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hi I was diagnosed earlier in the year, I had six loading doses and following dose 8 weeks later. I've had a blood test any my B12 level is nw 1200 and folate now ok too as I was taking folic acid. Dr now says I'm ok dont need another B12 injection for three months. He says he doesn't know why I'm tired and aching all the time. And why I have numb hands and feet? Is this right? Am I ok now? Thanks for any advice

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  • Hi jomorgan1605. Your GP appears to be basing his decision not to give more frequent B12 injections on your serum B12 result, rather than your symptoms. This is wrong. Once B12 injections have been given all the guidelines state that testing serum B12 levels is not required (unless looking for low levels). The level of B12 in the blood is not an indicator of the efficacy of treatment - your GP should be looking at symptoms (and symptom relief), rather than serum B12 levels.

    In addition - you have neurological symtpoms so following the initial six loading doses, you should continue on every other day injections until no further improvement - for some, this can take many months - for others it happens quite soon (everybody reacts differently to treatment - nobody knows why this is 🤔).

    Your GP can find details about this in a book called the BNF - he'll have a copy.

    Here's what the BNF says (note that the prescribing details for those with neurological,symtpoms is further down - your GP may have to read further than he usually does):

    For HYDROXOCOBALAMIN

    Prophylaxis of macrocytic anaemias associated with vitamin B12deficiency


    By intramuscular injection

    * For Adult 
1 mg every 2–3 months.


    Pernicious anaemia and other macrocytic anaemias without neurological involvement


    By intramuscular injection

    * For Adult 
Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 3 months.


    Pernicious anaemia and other macrocytic anaemias with neurological involvement


    By intramuscular injection

    * For Adult 
Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.


    And here's a link to the BNF:

    bnf.nice.org.uk/drug/hydrox...

    Just a couple of things that it might be worth knowing:

    The BNF prescribing details refer to pernicious anaemia and macrocytic anaemia so...

    1) If you haven't been diagnosed with pernicious anaemia, your GP may assume that this does not apply (odd - but many do). However, the treatment for pernicious anaemia is treatment for the B12 deficiency it causes. So the treatment for B12 deficiency is the same - whatever the cause (PA is only one potential cause of B12 deficency).

    2) Macrocytic anaemia is not always present in those with PA or B12 deficency. 20-30% of those with B12 deficency and neurological symptoms present without macrocytic anaemia. The treatment is still the same - B12 injection - intensive neurological regime of B12 injections.

    It's important that you get the right treatment as soon as possible since this gives the best chance of optimal recovery.

    So...it would be a good idea to go back to your GP to discuss this further and ask to be put on the correct treatment.

    I'm going to post this reply and then pop of to get some more links to information that may help (if I leave the page this answer will disappear - then I'll have to start again 😖). Look in particular at the BCSH Cobalamin treatment guidelines, links to problems with B12 testing, and information about B12 with neurological symptoms.

    It might look like a lot of reading but most of the links are to one page documents - and all are annotated so hopefully you'll be able to spot what's most relevant to you - and read that first. (The BCSH guidelines are a little longer but there are useful summary sections throughout if you can't face the whole thing 😉).

    Hope all goes well with your GP and that you manage to get the correct treatment. Post again if you have more questions or need more help.

    Good luck 👍

  • And here's the links:

    b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

    bnf.nice.org.uk/drug/hydrox...

    (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 Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    nhs.uk/Conditions/Anaemia-v... (NHS Choices. B12/Folate Deficiency - Small Section on Functional B12 Deficiency)

    cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

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

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

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

    stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

    stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

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

    👍

  • Hi,

    Might be worth joining PAS (Pernicious Anaemia Society). They can sometimes intervene on behalf of PAS members.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left.

    There are stories on Martyn Hooper's blog about how PAS has helped members.

    martynhooper.com/

    Link about writing letters to GPs about B12 deficiency.

    b12deficiency.info/b12-writ...

    Point 1 is about undertreatment of B12 deficiency with neuro symptoms

    CAB

    citizensadvice.org.uk/healt...

    HDA patient care trust

    hdapatientcaretrust.com/

    UK charity that offers free second opinions on medical diagnoses and treatment.

    I am not medically trained just someone who has struggled to get a diagnosis.

  • "He says he doesn't know why I'm tired and aching all the time. And why I have numb hands and feet?"

    With the greatest respect to your doctor, surely it's his job to try to find out - or to refer you to the person who might be able to.

    Some good advice above and links above, but perhaps it will be worth asking about a referral - I would guess either to a haematologist or a neurologist.

    Just one extra thought - have you been tested for iron levels, as that as well as B12 and folate can cause some of the symptoms.

    Best of luck and hope you can get some answers or relief from the symptoms.

    Gavin

  • Have you had your thyroid correctly tested - not just the TSH ? Low B12 & Low Thyroid so often go together.

    Being hypo can cause all over aches and pains. - especially when the FT3 is low. T3 is the Active Thyroid hormone and needed in every cell of the body - so if low there is not enough to go around. 😊 The brain has first call followed by the gut/immune system .....

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