GP trip/Will I ever improve

Hi all

So had a trip to the GP who was reluctant to discuss extra loading doses as I have neurological symptoms and pointed out the nice guidelines and BNF ... He stated but you have already had 18. Felt like I had to beg to get the right treatment. Due to his attitude I decided to challenge him about my previous blood results. In November 2012 I was 125 b12 (I did not know this until July 2016) and having neurological symptoms and have done since. The GP kept saying I had fibromyalgia over the last few years. Bloods were done again in July 2015 and b12 was 212. When challenged today he said I did not need to be treated as I was not aenemic at the time and my haemoglobin was ok. I pointed out that my haemoglobin and ferritin is also ok now .... But I'm being treated for PA so what has changed. So in my view it is clear that he has neglected his duty of care since 2012 ... He then gave in and gave me a month of injections. My question is does other markers have to show in blood work for a PA diagnosis? Also another side issue ... I've been self objecting for 36 days now .. Every other day. I tried to extend the days in between this week and my symptoms came back more acute. Has anyone else experienced this ?? Im fearing that I will never recover ... Thanks in advance for any response.

10 Replies

  • Oh my folate and ferritin are at a good level 😀

  • Hi Abijah it sounds like your doctor needs to go back to school confusing anaemia with Pernicious anaemia.

    I'm sorry you are not seeing signs of improvement yet but hope they will come soon.

  • PA isn't a blood disorder - it causes a vitamin deficiency - B12 deficiency - one of the symptoms of which is macrocytic anaemia - and potentially other anaemias.

    B12 is used by a number of systems in the body - which cover - production of healthy blood cells, maintaining the lining around nerve cells, maintaining proper workings of the brain, and releasing energy in cells amongst other things.

    Its pot luck as to which systems are affected first and most by lack of B12 so it is quite possible to be B12 deficient without any sign of anaemia.

    There are a couple of waste products of process involving B12 which the body can't reprocess into useful building blocks that can be used as secondary markers of B12 not being available at the cell level - these are homocysteine and MMA - but as you have had injections test results aren't going to be useful. They can also be high because of other parts of processes going wrong which is why they aren't primary indicators.

  • Thank you clivealive and Gambit62 ..... The GP's lack of knowledge makes you second guess your own. Thank God for PA Society 😀

  • After 20+ years of symptoms I finally got a diagnosis of B12d, without anaemia. By this time I was very ill and the delay in treatment caused a lot of permanent damage. After the loading doses were stopped my symptoms returned. I managed to get my GP to repeat the loading doses and I improved but I "crashed" again as soon as they were stopped. I have now been SI daily for over a year and found that many others need to also. I am gradually getting better - many of my symptoms are less - but I know that this is now for life and the best I can do is adjust my expectations and manage what I can do. At least now I do have a future and do get good days.

    Like yours, my blood folate and ferritin also looked good, as did potassium and magnesium but I found I have to supplement these and other vitamins and minerals anyway to keep the B12d symptoms at bay.

    For me (and a number of others) it is as if the cells of my body only absorb a % of what is available to them and so the levels I need to take need to be much higher than guidelines suggest, to allow for this.

    For more information you could look up my profile by double clicking on my name and see my post "My Experiences".

    Best wishes with finding a level of supplementation which gives you a good quality of life. Things will be different for you but should be better from now on.

  • Thank you Deniseinmilden ... Very helpful post ... And I will look at your blog. I guess it's all trial and error at this stage but presently can't go 48 hours after SI before symptoms return but I'm hopeful. I started taking vit b compound as well but was thinking magnesium as well. I wish you well and thanks again for a shared experience 😀

  • If I don't keep my "cofactor" levels up I crash within a few hours but even like that, with determination and careful management, I can live a reasonable life - partly coz I have to because I'm self-employed and live on my own. Good luck!

  • "When challenged today he said I did not need to be treated as I was not aenemic "

    The BCSH Cobalamin and Folate Guidelines I think mentions that not all B12 deficient people have anaemia.

    Page 29 of the BCSH Cobalamin Guidelines is a diagnosis flowchart that shows the recommended process a GP should follow with someone they suspect may have b12 deficiency.

    fbirder has compiled a summary of useful quotes from mainly UK B12 documents. I have found his summary useful when faced with medics who do not have a full understanding of B12 deficiency. Click on link in above sentence to fbirder's profile page or look in pinned posts on forum for a link to summary.

    Its possible that in 2012, the GP was following local NHS Guidelines for B12 deficiency. These local guidelines can sometimes differ from national guidelines. The BCSH Cobalamin and Folate Guidelines came out in 2014.

    Local NHS B12 guidelines for your area can probably be found by an internet serach, a search on local NHS website or perhaps a Freedom of Information(FOI) request to local NHS website. MPs may also be able to help.

    Uk b12 websites


    B12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

    I am not a medic jsut a person who has struggled to geta diagnosis.

  • Hi Sleepybunny thank you for taking to time to direct me to fbirder's summary. This will come in useful when I see my GP again. I will also look at my local NHS guidelines. Thanks again

  • Have you read the BCSH Cobalamin and Folate Guidelines? I gave a copy of this document and a copy of Martyn hooper's book to my GPs.

    Are you a member of the PAS (Pernicious Anaemia Society? They can be a great source of useful info and can sometimes intervene on behalf of members.


    PAS tel no 01656 769 717

    Good luck with getting the treatment you need.

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