I had a message left on my answer phone from the GP saying he wanted to speak to me regarding a change in medication. As I only get B12 injections prescribed I am assuming that he wants to change from injections to oral as this had been suggested before. Has anyone else had this from their GP? I would not be happy to change to oral B12 as I have been on injections for over 10yrs and have been very well.
Changing to oral?: I had a message left... - Pernicious Anaemi...
Changing to oral?
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lesbud1
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If you have Pernicious Anaemia , I would refuse to change from injections to oral , even a very high dose . The GP might try to convince you that a research project has proven to show that oral will woork . A scientist member of PAS looked into this , and said that it was poorly conducted research . You could ask about this research , and look it up . GPs are trying everything possible to cut down the number of nurses they have to pay out of their NHS allowance . They are trying their utmost .
Some P.A. patients find that sub-lingual and nose sprays can help between injections , but not all . I’ve been down that route , and tried every possibility under the sun ( I’m a diagnosed Pernicious Anaemia patient with positive Intrinsic Factor antibodies ) Nothing helps me but a weekly injection . So be very wary . Best wishes .
thanks. I had a biopsy taken originally but they didn't find antibodies but the consultant said they don't always find them and that he felt I had PA. The GP had written to him regarding oral and he had replied telling them this but that he would leave it up to them to decide whether to change to oral treatment. I am not happy to have oral treatment as I have been good on my 2 monthly injections for years. I am able to give myself the injection so do not need to visit the nurse. I therefore only cost the practice the price of the B12 injections and we know that this is cheap.
Yes , that’s true that you can have P.A. and the antibodies don’t show . But your GP might seize on that and say you don’t have P.A. A GP does not have to follow a consultants recommendations .
Hi,
Apologies for a rushed reply.
I suggest after appointment that you put any concerns in writing to GP. Keep a copy.
See link below.
b12deficiency.info/writing-...
More about oral B12
Note on oral treatment - from B12 Institute (Netherlands)
b12-institute.nl/caution-no...
Search online for "Cochrane Review Oral B12 treatment" and read the reports conclusions.
PAS news item on Oral B12 from 2020.
pernicious-anaemia-society....
The comments under PAS article are interesting to read.
"phone from the GP saying he wanted to speak to me regarding a change in medication."
Find out the exact reasons why the GP wants to change your medication.
Have you been in touch with PAS?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Informed Consent
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 with patient, made sure patient understands the issues and got patient's agreement before treatment changed.
I'm assuming informed consent to a change to oral treatment has not been given previously.
Of course GPs might argue that changing from injections to oral is not a major change in treatment.
If unhappy with a change to oral treatment, it might be worth pointing out in any letter to GP that informed consent has not been given.
If the change to oral treatment is part of a study the GP surgery or ICB/Health Board for the area is taking part in, has this study got "ethical approval"?
You might want to ask ask if changing to oral treatment is part of a study and if it is 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.
BMJ article on ethical approval from 2009
Might be worth asking if the GP surgery is reviewing all patients on B12 injections.
If yes, why?
If no, why does GP want to change you in particular to oral
There are reviews of patients on B12 injections across UK.
My feeling is that it is a money saving exercise. They may try to convince you that it is for your own benefit. If they say research has shown that it is just as effective as B12 injections, ask them for the name of the piece of research and who it was written by.
Reviews of patients on b12 injections
Article about the review process for patients receiving B12 injections for a Scottish Health Board.
guidelinesinpractice.co.uk/...
Here's another review article
nhslguidelines.scot.nhs.uk/...
It also happens in rest of UK
westsuffolkccg.nhs.uk/wp-co...
Have a look at the article below which discusses patients in UK who self inject B12 and their reasons for doing so.
Patient safety, self-injection, and B12 deficiency: a UK cross-sectional survey
Natasha Tyler, Alexander Hodkinson, Naeem Ahlam, Sally Giles, Andrew Zhou and Maria Panagioti
British Journal of General Practice 2022; 72 (725): e891-e898. DOI: doi.org/10.3399/BJGP.2021.0711
I agree with wedgewood that if you have PA, worth refusing the change if you're unhappy about it.
I suggest putting the refusal in writing to GP/practice manager and consider including
1) a request that this is filed with medical notes
2) reasons for your refusal
It's possible that GPs won't react well to an outright refusal so be prepared for relationship with GP to come under strain.
Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.
healthunlocked.com/pasoc/po...
You may need to ask direct questions and put GP on the spot (as nicely as possible)...don't let them get away with vague answers.
Sorry you have to consider how to deal with your GP giving you bad medical advice. That is wrong and you are not. I see it as an abuse of power in the relationship.
thanks. I feel under some pressure as I don't like conflict at anytime, least of all with someone who has the power.
Unfortunately medical gaslighting and abuses of power are rife among the medical community.
I think we've all been brainwashed into assuming 'Doctor knows best', but times have changed. And very often they don't. And if they're wrong and you become sick, you will never prove it. Never. They make sure of that.
Yes many attempts.
One really awful letter sent put to everyone on b12 Injections.
A blood form enclosed.
To test b12 levels!
Also and Intrinsic factor antibody test
If levels in range and a negative IFA test Injections will be stopped as damaging if not needed .
I was beyond furious .
What utter ignorance .
I booked a gp consult and also wrote in .
As I'd had a fight to retain my 2 weekly b12 prescription a few months earlier the new partner had asked a neurologist by email for advice.
Not one of the 3 that I'd seen!! 😕
Fortunately this neurologist 'santioned ' my regime to continue .
So the Gp told me to disregard the letter and it shouldn't have been sent to me.
I've had nurses refuse to give it.
A Gp just cancelling my repeat prescription without a word.
Too many occasions to go into.
Early on a 'sit in' as refused to leave after a nurse refused to inject me.
Too ill to move actually.
A long wait.
Saw / met chosen gp by chance as thought it her calling me .
It was infact the practice Manager but from behind.
All I saw was the gps door open.
She didn't turn me away as clearly saw how ill I was .
Started every other day b12 immediately
Gps refuse repeat prescription
One Gp out of 6 has supported me against alot of peer pressure .
Why as she has seen me the most .
Had a good 'run' recently regarding an unchallenged prescription.
However my gp surgery is closing.
Letter arrived saying in one month .
I got in my repeat prescription early and chosen Gp issued it .
Also a blood form.
I imagine many struggles ahead again.
Groan.
So challenge this .
You do not have to have a PA formal diagnosis to retain your prescription.
The PA tests not reliable enough.
Symptoms and clinical response.
In the patients best interest anything can be prescribed.
Also 'off licence '
In my case nothing else found to date to treat.
Also once on b12 injections and they are needed .
You cannot do without them as your body dependant on high levels of b12 now to work.
Hope you get them back asap
thank you so much. I am horrified to hear of your treatment. I think some people have forgotten this is supposed to be a caring profession. I actually buy more B12 and inject every month as 2 monthly is not enough but don't wish to just buy privately as I am getting old and can see a time my GP would say I don't need B12! I get asked to come for yearly blood tests and although I am happy to have my thyroid levels taken I am not happy to have the B12 levels done as we all know after injections it will be at a high level. That is the point of treatment so I am expecting that conversation soon too.
P.sTrue gps do not have to follow consultants instructions .
They usually do as asked in the first place .
They also then have 'their back covered '
Even if do not agree.
In my case 2 different neurologists have 'santioned ' b12 regime.
2 gps uut of 8 still refuses to issue prescription.
The partner does??
They would look pretty stupid to ignore consultant advice if nothing else to treat and can see clinical response.
The consultants advise is asked for and if not acted on plain arrogance
Arrogance often the problem.
Through lack of knowledge .
Open minded gps needed .
We after all never stop learning
So if one gp ignores their seniors advice move onto the next .
All such hard work and upsetting 😡 but what we are all still facing .
Do not let your treatment be changed.
I changed to an oral spray several years ago, for approximately 6 months and that had a bad result for me.
My feet now have peripheral neuropathy which seems to be permanent , and my balance is just about non existent. I am back on a weekly injection regime and this seems to have stopped any further degeneration, but not repaired the degeneration.
Look after yourself.
Hi Lesbud
Lots of good advice here of why and how to say “No”.
In time truth will be out and those of us who are living and surviving PA will be vindicated. Hang in there keep self injecting and keep a journal of treatment, symptoms and activity.
It may be worth getting your folic acid, vitaminD, and iron tested as you don’t seem very well cared for by your GP practice.
