oral tablets B12 for pernicious anaemia

Oral tablets to treat Pernicious Anaemia

7 Aug, 2020

We have been made aware that a pharmaceutical company based in Northumberland is about to be granted a licence to produce 1mg tablets of Cyanocobalamin. One of our Pharmacist members immediately contacted the company, which is owned and operated by a GP and was reassured to find out that not only is the medication not going to be used to treat Pernicious Anaemia or other non-dietary causes of B12 Deficiency but that the company wants to work with this society to investigate whether it could be used to treat PA.

Issues around oral tablets

Firstly, there’s the current practice by some GPs of prescribing 50mcg tablets of B12 to treat Pernicious Anaemia instead of injections. The flawed studies that have been carried out in the past (they would never pass strict quality controls for publication today) have found that some patients when given 1,000mcg tablets (1mg) absorbed around 1% of the tablet ‘passively’. Prescribing three 50mcg tablets as treatment is useless – the tablets in the flawed studies in the past used 1,000mcg – three 50mcg tablets is just 150mcg.

Secondly, the practice of some GPs telling patients to visit a Health-food store or internet store to purchase 1mg tablets to treat their Pernicious Anaemia is not only based on the same flawed, small research projects conducted many decades ago, but also the tablets will not be of Pharmaceutical Standard therefore not subject to any stringent quality controls.
When this new 1mg tablet is licenced, it will be of high pharmaceutical quality and therefore address one problem associated with oral supplementation. And it will do more than this – it will offer the opportunity for a robust research project to take place to assess the suitability of oral tablets as a treatment for Pernicious Anaemia.
We know that some of our members already use 1mg tablets daily to treat their Pernicious Anaemia; but we are also aware that other members of this society see their symptoms return and deteriorate when they have tried oral tablets.

Research team to investigate

With this in mind this society is forming a Research Team that will investigate this method of treatment and once and for all find out whether some patients can use oral tablets as a form of treatment. We will be applying for a large research grant to fund this project.
Already we have six clinicians and other health professionals who have agreed to take part in this study, and we will be aiming for a team of eight to ten professionals. One thing is already clear to the team – they will not be simply using serum B12 levels to assess the success of oral treatment; instead the clinical picture of the patient will be used to determine whether oral treatments will work. It will be whether the patient feels any benefit that will form the basis for evaluating tablets as a treatment. This society will be a co-applicant for funding and a core member of the research team.

34 Comments

  1. Susan

    Thank you for this. I have been taking 5mg methylcobalamin daily for over ten years, as well as my twice weekly injections. Cyanocobalamin has long been
    considered inferior to methylcobalamin, as it is methylcobalamin that is used in the body and is not made from cyanide, as I understand it. There can be no doubt that very high dose methylcobalamin can assist in providing enough B12 to alleviate symptoms when injections for some reason are not enough alone.

    Reply
      • Susan

        Well I would have thought if methylcobalamin in used in the body that is what one should use. Whiskey for water may be preferred by some. I don’t follow science but then neither do any of the GPs I have had. I will stick with methylcobalamin thanks.

        Reply
  2. jeanne

    I have had PA for over 40 years getting b12 injections once a month all those years. I once tried oral b12 to see if my hemoglobin increased, but it did not. I do not see how cyanocobalamin would work at all even if subliminal, unless perhaps it was methylcobalamin or hydroxycobalamin. I would definitely like to know what the findings end up being.

    Reply
    • Dee Evans

      If you don’t have intrinsic factor than you cannot absorb, so tablets don’t work, l have tried tablets and sprays both did not work and all my symptoms returned and it took two injections (11 week intervals) befor l felt okay! Maybe a patch might work!

      Reply
  3. Joan Norrie

    Thank you for being so vigilant on behalf of all who have pernicious anaemia.Your information is very helpful,hope GP’s will take note.

    Reply
  4. Judy

    That’s great news. The more research the better. Keep up the good work.

