Stopped injections

I have had b12 injections for 3 years for low b12 after an awful time fighting to get the treatment I needed. I was really ill with a lot of neurological symptoms. Even had brain scan.

Once again the fight has started!

My gp insisted I had my blood checked before my next jab was due. My blood was above the 2000 mark before and it's now 1900.

Even though I have all my symptoms back, including numbness, drained, and white as a ghost he has stopped my treatment.

He said the level is too high and having a had every three months is "inappropriate"!!

My father has pa too and he's never had a problem getting his treatment and never had his blood checked.

The doctor is digging his heels in now as I have argued with him that he isn't a specialist.

I know I need to have the jabs every three months.

Any idea where I could go privately to get the right treatment? I'm in Kent

This has become a nightmare!!

Thanks. 😋

11 Replies

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  • Hi,

    I'm surprised your injections have been stopped.

    I'd strongly recommmend that you ring the PAS (Pernicious Anaemia Society) ASAP

    Head office: 01656 769 717 You can leave a message and they will get back to you.

    the library section on website has some useful info.

    pernicious-anaemia-society.org

    The following documents/websites/books might be interesting.

    ukneqas-haematinics.org...

    bcshguidelines.com/.../...

    Page 29 is a diagnosis flowchart. It is likely that your local NHS should be following the recommendations. You could ring your area's CCG (Clinical Commmisioning Group) and ask if your county/area is following these guidelines. It's a long document but well worth reading.

    b12deficiency.info

    There's a section on above site about writing to GP if you are unhappy with treatment.

    b12d.org

    Has your GP checked the BNF(British national Formulary) Chapter 9 Section 2.1 (might be section 1.2) for its guidance on B12 deficiency.

    patient.info/doctor/pernici...

    Look in the "Management section" for how neuro symptoms and B12 deficiency should be treated.

    Have you had a full blood count recently?

    With the "Full Blood Count" high MCH and high MCV can indicate the possibility of a macrocytic anaemia.

    patient.info/doctor/Macrocy...

    The chair of the PAS has written two useful books.

    Pernicious Anaemia: the Forgotten Disease: The Causes and Consequences of Vitamin B12 Deficiency

    Living with Pernicious Anaemia and Vitamin B12 Deficiency

    It can be helpful to take someone supportive with you to appts.

    Perhaps someone who knows about the family history of PA?

  • Agree with sleepy bunny that the best thing to do - assuming you are UK based - sounds as if you are - is to contact the PAS - you will probably need to join but it isn't expensive and if it gets you the treatment you need ...

    Alternatives to tide you over:

    Look at other forms of supplementation - there are sublingual sprays and tablets that work for some people - and also nasal sprays/drops and skin patches that work for some people.

    You can also source B12 ampoules from outside the UK (eg Germany) and inject yourself - either intramuscular or sub-cutaneous - though you really need someone to show you how to do intramuscular - but there are videos out there.

    Going private can be really expensive and people are often charged anything around the £180 mark for each injection - which is pretty outrageous considering that an ampoule costs somewhere around 70p.

    You could try pushing back at your GP on why having high levels is bad - hydroxocobalamin is used to treat cyanide poisoning at 5000x the dose you have each 3 months over 15 minutes with a follow-up dose if necessary 30 minutes later.

    The consequences of B12 deficiency are pretty dire. You could also ask him what he knows about functional B12 deficiency - which occurs when your B12 serum levels are high and your body has an auto-immune response that tries to shut down the mechanism that transfers B12 to the cellular level, so you can have high B12 serum levels but nothing is getting to the cells that need it. I haven't managed to find anything definitive in the literature on treatment but what I have been able to find implies that if you have an absorption problem and experience this reaction then the only way of treating it is to actually keep B12 levels so high that you have more than you can create anti-bodies to.

    Really hope that you find a solution soon.

  • I'm so sorry - it is so depressing that you have such obvious neurological symptoms and PA in the family and GP is still ignoring the latest guidelines and research, which have details about blood tests whilst treating with injections.

