Thank you Health Unlocked & Pernicious Anaemia Society & B12 Deficiency Support group

I had an appointment with my GP today to discuss continuation of the B12 injections as per the guidelines for B12 deficiency with neurological symptoms. He has now prescribed 3 injections weekly till symptoms stop improving.

I can't thank enough the Pernicious Anaemia society and the B12 deficiency support group, as well as this forum for your help and support. I am sure the informative leaflets and the guidance on how to write the letter have made all the difference. I would not have made it without you.

I have not had an official diagnosis but for now I don't mind. I am thrilled to be able to have the treatment.

14 Replies

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  • Just pleased to have been able to point you in the right direction VickyB12 .

    I'm not a medically qualified person but I understand that it is important to have a healthy Folate level when you start having the injections as this is essential to process the B12.

    I wish you well for the future

  • Hi Clive

    Can you let me know what supplements I should take when SI ?

    Thanks so much

    ⚽️

  • Hi Footygirl

    The only (unqualified) advice I can proffer is to ensure that your Folate level is healthy whilst you are injecting B12.

    Personally I take 1 – Folic Acid 400μg tablet every day as I have B12 injections every three weeks.

    Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, lima beans, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, lima beans, salmon, orange juice, avocado, and milk. In addition, some cereal products are fortified with folic acid.

    Take care now.

  • Hi VickyB12. This is fantastic news and it's so good to hear of a GP who finally listens. So well done for persevering 😀.

    Just make sure that until no further improvement means until you think there's no further improvement. Then B12 every eight weeks (for some, that's not enough - but that's another story).

    And your GP should not stop your B12 if he thinks your levels are too high - this would be a nonsense so pop back for more advice if that happens - but hopefully, it won't 😀.

    It's worth mentioning that if your neurological symptoms fail to improve, then your GP should refer you to a neurologist just to rule out any other potential causes - but again, hopefully that won't be necessary (but forewarned is forearmed).

    Again, really delighted for you and hope you'll see real health benefits very soon.

    Pop back and let us know how it goes and further support and help here if needed.

    Take care 👍

  • Thank you Foggyme...yes, he did say that if the neurological symptoms persist, he will refer me to a neurologist. As you say hopefully it won't be necessary. Keeping my fingers crossed that this problem will be solved soon. the neurological symptoms started last January and it is now November! I will keep in touch and I will try to help others if I can... x

  • Thanks VickyB12... that would be great 👍👍

  • Hi VickyB12

    Hope you don't mind me asking, what neurological symptoms was you suffering from ? I have B12 def and been told will have to have injections every 3 months, this has been something I've been suffering for over 15yrs. Being told this at 16 I wasn't really aware of how it can affect you, now 34 I'm fully aware and trying to get this all sorted. Thank you x

  • Good morning Jaylou8, of course I don't mind you asking.. I am afraid I still have neurological symptoms but after the injections I feel a bit better.. there is a slight improvement every time I have one injection. It's like a miracle. What drove me to the gp last January was pins and needles in my left arm, numbness and terrible pain. I thought I had probably pulled a muscle! It became worse in the next months because the GP dismissed my B12 deficiency and advised me to have food rich in B12... according to her, it would solve the problem.... which of course it didn't. Unfortunately my neurological symptoms were not linked to B12 deficiency. Also, before the diagnosis I had migrainous headaches very often...almost every week! I am off to work now but I will post later some links about neurological symptoms and I hope this will help you. x

  • I would just add to these excellent remarks that keeping a log might help - not all doctors are receptive to this, but it can still be helpful to show some "evidence". I've noticed with myself that some symptoms seem to go up and down, and with a foggy brain, having a written account is certainly helpful. I've made an excel sheet of my main issues and score them daily on a scale of 1-10. I also left some space for some comments (e.g. left hand numbness same, but right hand better, etc).

    Edit: Also, very pleased to hear you stuck up for yourself and will get the correct treatment! :)

  • Wow...fantastic news and hopefully that means other B12 deficiency patients at the surgery will benefit from the info you passed on too.

  • That is fantastic news, well done vickyb12

    It is utterly amazing as to the different levels of care and treatment across the uk, I did exactly the same as you have done, I know that my letter was a good one, it took me 2 days to prepare it, it was proof read by Tracey Witty at b12def, inside the hard copy was all the relevant documents, I also emailed this with all the relevant live links to make it easy for reference.......what happened, he has declined any further injections based upon high serum b12 levels.....not just once...twice.

    I have referred myself to a Neurologist who has said that he will do whatever tests that I want to have done, significantly he commented that no one should be practicing outside the NICE guidelines.....well my gp thinks it is ok to do this.

    Good luck with your treatment Vicky and I wish you a speedy recovery, you are one of the lucky few to have an understanding gp who cares about your health and is not governed purely by blood results.....maybe I should move into your area lol.

  • Thank you KenBowns... to be honest, I couldn't believe my ears when he said that it would be OK to have the injections after testing my neurological symptoms. I am so much aware of the problems people face and it took me almost a year to sort this out...in fact, I need to be saying 4 years because in 2012 my B12 was 190 and no treatment was given because there were no haematological changes and no investigation was done to find why my B12 was low. The only thing they said it is that as I am a Hashimoto patient, I can have my B12 tested every 2 years. I had and they always said it was Normal. Little did I know then and I never asked the surgery to give me printed results. The next thing I know is that last January my B12 was 160 and I had neurological symptoms.

    You say your B12 is high? perhaps it would be worth having the Active B12 test at guysandstthomas.nhs.uk/Home... If you don't live in London, I think they offer this test as a home kit. I have read about this test in this forum and it was the next thing to do if my appointment with my GP was not successful. I am sure one of the members said that he managed to have more injections based on the result of this test. (sorry I can't remember his name)

    My heart is with you because I know how you must be feeling right now.

    Vickyx

  • Thank you Vicky

    My b12 is still high due to loading doses in September and sublinguals afterwards, I have seen some improvement in my symptoms and feel a little better in myself but I am expecting some regression as my last jab was September 23rd and I didn't tolerate the high strength sublinguals too well.

    The Neurologist is going to run a series of tests in the next couple of weeks so fingers crossed that he understands b12 deficiency enough to direct my head in the sands gp.

  • All my best wishes x

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