I've had a letter from my GP today saying I will be switching to oral B12 from injections. I was diagnosed with PA nearly 3 years ago. I phoned to query it and they said the GP had reviewed all patients receiving injections. I will have a blood test before my next jab but then after that I change to oral. I have to write to the GP to express my concerns. After some googling it seems they may be stopping them due to the pandemic which is odd as I've had 4 jabs since it started! There seems to be conflicting info out there to do with storage of B12 in the liver and oral absorption. I understood that with PA I can't absorb it orally so this isn't going to help. I will try to write an informed email to my GP expressing my concerns and getting my full blood records! Any advice would be appreciated
Update! This is the reply I had from my doctor! I will now put more evidence together to fight this!
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Kaz80y
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High dose oral does not use the same mechanism as is generally used for B12 absorption. The mechanism involved is caused 'passive absorption' but it doesn't work for everyone , though it does work for some. Whether or not it works does not seem to be related to the absorption problem. If switching to oral it is best done after an injection.Suggest you ask to be treated in accordance with BCSH guidelines.
One key element of guidance is that treatment should not be based on serum B12 levels as interpreting these is at the very least difficult after injections have started.
OK, don't do that. Instead, write to the doctor. Make the letter short, and to the point.
• I was diagnosed with Pernicious Anaemia in 2018.
• The British Committee for Standards in Haematology say that treatment for Pernicious Anaemia is lifelong injections. British Journal of Haematology, 2014, 166, 496–513
• I require proper treatment as described in the British National Formulary - injections of hydroxocobalamin every 2 to 3 months.
That's it. Nothing else.
cc: the letter to the practice manager, your local MP, local press, radio and TV.
Goodness, the ignorance & arrogance of some doctors is astounding.
I can't remember the source (so someone else correct me if I am wrong on this) Intrinsic Factor is needed to utilse the bodies own store of B12 from the liver.
Then the NICE guidance say (as arbitrary it is on many areas e.g treatment frequency) says:
"Maintenance treatment with hydroxocobalamin 1 mg intramuscularly every 3 months for life — where B12 deficiency is not thought to be diet related.
Maintenance treatment with oral cyanocobalamin tablets or a twice-yearly hydroxocobalamin 1 mg injection — where vitamin B12 deficiency is thought to be diet related."
How should my management vary when considering the possibility of COVID-19?
Non-dietary vitamin B12 deficiency
Discuss the need for intramuscular (IM) hydroxocobalamin with each person.
Ask people who require IM hydroxocobalamin COVID-19 screening questions before they attend GP surgeries.
Explore alternatives to attending GP surgeries for administration, such as local pharmacies or home administration by district nurses.
Offer oral cyancobalamin 1 mg per day as an alternative until regular IM hydroxocobalamin can be resumed — aim for the shortest possible break from regular injections.
Advise people to monitor their symptoms and contact their GP if they begin to experience neurological or neuropsychiatric symptoms, such as pins and needles, numbness, problems with memory or concentration, or irritability.
People who are already self-administering IM hydroxocobalamin should continue to do so.
Switching to self-administration during the COVID-19 pandemic is not recommended as instruction is likely to be difficult.
Then the highest dose of oral B12 the NHS would prescribe is 1mg cyancobalamin a day & someone with pernicious anaemia would at best absorb about 1% of that via passive diffusion although it would be interesting to know what effect 100 mg oral B12 would have and I think there is a obvious conflict of interest for GPs to free up nurses than to ask questions like this or properly get feedback from their patents bmj.com/content/365/bmj.l18... and since the schilling test is no longer available the exact cause of the low b12 which is not technically the same thing as pernicious anaemia not caused by diet is probably unknown so 1mg cyancobalamin will probably help someone who can produce some Intrinsic Factor that they can absorb enough from a oral supplement but just not from food but to presume it will help everyone is absurd.
Scientist, not medic. Please don't shoot the messenger.
I share your concern. All patients with B12 deficiency are helped with injections. Patients with dietary B12 deficiency can be helped with tablets. Some PA patients appear to be able to respond to 'mega-doses' of oral B12 however, but this situation needs very careful management because it's not yet possible to work out who will benefit without a clinical trial. Anecdotal 'evidence' can suggest that parenteral B12 may be over-used in some patients, so whilst I share your worries, then if the GP is set on trying this out, make sure you are monitored carefully because it's your health that's at stake. Good luck.
It might just work, but make sure the dose is high enough!
Why would a scientist talk of anecdotal "evidence" ?
"Over-use of parenteral B12" sounds like an opinion:
rather like the "B12 is toxic/carcinogenic/highly addictive" or "the sense of euphoria from self injecting" I had to listen to from various consultants who really should have known better.
If it is not yet possible for anyone to know who will "benefit" from tablets, it's too early to introduce them as a viable alternative. Patients have had no say whatsoever in this, given no choice, the aims are questionable; the research must come first.
How long before the required "mega-doses" of oral B12 get reduced for no apparent reason -as has already happened with B12 injections ? Will you start talking about over-use of tablets ?
Cherylclaire my understanding of 'over-use' as in FlipperTD 's response is more to do with patients not being given the opportunity to determine what treatment is most appropriate for them rather than anything to do with saying that you can overdose or become addictive. Some patients in studies have preferred using high dose oral.
[Scientist's, not medic's opinions] come from some work I was involved in with a GP. He had recently joined a practice and was surprised at the number of B12 injection scripts they were issuing; it seemed to be considerably higher than what we believed was the incidence of PA in the general population. His concern was that once someone had been written up for B12 injections they'd be on them forever. In some cases that's entirely necessary, and in others,might not be the case. So, as I don't have access to the numbers, or published data, then I have to cast it as 'anecdotal'. Perhaps I shouldn't have even mentioned it!
