Caring doctor, just doesn't understand PA.

Just when I feel that my doctor has read up on pernicious anaemia, due to allowing me to have injections every 4 weeks, having gradually reduced the gap front 12 weeks, he surprised me with his lack of knowledge. He said to me during my appointment this week, that he is happy for me to have injections every 4 weeks from now on, but when everything has stabilised, he would like me to trial extending the period between injections. When I asked him why, he said that it was always important to minimise the amount of medication taken, (the implication being, that I am taking too much B12). I didn't contradict him directly, but explained that if all continues well and my health continues to improve, I am hoping to go back to work and I would hate for anything to interfere with the improvement. He still thought it would be better for me if I had less B12. He really is a very nice doctor, but I believe he knows very little about PA.

36 Replies

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  • Thinks its a case of see how you go. At least he is prepared to let you have it monthly, which makes you the envy of many people on here.

  • Yes I know, but it has been a long and slow, gradual process after having the usual 12 week interval, with re occurring symptoms, for about six months. Only when I produced a notebook with a record of symptoms, logged daily, on several visits, did he ask me how often would I like my injections. Given that previously he had quoted national guidelines etc., I was wary of asking for injections every 4 weeks to start with, so I suggested that the gap be reduced first to 9 weeks, then 6 weeks if necessary, and so on. so, now I'm waiting for the 2nd injection after a 4 week period and am so much better even though some symptoms are still occurring. I've recently bought Martin Hooper's book and am considering giving it to my doctor, if I can bear to part with it.

  • You do seem lucky... What is the title of the book please... Hoping if I get it it's simple to get to grips with and then I'll buy each doc in my practice one!! 😊

  • Hi, the book is: What you need to know about pernicious anaemia and B12 deficiency by Martyn Hooper, publisher:Hammersmith Books Ltd.

    I think it's shown on the front page of the website, and you can get it from Amazon.co.uk

  • Thanks 😊👍

  • Thanks I just bought it for my kindle!! X

  • True.

  • You can NOT have too much b12. What ever your body doesn't use you pee out. You can inject yourself daily for the rest of your life and be okay. I just got diagnosed but mine is from an antipariatel cell antibody not sure if you have it but injections are the only way I can get it and I am in the final stages of the deficiency unfortunately. But fortunately enough I found an angel of a naturopath dr and he knew exactly what to test for when I told him how awful I've felt for 10 years but this year getting much worse. I also have severe anemia from the lack of b12. I'm on high supplements of iron but I'm not sure yet if I can absorb those. I'm also supposed to start injections twice a week for life next week. I'm so nervous to do them myself :(

    He has only treated one other woman with this disease. I'm so thankful he knew what to do.

    You HAVE to get a new doctor, my dear. Preferably a naturopath. It took me about 30 doctors and 3 naturopaths in 10 years to find out what was wrong

  • Don't worry about SI - the thought of it is MUCH worse than doing it! Go for it and look forward to feeling better!

    Don't forget your cofactors - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium.

  • It's too late I'm already worried LOL people are telling me I could die if I just stab it and inject the serum. My dr and pharmacist told me I didn't have to pull back to check for blood just stick it. And now everyone has me worried I'll kill myself. I have taken a multi for years now just in case :)

    I might have panicked and spent 50 dollars on an auto injector. No one showed me how to do this. I'm thinking of asking the pharmacist if they can do it for me...

  • I think someone should should show you... I'd be just like you.. Get your answers and help with how... Your poor mind must be at rest before you can start healing.. X

  • Yeah idk what to do. Lol I bought an auto injector. I think it will help a lot

  • Several million people and animals are injected around the world every day for life saving and health promoting reasons.

    Jabs just aren't that bad or dangerous whereas B12d will definitely damage and eventually kill you.

    There is nothing in the B12 solution that would kill you even if you did stick it in a vein and just think of all the things that are injected iv which are quite toxic, including chemotherapy.

    Check out YouTube videos and ask someone to show you. Once you get the treatment you will be better able to cope with the idea of doing it and be more physically capable too.

  • See that's where I didn't really believe you need to check fr blood because there's b12 auto injectors where you domt have to check anything..

