symptoms you list.

    The serum test they are relying is not a good indicator and they are misusing it.

    Following may be of assistance in getting them to realise that they are not treating you properly

    a) bcshguidelines.com/document...

    (refer to the summary)

    b) ukneqas-haematinics.org.uk/...

    warning on interpreting results of B12 serum too literally

    c) pernicious-anaemia-society....

    checklists of symptoms to underline just how many clinical clues they are overlooking.

  • Gambit62

    I don't have IFA, that has never been tested , I have ANA and APCA . They have decided to test for IFA in 8 weeks when I have B12 and folate checked again. However if the parental cell antibodies have already destroyed the IF, then the IFA test will come back negative.

    Apparently they can't treat until I'm under 200, which In my opinion is bad, surely preventative is better when they know it's happening, and quickly too.

  • Parietal cells absorb B12 - IF binds to B12 to enable the absorption. If you have a condition that is going to destroy either IF or PCA then, as you say, they should be treating you then and there rather than letting a deficiency happen - particularly if they are going to be so stupidly bound by levels.

    All voodoo - how they can possibly expect anyone to think that they base their decisions on science is totally beyond me.

    Really hope that your levels have already dropped so you don't have to wait any longer for the treatment that you really need.

  • Gambit62

    Yes I agree, knowing I have anti parietal cell antibodies and I'm already folate deficient and bordering B12 deficient should be a good enough indicator. They gave me 5 years when my B12 was 396 and after 4 months there now 274, so clearly it's happening in the next few months. Just wish I had gone private as I'd prob be getting the treatment

  • It really is quite disgusting how medics think they can get away with such bad medicine.

    I treat myself as relying upon our NHS here is not going to get me what I need.

    Just really sorry that you know you have to continue to suffer.

  • Gambit62

    How do you treat your self? I'm unable to absorb vitamins through the gut, so injections are my only option ( when I eventually get offered them)

  • Gut isn't the only way of absorbing vitamins - including B12 - other membranes include tongue, nose and skin.

    sublingual tablets and sprays target the tongue,

    nasal spray for the nose

    skin patches for the skin.

    In some cases it is possible to flood the gut with high doses of B12 as 1% is actually absorbed outside the ileum - works for some but not for others.

    Lots of options but medics totally fixated on injections - which probably are the most efficient but ...

    Not sure where you are based. CDC site in the US mentions nasal sprays as an alternative to injections for those that have issues with injections.

    Generally it is only the injectible forms of B12 that get regulated - so you can get hold of sprays from reputable sites.

    You can also source injectible B12 from other countries - I'm UK based and sort some from Germany - but it isn't my main source of treatment - that's the nasal sprays - actually use a range of forms and strengths as they treat different symptoms ...

    I inject subq rather than intramuscular when I inject.

  • Gambit62

    Sorry for blank message.

    I'm also uk based. If it's a life condition I think I'd rather I received treatment from dr as it can't be cured' just treated.

    But thank you for that info, if dr don't treat soon I'll have to start

  • NHS treatment just wasn't enough for me - and isn't for a lot of people but hope you get on okay with it.

    You can delete the blank - click on the down arrow in the box and select delete.

  • Important to remember that you need good amounts of FOLATE(Vit, B9) It acts together with B12. They need eachother to perform their tasks. Green leafy vegetable best source, or a perhaps a B vitamin complex which includes Metafolin (Methylfolate) which is the best absorbed kind of B9. I wish you all the very best.

  • Wedgewood

    I agree, I have tried 3 types of folate but my levels continued to drop. I also eat a very health diet yet it was identified I can't absorb nutrients. The APCA are attacking my stomach so it's just a waiting game for my levels to drop enough for treatment. In the US treatment starts if B12 falls under 500

  • ...does your GP realise that only 20% of the B12 serum test result is available to be utilised in the cells - where it is needed. That makes your result far worse. I would not wait for someone else to decide how and when I can be treated for something as serious as B12 deficiency. In Japan the range starts at 500 . Sometimes to find wellness we have to do things for ourselves. How can one range be right for everyone - they are only guidelines.

    I learnt the hard way - which resulted in spinal surgery in 2007 - possibly caused by the de-myelination of the spinal cord through B12 deficiency. Have only just worked that out - having learnt more about B12D. I had my Terminal Ileum removed over 40 years ago but was not told about the need for B12 injections. I started them around 16 months ago - weekly.

  • Hi I joined this site 3 months ago and Gambit suggested I get B12 bloods tested and I found out I needed loading doses of B12 then every 3 months. At first it all sounded so complicated but I got medication from Amazon. I have spent a lot of money trying different types of meditation but the best one for me is free. Utube have Mindfullness videos which I listen to every night to help me get to sleep. Someone on here suggested Sauerkraut which I thought was German sausage but read in Mail today it's fermented cabbage- yuk. I will give it a try as it is supposed to be loaded with vitamins.Good luckx

  • Raw, organic sauerkraut is good for the gastric problems that come with P.A. It's the probiotics in it that are great for the stomach. It is also a source of vitamin C. .Definitely an acquired taste though. All fermented vegetables are good for the gut.

  • I have fibromyalgia as well and when I first started hurting about a year ago I thought my fibro was coming back 1,000 times worse. I was on the on the floor of the bathtub and letting the hot water hit me and could hardly move or even function. Went to the doctor had tests and ANA came back elevated and from ther my MCV, MCH were also elevated and was diagnosed with perniciois anemia. I was given 1 injection per month and it helped for about a second, then I asked if I could give myself injections and more frequent and the doctor approved and it was helping a lot.....injections every 2 weeks. Then my RN daughter contracted bacterial meningitis and I had to be at the hospital 24/7 and then live with her for a long time.....needless to say my "stress" lowered my B12 to where it was at the start. I then gave myself injections daily for a week, then every 3 days, then every 4 days and today, 8/22/15 was 7 days. I plan on doing injections weekly for at least 2 weeks and then maybe once a month again. You HAVE to "load up" on B12 in the beginning or you will never ever feel any better. I have neuropathy in my feet and hands and when it gets bad I know my B12 is low.....since I have been loading, it has stopped and I am able to keep up with my 22 year old daughter, I'm 65.......you have to load up or it won't work. Don't know if this helped but it's my story. Also, my folate is normal and the B12 oral supplements do nothing. I take a multiple B supplement and that seemes to help, also an herbal supplement. xxxooo

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