Globally, I believe [no current data to support this] that large doses of oral B12 have been used to some good effect, although it's not possible to work out who will benefit unless you do the experiment, and for that, if it meets the criteria of a clinical study, it needs [certainly in the UK] to be appropriately designed and reviewed before the work starts, and the results should be presented afterwards. Otherwise studies that don't get published shouldn't be done in the first place.
It's interesting that you picked up on the 'sense of euphoria from self-injecting' which sounds a bit like a placebo effect. I'm sure that's the case [but of course that's only my opinion!]
Sometimes I simply write these things on the fly, and should review them before I post.
One GP's opinion can have unfortunate consequences for patients, as many on here can testify. So mention his opinion by all means, but just don't allow it too much gravitas. It is based on nothing but a personal observation: this GP's belief about what the PA percentage in UK population might be. Except we don't know that.
Another thing we don't know is how many other problems might have caused B12 deficiency in these patients. Not necessarily dietary, but neither necessarily PA. After all, getting a true PA diagnosis can take over ten years and I doubt that many patients have the stamina to keep pushing for that length of time.
As for whether tablets can be called globally beneficial treatment- that is another thing we don't know. Certainly true for people where meat is considered a luxury - in all likelihood, however, tablets would be unaffordable too.
I didn't pick up on any sense of euphoria from self-injection, quite the opposite. This was a flippant remark made to me by an otherwise intelligent genetics consultant. He should have known better.
We don't need luck, we need research. Once we have this, we are (let's hope) no longer at the mercy of a GP's personal viewpoint. I'm eagerly awaiting results of the Pernicious Anaemia Society's research into why some people clearly need more B12 injections than others.
I'm willing to bet that it has nothing to do with euphoria -but that's just my opinion.
PA, despite being around for a long time, is still poorly understood in some quarters. When we had a useful diagnostic test [Schilling Tests] life was simpler but even then not 100%.
Some individuals are able to absorb sufficient B12 from tablets, despite suffering from PA, and some don't.
Thanks for all the comments, I feel more informed now for when I reply to the GP. They have allowed me to book for my next B12 jab in a couple of weeks and I will have a blood test before the injection. It looks like they will be monitoring me so it will be interesting to see what happens and how I feel!
True monitoring should include not just how much serum B12 is in bloodstream on a certain day, but what is happening to the symptoms specific to an individual patient. Just in case this part of monitoring doesn't occur, have you some highly visible symptoms that, on reappearance, would be very hard to ignore ?I know this sounds cynical, but I'm just worried about the aim of this experiment.
Glad they "allowed" you to book for your next injection though.
Mine tried to do the same and I just categorically refused on the grounds that I cannot abrob orally, surprsingly it was as simple as that. Just say no.
Link has letter templates covering various situations with b12 deficiency that people can base their own letters on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Can also be helpful to read the comments from people under the articles.
Oral B12
There are moves across UK to move more people onto oral tablets and not just as a temporary measure due to pandemic.
Being cynical, I suspect that the push to put more people on oral tablets is a cost cutting exercise. B12 ampoules for injection are cheap but the nurses time to give them isn't.
Are you by any chance in the area of UK mentioned in blog post below?
From what I have read, there does not appear to be any strong evidence that oral B12 is as good at treating B12 deficiency as IM injections in those with absorption problems.
Articles that mention oral B12 versus IM B12 injections
I've written some very detailed replies with more B12 info causes of b12 deficiency, symptoms, more 12 books, more B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.
"I've had a letter from my GP today saying I will be switching to oral B12 from injections"
Have they said this is a permanent change or a temporary one?
My understanding is that GPs cannot impose a major change in treatment on a patient unless a patient has given informed consent for the change.
I suppose the issue is whether or not the GP surgery/CCG/Health Board see changing from IM injections to oral tablets as a major change.
As I understand it (I'm not a scientist or medical professional)this means that the GP should have discussed the pros and cons of changing to oral treatment with you, made sure you understood the issues, with enough time to think about it and got your agreement before they changed your treatment.
I'm assuming you have not given informed consent to the change to oral treatment previously. I believe that consent to the change is supposed to be given in writing.
If you are unhappy with a change to oral treatment, it might be worth pointing out in any letter you write to GP that you have not given your informed consent for the change in treatment.
Keep a copy of the letter the GP sent to you, in a safe place.
It might be useful in case there is a need for formal complaint in future.
If the change to oral treatment is part of a study the GP surgery or CCG/Health Board for the area is taking part in, has this study got "ethical approval"?
You might want to ask if you are part of a study and if you are, you might want to ask further questions about whether the study has "ethical approval" from an ethics committee.
Most studies involving patients need ethical approval.
The letter just says in line with guidelines!! I've asked for the clinical reason and to find out about the blood tests. The letter is telling me I'll be getting an oral substitute! No mention of consent or discussion of treatment. I'll see what their response is! Not good at all.
Have you contacted them to ask politely which guidelines they are referring to?
Might be best to do this in a letter so you have proof you have raised the issue.
Keep a copy if you do.
You could contact your local CCG/Health Board and ask what guidelines on B12 treatment are currently being used in your area of UK. May be possible to track local guidelines down on the internet without contacting CCG etc.
You could submit a Freedom of Information request to CCG and maybe to GP surgery asking what guidelines are being used in your area. If you're unsure of how to do this put "Freedom of Information" into search box on CCG/GP surgery website.
Sometimes challenging GPs and asking questions can affect GP/patient relationship.
Weigh up the risks of upsetting GPs with the risks of what could happen if you don't get effective treatment.
As far as I know there are no national guidelines that recommend that PA patients are moved permanently onto oral tablets.
There was some guidance produced by BSH (British society of Haematologists) that suggested oral tablets could be used as a temporary measure in some cases during the pandemic.
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