    Reply
  5. Wedgewood

    I’m glad to hear that this research will be conducted in a scientific manner . What has been happening to P.A. patients during this pandemic has been disgraceful in the extreme ,and has further undermined confidence in GPs. I already know that tablets don’t work for me, as when , a few years ago , I took B12 tablets at a rate of more than 1 mg a day for weeks on end , my symptoms continued to deteriorate. . Fortunately found out through the PAS forum how to self-inject .
    Many many thanks to the P.A.S. for all that they do for us .

    Reply
  6. Martin Holt

    I am a 1st level RGN specialising in Anaesthetics, recovery and HDU and late last year was given the diagnosis of PA. I’ve had my injections up till March then had no choice but to move across to cynocibalamine. I’ve since started with increased foot neuropathy and visual disturbance in my left eye. I contacted my GP only this week who fobbed me off stating it must be other things as my HB and liver functions were ‘reasonable’ . My answer to him was that my feet and eye don’t feel ‘ reasonable’. Interesting article which I shall follow with interest.

    Reply
    • JANE CHAPPLE

      Hi Marion

      Docs are always fobbing us thyroid patients off so Im not surprised by your comments at all. May be you should pass the latest research onto him and ask for further discussion! He is not the one with the health issues afterall. Wonder he hasnt offered you an AD. Now they want to refuse painkillers which I can understand as opiods are not good but what do they want us to do, put up with the pain?!

      Hope you get it sorted!

      Best wishes,

      Janexx😥😎

      Reply
  7. Frank Hollis

    It will be interesting to see what happens with a much larger dose.

    The Intrinsic Factor mechanism of absorption from the gut has a limited capacity of about 10 mcg at a time. Coincidentally, that is 1% of a 1000 mcg dose.

    If 1% of an oral dose is absorbed passively then the amount absorbed should increase roughly linearly with the dose. So a 5000 mcg oral dose should result in five times as much being absorbed.

    Reply
  8. Marie Vose

    I am a little concerned to hear of this development as I do not have faith in the role of certain clinicians and pharmacists in the matter concerning the misinformation circulating concerning the withdrawal of B12 injections. In my view if this study should progress in any meaningful way and be put into the hands of pharmacists and clinicians, then it should be progressed only on the basis that B12 injections should be restored begorehand by surgeries across the country.

    Reply
  9. Frank Hollis

    I hope the test subjects are chosen so that it is definite that they have PA – They have a B12 deficiency, hypergastrinemia (indicating gastritis), and a positive IF antibody test.

    That should rule out people with a B12 deficiency caused by something else, like PPIs or metformin.

    Reply
    • Frank Hollis

      Why test for hypergastrinaemia?

      To rule out people with a false positive for IF antibodies. False positive will be a small proportion. But anybody with PA will have autoimmune metaplastic gastric atrophy – they will have no Gastric Parietal Cells, therefore they will have low (or no) stomach acid, therefore they will have high levels of gastrin in their blood.

      Reply
      • Barbara Wade

        My doctor says my symptoms could be from many other issues. Also says they are up to date with B12 and PA. They really don’t seem to take this seriously.
        It will be so good for this research to be done. I’m seventy three, and I’d this to go ahead so future sufferers will receive better care. Even so, I’d like to be able to enjoy my twilight years feeling a lot better than I do now.

        Reply
    • Rita

      But why rule out people who have deficiency from things like ppi. They need injections because they cannot absorb just the same

      Reply
    • Sally Farrant

      I have B12 deficiency caused by lack of IF (tested by and acknowledged by my GP) caused by, I believe, the PPI Omeprazole (Not acknowledged by my GP)
      I’m new to this group so forgive me if lack knowledge about my condition, I’ve yet to explore all the articles thoroughly, but how would lack of IF due to PPI use discount me from a clinical trial?

      Reply
  10. E Hatfield

    Surely the whole point of having to have injections is because B12 cannot be absorbed through the stomach so how will that work?

    Reply
    • E

      Yes, I am concerned about absorption as well. What about those who also have celiac disease.

