In sympathy

In sympathy

In reply to Volley, I was told more than 12 months ago that regular 3 monthly injections would stop and that I could not have a B12 test for two years. In the meantime I knew that symptoms of deficiency were returning so, having managed to get an appointment at last, a nurse practitioner prescribed B12 tablets on a three monthly basis. Still feeling dreadful on occasions I am sitting it out until the 2 years are up. I was told it was new standard practice after a review. I am very dissatisfied with the whole system, especially since it took some years for the regular injections to have any marked effect. I am rapidly declining to what I fear is pre-square 1. Requesting appointments, consultations and medical advice would appear to be a waste of my time and requires a level of energy and patience which I do not have (symptomatic?)

8 Replies

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  • Join the PAS and give them a ring. They are used to this idiotic behaviour and can guide you on how to get the treatment you need.

    martynhooper.com/2016/09/23...

  • i am so sorry to hear that this has also happened to you.

    Please don't sit out two years and get help from PAS as suggested.

    You should definitely get a B12 test done asap to see if you are absorbing the B12 tablets. i just found that an intrinsic factor test will tell if you can absorb tablets so ask for this.

    My mum has just been told this but if I don't get anywhere with doctors then will contact PAS. I guess doctors are trying to cut costs but shouldn't play with peoples health.

    All the best to you and everyone on these boards

  • I would ask to see the directive that is imposing this ! It's so hard to believe . And as to money saving , an injection( I self - inject) costs no more than £1 , including syringe and needle . I do buy in bulk But think how much more cheaply the NHS can buy. Then there is the nurse's time to add . How long would that be ? 10 minutes ? What is the reasoning behind this ? If you have absorption problems tablets will be useless , but they will send up your B12 blood serum reading, without you feeling any benefit .

  • Hi Rosebudsmith. This is just utter nonsense. And you should not have to sit around for two years waiting for your blood levels to drop low enough for them to start treating you again. I just don't have enough words to tell you how stupid that is.

    I agree with fbirder...you should definately give Martyn a call. He will be able to give you lots of good advice but can only intervene on your behalf, if you belong to the Pernicious Anaemia Society.

    If Martyn is not able to intervene, here are some things you can try:

    Please note: if it was the GP that stopped your B12 treatment rather than the nurse practitioner, you will have to see the GP to get the treatment recommenced.

    I would go back to the GP or nurse practitioner and ask her / him to show you evidence of the review process and the new standard practice - this should be medical evidence, supported by clinical research (they should be able to do this since they are supposed to engage in evidence based practise). I very much doubt they will be able to do so!

    If there has been a 'review' it is most likely that this will be a practice or local authority directive, based on nothing at all but cost saving.

    Next, if you print out the 'serious caution note about using B12 sublingual tablets, sprays and patches' in the third PAS pinned post you can produce your own evidence as to why your B12 injections should continue.

    But you should not have to do this. You most likely have an absorption problem (the most common cause of B12 deficiency) so tablets will do no good since you will not be able to absorb them. Ask your GP or nurse practitioner (whichever you are seeing) for evidence that you do not have an absorption problem. Again, it's unlikely that they will be able to,provide this.

    Also - if you have neurological symptoms, the treatment is B12 injections, as per all guidelines. Not tablets. (As per the PAS pinned posts, as discussed below.)

    Have you read through the PAS pinned posts on the page when you first log on? If you read through them, it will become clear to you that you are not receiving the proper treatment for B12 deficiency. Highlight anything that is relevant to your case and take this along to Your appointment and insist that The GP / nurse reads it while you are there.

    You could also print the symptom checklist, highlight any symptoms relevant to you, and take this along to present to them. Again, if you have neurological symptoms it is imperative that you are treated immediately with B12 injections to prevent potentially irreversible neurological damage. Your GP may not know this. Also note that if this is the case, you should be having injections more frequently than every three months (information in the pinned posts but please ask if you need help).

    Your GP and/or nurse is effectively withholding the correct treatment and as such, they are being negligent (irrespective of any local review process, which is certainly not in line with any of the current guidelines).

    It would also be a good idea if you could take someone along with you since GP's / nurses tend to be less hostile if there is a witness in the room. And I'm acutely aware that this is a dreadful thing to have to say, so sorry for that.

    If Martyn is unable to intervene, I really hope that you can pluck up the courage and the energy to go back to your surgery and challenge them over this.

    Please do let us know how you get on and post again if you would like any more help or advice.

    Take care x

  • Hi Foggyme

    Thanks again for all the advice. I saw a nurse practitioner yesterday and mentioned the PA society. A full blood test and IF test will be done next week as well as TF test which isn't due until next year. I understand that B12 deficiency and thyroid deficiency can cause similar symptoms. I'm currently taking 125 micrograms of levothyroxine daily. Any help about managing these two conditions in tandem would be appreciated.

    Best wishes x

  • Hi Rosebudsmith. Really pleased that the test are being done for you and we'll done for going back.

    The anti-IF antibodies test is only 50% accurate so you can still have PA if you test negative. If this happens you are said to have antibody negative PA, and shield be diagnosed as such if nomother cause can be found for your B12 deficiency. Your Nurse may not know this (I'll be. Dry surprised if she does). The information about is is on the diagnostic flowchart in the PAS pinned posts if you need it to show her.

    The most important thing is that they re-start you on your B12 injections, so be brave and keep pressing for that to happen. A thought - have your nurse already agreed to that - she should have!

    You're right about the similarity of symptoms between B12 deficiency and thyroid conditions - the cross-over of symptoms is quite marked and it's sometimes difficult to sort out what's what 😖.

    The only way to know which is which is by getting the proper treatment for both conditions. I understand that people who have both learn to recognises which symptoms are due to which condition over time as they become more expert at managing their own conditions (usually under their own stream, rather than by dint of GP assistance. Sad, but true).

    My understanding is that GP's and nurses are as bad a treating thyroid conditions as they are at treating B12 deficiency. (Incidentally, hope they're doing a full screen - TSH, FT3, FT4, anti-TPO and anti Tg - since TSH alone does not give a true picture of thyroid status)

    It would be a good idea to get a copy of your blood results (this is your right): post the B12 / PA ones here and post the thyroid ones on the Health Unlocked Thyroid Forum. The thyroid forum is a very good place to get help with thyroid issues and the folks there are much more knowledgable about thyroid issues that we are here (though thyroid folks do pop in sometimes since quite a few of them also have b12 deficiency 😀.

    Good luck with the blood tests and let us know if you need more help getting your B12 injections reinstated (focus on the issue of absorption, as above).

    Take care x

  • Thanks to you all for the replies and the advice. It's so easy to accept passively what one is told, especially when the battle to even get an appointment is hard fought and when, to all outward appearances, I am a fit, active and not over-weight 72 year-old female.

  • I found the summary fbirder compiled useful when dealing with doctors who lack understanding of b12 deficiency. There's a link to his summary in third pinned post and a link on his profile page. Lots of useful quotes from mainly UK B12 documents.

    I gave my GPs a copy of the "BCSH Cobalamin and Folate Guidelines" and a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

    UK b12 websites

    pernicious-anaemia-society....

    b12deficiency.info/