Need some advice regarding B12

Hi....I'm in a bit of a confusing place regarding B12 deficiency. I was diagnosed in 2011, after a year of symptoms becoming progressively worse. I literally had every symptom on the list, and was really unwell. I had had neurological symptoms since 2007 and had MRI scans etc, B12 was never tested at the time, so they couldn't find a cause for my symptoms, and even before then my health wasn't great, right from late teenage years....I've really been through it basically, and trying to lead a normal life has been difficult due to being unwell a lot of the time. I was diagnosed when an immunologist (as I had also started suffering from angioedema) picked it up on a blood test. My level was 154, which my GP said wasn't THAT low, and made me feel like the immunologist was just making a big deal out of nothing (I had no energy, my speech was affected, I had pins and needles all over my body, especially hands and feet, really dizzy all the time to the point where I felt like I was drunk, I had sore lips and tongue, really pale, memory problems and felt like I was in a fog and that's just to name a few of the symptoms, I was barely functioning, at all. I was prescribed B12 injections and literally within a week or so I felt amazing!!! All of the symptoms I'd had for years disappeared! I was then given the standard 3 monthly B12 jab (which was not enough, and all of my symptoms came back, then they took me off them completely as they said it was for people who can't absorb it (which I really don't think I can). I knew from researching it that my illness was definately caused by B12 deficiency, that I was more than low enough to be really ill with it, and that a lot of people don't manage on 1 injection every 3 months. I knew from what I had read and my own experiences that I would get nowhere with the NHS so I found out about self injecting. Within days of self injecting, again I felt SO much better, and injected regularly for 3 years....most of that time I stayed pretty well. Then I had symptoms of low pottasium, so I came off it and was scared to inject incase it happened again, so I stopped, then over the next year, sort of gave myself loading doses every few months (I would feel amazing after and then symptoms would come back again, after a while of not injecting) but on one occasion my pottasium dropped again, and it scared the hell out of me. When I go to my GP I get nowhere as they refuse to believe that I need to inject more than once every 3 months, and that any symptoms I have between then is nothing to do with B12...I really don't know how they can say that. I am back to self injecting and feel a lot better for it....I space the injections out every few days and will do so until I find a maintenance level that works for me basically. I would happily do this without involving the NHS doctors anymore now. However it caused me to have problems at work, during a bad patch, and now occupational health are insisting I go back to my GP and get referred to a haematologist. I know from what I've read the haematologist won't tell me any different and I know that my GP probably won't refer me, but work are insisting on it....I don't want to end up looking like a hypocondriac as I know I'm not and I also don't want to come off my self injecting just to prove to the haematologist that I have it (cos it will take ages for the injections to leave my blood, I can't manage without them). They seem to think if my B12 is within the normal range there is no problem....but if you have pernicious anaemia your B12 needs to be at a high level for a long period of time, to get and stay well....GPs don't seem to understand this and they put my symptoms down to chronic fatigue or anxiety or atypical migraines....What should I do in this situation? Sorry this post is so long.

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  • Hi Ceriane. Can I just ask...have you had a confirmed diagnosis of pernicious anaemia, or a diagnosis if B12 deficiency?

    Some things I can suggest that may help but it depends on which diagnosis you have.

  • Hi Ceriane. Apologies if I pre-empt your reply to my earlier question but I expect you're probably quite worried so I thought I'd get some words out to you.

    First, your GP's have let you down badly and have never treated your B12 deficency appropriately, as you know.

    It's not clear from your post whether you have a confirmed diagnosis of PA - if you do, then you do have an absorption problem and treatment is for life. Your treatment should never have been stopped. If your diagnosis is one of B12 deficency, then the most common cause of this is an absorption problem: and the treatment for B12 deficency (in the absence of PA) is the same - B12 injections. (Note: your GP should test you for PA if this has not already been done).

    You have neurological symptoms so you should have been prescribed the neurological B12 treatment regime - 6 x loading doses and then injections every other day until no further improvement. And this treatment regime should have been accompanied by frequent monitoring of your potassium levels to ensure that they remained at a safe level. So your GP has failed, on all counts.

    You have not been prescribed this regime, you still have symptoms - including neurologiacal ones, you can still ask to be put on this regime.

    But expect you already know all this ๐Ÿ˜–.

    It's is quite usual for occupational health practitioners to refer employees who have health issues to their GP for medical assessment, investigation and treatment and this usually works well and is beneficial. However, this is done in the expectation that the GP will understand the medical history and investigate, treat, and if necessary refer for further specialist advice, in an appropriate way. And given the way your GP has behaved so far, it looks unlikely, as it stands, that you are going get the help and treatment you need.

    Now that occupational health (and hence your employers) have become involved, this has perhaps become time-critical, so it's something you need sorting out quite quickly.

    So first, I'll suggest some ways you can list an advocate who will perhaps intercede with your GP, on your behalf (to speed up the process) and second, I'll suggest some things you can do simultaneously to try and get the treatment you should have been having from 2011 onwards.

