Interesting development... RE: B12 injections

Hi everybody.

Had to go to surgery this morning to drop a letter from my ophthalmologist. While there a nurse saw me (she had tried to phone me but did not get an answer neither did she leave a message), asking me to go and see her.

A couple of week ago when I saw my GP I said i'd like to be given the chance to have B12 injection and see if it would helped my symptoms (had been asking for a while, see previous posts please). After much dithering she said would consider it for 3 months bur needed to ask her colleagues' opinion!!! and would let me know. Following day I collected a letter from surgery in which she said the consensus was: ONE injection then retesting 2 weeks later. I ignored that letter, yet I am not in the habit of being discourteous by not replying to letters...

A week ago a nurse phoned me to make an appointment for THE injection. Told her to tell GP this would be a pointless experiment since it would set me up to fail... "See we've tried B12 and it made no difference" sort of scenario... also a waste of nurse's time. Told nurse I was due to see GP again on 2 February. The nurse I saw this morning was keen for me to make an appointment for "the 5 injections regime".... ??? what's that? Told her I did not want that and would be writing to GP prior to my seeing her on Thursday.

So I would be interested to hear what you think of this rather odd situation. When I saw GP last month I showed her guidelines for B12, having highlighted certain things relating to my symptoms. So what made her change her mind from ONE to FIVE and keen to get on with it??? Perhaps she wants to get rid of me....?

Also, is it really worth it doing 5 injections and then nothing??? I've read so many times this is pointless.... So, once more : HELP and guidance before I see GP on Thursday.

With my thanks in anticipation of your useful ideas and great support.

13 Replies

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  • "nurse I saw this morning was keen for me to make an appointment for "the 5 injections regime".... ??? what's that?"

    I think it's likely that GP has looked at local NHS B12 guidelines which suggest 5 loading doses over 2 weeks. I believe Gloucestershire has a regime like this. Might be helpful for you to find out what the local NHS B12 guidelines are in your area. They can probably be found by

    a) an internet search

    b) search on local NHS website

    c) FOI (freedom of Information) request to local NHS website

    d) MP might be able to help you find out

    Strange because the BNF (british national formulary) suggests 6 loading doses over 2 weeks then injections every 3 months for b12 deficiency without neuro symptoms.

    People with b12 deficiency with neuro symptoms are supposed to get an injection every other day for as long as symptoms get better then injections every 2 months.

    You mentioned in a previous thread......

    "I have been thinking of writing a summary and give it to her at my next appointment, asking her to include it in my medical records."

    I have written summaries before in letter form because my understanding is that letters to GP have to be filed with medical notes. I have put in blood test results, symptoms, quotes from UK b12 documents that support my case. Personally think it's best to make it as brief as possible.

    I make sure I mention the BSH Cobalamin and Folate guidelines.

    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

    Flowchart in BSH Cobalamin guidelines below.

    stichtingb12tekort.nl/weten...

    I'd suggest reading fbirder 's summary of b12 documents before your appt. It's in third pinned post(last link in list).

    The PAS website has info for medical professionals that your GP may find useful.

    pernicious-anaemia-society....

    pernicious-anaemia-society....

    I gave my GPs a copy of Martyn hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

  • Hello Sleepybunny,

    Great reply... thank you so much, most helpful indeed and I did get great tips and guidance from Foggyme and a number of members of PA Forum. Most grateful for such kindness, support and guidance to all of you.

    It is odd that I should be offered 5 injections.... when the BNF recommends 6 loading injections over two weeks.... etc.... and since I have neurological symptoms GP should respect BNF guidelines.... so she's still doing her very best to prevent me from getting the correct treatment... WHY? Is it money or sheer arrogance and ignorance?

    Since I have refused the 5 injections, saying to nurse I would be writing to GP before my visit on 2 February... I only hope GP will not say that I am refusing treatment therefore that's the end of it... Surely, GP is not following BNF guidelines... so am hoping this will be my saving grace... What do you think, anyone?

