So I received a text message last week to say they were cancelling my b12 injections and I would get a letter with more information. I have received that letter today which states new guidance has suggested that people with pernicious anaemia no longer need to have injections and they can just have high doses of oral supplements! Terrifying given that I was tried on oral supplements and these didn’t make any difference! Here’s the link to the guidance: pmj.bmj.com/content/79/930/218
My doctors have said that my care will be reviewed when routine care has been established again and that injections won’t automatically be reinstated.
Anyone had any discussions with their doctors about this? I’m so scared that I have finally got to a point where I’m feeling ok (I have injections every two months due to neurological issues) and this is going to really set my health back.
Thanks in advance x
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Kaceysimo
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Thanks, I’ve rang my doctors and I’m waiting to hear back from them. The receptionist was like ‘oh we have sent this out to all patients’ like it was ok and they were correct in doing so but to me every patient is different. I want to know when this guidance was published too I’ve never read it before and other guidance out there seems to contradict this.
All my letter said was I can buy tablets over the counter! Baffling to me! It should be on a prescription if they are wanting to change the dose from injections (which I do not want to allow as I will get worse).
They couldn’t even be bothered to ring me back just sent a text saying ‘The guidance is that a higher dose of oral B12 tablets will be sufficient to maintain B12 levels, which are available over the counter. We appreciate your frustration however these measures are being taken to maintain your safety in these difficult times.’
So I guess there’s nothing I can do. I knew this would be the case
Thanks yes I’m going to book an appointment I’m so upset with them, it’s just so rude and I appreciate these are unchartered waters but stopping medicines is just something I can’t comprehend
So, in effect. telling you to pay for your own B12 tablets. I think, within a short time, we will be paying for many of the pills/tablets/injections for other conditions we have as well.
So, in order to save money the suggestion is for the patient to pay. Some people may not have the werewithal to pay for their lifegiving replacement vitamins.
Surely, we will soon be having to pay for all of our necessary prescriptions.
1 Another paper which cites that one says: We conclude that oral vitamin B12 is an effective alternative to intramuscular vitamin B12 (except in patients presenting with severe neurological manifestations). pubmed.ncbi.nlm.nih.gov/302...
2 Leber's optic neuropathy patients explictily must not be given cyanocobalmin so, in direct contradiction to that paper, 1000 micrograms of cyanocobalamin is NOT suitable for all.
3 That paper was published in 2003. Why has the surgery been wasting money on injections for 17 years (in their estimation)?
4 Show me another area where a cohort of just 40 patients is regarded as sufficient to transform treatment for millions? Certainly wouldn't happen the other way around if there is a paper which demands inhjections rather than tablets. They would want a cohort of thousands.
This is exactly what I wanted to discuss as well there’s been so much guidance since 2003! I actually take other medications for nerve damage too and I think they’ve just done a blanket letter and just dismissed me when I’ve tried to speak to them.
I’m going to book a doctors appointment and speak to them that way. I’m so disgusted at them! My nana died today too so I can’t deal with having to sort this out as well as try and deal with grief!
I'm so sorry. Yes, you need someone to support you. It can be difficult enough at the best of times to disagree with medical people. And this is so very far from the best of times for you.
I am so sorry for the loss of your dear Nana. Everything is so unreal these days. It is hard. I tried to speak to my GP but the receptionist would not let me. I am going to write a letter. Stay safe. x
Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.
Have you also considered putting any concerns about treatment into a brief, polite letter to GP?
In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.
Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.
People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.
If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.
If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.
At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.
WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Symptoms Diary
I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
Thank you, I’m a member of the society but don’t know why I just hadn’t seen these links before but I’ve read through them now. I think as I’ve never had too many problems with my doctors before I always thought that everything was ok but to do this just shows me otherwise and I really need to go back to them (if they’ll actually speak to me!) many thanks though
Just be aware that some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to (after pandemic is over).
It’s a shame it has to be like that. I want to speak to one doctor in particular as he is really good but when I rang earlier they made excuses as to why it couldn’t be him. Will see if I can book in with him in the morning
Hi in your post it says the WHO classify b12 as an essential medicine, do you have a link that you could post so I can send this to the doctor please? Just trying to pull all the information together. Thank you
How bizarre, I can’t believe they’re sending that out! The link you sent us isn’t actually guidance and it isn’t new. At the bottom of the document it says copyright 2003. It also appears to refer to very small scale study of 50 people! I’ve read something similar before although I think that was an Australian study.
Yep it’s not right is it! I’ve rang my doctors again and still not sure if they’re going to ring me back. I shall be questioning what they have sent out, I assume they didn’t expect anyone to question it.
My injection was due 20th March , have 3 monthly , had it cancelled and was told to leave it a couple of weeks . Left it until now as cope very well between and with being able to sleep in and no work wasn’t feeling too bad . Appetite had started to go but other than that ok . Last night experienced vertigo so phoned surgery immediately when opened and got an appointment for tomorrow. Not ideal leaving it ,but glad I did as now getting what I need as said if symptomatic will give it !