Remember GPs don’t like sticking their neck out so by questioning in writing, ensuring they take responsibility for their actions (you put it in writing) you are move likely to get them ‘on side” albeit for their self preservation rather than yours. In my experience when they do not have 'their back covered ' they take the path of least resistance. So self inject and be demanding!
I wish you well and hope you can get a positive outcome to a situation that shouldn’t have happened.
thank you. yes I had private bloods done some years back and found I was very close to being deficient in vit D and often folate deficient too. Usually get asked if I am an alcoholic for that one, and no I'm not, although the medical profession could drive me to drink. My thyroid is another issue. I was over active and on thyroxine over 20yrs ago after having the radioiodine treatment. I had a bad reaction to thyroxine and another GP took me off thyroxine saying my bloods were normal. since then I have extraordinary high antibodies but they still keep telling me my bloods are within normal range! I often wonder how many people being let down by their GPs and why there seems to be no comeback as we are talking about health and life decisions.
Are you active on the Thyroid UK forum on HU?
There's lots of supportive people there.
Hi Sleepybunny. Yes but the GP is the gatekeeper so no way forward.
If you have time and the energy, search online for the local guidelines for your ICB/Health Board on
1) diagnosis and treatment of thyroid conditions
2) referral to endocrinologist/other specialist dealing with thyroid issues
If you can't find them online, try submitting a FOI (Freedom of Information) request to your ICB/Health Board asking which guidelines on thyroid disease diagnosis and treatment are used locally and for a link to or copy of them.
NICE guidelines Thyroid Disease
thank you. Will have a look.
Yes my GP has tried to stop my 3 monthly b12 injections which I've been having for 15 years not diet related. I've written letters they dont reply to and had heated f to f appointments when told I can take b12 tablets. I'm still getting b12 injections but I feel I'm left in limbo not knowing what they will do. But I will always fight their decision to go on tablets. Dont give up and get all info you can for your GP for reasons you need your injections. Good luck.
Might be some useful info for you in link thread about Patient Safety below.
healthunlocked.com/pasoc/po...
Link to a thread started by someone with neurological symptoms where I left detailed replies.
Blog post about B12 injections being stopped and some helpful suggestions ( from 2017).
b12deficiency.info/are-your...
If you have time, read the comments below the article. Some comments are quite recent.
To take u off b12 injections is puzzling. I say this because ones first thought is costs to nhs. But I live in the United States and I pay just about for everything for instance I pay 1300 a month for coverage and recently had a mri which cost me 1500 dollars and the b12 is free. So I know it costs bugger all. I would find thr true cost to the nhs before confronting and also be aware there may be other new findings. In that latter case please report back. Cheers for now
I don't know if you've read this but it's a blog post about a UK area where the treatment algorithm seems to put most people on oral B12.
Many doctors have been persuaded by faulty research advocating replacing B12 injections with oral administration of B12. In the article "The Many Faces of Cobalamin (Vitamin B12) Deficiency", from the peer-reviewed medical journal "Mayo Clinic Proceedings", the authors reviewed the literature advocating oral instead of injected B12, and found the underlying research to be flawed.
If you were to print this article and provide it to your doctor, with the review of oral-administration of B12 clearly marked so that it is easy to find, I think there is a good chance the article will convince your doctor that a switch to oral B12 is ill-advised.
You can find the article here:
ncbi.nlm.nih.gov/pmc/articl...
Go to the upper-left corner and click on "PDF" for a version that is appropriate for printing.
Hi, this happened to me during lockdown. My GP said they were having to stop nonessential treatment and that high dose tablet form would tide me over until I could start seeing the nurses in person again. Tried to explain I had been diagnosed with pernicious anaemia in my 20s after being very ill because of it, and now I’m my 40s I know for sure injections are the only thing that help. This was ignored, and within 6 weeks my mouth and tongue were so covered with ulcers because of low b12 I could hardly drink, and was on a liquid diet whilst it was at its worst. Super fatigued too. They tried to treat the mouth ulcer symptoms, but only after it recurred again twice over the next few weeks and I sent lots of photos luckily they agreed to restart my injections. For a simple, cheap medication it provides life changing results- none of us should have to manage without it. Good luck xx
Went for my B12 injection yesterday and was told that this would be my last one as they were starting "a six month trial" of oral B12. After six months they will do a blood test to check my levels. I told the poor nurse - who was the one who was having to inform her patients - that it wouldn't work for me. I am tired of arguing with doctors who want to spend money on useless tests so they can tell me I have plenty of B12. I have tested several times to be negative for IF antibodies and I am sure they are using this as a reason (as well as cost). The nurse could only advise that after trying I talk to the gp. She also told me that many beauticians are now offering B12 injections. I asked her that going down that route was going to alter my B12 and that the doctors would have another reason that oral was working for me because my blood tests would be skewed. So I now have the choice of suffering for at least six months to see what my bloods would be or giving in and going SI.