    Am busy organising my letter and photocopies of guidelines, etc. highlighting what is relevant to my symptoms, etc.

    A BIG thank you to you and all members who have been extremely helpful and supportive all along.

    x

  • HI JGBH. Hmmm...your doctor previously wanted to give you one injection only (which you refused) and the nurse now wants to give you five more?

    So... First, it sounds to me like the nurse may think you've already had the first loading dose (thought you haven't)...and now she wants to give you the other five that go with it. (The loading doses are the first six injections given on alternate days that start the course of treatment for B12 deficiency - designed to get your B12 levels up quickly).

    So, perhaps there are three possibilities:

    1) your GP's have realised their 'mistake' and have asked the nurse to give you the correct treatment - but communicated this to you very badly - i.e. not at all (we can only hope, 'cause this is the best possible scenario) or

    2) The nurse has not been asked to do this but...knows the correct treatment for B12 deficency and is inviting you back assuming you have been prescribed the correct treatment or (and if she realises that you haven't had the first dose, she'll likely include this also). If not, just play 'daft' and ask if you should have the six 'like it says in the BNF'. She'll have a copy of the BNF on her desk and can look it up. If not, ask her to.... Or

    3) None of the first two because your GP's have no idea what they're doing and who knows what's going on 😖

    So first...I think you should make the appointment and go for those loading doses...it's the only way to find out what's going on. You'll be able to discuss this with the nurse. If she understands B12 deficiency and its treatment, she will be able to intercede with your GP on your behalf if no further injections are planned. If she doesn't, well you're a bit further on (since treatment has been started)...you can then change the nature of the letter you write to your GP and focus on getting the B12 treatment continued (rather than started).

    Must say, when my GP stopped my treatment it took many meetings (and lots of evidence) with both the nurse and the doctor to get it re-started...and it was only when the penny dropped with the nurse (eureka, she read the evidence, and got it) that I eventually got the treatment re-started. Yes...she had a very large whisper into the GP's ear 😄.

    Second...I understand that you're writing to your GP to make an appeal for treatment. You'll find it very difficult to make this appeal if you've already turned down what is, in fact (or could be) the start of a correct treatment regime.

    So...go along and discuss this with the nurse. The best outcome is that you have the loading doses and are then put on the correct regime for regular B12 injections (after the loading doses, every other day until no further improvement, then every eight weeks - if you have neurological symtpoms: after the loading doses once every three months if you don't).

    If this doesn't happen (i.e. your GP hasn't prescribed a continued course of treatment - as they should))...if your nurse actually understands what the treatment for B12 deficiency is, she can intercede with your GP on your behalf...and she may be able to persuade them to continue with the B12 treatment - as they should.

    Or...the nurse knows little about B12 deficency but has assumed you've been prescribed 'what people usually have'...and then decides she can't give you the injections because they haven't been prescribed.

    In which case you've lost nothing and you can carry on with your original plan to write your 'treatment appeal'.

    But..the only way to find out is to book in for those injections and go along and discuss it with the nurse 😄.

    And even if she can only give you the loading doses (because it's all that's been prescribed) its worth having them. It's perhaps easier to argue for treatment to be continued (though still not easy) because then you will have more 'evidence' to present (having the loading doses is likely to improve your symptoms and you can use this as evidence for continued treatment).

    But note: symptoms resolve at a different rate for different people so you will have to keep a note (a symptom log) to demonstrate any improvement to your doctor - and be aware, not all symptoms go immediately for everybody - so improvement - no matter how small - is what you'd be looking for in terms of 'evidence'.

    So...I'd suggest that you get booking.....

    But of course, I may have this all wrong...any more ideas...anybody? 😄

    👍

  • Any chance you are from Gloucestershire - the favoured treatment (Glos. guidelines updated 2005) here is 5 loading then retest either in 3 or 6 months.

  • Hi beginner1,

    No, not from Gloucestershire but from North West Leicestershire. A rather awkward position between Derby, Leicester and Nottingham, the closest city being Derby.Will check what the Derby or Leicester guidelines say regarding B12 treatment. Also my postal code is a Derby one my surgery depends on Leicester although they mostly use the Derby Royal Hospital.... yes complicated and odd but there you are.

