UPDATE: Had my appointment with the nurse for my B12 shot yesterday. She said I see you enquired about taking B12 orally and I was like, eh, no, one of your GP’s told me it was a new treatment that they wanted me to try. She said and you can’t take B12 Orally because you have PA and you’ll never be able to absorb via your stomach and I said, that’s what I told the GP last week and on the phone on Monday. She couldn’t understand why they’d even had the conversation with me. I said it’s a risky game, if a GP is recommending oral B12 for PA patients.
UPDATE: Called the GP yesterday, advised that I’d researched oral B12 for PA and that it wasn’t the right treatment for me, especially since I couldn’t find any evidence or official guidance that the rules had changed. GP said that was fine and it was just something that’s being offered to patients and no one is being forced to change treatment and that was the end of the conversation. Let’s see what happens on Friday when I go for my injection.
Today I went to see my GP because I’ve got a bit of an infected foot (not PA related but the reason I went 😊).
The GP I was seeing today, said there was a note on my record from another GP, to offer me a new B12 treatment for PA that‘s taken orally, I was blown away. Had no idea that was an actual thing. I asked if that was suitable for me because I’m not just B12D, I have PA and she said yes, it’s a new treatment.
There’s a GP at the surgery who has been working on this with the Lothian Health Board and that she’s a champion and expert in B12 issues (I’ve never met this or heard of this GP). She tried to prescribe the meds to me but couldn’t find them on the system. I’m due back next Friday for my actual shot, which she said I won’t need but I’ll get my new drugs then. I’ve been doing self injections twice a week for about 5 months, haven’t told any GP or nurse about them but it’s been working for me. Nearly a year since I got diagnosed with PA.
Anyone got any idea about this new B12 treatment? I’m a bit worried that I’ll start to feel bad if I stop my Injections and go on to the pills. Seems like a huge change from you can’t absorb to oh yeah you can 🤷🏻♀️.
What’s everyone’s thoughts? Sorry if someone’s already posted on this, couldn’t find anything.
Thanks in advance 😊
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Bumbles0404
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Current UK guidelines recommend injections for PA.
There might well be research going on for a suitable oral treatment but BNF (see link below) still recommends jabs.
Being very cynical I wonder if you are being used as a guinea pig for this GPs research/study?
Patients must give informed consent if part of a study/research/clinical trial which means they must be told in detail about what is happening and give their written agreement to be part of it They are not supposed to be part of a study without being told.
Search online for "informed consent clinical trial uk"
If I was offered a similar choice I'd ask to be shown the official guidelines (national and local) that recommend oral treatment for PA (there aren't any as far as I know).
There is a West of Scotland Thyroid support group which has meetings in Kilmarnock and welcomes people with B12 deficiency and other auto immune diseases such as PA.
"to offer me a new B12 treatment for PA that‘s taken orally"
Oral B12 treatment which I assume is in tablet form is far cheaper than injections. B12 for injections is relatively cheap, about a £1 per ampoule but the nurses' time to give injection is expensive.
I do not have a PA diagnosis myself but have not found oral treatments effective. The only treatment that made a real difference to me was b12 injections and if my NHS jabs are stopped I will be sourcing more of my own.
If you are not treated adequately you could be at risk of deterioration.
I wrote a very detailed reply on another forum thread with links to b12 books, b12 websites, other UK documents and other b12 info which you may find helpful.
Thanks so much for all this. I’m going to take your advice. It didn’t feel right today. I think I’ll call on Monday/Tuesday and ask to speak with the ‘expert’.
If by speaking to the expert you mean PAS (Pernicious Anaemia Society" the PAS office is open Tues from 8am and on some other mornings including Saturdays.
I suspect there may be a cost incentive to change people over to oral treatment rather than it being a proven better method of treatment so be very wary.
You could put your concerns in a brief, polite letter to GPs. The reason I suggest this is it's my understanding that in UK, letters to GPs are supposed to be filed with medical notes so are hopefully less likely to be ignored.
Letters could include symptoms lists, test results, dates of diagnoses, family and personal medical history, extracts from local and national guidelines, referral requests , request to file a copy of letter with medical records etc.
Writing a letter to GP ...
1) Allows writer time to think carefully about what they want to say.
2) Avoids face to face confrontation
3) Allows GP time to do their own research if letter reaches them before next appointment
4) Creates a paper trail which can be useful if there is a need for future complaint
5) Always keep copies of any letters written to GP and have copies of recent ones with you in case GP mislays their copy
See letter writing link in my other post.
There will be some GPs who get may get irritated by patients' letters so you have to balance this against the need to have adequate treatment.
I gave up worrying about irritating GPs when I realised I was heading for dementia and spinal damage if I didn't get treatment.