      Reply
  11. M. Byrne

    What are they expecting… people with a PA diagnosis who are already on injections, to just stop them and take tablets? This will cause untold damage!

    Will they also be treating with Folic acid and a B complex? since we know that the B vits work in harmony.

    Will they test for copper & B6 deficiency too…

    Will they be testing for antibodies and making the same mistakes most GP’s make and say no antibodies, no PA…?

    While testing to see if tablets do or dont work….
    What’s more important is better testing in the first place.

    Theres just so many variables. 🤷‍♀️

    Reply
  12. Linda

    I really wanted tablets and sublinguals to work for me. I tried the 5omcg 3 a day go prescribed. I’ve tried 1000mcg x2 a day . I’ve tried methyl b12. Sprays. I havent a PA diagnosis but theses tablets were only an attempt to have less frequent b12 injections not to replace them. Still didnt work. 8m worried with Gos innorsnce of the devastating symptoms that can happen tok many will withdraw even more injections I favour of Trials of tablets. I think it teally set me back in recovery. I’m no where near functioning still. Csn walnut in a straight line now. 2 years in. Pleaded research is happening. Wondering if the frequency of b12 injections and variations shoukd be studied as a priority. Weve had so so many people suffering and then going underground to self inject . Do Gps think problem solved sending them away on tablets. Far from it. Only one person on the forum had it worked for. They were on 3 monthly.

    Reply
  13. Ellie

    What’s the point of doing these test when we know that B12 in tablet form is useless for those with P.A. Money and time best spent on something else I think.

    Reply
  14. Marie

    Exactly.So what is the point of giving this so called study any credence. Campaign for b12 injections to continue through your MP.

    Reply
  15. Delilah E Green

    I have idiopathic small fiber peripheral neuropathy. I was diagnosed with pa when I was 35 years and neuropathy when I was fifty. I think the neuropathy is the off shoot of pa I have taken weekly B12 shots all of these years but during the time my doctor was under quarantine he advised me to try the under the tongue and paste on your body versions.. I am missing the intrinsic factor, neither helped me. I am currently 85 years old my neuropathy peaks and valleys according to the white sugar I eat and also when I am minus my B12.

    Reply
  16. Sharon

    I too have received a letter from my doctor telling me that I will no longer be allowed my Vitamin B12 (Hydroxycobalamin) injections instead I am to go and purchase Cyanocobalamin 50mcg tablets and take two a day.
    I have had these injections every three months for approx 10 years and to be honest my body tells me at times that I need them more frequently than that. Only six months ago I demanded that they gave me one 3 weeks earlier than my due date.
    My next shot should be in 2 weeks time and my body is already telling me I need it.
    My concern is that if your body cannot absorb the vitamin what use is a tablet.
    I have read that in some countries you can buy the injection and administer it yourself. Do you know of a reliable source.

    Reply
  17. Cheryl Mattey

    Is the research re why some people with PA need more frequent injections than others ongoing ? The trial results were promising.
    This was very positive news for those of us who have not been able to function on 1 injection every 2-3 months, whether PA-diagnosed or not.
    “Insufficient to control symptoms” will still continue to force many into self injection unless this issue is resolved first.
    If research on taking tablets for PA is going ahead, I’m relieved to hear that the Pernicious Anaemia Society are to be involved.
    Many who were able to cope with the 2-3 month injection frequency have had these stopped – and are already self injecting because the tablets currently available proved inadequate, causing a return of symptoms. How many of these people are likely to trust their surgery a second time ?

    Reply
  18. David Hutton

    Is it not about time that we are publically questioning why the B12 injections and other treatments currently suspended have not been re-started paricularly when much of he country is returning to the “new normal” dentists resuming non aerosol treatments, hairdressers, beauticians and many other close contact professions, yet the medical profession who are needed to help those in society with medical problems to remain in better health thereby also allowing those people a better chance to fight the virus should it make a return, the medical profession though appear to continue to lock the doors and hide away. To add insult to injury we are now being told that the Flu injection will be available to a large part of the population in the near future and we are encouraged to have that injection. logically if the medical profession are going to be giving all those Flu injections why are PA sufferers not now having their injections re-instated. Dentists in particular would appear to be at a higher risk than someone administering our B12 injections working as required in the area of patients noses and mouths yet with PPE they are getting on with the job so why are the medical profession not similarly getting back to the new normal or is there some other hidden agenda.

