My GP has stopped my B12 injections altogether and is saying it has nothing to do with the pandemic, that this was going to happen anyway. I was having injections every 8 weeks, due to pernicious anaemia. Intrinsic factor antibody test was positive when diagnosed 2 and a half years ago. Being told that there is 'new evidence' to suggest we do not need injections if we take 1mg tablets daily. I have sent her the advice from PAS online as well as the recent BSH document and she just keeps saying 'I know it's confusing but there is new advice that the tablets will work.' The most she has agreed to is a blood test in 8 weeks time, by which time I'll be 16 weeks overdue my injection! I've read on PAS that blood tests aren't relevant after injections have started? but she argued that if it's in my bloodstream, it's being absorbed? Please help, any advice welcome... very confused and distressed. She keeps saying she doesn't want to give me injections I don't need... despite being diagnosed 2 and a half years ago, being told my injections were for life? I was initially on every 12 weeks and had to fight to get it down to 8 weeks due to returning symptoms. I have pins and needles in my hands and feet, memory lapses, brain fog to name a few... Additional note: I was diagnosed at a different GP surgery, tempted to try to go back to them, as I have moved to a new GP practice in the last year due to house move.
Thank you in advance for any help & advice!
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amydemi
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Hi amydemi, Ive been told my injections are being stopped due to the pandemic, I'm just like you having syptoms which I recognize as my body needing it's B12 injection, but I can't get past the brick wall of receptionist , I'm not giving up, I feel your frustration ,
There are more knowledgeable people on here who I'm sure will advice you, hang in there we are on your side.
Thank you, you as well. It is incredibly frustrating!
I just rang and spoke to the receptionist at my old GP surgery who was lovely. Unfortunately I fall out of the area only slightly so cannot go back to them or speak to one of their doctors (I wanted to hear if the 'new advice' was being given at their practice also!) ...
He said to keep fighting as well! and said that I should speak to the practice manager of my new GP surgery if I don't get anywhere soon.
I don't know what more I can do as my GP has ignored all of the resources I've given her.
As you say, fingers crossed some help on here will lead us in the right direction re. next steps!
I had my injection last Wednesday, the nurse came out to my car and did it there for me, was then told monday that injections were being stopped, not due to pandemic, but just because it could be controlled with tablets now 🤷♀️
Ow iv luckily just had mine. But the nurse said I shouldn't have its not essential. I am shielding. Was 12.5 weeks. People talking about the whole year, it wouldn't hurt. It's totally wrong. I can't absort from tablets or food and was getting really ill. Is there an option of asking a different Dr or nurse at the same surgery? It seems view's vary a lot. I struggle after 10 weeks not been on them very long.
I have been put on the tablets as of monday, and had my injection last Wednesday, I phoned the surgery and I was told to go in as its essential that I have the injection
Ask her for the scientific paper showing that everybody with a positive IF antibody test was shown, on a large-scale study was fine on tablets.
She cannot because no such study has been done. A few studies, on a tiny number of people, some of whom may have not had PA, has shown that some of them can absorb a small amount of an oral dose.
As Dr Hajo Auwerda, a haematologist with a special interest in vitamin B12 and known in the Netherlands as the B12 expert, said at the PAS conference last year. The evidence is from two 'stupid' studies.
No advice but I was told the same thing monday and have been put on the tablets, I was going every 10 weeks for injections and was diagnosed roughly 3 years ago and was told for life. I have been told I need a blood test in 6 months to see if they are working
Or buy your own while tiy fight thus si less stress . Please dont get more ill.
I had mine at the surgery today.
I've also bought some for the first time. I'm certainly not going without.
Too ill
for too long.
You have a PA diagnosis . The guidelines are very clear.
Is there another Gp at the practice?
CCG.
What are these doctors doing. ??
Dear amydemi and everyone else who is still fighting for B12 injection treatment. I will share my experience, hopefully it will give you some useful information.
On 21st April I received sms informing me about the new guidance of BSH regarding the risk for injections during the pandemic. As a result I have spoken with a doctor who told me that the only way I can receive it is with private service. As probably all of you know, BSH has changed the guidelines on 24th April.
2 phone calls, 2 emails including the complaint option as I was seeking for clarification and solution in accordance to the latest updates... nothing. The management team is silent and the receptionists insist they are not aware referring me back to the doctors. Therefore, I have contacted the Watchdog local organisation. The lady I had a chat with sent them immediately an email and I am waiting for development tomorrow. However I decided to insist as the tiredness, difficulty to concentrate, burning pain in the ankles significantly affect not only my wellbeing but my work as well. Via the online consult I did not receive the expected phone call, but an email instead. The doctor quoted the BSH with reference to the suggested oral treatment and not a word of the inconvenient for them info. However there is a paragraph stating injection can be given if symptoms remain even if they do not recommend it.
So please persist and if necessary seek for assistance from related organisations. Sadly, I find shameful the fact that thousands of NHS workers expose themselves to danger cooping with this extremely difficult time, while surgeries just shut the doors leaving patients without help and hiding behind the desks.
