Concerning advice about switch to oral B12

[Littlelodge123]

I was searching for something else when I came across this article from a GP practice in Devon area rms.cornwall.nhs.uk/content...

This is deeply worrying. Perhaps something for PAS to take up…

[helvella]

To my way of thinking, that approach constitutes a trial.

But it has not been registered as a trial. Has not had ethics committee (and whatever else) approval.

Does not provides its subjects with full information, not even that they are taking part in a trial.

Forces entry to the trial with no option.

[Littlelodge123 in reply to helvella]

I think the whole tone was forceful and frankly unethical. It sounded as if clinicians were irritated with PA patients . It also sounded misguided indicating that patients were fixed one B12 is replete. I’m also not sure if the science around ‘50% of b12 is retained by the liver for later use’ or words to that effect. Even if that were true a PA sufferer can’t use it from that source as far as I understand.

[Thalia56 in reply to Littlelodge123]

Sorry for coming back with more comments when I've already posted a screed below, but, like you, the tone I thought I detected in the paper is part of my problem with it. It reads to me as if the author thinks that patients don't understand their illness (and that pesky internet also gets blamed), while they betray their own lack of knowledge.

It rather feels to me as if it's intended to lay the groundwork for a longer-term solution, which is concerning.

[shaws in reply to Littlelodge123]

If one of the 'experts' develop another autoimmune disease they may change their minds of how 'they themselves' would like to be treated so that all clinical symptoms are resolved.

If not the patient may develop another autoimmune condition .

My Mother - for one example - had been diagnosed with Pernicous Anaemia and for a number of years received an injection about every 2 or 3 weeks.

A few years later she was then told that 'her blood test was fine and she needed no more B12 injections'.

Both my sister and myself thought that was 'good' but unfortunately it was a disaster as my mother .developed and died due to developing cancer in her stomach!!!

[Jo55]

reading this, to me it looks like it was sent out at the beginning of COVID. If so, I wonder whether they have put people back on to injections now

[FlipperTD in reply to Jo55]

Oh dear!

Suspicious scientist, rather than compliant medic.

It certainly reads more like a discussion document for a 'Cunning Plan' that probably shouldn't have been made available for the like of 'us' to get at!

There has been activity to convert more folks on injections to oral tabs, and that goes back a long time before Covid. However, if you get something going on that involves recruiting large numbers of patients for a change in their treatment, that does sound like a clinical trial, and as such needs ethical approval [unless something's changed recently, which I doubt.]

I'd love to be a fly on the wall for the discussions that will be taking place at the moment. It will probably end up as a witch-hunt, resulting in loading blame onto the innocents and protecting the guilty.

Good luck on this one. I don't necessarily disagree with any attempts to reduce the numbers of B12-injected folks, as it's likely that there are plenty on life-long injections who really don't need them, but that's an argument to have elsewhere!

[Littlelodge123 in reply to FlipperTD]

completely agree. I’m pretty sure not everyone needs injections and I do think this wasn’t intended for wider public consumption!

[Nackapan in reply to FlipperTD]

On an earlier post o shred a letter sent to a patients on b12 injections ag our surgery.Also sent s blood form

It said all need to have levels of b12 tested and an IFAB test.

If b12 levels are 'normal and IFAB negative their b1d injections wil ve stopped ax high levels ard not good for your health.

OTC b12 tablets can be bought if required.

Words to thst effect.

I booked a telephone consult.

Only to be told very quickly bh the gp partner it shouldn't have been sent to me ????

To ignore it .

I've nevef had a IFAB test.

B12 levels ovef 2000.

It's because 2 neurologists have 'sanctioned ' the 2 weekly b12 I jectuknx prescribed.

I assume gp back covered.

Also k confront them every time ax ghrh fdont seem to have sn alternative treatment or diagnosis .

I think its happening everywhere and in theory csn make some sense.

However ax the patient its cruel.

Noone would choose to have these injections long term unless needed.

They just do jot understand the reasons why one can't utilise the b12 unless ar ridiculously high levels.

[Littlelodge123 in reply to Nackapan]

I am positive for IFAB and PCAB and have a PA diagnosis so in a weird way I’m lucky….

[wedgewood]

Until we have a more foolproof test for Pernicious Anaemia ( the Intrinsic Factor Antibodies test) I think it’s quite dangerous to start forcing B12. deficient patients on to B12 tablets , who are currently on injections There are probably patients out there who are unnecessarily receiving injections who could be treated with tablets instead . But so many doctors believe that a negative IFAB test means no pernicious anaemia ! It’s a step too far without a competent test .

[Nackapan in reply to wedgewood]

Also regular b12 injections started for a proved Low b12 which is not caused temporarily by a medication or lack of it eaten/ dietary.The body gets used to high levels injected and the already faulty mechanism gets overridden.

Stops ,is broken.

So one is then dependant on b12 injections.

An absorbtion problem . Processing problem may exist that isn't PA.

If a test cxnt be accurate for 50% of sufferers whag do we do??

Even when a person has 3 or 4 ifab tests and one ix positive the Gps don't believe it !!

There is still thus myth that you just get a bit tired without your b12 injections.

I was a guinea pig for a truly ocb12 tablets . Only to try and get x longer gsp between 2 weekly injections. At that stage I made it s few times to 3 weeks.

Really set me back.

Was willing it to work.

We don't get prizes for thd fewer injections needed.

Gps do!!

[Thalia56]

I'm shocked by this. Treating this as a trial without going through the necessary steps is deeply concerning and should surely be picked up by a body with oversight.