In my own situation I would not agree to oral treatment.
Thanks for all your advice. I’m going use all of what’s been said here today to speak with the GP. The last time I had my 12 weekly injection, I told the nurse it wasn’t enough and she said she’s put a case forward for 8 weekly and all of a sudden I’m being offered pills!???
Maybe I misinterpreted the old guidelines which I can no longer see (new or old) from the United States. I thought it was indefinitely until neuro symptoms improved. That is changed now. They protected themselves from any sort of liability I believe by never dating the document. Because I have had a printed copy for a long time. Somewhere. Some people have a prescription for every day but they have to give the shots to themselves and that probably is subcutaneous.
If it will help you get me your address and I can send you the old document. But I would think PAS has it.
They’ve been actively trying to crack down on B12 since the 1960s. It’s just much easier to do now with coordinated information technology.
I defo have Neuro symptoms and they have got much better since starting the IM B12 and they got even better when I started SI, still feel I might need three a week instead of two but not tried that yet. It’s taken a while to get the balance right thus far and I’m not about to go back to feel as low as I did before hand. So no oral B12 for me just now.
I will ask and let you all know what the story is behind this, as I realise how important it is for us all know what’s going on across the UK and everywhere else.
I’m 100% sure that Martyn Hooper, our Chairman would have known about this “new treatment “ , and told us an out it ., if it were true .I know that GPs are so determined not to give injections of B12 if possible .But they play fast and loose with our health if they try to force tablets on us when we need injections "
. It would also be on the NHS website , concerning P.A. treatment .
Ask to see the proof of this new oral treatment for P.A. ( you won’t because it doesn’t exist ) Insist on injections ,and say that you will take the matter further if you don’t get your injections .
This is the first time a GP has actually spoken to me about my PA since I was first diagnosed. No Dr involvement at all since the phone call to diagnose. The GP today actually used the words they guidelines have been changed recently’
"The GP today actually used the words they guidelines have been changed recently"
If the GP meant that the guidelines have been changed to recommending oral treatment then as far as I know that is not correct.
Have you asked GP which guidelines they are referring to and get the full official name of the document so you can check for yourself and possibly contact the PAS to ask them.
I really think the PAS need to know; if this is happening across your region there could potentially be hundreds or even more people affected.
The only change I am aware of is that the BNF was changed over a year ago.
I was so taken aback by it all I didn’t ask many questions and as I mentioned, I have a very painful infection on the bottom of my foot and I was a wee bit consumed by that yesterday. It should’ve probably been a whole other appointment to discuss the B12 treatment. I did say that I was always reading up on things here and hadn’t read anything about it and the GP said oh it’s pretty new. So new she couldn’t find the actual prescription on the system!
I would double check that what is going on isn't a clinical trial because if it is they are not following proper protocols because you haven't been told it is a clinical trial and you haven't had the possible risks explained to you, so you haven't given informed consent.
To be fair I'm not against clinical studies and trials because that is the only real way of knowing practically what is likely to work and what the limitations are to specific treatments but people should be properly informed that they are taking part in a trial and really given the opportunity to opt out which doesn't appear to have been the case for you.
The use of high dose oral dose work for some people but not for others - and that doesn't seem to be directly related to PA as the mechanism being used, passive absorption isn't related to PA but it also isn't well understood and is more of an observed phenomenon than an understood phenomenon at present. It also means that there isn't any way of knowing who it is going to work for and who it isn't going to work for.
There have been a few large scale studies - mainly in Canada - involving high dose oral. Quite a high proportion of patients in the studies actually prefered oral but there were significant numbers who didn't - not sure of exact percentage but it was probably around 20-30%.
The trial relies upon passive absorption but there are studies that show that whilst this can be effective for some patients it isn't effective for other - this doesn't seem to be related specifically to PA - but the studies show that for about 20-40% of participants passive absorption just doesn't result in enough B12 being absorbed.
swiss study looking at how effective oral really is when evaluated against other markers of deficiency (eg MMA)
and this article is a literary review in patients with B12 absorption problems with a breakdown of effectiveness of oral delivery by absorption problem
Hello Gambit62! Been a while since I was on the site but this article really caught my attention! I’m doing great and feeling fantastic with my injections twice a month. With a diagnosis of PA, I wouldn’t do anything to rock the boat on my health. I never want to go back to feeling like I did before my diagnosis and treatment. It’s not worth taking the risk in my opinion! Thank you for all your sound advice!
Oral Vitamin B12 Replacement for the Treatment of Pernicious Anemia
Many patients with vitamin B12 deficiency are elderly and have multiple co-morbidities. They often have multiple appointments to attend various clinics and may have frequent hospitalization episodes. The need to schedule vitamin B12 injections is an avoidable addition to the cost and complexity of their care.