    Reply
    • Jane Smethurst

      Why are we accepting this … young people didn’t accept the algorithm that was applied to their exam results and fought back for the decision to be reversed…
      How would we do that this is happening now and we are definitely a forgotten group of people whilst being monitored I am now having to use the new econsult system and speak to any GP …

      Reply
  19. Sally Farrant

    Well said David Hutton, and thank you!
    When (used to!) go for my B12 jab I was in there 90 seconds max.
    Hairdressers, dentists and many others spend way, way more time with their clients. I just don’t get it.
    Tomorrow I’m ringing my GP to try to get an appointment, it’s been 17 wks now. My left arm and hand is dead and tingling, and my tongue is so sore I can only eat soft food, room temp.
    Why don’t they listen to us?
    I’ll let you know how I get on.

    Reply
  20. V. Warren

    Isn’t it time the whole business of feeble care for PA patients in the Country was raised in Parliament. My husband has been suffering fir two years and has not yet been fully diagnosed. Doctors are really ignorant about this deadly disease and the care of patients.

    Reply
  21. Milner

    Problem with pills for many may be several. Cyanocobalamin is a stable substance found in tissues of smokers when bioactive b12 combines with cyanide for safety and elimination. Super absorbent pills pass through stomach to ileum where the chemical alteration ensures gut walls allow larger cyanocobalamin molecules to pass through. What else may go with them? Are more analogues of b12 absorbed then too? Cyanocobalamin may then float unuseable in blood, in patients with little or no intrinsic factor… there are problems with transportation, recycling, uptake by tissues in the absence of intrinsic factor, as much of b12 use is adapted to IF presence. So much b12 for blood serum test, little bioavailability.
    I noticed how test perameters are important. Many use ‘b12’ throughout, but this is a generic term for the many forms of cobalamin. At each stage of research the precise form of b12 must be stated, especially as forms present in blood v tissues have such different effects and results may be shown on success of blood serum levels, but exclude patient accounts of symptoms. Then results can be more fully scrutinised. Some research has precise blood serum b12 counts as a determiner for patient inclusion e. g. some research excludes people with b12 blood serum below 140-200…this could easily skew results, though I appreciate the illness of anyone below these levels demands urgent trusted treatment, not experiment. Patients with pernicious anaemia of course, need full transparency in all stages of research.

    Reply
  22. Brigette

    I was diagnosed with PA 4 years ago but believe I have had it for at least 10 years before that. I had the loading dose and then I needed the injections every 2 months rather than 3 months. I had two bad reactions to two consecutive injections of different brands and had to stop the injections for a year! My body couldn’t tolerate them. They put me on 150mcg B12 tablets per day but that did not work well enough so tomorrow I am trying what I believe is the last option… 1mg B12 tablets per day.
    As I cannot have the injections and only tablets, I look forward to following this research. Thank you PAS!

    Reply
  23. Robin Riddihough

    I live in Canada but found the PA Society on line. I do not have Pernicious Anemia but a number of symptoms of B12 deficiency (principally what tends to be called “jellylegs” in North America). I started taking daily 2000mcg sublingual tablets of methylcobalamin about three years ago. They raised my blood serum levels of B12 considerably and have maintained them at levels far beyond what is regarded as “sufficient” or normal by the medical establishment. My symptoms have improved considerably but not completely. This seems to be in line with a number of studies (principally in Germany) that suggest that damage to mycene sheaths of the nerves from prolonged B12 deficiency may be permanent. All this may have started as a result of 3 years of hyperthyroiditis – now gone.

    Reply

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