So that was a waste of time, basically made out I was selfish and there are people dying of Covid19 and I was wasting doctors time having a conversation with them about my treatment when they just don’t have resources. They said we know patients can go 6 months without an injection with no problems and guidelines say that you’re fine having the higher dose tablets! I’m so disheartened
Thanks I spoke to them this morning, basically made out I was selfish and there are people dying of Covid19 and I was wasting doctors time having a conversation with them about my treatment when they just don’t have resources. They said we know patients can go 6 months without an injection with no problems and guidelines say that you’re fine having the higher dose tablets! I tried to tell them that it was essential medicine and I appreciate this is an unprecedented time but the doc was having none of it and just said I have other patients I need to deal with and didn’t want to have a theoretical conversation with me on how I might get poorly again by not having injections when the letter they sent me telling me to buy tablets was sufficient. I am literally speechless
That is exactly the line my surgery gave when they cancelled my 6 weekly injection due yesterday.
I followed up with a GP telephone consultation using PAS info. The GP showed a great deal of ignorance on the subject but would not budge. Would not prescribe me phials or needles either.
I have now ordered the goods online and will just have to self inject. Not something I relish but I want to ensure optimal health to help me fight corona virus should I contract it.
I found the advice previously given on this site on what to buy invaluable.
I've not tried cyanocobalamin tablets and I don't know if the small amount absorbed through the small bowel is more likely to be used effectively than the methylcobalamin tablets that I tried with little benefit before opting to self inject. It does seem unlikely as cyanocobalamin needs more processing. I'm sure like everyone else that self injects, I do not enjoy it and I would be more than happy if there were an alternative method of delivery which was as effective.
For people that manage on three monthly injections, this may be fine as if 1% is finding its way into the blood stream then over a 3 month period, the patient will be recieving 840ug of B12 which is not a large drop in dosage and may even be better as it is administered daily and so maybe more is used by my body but many people come here after finding three monthly injections are not adequate. I inject weekly but I know there are plenty on here that find they need to inject far more frequently.
Frankly though, can you imagine the treatment of cancer, changing on mass based on a single paper describing a test of 40 people on the treatment for varying lengths of time and which skips over the discussion of the symptoms.
I hope there are better ways to treat PA but like you, I'd be very worried to risk a return to the deteriorating health I was experiencing prior to self injecting.
I know! Sending that out I expect they think that a lot of people would just not read the ‘guidance’. the link was right at the top of the second page and I missed it the first time. It’s a worrying time as it is without this added worry about our treatment
There are probably better papers out there for making the argument for injections, but I was just looking through documents, looking for something else as it happens when I stumbled across this paper.
I've not had time to study it carefully but basically it is along the line of the other paper and is again trying to demonstrate that tablets are just as effective but this time they conclude that while some of the blood results look promising, "the hypothesis of noninferiority of oral treatment had to be rejected."
They don't know why and speculate that it might possibly be down to the type of cobalamin they administister in each case but whatever the reason, they conclude that there is a difference which is very much in line with most people experiences.
...and this guidance is from 2017...even newer than your surgery's!
Well, well, well. Research in 2009 revealed that 40 patients with B12 deficiency, 10 of whom I believe had concrete PA diagnoses (Schilling and/or IFab), were able to cope on tablets for periods of either 18/15/9/6/3 months, without dropping into the low-range area. And your practice are comfortable that this is evidence enough to support their decision to stop your treatment indefinitely ?
Better to have said "Apologies: we don't have the time, resources, PPE at this point to administer your injections safely. We can however supply you with the B12 and equipment on prescription until circumstances improve."
..... now that, I could swallow !
Why have your practice been giving any B12 injections at all since 2009, if they really believe this research to be the last word in effective treatment of B12 deficiency ?
Just send them all off to Holland and Barrett's, why not !
For a "best practice" approach to the current problems, I would have a look at a post from yesterday: "Picking up where I left off", from distractonaught . Galadriel1 responded here with a link to a very useful youtube video from a GP, demonstrating self-injection with B12. Shame he's not your doctor.
Finally, I'm very sorry to hear about your nana.
You're having to cope with a lot right now - take very good care and keep in touch.
Thank you very much for this! I have found the post and watched the video, Gosh yes I wish he was my GP, what a superstar! I have ordered some needles, hopefully they are the right ones, looks like this is the new normal for me but would rather be well and not tied to when the doctors are ‘willing’ to give me an injection. When I feel up to it I will gather up all the evidence and information I have and compose a letter to them. Too upset at the moment and I don’t want that to cloud the point I’m trying to get across. Thanks again!
When I have letters like that to write, I write the first one just to get it out of my system, then leave it a day or two and read it again. I generally think "You really went a bit bonkers" and rewrite. Do the same again until you can read it back the next day and think "Now you sound reasonably sane, if not entirely reasonable" - and usually happy with the third version !
Anything you need re advice, a sounding board, techniques, hints and tips etc; just ask. You will find kindness here.
My Daughter had her B12 injection today at the doctors. The surgery rang her yesterday to ask if she’d had any coronavirus symptoms & because she hadn’t they done it for her. Mine is due on the 13th May. They tell you not to touch anything, they open the doors & everything.
I had an injection on 27th March and that’s what happened that time but for some reason they won’t do this anymore to stop and I quote the doctor ‘100’s of people attending the surgery’ ridiculous no one is allowed to go for other appointments so I’m sure if it was just the people attending for their injections there’s not that much foot traffic
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