AND
The use of oral route results in significant reduction in manpower costs.
Have to say, I find those statements questionable.
For a start, if the person needs assistance, then that would mean 90 interventions to ensure they take their oral B12 rather than one to have an injection. (Yes, of course, this might just be an extra tablet/lozenge but unless it is checked, they cannot know it is being taken.)
whilst true that compliance is one argument against any medication that needs to be taken regularly in unsupervised conditions and gets particularly complicated when talking about patients who are more likely to have cognitive problems the fact that the patients have co-morbidities is likely to mean that they have to have supervision for compliance with medications anyway.
There is also the unnecessary assumption in relation to injections that they have to be administered by someone with medical qualification - eg a district nurse - rather than a suitably trained carer, meaning the need for the attendance of an expensive resource adding to the cost. There is also the fact that in a large number of cases care givers who are administering tablets are likely to be family members and hence seen as a no cost resource.
Not saying it is correct - but part of the equation of 90 administrations (and I think the reality is that the study was probably using data from the US where treatment is monthly so only 30 administrations - is who is actually doing the administration.
Surely they can't switch people over to oral B12 when there is no product listed in British National Formulary - at least, not as one with a tariff price? There are some 1000 microgram cyanocobalamin tablets. (BNF seems to be listing lots of non-UK medicines these days. Probably overall a good thing.)
In particular, there would need to be guidance about things like Leber's if the only tablets are cyanocobalamin.
I had exactly the same when I went to the GP to get my injection back in December. I had a right fight on my hands and it made me really ill. Thankfully sleepbunny came to the rescue and I printed out all the links she put on. Thankfully I got a GP savvy in PA and had mine reinstated. Make sure you are a member of the PAS just in case. I’ve checked the BNF and there is no new treatment on there. Good luck.
Thank you for this. So you went on the pills? I’ll be calling on Monday to tell them I’d like to stick with injections. If they say no, I’ll continue to self inject any way and not take the oral B12.
This is all rather concerning. I live in Perth and Kinross, hope they don't jump on this oral VitB12 bandwagon as I once spoke to a GP on a night out....it was clear he had little knowledge re this topic. Please please keep us updated, thank you. Wishing you well Bumbles x
I have always researched and understood that if you have PA you cannot absorb orally B12 due to the lack of intrinsic factor. I’d stick to injections until we know a lot more!
My godson is a GP and he says that there are moves afoot to switch all patients off i/m injections onto oral supplements. I emailed Martin to tell him but he did not respond. There are two small scale studies that claimed that oral treatment is as effective BUT their endpoint was serum B12 level not treating the patients symptoms. The sensitivity of MMA has not been properly investigated. It returns to normal levels with only small doses of B12 in gastric surgery patients who have become B12 deficient.
This is a move to save money because they fear a flood of elderly patients as B12 levels decline with age. Who is behind it? P.A. society needs to be prepared to fight this. It is similar to the lower dose guidelines for hypothyroid patients that has resulted in floods of complaints from patients like me who have been made wretchedly ill by my levothyroxine being reduced. It is not easy to oppose these sort of things. We need an argued response to take to our MPs.
Martyn Hooper and PAS ran a pills trial—thank for this mess. ,apparently according to Pat Kornic pills AND shots worked best. I had super delayed diagnosis and suffered hip break, optic neuropathy. Meta analysis papers trying to make it look like high levels give you cancer.
Get your records of your diagnosis. Put them in a safe. We will be fighting for our lives.
I imagine the head of the organization continues with his daily high-dose shots.
If we weren’t all ill and spread over the earth we should be demonstrating.
If you’re on Facebook group you will see many vanishing diagnoses.
I have no other idea how to advise you. I think you should be honest re. additional treatment working.
I periodically consider starting US PAS. Martyn has fallen out of contact. Of course our chronic life threatening condition pales compared to virus pandemic.
It also strikes me that no one in UK seems checked for atrophic gastritis and there’s your proof of PA which soon they’ll be telling you you never really had.
"Get your records of your diagnosis. Put them in a safe"
I am very worried about people like me , who suffered for years with typical B12 deficiency symptoms (not due to diet) with no confirmed PA diagnosis, who I think may struggle to get B12 injections in the future.
I do think that getting proof of the cause of your B12 deficiency can be very useful whether it is PA, Coeliac disease or other cause.
Proof could include
1) copy of original diagnosis by GP from medical records especially if cause is stated
2) copy of letter from specialist (eg gastro enterologist) to GP eg confirming diagnosis
If no proof of original diagnosis then
1) UK prescription forms that show hydroxycobalamin ampoules as one of current medications might be useful.
