B12 deficiency, so frustrating

I went to my GP with breathlessness about 4 weeks ago and they diagnosed it as asthma but I asked for a blood test because I felt like I was anaemic. My ferritin was 19 and my B12 was 144. I didn't know anything about B12 deficiency but after getting my test results and reading about it I now realise that so many symptoms I've put down to age (42), tiredness and overdoing it could have been due to my B12. I felt really positive and expected to feel better after the 5 loading doses. I did start to gradually feel better while having them and even managed a run after the last injection but now a week on I feel awful and the breathlessness has returned. I am still exhausted and struggling to concentrate and remember things but even though I quoted the NICE guidelines for continuing the injections until symptoms stop improving my Doctor refused. I am not sure what to do next, do I keep going back to the GP, go private or self inject?

10 Replies

  • The only person that can answer your question is you though other options would include - trying to get a second opinion, though no guarantee you'd get one that was any more co-operative.

    Did your GP tell you why he wouldn't continue injections? You could write to the practice asking or clarification in light of the BCSH guidelines and see what that throws up.

    You could also try joining and contacting the PAS and asking them for help.

    There are other forms of supplementation that would be options as well. There hasn't been any rigorous analysis of most though there has been some work on the use of nasal sprays and they were recommended by the CDC in the US as the option for patients who had problems with needles and injections.

  • The GP has not been helpful he said it was not advised by the hospital. I will write to them again. Do sprays etc actually work, I've been using patches and huge dose lozenges for weeks?

  • nasal sprays certainly work for me - though I can't guarantee they will work for everyone - like most things B12 most of it is try it and see.

    ask for a copy of the recommendation from the hospital and if you can have a referral to a specialist.

  • Hi mj1973 do you have any idea why you became B12 Deficient in the first place?

    "Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

    Vegetarians, vegans and people eating macrobiotic diets.

    People aged sixty and over

    People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

    People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

    People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

    People with a history of eating disorders (anorexia or bulimia).

    People with a history of alcoholism.

    People with a family history of pernicious anaemia.

    People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

    People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

    People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

    Women with a history of infertility or multiple miscarriages.

    Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency"

  • Thank you for your reply, I have no idea what has caused it but I suspect PA, my Grandad had it. I don't drink, eat a healthy diet with plenty of B12 rich foods, am not veggie and don't take any medication. I had it checked in 2013 when I started to feel exhausted and it was 226 then. I do have an intolerance to gluten.

  • Hi again mj1973 I'm not medically qualified but it might be a good idea to tell your doctor about your Granddad - it may make him think again as P.A. can be inherited.

    I wish you well.

  • Thank you, I wrote a letter to the GP and told him about my Grandad, they advised me to come back in 4 months for another blood test. I have now got them to agree to refer me to a haematologist.

  • you will have a low iron level too because you need b12 to form blood cells . A good source of iron is blackstrap molasses . Try buying the active form of b12 methylcobalamin which comes in lozenge spray and injection . You can buy insulin needles yourself and simply grab the fatty area at the back of the top of your leg near your buttock to inject . When you have got your b12 levels up start using some methylfolate too . Look into eating fermented foods such as Korean Kim chi . Bladderwrack seaweed is a good source of b12 as is dulce . Beetroot contains cobalt . Try crushing a methylcobalamin tab into a full fat unsugared natural youghurt and leave overnight to ferment at room temperature then eat for breakfast .

  • Hi,

    Have you read the "BCSH Cobalamin and Folate Guidelines"? There's a link in second pinned post on this forum. it gives UK guidance on B12 deficiency treatment and diagnosis. I gave a copy to my GPs.

    B12 books

    "Could It Be B12" by Sally Pacholok and JJ. Stuart

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. I gave a copy of this to my GPs.

    UK b12 websites





    B12 Symptoms lists

    pernicious-anaemia-society.... I ticked all my symptoms on PAS Checklist and gave a copy to GPs.



    "I suspect PA, my Grandad had it"

    Link about genetics and PA


    "GP has not been helpful he said it was not advised by the hospital"

    Did Gp mean he had written for advice on how to treat you? Perhaps to haematologists at local hospital? I was told that NHS should be following the BCSH Cobalamin and Folate guidelines.

    A FOI (freedom of Information) request to local NHS website might be helpful in finding out whether the "BCSH Cobalamin and Folate guidelines" are being used.

    In some areas of the UK, local b12 deficiency guideliens are being used and some of these local guidelines have not been updated since the BCSH Cobalamin guidelines came out in 2014.

    I am not a medic just a perosn who has struggled to get a diagnosis.

  • Hi mj1973,

    My Husband's Doctor thought his breathlessness and not being able to walk for long or uphill without breathlessness was down to his Asthma so doubled his dose asthma inhaler dose. Doubling his asthma dose caused 2 years of painfull night cramps, side effects of the asthma drugs. Then Doctor showed him how to exercise before bedtime to combat the night cramps. :o ???

    We later found out 2 years later (thanks to members on HU,) that his breathlessness was all down to having low (Under range) iron, thanks to doing our 'at home' finger prick blood iron panel test. It was nothing to do with his asthma at all.

    Low iron = low oxygen= breathlessness. (so low iron is certainly one cause of breathlessness. :) )

    Hubby can now walk and climb uphill without the breathlessness now, thankfully and no more painful night cramps.

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