Suspected B12 advice

Hi everyone,

I'm new here as I'm currently going through the process of finding out how to get my symptoms treated - last week I went to my GP after having symptoms of extreme tiredness/fatigue, so bad that some days I just don't feel as if I can physically get out of bed, extreme bloating, brittle ridged nails, dizziness/feeling of fainting when standing/getting up and sometimes actually passing out, a large amount of brain fog as well as being very pale.

The same time last year I went to my GP about my symptoms of passing out / feeling dizzy - they sent me for some blood tests and sent me packing saying everything was fine with my results, they instead tested me with a heart rate monitor that came back with results that I have a slow heart beat and low blood pressure due to being fit and that is why my dizziness was occurring - the GP again sent me packing and said there's not much they can do and it's something that I'll just have to live with unless I want to be on meds that they wouldn't recommend for someone of my age (i'm 22).

Since my symptoms have progressively got worse over the last year (dizziness has got worse and now I have the addition of extreme fatigue / tiredness and brain fog) and on returning to a new GP last week, he took a look at my blood tests from last year and said that my B12 levels were very low (he said they were only 2 above the bottom end of the recommended levels), he said he wasn't sure why the old GP said my blood tests were fine if I was showing low levels of B12 as I was showing symptoms that go along with it so he sent me for another set of bloods to confirm his suspicions.

I had never thought about B12 before - and since going to the GP last week I've been researching and it really sounds like my symptoms fit - but I've also been reading that a lot of people who are deficient in B12 have found it very hard to get diagnosed properly - so I just wondered, do you think my symptoms do sound like B12 from your experiences? And do you have any advice for me for when I return to the GP next week to help my diagnosis if so?

I'd really appreciate your help - I just want this feeling of exhaustion to go away! And it finally sounds like I may have found the right path!

Thankyou x

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9 Replies

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  • It sounds as if your new GP is more on the ball than the old one. It does seem as if your symptoms do fit B12 deficiency, and your blood level is low enough to suggest that is the case.

    If I were your GP I'd have two priorities-

    1. Check the possible cause of the deficiency. If you're not a vegan/vegetarian, you haven't had recent stomach surgery, you're not taking PPIs (Proton Pump Inhibitors) and you're not abusing nitric oxide then the most likely cause is gastric atrophy.

    This can be caused by infection with Helicobacter pylori or by an autoimmune attack on gastric parietal cells (Pernicious Anaemia - PA). The former can be cured by a short course of B12 injections and a course of antibiotics. The latter will require B12 injections for the rest of your life. A test for antibodies to Intrinsic Factor (IF) will confirm PA, although a negative result won't rule it out.

    2. No matter what the cause is you should be started on a course of B12 injections. At first 1000ug intramuscular for at least two weeks and a review of symptoms after that. Assuming PA is diagnosed then you need one injection every 2 or 3 months after that, although some people find they need them more often.

    Here are two useful documents from...

    NICE - cks.nice.org.uk/anaemia-b12...

    and

    BCSH - bcshguidelines.com/document...

  • Thank you very much for your reply :) I now feel much more informed for when I go back to the docs next week - no I am not a vegan and eat a very balanced diet so can't be down to that - hopefully will be able to sort myself out as it is really starting to drag me down :)

    Thanks for your help!

  • It sounds very much like Vitamin B12 deficiency. You say that you are only 2 points above the recommended level. That to my mind means that you are certainly deficient. I'm sure that they used the B12 serum test which is very unreliable, (THere are other more accurate tests) Did they give you actual values? I had terrible trouble getting diagnosed, even though my feet had become numb. I went to a private doctor(at a Nuffield hospital) cost about £90 and blood test £70. I had P,A, shown by presence of antibodies to the Intrinsic Factor. You can have P.A. without the antibodies showing up. You can try supplementing with B12 Methylcobalamin sub-lingual lozenges,(Amazon)but this would of course skew your blood test results. Most P.A, patients only find help with injections. I have to self-inject, as I can't manage on the once every three monthly injection. Folate is also important as it needs to act with B12. (I take it as read that you are not a vegan or strict vegetarian as you know that B12 can only be obtained from animal sources ---Meat fish eggs dairy)

    B12 is a water-soluble vitamin, which does no harm and any excess is passed out in the urine.

    If you get no joy from your own doc---1) either try another doc or pay for a private one. getting tested for antibodies to I.F. 2) supplement with sub-lingual lozenges first and failing that self-inject.

  • Thank you very much for your reply :) yes the doctor did give me a value, he said normally the readings are between 150 - 300 and he said mine was 152 which is obviously right down the bottom end of that scale - he said he was surprised the old GP hadn't treated me or even mentioned it to me at all at the time last year because I had symptoms with fit in with B12 - which annoys me greatly as they could've prevented me from getting to this point if that is the case!!

    No I am not a vegan - I try and eat a healthy balanced diet which includes meat fish eggs dairy so don't think it'd be down to my diet - so yeah I think if I have no joy with my doc next week then I will take your advice and go private as I really do think I may be onto something here - and I literally want to feel back to myself again so much!