2) Mention previous diagnosis of PA in letters to GP and keep copies of letters sent
This is just one part of the guide (the 5th). Links to the other parts at the beginning. As far as I see, it recommends injections unless the deficiency is diet related.
That being said I think there are studies showing that tablets also could work, but the total amount of b12 you'd need from tablets is about 100 times larger because so little is absorbed. So one 1 mg injection every three months (according to standard treatment) or 90x1 mg tablets (one a day for three months), where the amount absorbed from tablets is uncertain? What is there to gain?
Better to stick with what works for you. Don't let them make you their guinea pig without your consent.
I think theres been some rather dubious small research studies alleging that supplements are as good as injections. Research article reviewing the research below up till 2016.
Seems tangentially related to what we are facing. Double-bind placebo controlled studies were never done with our disease. It would have been unethical because it’s life threatening.
I was trying to paste a screenshot from Twitter but apparently can’t.
From Benjamin Mazer on Twitter (before I post, Sleepy Bunny’s link to Mayo article is our best defense; however they use ranges that seem to be vastly exceeded with frequent injections as tested by new tests, reliability I have no idea).
“It’s unethical to test the standard of care is something we hear a lot.
It’s also unethical for an unproven medical intervention to become standard of care.
It is in this gap that doctors who work at prestigious centers, give the plenaries, and write the guidelines hold power.“
Sally Stabler at University of Denver holds 9 Multi B pill patents and is reference no. 2 above. Mayo and The Cochrane Collaboration say there is insufficient proof in people with PA. Not many of us willing to take the risk.
People here raising the question of whether we are research subjects—it feels like that. But I think they feel they have done their paltry research and have instituted new policies. Getting nurses to deliver the bad news is same “protocol” in US.
“You never really had it.”
According to Aetna policy very few conditions will continue to get injections. IFAB-positive PA and tapeworm are the only ones I recall.
This is a multinational policy program.
I believe the B12 is being repurposed for more expensive drugs.
Trump has done one thing right and my B12 has never been cheaper.
Your doctors are not ignorant but playing dumb. Some accounts on Twitter and Facebook show doctors referencing new policies (such as the letter shown). Tests done to discontinue you are not the right tests. Therefore to prove them wrong you must prove IFAB positive or high Gastrin (blood test)/atrophic gastritis (endoscopy pathology).
I might have missed something on those cascades therefore hope others will look into them.
Parietal cell antibodies alone sometimes show in family members so not specific. I met one woman in desperate neuro group whose mother has PA, she herself has IFAB, but neuro had her on another expensive program.
Yes, I've seen a few tweets on Twitter where people who have been on injections for years are having them stopped and replaced with tablets.
The reason? Cost cutting .
Due to anxiety I attempted to replace my injections with sublinguals and was doing 'ok' until around the ten day mark, when I started feeling so ill, I had no choice but to start my injections again.
Now doing EOD injections with sublingual inbetween.
Here's a copy of the letter they received
[Admin Note - link deleted as it contains the name of a individual - it is not in line with forum guidelines to name individuals in the open forum (safeguarding of personal identity). And I also suspect this may have been posted without the individuals knowledge or consent).
Surely if you self inject subcut that has to be cheaper than a whole load of daily B12 tablets that we all know will shoot up in price now pharma has it......
I tried 10000 B12 Shots per day.....that didnt work....I tried different forms of B12 sublinguals......nope. It was only injections that stopped the rot but not completely resolved as there is permenant damage from the delay. My neurologist recommended the B12 jabs. Its evident that if I miss a jab my tremors increase and I deteriorate......do they really want to do that to people and risk litigation??? If they try this one with me I will be writing to the practise/CCG formerly warning them of the consequences and the fact that they will be responsible for any deterioation and the consequent harm they will cause. I will have a private doctor to make an assessment prior to starting which I will send a copy of the report to the gp practise and consultant.
There’s a letter posted on Twitter and it’s basically cost cutting measure and not a new magic pill. These won’t work if u have P.A. it’s moronic doctors who have no idea and Nhs trying to save money. Be careful and keep self injecting
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
IFA test was negative and most of my B12 results were well within normal range so no proof apart from one below range B12 result years ago (not diet related) and Coeliac test was negative. They didn't do both recommended tests for Coeliac but I went gluten free anyway.
In my case, I suspect I have an as yet undiscovered/unresearched problem leading to B12 deficiency symptoms although have had multiple risk factors for B12 deficiency through my later life.
The only reliable proof I have is that most of my symptoms disappeared when I started B12 treatment (had to treat myself at the start) and my symptoms return and soon deteriorate if I go without B12.
I noticed by chance you have updated your original post on this thread. Might be worth starting a new thread on the forum with the updates and maybe a link to this thread.
Edited posts and new replies on older threads are often missed by forum members.
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