  • Hi JGBH

    I hope you get the treatment you need. I'm glad, for your sake, you don't live in Glos. Hopefully your county is better.

  • Hi Foggyme,

    Thank you for another useful reply.

    Am afraid this nurse was aware I had refused the ONE injection offered previously, so this is the reason for which i refuse 5 injections. Was somewhat aware 5 injections will not help me long term.... She did not even say they were loading doses and no indication the treatment would be carried on later on. To be honest I was so shocked I did not ask her about this. Also I was rather upset and am afraid did cry because I feel so ill and told nurse how ill I have been feeling for too long now...

    I sense strongly the nurses "look up" to the GPs for directions... can't imagine any of them "challenging" the GP's decision.... Indeed the first nurse who phoned me last week told me "she was not a doctor" when I asked her if she could have a word with GP about the importance of my having B12 injection treatment as I have been feeling so ill and getting worse and felt I could not carry on like this much longer... So you see... so much for relying on a strong nurse who will face up to GP's lack of action and care for a patient. It also looks like the 2 nurses I have spoken with don't have much knowledge about B12 deficiency.... One of these nurses gives me injections for osteoporosis every six months... but she knows little about osteoporosis... asked me who prescribed it in the first place, when, etc. No it was not the GP who prescribed Denosumab.... just in case you were wondering.

    So I think I will have to explain in my letter to GP why I refused both ONE then FIVE injections... because it is not what BNF guidelines recommends for correct treatment of B12 deficiency and state that communication was unclear as how long the treatment would be but that I would welcome the treatment according to BNF guidelines and as long as my on-going neuropathy symptoms are taken into account.

    Does that sound logical and to the point? Then hopefully I could discuss this with GP on Thursday (by which time she would have read my letter making in clear of my reasons for rejecting one and 5 injections as I found this communication rather confusing).

    Thanks again.

  • Oh dear...they sound like a right shower...hopefully you'll be able to sort it out with the GP once they have seen your letter.

    Good luck 👍

  • posts crossed :)

  • not sure if Foggyme will have seen reply

    Personally I'd suggest that you start by saying what happened and that you are finding the communications confusing, Ask for clarification eg on the 5 loading shots over 2 weeks, quote the BCSH guidelines, quote them exactly, state the symptoms you have which are neurological.

    In relation to the nurses - to some extent their hands are tied as they are unable to dispense B12 without a prescription which means they couldn't do anything without the agreement of GP even if they wanted to.

  • Yes, the hopeless club! If I did not live alone and did not feel so ill often I would have left that dreadful surgery.... but needs must and all that.

    A friend who came to the surgery with me in the Summer (stayed in waiting room so could observe) commented on leaving that she was very shocked by the large number of patients but more so to the fact they looked really really ill!

    That explains what a waste of money to the NHS this surgery and its practitioners are! Unfortunately the doctor who was at the head of the practice retired 2 years ago and when I asked who would replace him as head of practice was told no one that the doctors would share the role (and no doubt the extra pay a head would get!)... hence CHAOS and lack of care and the patients are paying the price...

    I wonder, is there an institution (such as Ofsted for schools) who could come and investigate the practice? I somehow fear not, so the doctors are quite safe... Any idea about that?It's a disgrace!

  • Ask to have your Folate level tested JGBH as this is essential process any B12 you are having injected.

  • Hi Clive, folate was tested at same time as B12 on 16 December 2016 and both were within range... but we know what that mean! folate was 7.5 ug/L (3.89 - 26.8) so on low side of normal, and B12 was 434 ng/L (197 - 771) so middle of range but we know that means nothing really. Also ferritin was 43 ug/L (30 - 400).... so quite low . My RBCs over production yet low haemoglobin uptake...

    Thanks for advice and will asked about folate but I think I read somewhere that if you're anaemic then folate may not be recommended... Please clarify this someone if you can.

    Thank you.

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