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.
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.
Cyanocobalamin has long been thought inferior to methylcobalamin. But not by people who follow the science.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4692085/pdf/mnfr0059-1364.pdf
Cobalamin coenzyme forms are not likely to be superior
to cyano- and hydroxyl-cobalamin in prevention
or treatment of cobalamin deficiency
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.
Methylcobalamin on its own is not an effective treatment – the body needs methylcobalamin AND adenosylcobalamin. Hydroxocobalamin and cyanocobalamin are each converted into methylcobalamin and adenosylcobalamin. So for methylcobalamin to work, you either need to take an adenosylcobalamin (dibencozide) supplement or be having hydroxo/cyano injections as well.
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.
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!
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.
Very very interesting and thank you
That’s great news. The more research the better. Keep up the good work.
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 .
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.
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??
Hi, Jane, one thing I feel is certain as after three decades of issues I am finally getting to the bottom of the causes of my woes is that what you are saying here
“
Docs are always fobbing us thyroid patients off so Im not surprised by your comments at all. “
Is quite true. And the more I encounter it, the more frustratingly angry I become. Is there any organisation dealing with this situation? I wonder if there is any corelation between GPS and GPS using PC.s because nowadays each visit to the GP feels a lot like a “computer says no
“ sketch whereby unless you tick all boxes then there is nothing wrong with you.
More to the issue at hand though. I have had my booster shots about 3 months ago. I left nothing to chance I hope, so since then I have been taking sublingual B12 complex that has both metho and adenoi varieties included. Bloodwork results four days ago showed my B12 reserves are within normal parameters and that deficiency did no occur. However albeit less in intensity, symptoms persist. The fatigue is plaguing me, shortness of breath, exhaustion from simple things like walking the dog. And these symptoms intensified again at about the end of month 2 post injections.
My PA is due to intrinsic factor antibodies. No further diagnostics were used considering my debilitating fatigue and presence of antibodies lead to the conclusive result of PA. Add to this Thyroid antibodies, and a host of other relevant issues and you can understand how the complexity alone may give a GP a headache. Although admission of ignorance is what hurts them the most is what I suspect from experimenting on the matter with a close friend who is a GP.
One last thing, I have read even injection B12 excess gets secreted via urine. Hsving had leg edema practically non stop and hypertension for the past 15 years, my GP has stuffed me with 4 medications, two of which are diuretics. So I pee loads. What nobody can answer me is, surely if you have less red blood cells doing the good work ferrying O2 about ones body allowing metabolism to work, etc. Taking pills that make one pass 4-6 litres of peepee in 2 hours, (this fluid is taken from broken down blood and this is how diuretics reduce the pressure in the boiler, by reducing the volume of blood that goes around) then isn’t it reasonable to say assume that PA is made worse with less of a percentage of good red blood cells, not to mention the loss of nutrients and minerals from this aggressive water squeezing? Anyway, the swelling persists, as well as everything else and in the past 15 years I spent money and time that could have actually been used to find the cure for cancer if GPs did not just fight symptoms and cover their own selves by making sure they gave you enough to not die, but not much to combat the causes. So, you see, we need to change this culture. It is unfair and unproductive to say the least.
Hello I am also hypo thyroid and urticaria patient and recently diagnosed with P.A.
I feel my last B12 injection causing allergic reactions so I might have to take methylcobalamin tablets instead.
However I started to do celery juice, it is good recommended by Medical Medium.
Jane, I am a retired RN from USA. I am wondering if your doctors have tested you body’s inflammation, which could be the culprit. It sounds as if you suffer from an autoimmune problem. Best wishes! Peggy Sasser
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.
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.
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.
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.
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.
But why rule out people who have deficiency from things like ppi. They need injections because they cannot absorb just the same
Well said thank you I’ve had PA for many years I have injections every three months by the time I was due the B12 I was worn out tired and not able to concentrate.
I paid private injections believe me what a difference however that was short lived however it proved regular injections work. Beryl
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?
Is PPI omeprazole a tablet for upset stomach?
IF antibodies are detectable in only about 50% of people with PA, as noted in the BCSH guidelines.
Surely the whole point of having to have injections is because B12 cannot be absorbed through the stomach so how will that work?
Yes, I am concerned about absorption as well. What about those who also have celiac disease.
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. ?♀️
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.
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.
Exactly.So what is the point of giving this so called study any credence. Campaign for b12 injections to continue through your MP.
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.
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.
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 ?
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.
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 …
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.
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.
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.
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!
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.
There’s oral and there is sublingual. And there is MUCH-needed education on this.
WIth a lack of intrinsic factor in the stomach, absorption of B12 taken “orally” would be the same as natural sources or fortified foods—not enough.
Conversely, sublingual tablets (placed “under the tongue”) are broken down by enzymes in the saliva, absorbed into the capillaries of the mucosal tissue, pass through the sublingual gland, which is venously drained by the sublingual vein. It has now entered the bloodstream and is a more direct route to the circulatory system, bypassing the dysfunctional gastric segment.
The most difficult part of effective sublingual administration is, well…keeping the tablet under the tongue! For maximum absorption, the tablet should be “locked down” under the tongue and kept there until it is completely dissolved and diffused. With some tablets, this can take upwards of 40 minutes.
I phoned my surgery yesterday expecting to be told that my 4 weekly injection was still not available but to my surprise I was told that I could get it today, went this morning and was given the injection with no problem and made the appointment for the next one in four weeks time.
My huge concern is that *if* 1mg oral cyanocobalamin daily is shown to be equivalent to 3-monthly hydroxocobalamin injections, that will be used as justification for moving everyone to those tablets, because GPs tend to keep everyone on 3-monthly injections. Whereas many of us (especially those with neurological symptoms) need much more frequent injections – indeed, the BNF states that neurological symptoms should be treated with alternate day hydroxocobalamin injections until there is no further improvement – guidance that is routinely ignored by GPs. I can’t see how daily 1mg tablets (with a passive absorption of only approx 1%) can possibly be equivalent to 1mg intramuscular injection every other day.