  • Is this person in the South East? I would love the opportunity to se one... If you can't name them here can you pm the name to me please? 😊

  • Have you been diagnosed before embarking on b12 injections as I'm so confused about having the test to see if I absorb stuff and if I actually have PA ... I'm supposed to start having injections Wed ... 1 every 2 weeks for 4 then spaced out to every 3 months... I concerned the tiny help I'm getting will help... That will leave me to more disappointment and possibly thinking injections wont help... (do they instantly make you feel better in short)... You seem much more educated than I can take in and seem to be getting more generous help... I'm in a state where I have to look at positives in any story.. My personal positive is finding here, having great US friends that know a bit about vits, and I maybe at square 1 but will move forward... It's going to be interesting following folk like you.. Thanks for sharing...

  • I just got diagnosed. After having it from what I'm guessing almost 10 years. I have so much damage from it especially nerves I'm wondering how I'm alive right now. I'm in constant head to toe pain especially nerve pain. I still think the fibromyalgia diagnosis might be real but it's hard to tell. Sometimes I forget how to count back money to customers and forget my sign in I.d at work even though I've been there 4 years. :( it's really bad idk if it's permanent. But I'm in so much pain I can't do anything I used to. Cant even carry my own purse.

    Im in seattle Washington I saw Marco vespignani. He tested the anti parietal cell thing the first appt and my iron which was way below anemic :( he told me he saw one other patient with the anti pariatel cell so he knew what to test wth me. He's really a god send but I should have been more clear on how scared I was to give myself shots. I see him the end of the month so maybe I'll just get help until then by my diabetic friend who does injections all the time then make him show me how bringing my needles he gave me

  • I guess there are two types of pa. One involving the autoimmune disease side and one simply lacking it you can help with supplements. You really need to find out which one because the autoimmune is life threatening. If you've had it over 6 months a lot of things might be permanent side effect wise :(

  • Not quite.

    There are many causes of B12 deficiency. One of them is the autoimmune disease Pernicious Anaemia, which requires injections for life. As does B12d caused by surgery to the GI tract.

    Veganism can also cause B12d and can be handled with oral supplements.

    B12d caused by drugs (PPIs, nitrous oxide, metformin etc.) requires short-term supplementation and, preferably, removal of the guilty drug.

  • It's very ironic and I hate it but I'm vegan and have made sure to get enough b12 through food and supplements and all of that was wasted because I can't absorb it even if I were to eat steak every day :(

  • My neuro was going to do weekly for 6 weeks then monthly for 3 months then completely cut me off. So now i do home injection as much as needed and tell my gp that neuro does them until i have enough courage to tell him everything he's learning about PA is from me not what i say my neuro says. But as long as my gp will do blood test i ask for im okay with this.

  • This may sound a really stupid question... What does a neuro do in cases of thyroid or PA?.. Are they the person who looks at blood for example who could push for more b12 injections for example? I would of maybe been better off asking for a referral to one of them than the Gastro guy re pushing for more b12 ...

  • Your gastro' should do an endoscopy to check the condition of your stomach (ileum) because PA is an autoimmune disease which can destroy your intestine if left untreated. This is only day surgery and in Australia, my GP referred to it as the Gold Standard medical care to confirm diagnosis.

    Hopefully, you have had blood tests for H.Pylori bacteria, antibody tests for Intrinsic Factor and Gastric Parietal cell.....

    You will probably need to be your own advocate. This site will help you whenever you have any questions.

    Good luck.

  • The IF test I havent had and was considering having done privately, but I jstart injections on Wednesday with b12 and so would I get a proper reading if I was having b12 jabs? I dont want to skew any results and give anyone the chance NOT rto treat me on false blood testing or poor blood testing in the NHS.. I dont think unless I had gone to the Endo the GP would have ever given me t3 etc so your chances are limited and so I dont want to hamper diagnosis by starting the b 12 jabs and not getting help..Thanks for response... Jo

  • The IF test is worth having. However, even in people with PA it only gives a positive result 50% of the time. Having injections shouldn't change that, so there's no need to stop.

    You really should insist that your GP should give you an anti-IF test. I would also ask for a test for anti-Gastric Parietal Cell antibodies. If the anti-GPC test is positive then that's a fair indicator of PA, just in case the anti-IF is negative.

