I can't get the treatment I clearly urgently need

I was diagnosed with low b12 in December 2016 following many weeks of barely been able to move,severe needle like pain in arms , feet and stomach and frightening loss of memory

My GP sent me for two b12 blood tests first came back at 160 and the second a week later st 140 I had to pressure my GP for the results I was given six injections over two weeks end of December and noticed a marked improvement

On the 9th of Feb I felt myself sinking back and say a new doctor who spoke in riddles and clearly has issues about patients having b12 injections I got no where other than two further blood tests one for red blood cells and one for vitamin D

The next day I went on a two week holiday abroad two days into the holiday I developed tinnitus which is constant and has got worse to where I can't sleep

On my return I went to the doctor and explained my new circumstances all to no avail

Can anyone help as the pains have returned what can I do

Can I get the injection somewhere some how

Do the B22 sprays work

Greatful for any advise

As I can't bear more sleepless nights

6 Replies

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  • Hi Active57 I'm sorry to read of your troubles.

    Can you not make an appointment with the original doctor who scheduled you six loading doses? If you can find out the result of your recent tests and ask him to test your Folate level.

    It may be that you are Vitamin D deficient some of the symptoms of which are similar to a B12 deficiency.

    Sadly if you start self supplementing you may well alienate your doctor and if he/she wishes to test your B12 level which may have dropped since the end of December, the supplement will skew the results and might possibly prevent further injections via your surgery.

    Do you have any idea why you became B12 deficient in the first place?

    I am not a medically qualified person but there are others on here who will be able to give you good advice.

    I wish you well

  • Hi Clivealive really appreciate your quick response I will try and meet the original doctor and get back to you thanks again

    Active 57

  • I agree with everything clivealive said. Also, I have heard that the b12 drops you can absorb under your toungue are beneficial in high enough doses. This is if you don't have PA. With PA you can't absorb the b12 through digestion which is why intramuscular injections are needed. I also would suggest taking vitamin D3 supplements and a multivitamin in general. These could both help your symptoms if you are suffering from another unknown deficiency in addition to the b12. Just make sure you tell your doctor (GP) when you see them next.

  • supplementation options are sublingual sprays and lozenges, nasal sprays, and skin patches. Not all work for everyone so you just have to try and see if it works for you.

    small amounts of B12 are actually absorbed outside the ileum (varies from person to person) so in theory flooding the gut with very large amounts of B12 can be effective but certainly doesn't work for everyone with absorption problems ... and the evidence on how effective sublingual and nasal are as alternative methods of delivery to just high doses flooding the gut isn't entirely clear.

    Think that the small studies that have been done show that sublingual is comparable to high dose oral at 1%+ and nasal is a bit better at about 3% absorption - don't know if there are any figures for skin patches.

  • Hi,

    Are you in UK? Some info below may not be relevant if you are elsewhere.

    1) Pinned posts on this forum

    2) BSH Cobalamin and Folate guidelines

    Uk b12 document which gives guidance to doctors on diagnosis and treatment of B12 deficiency. I'd suggest reading whole document if you are UK based. Sadly there are some UK GPs who may be unaware of this document.

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines.

    Link below is to flowchart in BSH Cobalamin guidelines.

    stichtingb12tekort.nl/weten...

    Makes it clear that patients who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test. IFA test can help to diagnose PA (Pernicious Anaemia) but is not always reliable. It's possible to have PA even if IFA test is negative...Antibody Negative PA.

    3) BMJ B12 article

    5th point in summary may be relevant to you.

    bmj.com/content/349/bmj.g5226

    4) PAS website

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    PAS can sometimes intervene by writing letters on behalf of members who have had injections withdrawn but easier for them to help people with a definite diagnosis of PA I think.

    May be relevant stories on Martyn hooper's blog. Martyn is the chair of the PAS.

    martynhooper.com/

    5) B12 deficiency info website

    b12deficiency.info/

    Useful link about writing letters to GP if unhappy with treatment.

    b12deficiency.info/b12-writ...

    6) b12d.org

    b12d.org/

    7) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Up to date with UK guidelines. he hasw ritten other books about B12 and PA.

    8) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart. Very comprehensive book about b12 deficiency.

    9) BNF (British National Formulary) Chapter 9 Section 1.2

    All UK GPs will have access to BNF. Gives details of UK B12 treatment.

    evidence.nhs.uk/formulary/b...

    Blood test results

    I always get copies of all my blood tests. I learnt to after being told everything was normal/fine and then finding abnormal results on copies.

    nhs.uk/NHSEngland/thenhs/re...

    In relation to B12, I look at B12, folate , ferritin and full blood count.

    b12deficiency.info/b12-test...

    b12deficiency.info/what-to-...

    There can be useful clues on full blood count.

    labtestsonline.org.uk/under...

    Causes of B12 deficiency

    Hopefully your GP is trying to find out why you are B12 deficient.

    b12deficiency.info/what-are...

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

  • Hi! :-)

    As well as Vit D and folate, it might also be worth checking your ferritin levels too (or a full iron panel) if it has not already been done as symptoms of iron deficiency can overlap with those of B12 deficiency too, as they include tiredness, tinnitus and others.

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