I would be interested to follow this and even be part of the research if needed. I started on oral hydroxocobalamin 1mg per day 10 months ago after having a nasty reaction to my usual B12 injection. GP will only prescribe 150mcg pd which is useless but apparently that is all the NHS will authorize. So far so good for me – my B12 is way up – not sure about other aspects but I have never felt better. And I had PA real bad, especially in the beginning and the 12 weekly shots were never enough – started to get symptoms after 10 weeks. My question now is – am I safe to have the Covid vaccine after having such a previous reaction to an injection? I don’t feel safe (and that’s not even talking about whether it will be effective!). Thanks for reading.
I am shocked and saddened by a number of these comments(I did not have time to read them all) about how ineffective many of you seem to find your treatment in the UK.
I live in France and was diagnosed with PA after being hospitalized at the age of 48 with paralysis in my four limbs that fell from the sky. One week I was running 15km a day and the next I couldn’t walk. By the time I was hospitalized I couldn’t even control my bladder.
Anyway, I was started immediately on injections (here in France they use exclusively cyanocobalamin) of 1000µg (1mg) B12 per day for a week, ‘by which time I had regained my ability to walk and was discharged) followed by weekly then monthly b12 injections (all done by a visiting nurse, again free). During this period my blood B12 levels were monitored monthly, as were my haemoglobin and haematocytes levels etc. After a year my neurologist said I could go onto Oral B12 therapy. I have a renewable sixth month prescription for 4ml ampules of 1000µg cyanocobalamin, which I collect free of charge from any local pharmacy each month. These I take orally (usually in a glass of orange juice). My testing regime has now changed to every three months, though I find ther is no problem if I go more often to reassure myself. These tests are also free, and the results are usually the next day.
So far my levels have remained high on this oral therapy, as the research I have read (and I have read a lot) suggests between 1-5% of B12 taken orally is absorbed by the gut through simple diffusion alone. even a conservative 1% of 1000µg would give you 10µg per day of B12, far more than the recommended 2.4µg/day.
Also, my level of red blood cells etc are higher than at any time for which I have records. Ever since moving to France in 2010 my doctors have given me regular blood tests, unfortunately not for B12 though. In the UK I have never had a single blood test as a means of checking my health. Now looking back I can see the signs of anaemia starting in 2012. lowering haematocyte count, larger red blood cell volumes etc.
Also, people say B12 has no side affects. Taking ‘small’ oral doses of 1000µg/day I would agree. However, the 1000µg/month injection gave me a see-sawing serum B12 level that I could ‘feel’ coming out in Teenage acne the week after my injection, with spots on my face and back, even places I’d never had acne as a teenager, such as my chest and arms.
I know everyone is different, but for me the oral doses work extremely well for me. I have zero side effects from them (if you discount intestinal gas! The gut bacteria really seem to appreciate the B12), and thanks to the fantastic healthcare system here in France I have a fridge shelf full of B12 ampules (they need cool storage) and get regular testing. At my GP’s insistence I am also monitored regularly for signs of thyroid problems, including echographies of my thyroid and blood works. I am also on a two yearly program of visits to a gastrologist, who screens me for the scariest aspect of PA, the rarely mentioned increase in Stomach cancer. This involves a camera down my throat under anesthetic.
To hear the stories of patients in the UK my heart sinks. Even though my B12 doses are free, the actual price if you want to buy them over the counter is about 1.50€ for a box of 6. Hardly expensive. Also the levels of resistance to diagnosing and treating a well know disease seems medieval.
Also, when visiting the UK I found a pharmaceutical supplier in Manchester that sells 1000µg B12 tablets for between £5-10 for 400. I tested them last year over a month. They worked just as well as ampules on my serum B12, so I use them when traveling, as they are easier to carry than ampules.
I live in England and throughout all of the lockdowns I have been able to attend my GP surgery to have a B12 injection every 6 weeks. I had a letter from my doctor giving the option to try a high dose of oral B12 instead but only if I did not want to go to the surgery. and in the letter it said that there was only “some evidence” that oral treatments work. I decided to have the usual injections. What are the “adverse reactions” people sometimes have to the injections? I often have a bad case of “the runs” one hour after the injection. I got this condition after taking omeprazole for acid reflux. It is my view that it should resolve now that I have stopped this medication, but my GP won’t allow me to find out if I do still need the B12, he just expects me to have the injections for life. He does not want to admit that this is a new kind of PA. Omeprazole should be BANNED.
I definitely want methylcobalamin, as I understand it can cross the blood-brain barrier. Also, because it’s what our body recognizes.
I’d like to take methylcobalamin AND adenosylcobalamin. The question is HOW?? My compounding pharmacy in California just informed me that they will no longer be making methylcobalamin for injection.
So my question is this: Is there an intranasal methylcobalamin + adenosylcobalamin that I can take? I understand that the blood vessels that supply the nose are large enough to handle this large molecule (B12). I read that B-12 is the largest vitamin of all.
Patches sure didn’t work. And now I’m without my injectable methylcobalamin.
you can try Hydroxocobalamin injections this is used in UK as standard treatment. The hardest thing is to find a doctor to prescribe it especially since covid restrictions.
you can also buy methylcobalamin + adenosylcobalamin combined tablets, they are the best absorbed of all forms of b12. I have heard of B12 being the largest size of molecule that cannot be absorbed through the skin which means patches do not work. You should also take combined vitamin B complex tablets with methylfolate (not folic acid) as they are all needed to work in sync together.