    If you have a confirmed diagnosis of PA and you join the Pernicious Anaemia Society, Martyn Hooper (the Chair) is sometimes able to act as advocate and contact GP's on behalf of members who have had treatment withdrawn or who are struggling to get appropriate treatment. However, it's my understanding that he can only do this if a confirmed PA diagnosis is in place (since PA is the remit of the Society he can only speak to that - it would be very difficult for him to argue that treatment for PA should be prescribed if that specific diagnosis is not in place ๐Ÿ˜–). Martyn has had a lot of success in getting treatment for members so this is the best route if you have a PA diagnosis in place. The best way to contact Martyn is by telephone (contact details on the website). Usually, the answer phone picks up calls but Martyn does return calls as soon as he is able (may take several days if he's out of the office or having a busy time).

    If you have been diagnosed with B12 deficiency (but not PA) Tracey Witty at B12deficeny.info has a wider remit (all things B12 deficient) and also acts as advocate on behalf of patients who are unable to access appropriate treatment. Her email address is one the website and she usually replies quite quickly. Just leave her a brief history and mention the work situation and she'll respond as soon as she's able.

    Contacting either Martyn or Tracey is a good idea as it will enable you to enlist someone knowledgable to speak on your behalf (unfortunately, all we can do is speak in this little space - bit oh how we all wish we could do more ๐Ÿ˜„).

    Next - you're obviously quite well informed about B12 deficiency so I think a good next step would be to try and 'educate' your GP's. I'm going to include some links to information about the diagnosis, treatment and guidelines relating to all things B12 deficient, things that your GP should know, but doesn't. Print and read all the information and highlight anything that is relevant to your case (you'll know it when you see it) then make a bullet point list of all the points you want to raise with your GP and link this to the highlighted evidence in information.

    Make an appointment with your GP - a double one if necessary - and go along prepared to make your case and request that you be treated in accordance with the guidelines. It will help if you can take somebody with you as GP's are usually more attentive and less hostile if a witness is present. Sad, but true. If that person is able to read your information and the arguments you are going to present, even better as they will be able to step in and support you, if necessary.

    And also take with you...

    If you're a member, go to the PAS website (library section) and download the document called 'Subacute Combined Degeneration of the Spinal Cord'. (If you're not a member, do an Internet search and something will pop up. But..use information about the condition only - treatment regimes vary and its best to stick to UK guidelines - which you in the links below).

    The PAS document (or Internet research you find) outlines one potential outcome if B12 deficency is untreated or under treated: the neurological condition subacute combined degeneration of the spinal cord (SCDSP). This is potentially irreversible.

    I'm not suggesting you have this, but GP's are often unaware of the neurological havoc that B12 deficiency can wreak on the human body. Yours certainly is. And it might just shock your GP into treating you. It should do!

    If it doesn't and you're feeling really brave, ask him if he is willing to accept responsibility for this potential outcome - if he is wrong (you'll have to be brave to do this, but it will be worth it if the outcome is that you get treatment) Then smile very sweetly and politely...gently gently....ask for this specific document to be placed on your medical records together with the fact that you have again requested (and been refused) treatment for B12 deficiency.

    Next: GP's often diagnose (misdiagnose) chronic fatigue, anxiety, depression.....ad infinitum...instead of investigating throughly.

    You have been ill for a long time....neurological symtpoms, perhaps gastric symtpoms? As your GP is convinced this is not a B12 problem, he/she should be investigating further to try and diagnose and help you. It would be quite appropriate to refer you to both a neurologist and a gastrologist so that other potential underlying causes for your symptoms can be Investigated. Ask for both those referrals. it is,your right to do so. And the thing is...you only have to find one specialist who happens to understand B12 deficiency - and they will instruct your GP to treat you. And it will also give you the reassurance that other potential conditions have been ruled out.

    A thought - can you ask for a referral back to the immunologist who originally diagnosed you with B12 deficiency. They could write to your GP and ask for your treatment to be recommended - at the dose frequency indicated in the neurological regime.

    So....you've been to the doctor...requested treatment...and hopefully, got it.

    If not, the next step would be to formalise this and put the same request for treatment, with evidence, in writing. And ask for a written response, which should include medical evidence to support any further decision not to treat you (they won't be able to as there isn't any).

    Actions after that would include escalation of the same written request to NHS direct.

    Or...can you change GP surgeries completely? No guarantees that a new GP would be any different but if has worked for some.

    But...none if this will be necessary if you've managed to enlist the help of Martyn or Tracy ๐Ÿ˜„

    Finally, I'm so sorry that you're in such a difficult situation. I'm also sorry that all we can do here is words...it never seems quite enough...๐Ÿ˜–

    Please do post again if you need any further advice or information...or even if you want to vent or have a chat...and it would be really good to hear how you get on.

    ๐Ÿ‘

    LINKS TO GUIDANCE

    evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

    onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency โ€“ Good to know before seeing GP)

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

    stichtingb12tekort.nl/weten... (B12 Deficiency/Neurological Symptoms: Can Be Present in Absence of Macrocytic Anaemia or PA)

    ๐Ÿ‘

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