What worries me even more is the lack of understanding of Pernicious Anaemia displayed in the paper. The author appears to have the same understanding as the GP who diagnosed me, believing that one has to be anaemic to have PA, otherwise it's just B12 deficiency.

And then there's the claim about modern diets lacking B12, with no supporting evidence other than that low B12 is more common than it used to be! It's contrary to the NHS's own page on PA / B12D. I don't overlook that more people are vegetarian and vegan now than used to be the case, but if you're going to change treatment of patients who potentially have a lifelong condition, it better be backed up by research.

It appals me that people with so little knowledge have taken it on themselves to take these decisions and actions. I know the terrible pressure under which healthcare staff are operating still, and I don't wish to minimise that. It still scares me, however, that there are no scruples on show about making policy decisions that affect people's health, perhaps permanently, when the people making the recommendations don't understand the basics of the illness,

My own surgery (in a different part of the country) wrote to me in April 2020 telling me that B12 injections would be less frequent as they wished to minimise in-person contact. I understood the reasons, though even then I wondered if it was a narrow end of the wedge type of thing - if patients appeared to cope, perhaps they'd take that timing as usual from now on. I can't say whether or not they have as I now self-inject and haven't gone back to them for an injection since.

Sorry, I know this turned into a bit of a rant! Thanks for sharing this, and well done on finding it. I'm sure it wasn't intended to be made public.

[Nackapan in reply to Thalia56]

Yrs we all need a rant! I managed to eventually get my Gp who had alot of opposition to prescribe thd ampoules for sc injection at home

Shed initially said no

I'd actually bought some .

Then had s phone call out of the blue overturning the decision.

I still buy the needles and syringes .

She never stopped the 2 weekly injections in theory but knew with covid snd nurses it would be far more expensive .

Also there wax z letter ftom z neurologist which initially was ignored as not licensed for sc but wouldn't teach me IM.

[wedgewood in reply to Nackapan]

It’s CRAZY that B12 injections are not licensed for subcutaneous injection.Patients inject themselves with insulin by that method , and are encouraged to do so by their GPs

The packets of B12 ampoules that we get from German online pharmacies state clearly that they can be injected by the sub-cutaneous method . We know that the Germans are not complete idiots when it comes to matters medicinal . We also hear from members on this forum that sub-cut works well . Then patients could self-inject by that method ,nand we wouldn’t get this preposterous conniving by GPs to force tablets on them . For it is the cost of nurses in the practice that they want to avoid , as they have to pay nurses out of the allowance they get .

[Nackapan in reply to wedgewood]

Yes it is crazy.Drugs are prescribrd off licence all of the time after all!

It may take time to get it licenced for sc but not even on the agenda??

I've been doing it for nearly 3 years now.

Have IM as well to keep a 'presence ' also in the hope IM will stay longer in my system..

Darnt change a thing

Last one actually got me a face to face with chosen Gp as no nurses at all at present at my surgery.

She prescribed thd b12 for sc.

She asked about it .

I was reassured to see it on the German boxes

[Thalia56 in reply to Nackapan]

I'm sorry you've had to fight so hard for treatment, though fantastic that your GP prescribes the ampoules now. I daren't even broach the subject with my GP because she's already told me that B12 patients imagine symptoms on the run-up to their three-monthly injection.

The line being drawn between SC and IM in this country is so weird. As Wedgewood says below, the Germans wouldn't do it if it didn't work.

[Pickle500]

Thanks for sharing. The ignorance I found online, from GPs and medics, was one of the reasons I tried to self medicate my deficiency.

I believe this instruction is around 2020/21 when the pandemic was in full thrust. Most surgeries were looking for ways to keep their staff safe from exposure to Covid and its why it took me 10 days to get a blood test because my surgery were only doing vaccines and no bloods.

Now, the landscape has changed. People will be lucky to speak to a GP in 10 days, more like one month.

Times are hard all around. But this literature stating that 50% sits in the liver shows that the medical community do not and probably will not understand B12 injections as a therapeutic approach to recovery. They only go by numbers and ignore that humans are complex biological entities.

They do not study nutrition and so do not understand why we need more. In the current climate, I think we can only hope that these pressures force them to offer OTC B12 from dispensing pharmacies.

We can hope.

[Sleepybunny]

Hi,

A few links about oral treatment and B12 deficiency

Note on oral treatment - B12 Institute (Netherlands)

b12-institute.nl/caution-no...

Worth searching online for "Cochrane review Oral B12 treatment" which said that evidence that oral treatment was as good as IM injections was of low or even very low quality.

My understanding is that GPs cannot impose a major change in treatment unless a patient has given informed consent for the 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, made sure patient understands the issues and have got patient's agreement before treatment changed.

Of course GPs could argue that a change from B12 injections to oral treatment is not a major change.

If people are unhappy with a change to oral B12 treatment, might be worth pointing out in any letter to GP that informed consent for the change in treatment has not been given (assuming consent has not been given in past).

I suggest people keep copies of any letters GP surgery sends on this issue.

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, worth finding out if study has "ethical approval".

People might want to ask if they are part of a study and if they are, they might want to ask further questions about whether the study has "ethical approval" from an ethics committee.

BMJ article on ethical approval from 2009

bmj.com/content/338/bmj.b450

Link to thread I started on Patient Safety. It has lots of useful links for people who have had difficult health experiences.

Personally I think changing someone from b12 injections to oral tablets could be a patient safety issue.

healthunlocked.com/pasoc/po...

[Littlelodge123 in reply to Sleepybunny]

very helpful links and overview. Thanks.

[Cherylclaire Forum Support]

A thankfully still rare display of ignorance of B12 deficiency combined with underhandedness.

Dangerous, irresponsible and devoid of respect for patients with chronic conditions.