  • Your gastro' should do an endoscopy to check the condition of your stomach (ileum) because PA is an autoimmune disease which can destroy your intestine if left untreated.

    Can I just correct a couple of slight misunderstandings here?

    Yes, an endoscopy would be a good idea to check the stomach. They might also check the first part of the small intestine, the duodenum, but they won't go all the way down to the ileum because that's at the end of the small intestine, after about 2.5m of jejunum (that would be a very long tube).

    Although B12 is absorbed in the ileum (which is about 3m long) PA doesn't affect the ileum itself.

    PA is caused by Autoimmune Metaplastic Gastric Atrophy (AMGA) which is where the body's immune system attacks some of the stomach cells. One job of these cells is to produce a substance called Intrinsic Factor (IF). Most nutrients can easily cross the wall of the small intestine, but B12 is too large and needs to be 'escorted' across by IF. The B12 is bound to the IF in the stomach and is transported across the wall of the ileum into the blood.

    AMGA stops production of IF, so very little B12 can be absorbed.

    Left untreated, PA will not destroy the intestine. Nor would AMGA. Treatment of PA by B12 supplementation doesn't do anything for the underlying AMGA.

    A gastroscopy can confirm gastric atrophy and a positive test for antibodies to IF and/or Gastric Parietal Cells (GPCs) can tell if it's autoimmune. Just for interest, the 'metaplastic' bit means that the GPCs are replaced by other, non-secretory cells. Biopsies taken during the gastroscopy will show this under a microscope.

  • I have copied that for notes... Thanks :)

  • Hi fbirder, just copied this post as very relevant for me.

    Do you know what ( if any ) long term result of being positive for IFA and Parietal Cell antibodies are in relation to damage to stomach ?

    My Father and Grandfather both died as a result of stomach/bowel issues, so obviously of concern to me.

    Waiting for an appointment to come to see an Endo, but G.P not giving me appropriate alternate day jabs to treat PA with Neuro symp, so seeing different GP next week

    ATB

  • Thanks for the info.. and good luck to you..

  • My gp said he couldnt do an IF test so I'll be seeing if gastrointestinal will. Which he should have already done since i have low b12 and gastritis

  • If a neuro sees a thyroid issue you should be sent to endocrine. For PA he should start you on injections. Since mine was an a** to me I'm doing it myself. And your gastro did he find anything on an endoscopy? I have gastritis which could explain my b12 but i think i had low b12 way before my gastritis. And all the meds they put me on prilosec/zantac and senna just screwed me worse ugh.

  • I had an appointment a few months ago with not my usual doctor but one i see fairly regularly. The appointment was for anxiety, she suggested I revisit in a month to discuss progress. I said I would see her sooner as I wanted to make an appointment to discuss more frequent injections (12 wks at moment) Her response was - no need, you only need every 12 weeks (as I was walking out the door). I've since had an injection with the nurse. On my notes it says I asked and no need. Nurse explained as extra is just urinated out. Which I know. Point is how do they know if it's needed or not and is it fair to not even allow a discussion! Have started trying to log since last injection and will make appt in 12 weeks with another doctor.

  • I would not wait for the full 12 weeks - respond to your symptoms. Good luck.

  • I would agree.

  • I suggest you keep him on side as much as possible and say that you would also welcome this in time as no-one likes injections or medication more than necessary, but in the meantime you feel it is essential for the improvement of your symptoms.

    Keep going with your notes - they are critical for him to justify treating you "off label", ie not strictly adhering to the NICE guidelines. It may also be worth showing him that even very high levels of hydroxocobalamin are non toxic - this is also in the guidelines on hydroxocobalamin - just to reassure him that what he is doing is ethical.

    For more information see replies by Gambit, Sleepybunny, Polaris, Marz, fbirder and lots of other super people on here.

    Don't forget all the cofactors you may need to metabolise the B12 - a broad spectrum multivitamin and mineral supplement plus possibly extra folate, potassium and magnesium.

    Good luck!

  • Members of the PAS (it only costs £20 to join for life) can go to the Library section of the website and print a copy of "Diagnosing and Treating Pernicious Anaemia an Update for Primary Healthcare Professionals" which quotes from the 2014 British Committee for Standards in Haematology guidelines. and goes on in two pages giving hints and advice to G.Ps.

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