I have had a text from my surgery saying there is no evidence to say that B12 injections are any better than tablets . Then asked if I wanted to trial the tablets to which I answered No . But now I'm worried they will try anyway . I've been on B12 injections for around 25 years and have them 10 weekly ( which I'm finding are not lasting now ) I was switched from tablets as they weren't really raising my B12 very much , so the Dr said " oh you don't absorb them " hence why the injections started . Has anyone else had this text ( uk ) they were going on about appointments?? Blimey if they bothered to ask I'm happy to do my own , I have in past .
Plus where can I get them ? I tried Amazon de but they only seem to sell the clear one ( sorry forget name ) .
Please if anyone can advise ,as I feel awful when injection due . So I'm understandably anxious
Thanks Gill
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Gillyhe
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High dose oral will never be able to raise B12 levels as quickly as injections - which is important in patients with severe B12 deficiency because of the risk of permanent nerve damage if the deficiency isn't treated promptly.
Whilst there is evidence to show that high dose oral can be effective for in maintaining B12 levels in patients with an absorption problem and this works for significant numbers of patients, there is also a lot of evidence that this doesn't work for everyone .
A statement that there is no evidence that injections are better than tablets is at best inaccurate.
When undertaking trials GPs are obliged to give patients the evidence they need to make an informed decision. I doubt that a text would count as providing information needed to make an informed decision anyway - its not a suitable measn of communication in my personal opinion for this purpose. A text making a claim that is manifestly untrue would definitely be in contravention of this requirement.
If you can bear to I would contact the practice administrator and point this out.
Dear Gillian,We are contacting you regarding your b12 injections. It has shown that there is no clinical evidence to say injections work better than tablets. Current evidence suggests the tablet will work just as well within the body, which will continue to absorb the B12 just as it does from the injection. Many people can maintain their levels just as well with oral replacement. Reducing the number of patients that require B12 injections can help increase our treatment room capacity by 12 hours a week. I sent an econsult stating my concerns and even offering to administer myself .
They appear to be confusing absorption from gut with absorption by cells.
I don't think the argument is ever that B12 in the bloodstream from a tablet is different to it when injected. The issue is getting it from the tablet into the bloodstream.
And their words seem to show a staggering lack of understanding.
Although some of us can get it into the blood from tablets etc, but still need injections to get it into the cells effectively - super-saturating, perhaps.
I'm going to read this and save it for the future . As this will happen again I'm sure . But I have a reprieve for now , as I received a text after my econsult saying , don't worry carry on as you are . It stresses me so much as I know tablets do not work . This is all about appointments and saving them . Don't try to pull the wool over our eyes that's what makes me cross
Very useful link for all those being switched without consultation. Thanks, Gambit.
It would be more interesting still if the research had included symptom response to trialled treatment, spanning at least the trial period. The blood testing, as is so often spoken about here, cannot alone give the full picture. For us, the symptoms are the main concern. Can we get rid of them all, control them the best way we can, or do we have to endure them ? How will we find the answer, unless trials include them ?
Chasing after symptom solutions by GPs sending patients to consultant after consultant will end up with a long elimination list - but never even quite manages to get as far as a B12 deficiency connection, never mind PA.
I would want to see chapter and verse of the Evidence “that tablets will work just as well within the body as they do from the injection .” That is so untrue for the majority of P.A.B12 deficient patients . I don’t know of one diagnosed Pernicious Anaemia patient that can manage on tablets . It is just a measure that will save the surgery from employing an extra nurse , who is paid out of the sum that the NHS awards the surgery to run the practice.( according to how many patients they have . ) When the expenses of running the surgery are paid , then the remaining money gets divided up between the doctors . So they don’t want to pay an extra nurse as that will affect their salary .
"Then asked if I wanted to trial the tablets to which I answered No . But now I'm worried they will try anyway "
Maybe you could write to them stating that you do not give your consent to be treated with oral B12 tablets. Maybe include a request to file letter with medical records and keep a copy for yourself as proof issue has been raised. By answering no you have already made this clear and I think GP surgery should have made a note of your refusal but putting it in a letter might mean it's harder for GP surgery to ignore your refusal.
Patient Association have an article on Informed Consent which I think is worth reading.
Did your GP surgery seek to discuss the pros and cons of changing to oral tablets with you.
If no then it's possible that GP surgery has not sought your informed consent. Using phrases such as "informed consent" in any discussions with GP surgery might be useful.
Being an assertive patient can sometimes lead to a deterioration in GP/patient relationship.
When you have time and energy, have a look at my recent thread
" Is this the tip of the iceberg? NICE B12 deficiency guideline."
This should show an article that compares treatment with oral B12 with B12 injections. I found it useful to read the conclusions.
2) "Survey UK self injection B12"
This should show a survey of people who self inject B12 in UK.
I found it interesting to read their reasons for self injecting.
There are forum members who manage their B12 deficiency with high dose oral tablets.
I can't remember any people with non-dietary B12 deficiency I've talked to face to face who could manage purely on oral B12 tablets...they didn't work for me either.
Oral B12 can raise the levels of B12 in the blood and I think that this is sometimes seen as effective treatment by GPs.
To my mind an effective treatment is one that leads to improvement in symptoms...my symptoms only showed real improvement when I got B12 injections.
Self Treatment
Many UK forum members turn to treating themselves when NHS treatment is not enough.
Some get extra B12 injections privately, some try high dose oral B12 (1000mcg or higher) but this doesn't work for some and some as a last resort try self injection (SI).
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
It's not something that can be summed up in a text message.
There is a wealth of evidence that injections work. There is enough evidence to suggest that high dose oral B12 CAN work in SOME cases, but certainly not all cases.
If they are simply trying to reduce the workload on the surgery staff, perhaps they should say so and be done with it.
If you look back at the post I'm steaming I've had written on my records that some dong head doctor has said that I am having my injections too frequently and that they should either be every 12 weeks or tablets as I gave no record of a diagnosis of PA. I'm waiting for the phone call or letter.
It's actually the opposite, in the case of PA, the evidence that oral supplementation is as effective as injections to manage symptoms is thin and fairly inconclusive. It works for some but not all.
WiscGuy had a good response on the topic of oral vs injections a little while back. See:
You don’t absorb them! Isn’t that a massive clue 🙈.. I started injecting myself! I was most likely deficient! ( NICE guidelines) I asked for B12 injections and was refused by my GP! The lovely people on here will direct you on what to order and help you write a letter of complaint! Good luck 🤞
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