Do they mean a trial just for you? Or of all B12 injection recipients at the surgery (or larger area).
If they mean any form of multi-patient trial, then it must be registered as a trial and formally approved.
If it is just you, setting the time as 6 months is wholly arbitrary. It doesn't appear to allow you to return and ask to return to injections if (when?) you feel worse. Reprehensible approach.
Thanks for prompt reply. I assumed it was a trial for the whole area. How do I find out please?
I think you should ask them. Whether by phone or email or face to face - really doesn't matter.
Or check the registered trials - start here and keep going! Might take a while.
hra.nhs.uk/planning-and-imp...
If it is a true trial, then they require your permission for you to be enrolled, and they must provide you with full documentation, forms to sign, etc.
If it isn't a formal trial, they have broken ethical rules in leaving you thinking it is.
(I suspect it isn't a formal trial. Or they are breaking the rules.)
After having the weekend to calm down I have re-read the letter they gave me which includes the paragraphs:-
"We are pleased to inform your latest Vitamin B12 blood tests show your levels are normal.
Previous blood tests also confirm your gut should be able to absorb Vitamin B12 from a balanced diet."
So it looks like they are targeting individuals who test negative for IF antibodies (which I do), but are prepared to supply me with oral B12 for a trial and then another blood test in 6 months. After that time I do not know what will happen. The rest of the letter tells me that most patients do not require supplementation unless they are vegan.
Do you know if oral B12 shows in the bloodstream and therefore will give me "normal" results as injections do? I am trying to find this out but as yet have not conclusively done so.
Many thanks once again for your help.
Others know far more about B12 than do I!
But oral B12 can only show in a test if it is getting absorbed.
Getting sufficient from diet alone is substantially different to being able to absorb sufficient from oral B12 supplements. Even some of the lowest dose B12 supplements, seen as appropriate for vegans, are 50 micrograms. When dietary requirements are often quoted as 5 micrograms or less.
Only a positive IF antibody test means anything. A negative test does not mean you don't have PA.
Consider the meaning of "normal".
This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.
The normal range: it is not normal and it is not a range
helvella.blogspot.com/p/the...
Thank you once again. So 50 mg are considered appropriate for vegans. I logged onto my online prescription service to find that from 9th June I can order cyanovit-B12 1000microgram - one daily. They are obviously trying to get my gut to absorb a few mg to keep me alive. Isn't life great.
Just a note thats 50mcg (micrograms) not 50mg(milligrams).
I'm vegan, but I wouldnt rely on (or find appropriate) taking B12 at 50mcg once a day (although I'm aware the vegan society supplement is only 25mcg). 100mcg is a safer baseline. The reasoning behind this is based on the known absorption mechanisms. To ensure meeting the RDA of 2.5mcg with a single daily dose requires at least 100mcg since it works out as:
Passive Absorption at 1% = 1mcg
Intrinsic Factor = 1.5mcg (saturation every 3-4 hours)
Which gives you 2.5mcg total. Because I prefer to err on the side caution with something that cannot be overdosed I take 100mcg 3xday at meals to give intrinsic factor 3 good chances to take up what it needs. This is probably not necessary but my B12 philosophy is now better safe than sorry.
Sorry for the typo - I even checked it before I posted. I am not vegan. If I remember correctly when first diagnosed my B12 bloods were 134.
Will just have to wait and see if I absorb enough from 1000mcg daily. I might see if I can divide the tablet. I have little confidence in them. I have tried high dose sub-lingual in the past and noticed no improvement of symptoms.
Some find oral tablets or sublingual useful but from reading their experiences here , it seems that many PA patients find that no amount of tablets alleviates symptoms, or alleviates them adequately. 1000mcg is really the minimum I woud think for treating deficiency, I don't have PA but I was taking betwen 5k to 10k at the very start of treatment and even with that, I ended up finding injections more effective, so it depends on severity of the deficiency I think.
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