Doctor refused to give me B12 tablets but symptoms have returned

I've been suffering from B12 deficiency for 2 years. When I was first diagnosed my levels were 98. I was tested to see if I couldn't absorb or if it was just my diet and apparently I can absorb so I was prescribed 1 x 50mg (I think) of B12 tablets per day. (I eat loads of red meat and a fair amount of greens so I'm not sure how much I need to eat). I was tested and had levels of 155. I begged a different GP to my normal one to let me have a b12 shot. My normal GP then put my dose up from 1 to 2 tablets a day. After taking these for a month my levels went up to 225.

I then put my new prescription in at the beginning of June and I was sent a letter to say I don't need them any more and I should have another test in 3 months to check my levels. Since then I've had 1 episode of brain fog again, frequent ringing in the ears, a few shooting pains and last night the tremors have come back. This is the bit that bothers me the most, it makes me lethargic and I can't exercise. I can't do very much other than go to work, not function very well, then lie down after.

I've booked another blood test for next week which is a bit early but hey ho. I feel awful.

Does anyone know how to discuss this with the doctor. I'm sure he thinks I am a hypochondriac. He even sent me for x rays to try to explain the shooting pains as he said they weren't B12 related, even though I read online that they are. Are they? I'm contemplating asking to see a different GP. What if my levels are still around 225. Does this just mean I have to put up with it? I'm really fed up and I'm putting on weight because I am just too tired to exercise (I'm used to doing a fair amount of exercise so this is really out of character for me).

13 Replies

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  • This is awful, but unsurprising! Doctors really don't understand. A level of 255 is very low. There are documents you can show your GP, for example from the British committee on standards in haematology and the British National Formulary. Your doctor should have read them. I don't have the links but I'm sure others on here will give them soon. The documents guide doctors stating that treatment is for life, and that the ranges are too low so doctors should treat symptoms and not rely on blood tests.

    If all else fails, you can buy sublingual lozenges from Amazon made by Jarrow. I started on these and was taking up to 10x5000mcg daily. I then started to self inject then managed to get my doctor to prescribe them after seeing a haematologist who he referred me to after reading the guidelines I gave him. I will self inject between my prescribed doses. Maybe you could ask for a referral? Good luck. :-)

  • Thank you for the advice. I didn't realise it was low. I thought as long as it was over 150 it meant I was supposed to be ok. I will look up the lozenges on Amazon too. Thank you.

  • I'll bet that the 'testing to see if you can absorb' was actually a test for something called anti-IF (Intrinsic Factor) antibodies. This test is notoriously unreliable - 50% of people with Pernicious Anaemia (the inability to absorb B12 from the gut) test negative for this.

    Download my summary file - frankhollis.com/temp/Summar...

    It links to a few scientific documents, two of which mention the unreliability of the test and how the result should be ignored in the face of other evidence (low serum B12, healthy diet, symptoms of B12 deficiency). Print out those two documents (BCSH - British Committee on Standards in Haematology and NICE - National Institute for health and Clinical Excellence) and highlight the relevant parts.

    Do it twice. Give one copy to your GP and use the other as a reference in your discussions. If you can take an advocate (friend, partner, big threatening biker dude) do so. Brief them beforehand so they can remind you of any points you may miss.

    Don't bother with another blood test. See the GP again and demand to receive the treatment that the experts say you should have.

  • Thank you so much for your reply. I had no idea the test was so inaccurate. I'll make sure I take the info you have supplied to the GP too as you have suggested. I can't actually get to the doctor until Tuesday so I'll make sure they see me straight after they take my blood. I can't go in like this. I've got myself into a bit of a mess today trying to do things as normal. I'm paying for it now.

  • When you have your blood test make sure all the boxes are ticked for all the other related things as well, ie,folate

  • Thank you. I did have a fair few boxes checked. He went through some of them last time. I'll get a second opinion from another GP though because I have no idea what the results are or mean. Thy never provide a copy of them. Thanks for replying

  • You can ask for a physical copy of your blood tests from the receptionist. If you do you can actually see whats going on and if you post them on here people might be able to advise you.

  • I didn't know that. I'll ask for them when I go. Thank you.

  • Usually the test is for B12, ferritin and folate. As I understand it, but do double check, low folate also causes problems in itself, and it is needed to properly metabolise B12. However, high folate can mask a B12 deficiency.

  • Are you a member of the PAS? They can sometimes intervene on behalf of members and can pass on useful info.

    pernicious-anaemia-society....

    PAS tel no 01656 769 717

    Page 20 in the "BCSH Cobalamin and Folate Guidelines" is a diagnosis flowchart that shows the recommended process that a GP should go through with someone they suspect has a B12 deficiency. My personal opinion is that it's worth reading the whole BCSH Cobalamin Guidelines document.

    Page 8 in the BCSH Cobalamin Guidelines has details of recommended UK B12 treatment.

    UK b12 websites

    b12deficiency.info/

    b12d.org

    martynhooper.com/

    Have you read Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" I gave a copy to my GP.

    Unhappy with treatment?

    b12deficiency.info/b12-writ...

    nhs.uk/NHSEngland/complaint...

    The BCSH Cobalamin Guidelines mention Antibody Negative PA and makes it clear that it is possible to have PA even if IFA (Intrinsic Factor Antibody test is negative.

    This is a link about possible causes of b12 deficiency.

    b12deficiency.info/what-are...

    Untreated or inadequately treated B12 deficiency can cause permanent neurological damage.

  • Thank you so much. I am so grateful for the information and your reply. Neurological problems is what is worrying me . I will take this information to my GP and I need to get firm with it and stop thinking they know best. Thank you.

  • I am not a medic jsut a person who has struggled to get a diagnosis.

  • Hi,

    My understanding is that people with B12 deficiency with neurological symptoms are supposed to have extended loading doses then maintenance injections every 2 months whatever the cause of their B12 deficiency.

    See page 8 in BCSH Cobalamin and Folate guidelines for details of B12 treatment for those with b12 deficiency, both with and without neuro symptoms. Similar info in the next link in Management section.

    patient.info/doctor/pernici...

    I found it helpful to give GPs a copy of the PAS Symptoms checklist with all my symptoms ticked. I also added symptoms that weren't on the list and made sure I wrote down every single neuro symptom I had.

    pernicious-anaemia-society....

    Click on link for Symptoms Checklist on Symptoms page.

    In the past I have written letters to GPs which include a list of symptoms. My understanding is that a copy of any letter written has to be placed in your medical file so are a record of concerns raised. I always keep my own copies as well as sometimes letters get lost from files.

    If you are a member of the PAS they might be able to pass on info that the GP would find useful. The PAS website has a section for medicla professionals.

    "I need to get firm with it and stop thinking they know best"

    If I had accepted what the medics said originally which is that my problems were due to depression I think I would have deteriorated to the point of showing signs of dementia and increased neuropathy so I had to become proactive.

    I wish you luck with getting the right treatment.

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