    Thanks for your help :)

  • Hi,

    The symptoms you describe can be found in B12 deficiency. It may also be worth looking at getting thyroid tests and tests for coeliac disease as the type of symptoms can overlap and sometimes people can have more than one condition...auto-immune diseases can come in clusters. There is a very active Thyroid group on HU.

    coeliac.org.uk/home/

    My top tip is too always get paper copies of your blood test results. I learnt from experience that being told results are normal doesn't mean they are when you get copies of results. Your new GP sounds "on the ball" so hopefully this should not be a problem.

    Have you got copies of your ferritin, folate and FBC (Full Blood Count) results? You need good levels of folate and iron to have good uptake of B12. There can be useful clues on the FBC. High MCV ad High MCH can indicate the possibility of a macrocytic anaemia. There are other blood tests that can help to establish if you have a B12 deficiency eg MMA, Homocysteine and Active B12. These are available privately if unavailable from GP. As Wedgewood mentions the results of these tests could be compromised if you are supplementing yourself with B12. Some people wait and get all their test results before starting supplementing.

    Have you had an IFA (Intrinsic Factor Antibody) test? This can help diagnose PA (Pernicious anaemia) but is not always reliable. it is possible to still have PA if IFA test negative.

    patient.info/doctor/macrocy...

    patient.info/doctor/pernici...

    I also found it very helpful to talk to the PAS (Pernicious Anaemia Society). You can leave a message and they will get back to you.

    pernicious-anaemia-society.... 01656 769467

    Lots of useful info in their library section.

    Other useful websites

    b12deficiency.info/

    b12d.org

    Have you got any neurological symptoms? The reason I'm asking is that the NHS treatment for B12 deficiency is more intensive for those who have neuro symptoms. GPs can find the info in the BNF (British National Formulary) Chapter 9 section 1.2

    If a patient has b12 deficiency with neuro symptoms then I think they're supposed to get an injection every 2 days until their symptoms stop improving. This could mean getting loading injections over a period of weeks or even months. After this period I think they're meant to get an injection every two months.

    b12deficiency.info/signs-an...

    pernicious-anaemia-society.... Symptoms Checklist in here

    b12d.org/protocoltreatment

    Some people struggle to get appropriate treatment from their GPs. Recent documents/articles make it clear that symptomatic patients should be treated even if their b12 blood results are normal range.

    Useful documents/articles

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

    Google "BCSH Cobalamin and Folate Guidelines" This is a lengthy document but in my opinion well worth reading. As far as I know the NHS should be following the guidelines but sadly some doctors are unaware of it.

  • Hi, you absolutely describe the main feeling that I have. I am very clumsy first thing, my brain is a fog and I am just so tired I could sleep for England. I have been having a run in with my GP too, he seems to think I am obsessed by B12. Diagnosed about 9 years ago, with my old GP got injections down to 8 weekly by showing him an article I had cut out of You Magazine. Finally got down to 6 weekly when one of my consultants wrote to him. He also said I should have a consultant for PA but my GP says there are no such things. I have had alot of stomach problems over the years, number of operations, the stomach probs seem common amongst everyone here. I write to my GP as can barely get an appt without a month before booking, that way he sometimes rings me or when I finally can see him I have already primed him. Just wrote and told him I want a H Pylori test, not heard back yet, he probably thinks I am mad again. my experience is you are so lucky to get a GP who knows anything about it as most don't and don't take the trouble to look up any info. There seem to be an increasing number of people with this now so it is about time GP's started to find out for the good of their patients. I am having Endoscopy next week, not quite sure what they are looking for. I have a strange taste in my mouth for an hour or so first thing too, does not go when I clean my teeth. Also itching and odd feelings in my legs. I moved 4 years ago, shame as one of the GP's at my old surgery saw me through a number of ops and he was the one who got me diagnosed as my own GP fed me throat pills and all sorts for the ulcers in my mouth for 8 months without the slightest idea that it was a big sign for PA. Good luck, keep on at your GP, read the posts which are so helpfull and it is so good to know you are not alone and going quietly mad. I don't understand much of the language about levels and all the different things people say on here but I ask for an idiots guide to what they say, everyone really tries to help. We are a giant PA family really. Take care,

    Marcelle

  • Sounds exactly like my symptons. I have been on b12 injections fir two years now and feel almost back to normal. You will get there but it takes time. Hang in and keep positive. I mediated a lot, exercised and spent a lot of time in bed.

  • Hi everyone,

    Thank you so much for all of your advice! Got my blood test results back today and 'everything is normal no further action required' not sure what to do now, might book in with my GP and get him to give me a break down of my results and see whether he's willing to treat me.

    So annoying, was hoping itd flag something this time as it was so low last time, just want to feel better and not like I'm a loony making up symptoms!! :(

  • Since Vitamin B12 is water-soluble . It is usually very safe to add supplements. If you are already taking a supplement by mouth, but are older, or have problems with acid reflux, have low IFA, you may not be able to absorb enough to make a difference. For me injections twice a month helped but I was still lagging at the end of two weeks. I added daily b12 in a dermal absorption formula and that works for me. Enegery level is maintained.. I have tried the patches and yes they work but sometimes caused skin irritations. I found a cream (Vita Sciences Vitamin B12 Methylcobalamin Cream Skin Health) I apply it when the alarm goes off and hit snooze by the time the snooze alarm sounds. I am awake and ready to face the day Between the injections and the cream, my fatigue, brain fog is gone.

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