    This happened to my relative and, as she was unable to do so herself because she had been diagnosed with dementia and ME, I wrote to her GP detailing symptoms, history, etc. and emailed the latest guidelines to the surgery. This was followed by a telephone consultation with her doctor, in which we were eventually able to persuade GP to trial the injections. After a change of doctor within the surgery, she now has them monthly. Would you be able to enlist some family support too?

    This link gives advice on writing to your doctor with useful templates. Also an excellent film:

    b12deficiency.info/b12-writ...

    You could also include the link below and summary of the latest BMJ research document, (if GP won't read the full document) which gives advice on further tests and when to refer to specialists.

    cmim.org/pdf2014/funcion.ph...

    Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given."

    ***"If there are neurological disturbances, then treatment should be expedited and started without delay - 1,000 u.g. i.m. on alternate days. This should be continued for up to three weeks or until there are no further improvements.

    In irreversible cases, e.g. P.A., the treatment should be continued for life. "

    ncbi.nlm.nih.gov/pubmed/259...

    'Early treatment may prevent devastating complications':

    ncbi.nlm.nih.gov/pubmed/114...

    Very best wishes for a good outcome.

  • Yes there dr Sharma in harley street

  • Hi Nrxx

    I also had my treatment stopped due to B12 levels going up to 502.

    I went to see a private doctor 2 months after my last treatment, I blew around £500 on tests that got me nowhere.

    I then waited 5 months with no b12 before asking my GP for another test. It came back as high (704).

    I went back to self injecting on Saturday and now feel loads better.

    I hope you get sorted soon.

  • Hi Nr I feel for you, he is treating you badly through ignorance. I had a similar battle but they didn't stop it altogether. Ask him does he know how much of the B12 in your system is usable i.e. active. In the meantime get as much sublingual as you can of methyl and hydroxy to minimise the damage. Do you self inject?

    Davidpa

  • Thanks for all your replies. It's great to have help.

    I don't self inject. I'm a bit worried about doing it! Also as its treatment I will need for life I'm worried that there will come a time when I won't be able to get the b12.

    I really want to get it sorted and the right treatment put on my notes, so I know it is sorted for life!

    I'm going to speak to the society to get advice.

    Also my partner and my dad are going to help me talk to the doctor and hopefully get the injections every 3 months again.

    Think it's going to be a long battle! Luckily I have 5 injections to last a while.

    Thanks again!!

  • Hi, I can imagine this is a nightmare. The only source I can find about this is guidelines by a Dutch B12 research group. They say very clearly that [1] doing B12 levels during treatment is not useful [2] high B12 levels while on treatment are normal, and should NEVER be a reason to stop treatment [3] treatment should NEVER be stopped unless the cause of B12 deficiency is clearly removed [e.g. a vegan who starts eating a normal diet]. b12researchgroup.wordpress.... Get Google translate to translate the page.

  • If you can't get any joy from your GP, then try if B12Boost sublingual spray, or sublingual tablets [methylcobalamin 5000 microgram] from Amazon may help. You can't overdose B12 [see the same Dutch B12 research group b12researchgroup.wordpress....]

    The reason GPs are reluctant to treat B12 is that it takes a nurse appointment each time to give the injection. I would have thought people could learn to do the injections themselves - every diabetic learns, it's really easy. B12 itself is very cheap, that should never be a reason to stop injections.

  • Thanks nina365!

    I shall print it all out and show the doctor!

  • I talked my new GP surgery into teaching me how to do IM injections - my old surgery wouldn't show me, even though I was already self-injecting SC. Interestingly, once I did start self-injecting with B12 that I'd bought myself, no one batted an eyelid at any of my hospital appointments or when I had an operation and it was then easier to get more B12 and self-injecting lessons out of my GP.

    It's a bit like bees - once you get past the guards at the front of the hive, all the workers inside assume you are approved to be there :)

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