Totally agree with you. It appears my surgery has just " shut up shop" especially regarding b12 injections. I've been in contact with my local CCG and MP and spoke to my gp to no avail. They are determined to follow this fictitious "new evidence" even though the BSH guidelines are crystal clear. The worst thing is that my gp admitted when I spoke to him that they are using the "opportunity" of the pandemic to "review" patients treatment. However when patients ring the surgery to ask about their b12 injection the receptionists are telling them they will be recalled later and the review is not being mentioned. It's only because I've been persistent that the gp had to tell me whats going on. I told him that this is causing extreme stress to patients who are already anxious about catching covid 19 which he acknowledged!
What a mad mad world medicine has become!!!! For most people we start out with supplements & when we dont absorb them we move to B12 injections & improve immensely.......where then is the logic that we can move back onto supplements & thrive!!! Its like The Emperors clothes!!
Honestly the medical profession is a disgrace that they actually swallowed (excuse the pun!) this nonsense! Unbelievable!!
Ive been told I have to talk to my GP two weeks before my next script of b12 vials......I fear am about to be peddled the same rubbish.......despite an nhs neurologist recommending I have b12 injections. I self inject I wonder what the difference in costing is? and what the difference in costing is when damage is caused by the wrong treatment & they start piling in other tests & meds as their patient deterioates more and more. Well my practise know am not a push over so I await with interest what they say & how they will substantiate it.
If they worked out the cost of an injection which is pennies, then offset that cost against the amount of people who go on to suffer damage caused by lack of the proper treatment, it would be staggering!
Not to mention those misdiagnosed with early stage dementia, MS, ME etc, all for the sake of a few pennies.
It's like telling a diabetic they don't need their insulin anymore as their levels are fine after injecting.
Hi. I'm in the same boat as you. Diagnosed with pa in 2007 and having b12 injections every 10 weeks since then. My gp has said the same as yours that they are following " new evidence" that patients can be switched to tablets and it's nothing to do with the pandemic. There is no change in the guidelines set out by BSH and NICE so it's a mystery where this new evidence has come from. I told my gp that to stop peoples injections in the middle of a pandemic has caused extreme stress. It's worth noting that not all surgeries believe this new evidence as some are continuing with treatment and allowing their patients to self inject. I have brought this issue to the attention of the PAS and they are very concerned about this and are writing to my local Clinical Commissioning Group. It would be worth well for you to tell them that the same thing is happening to you. You could contact Petra Vasser at the Society.
I know this may sound drastic, but your health is very important, if ALL else fails get a solicitor to send a letter holding the surgery and the GP in particular, accountable for any deterioration/lasting symptoms that occur as a result of you not getting your regular injections.
My daughter is due her injection in the next couple of weeks....🤞🏻she doesn’t have an issue, she lives in London.
Not sure where everyone is from, but I live in Warwickshire and had no issue having my b12 injection last week, the nurse phoned me the morning of my appointment to see if I had any covid symptoms and as I hadn't I was able to go down to the surgery to have it, they were not letting people in the surgery though so she came out to me in my car fully kitted in PPE and gave me the injection, then Monday I got a call saying they were putting me on the tablets
You are the first person ive heard mention legal advice,/action which surprises me.
I am wondering exactly where we would stand . You can die of PA, surely there is a case if gps are withholding the only proven effective treatment by injections.
Withholding injections = return of symptoms,indicating deterioration which if continues likely to eventually cause considerable disability or worse. Surely this equals ,'causation' as the medical lawyer term it.
Hi Petra Visser at PAS is aware of this petra@pasoc.org.uk. If you inform them of your experience it will help them build up a picture of how widespread this situation is.
The original 24/4/2020 BSH guidelines for B12 during the COVID-19 pandemic (referenced in a reply below) have been revised after the intervention of the PAS, and are now, as of 01/05/2020, as follows:-
In a nutshell, that practices should suggest oral rather than injected B12, but if patients push back, and in particular if they report neurological symptoms, injections should continue.
What particularly caught my eye there, though, was:-
Patients who are already self-administering IM hydroxocobalamin should continue to do so.....
the first acknowledgement I have seen that SI can be officially sanctioned; I wonder under what circumstances this can happen, and if anyone here is on that regime?
In the meantime, we continue to help the NHS by relieving them of the burden of dealing with the B12d here, and will clap for them tonight; though a little less loudly than we might, to exclude the wrong-headed NHS people trying to push us onto tablets that we know won’t work.
I was feeling very pleased with our practice as my husband received his 3 month B12 top up.he then got a letter saying new advice recommends to stop these.however they will test just before 6 months from last injections.if needed will allow.
Hi I think the confusion has come from the PAS trying to help us by conferring with the medics and them coming up with these new guidelines! GPS have taken the new advice the wrong way! Instead of helping it seems that they have latched onto the bit about offering oral solution to see if it will help. The wording makes them think that oral tablets will work, there hasn't been any 'new trials' just new advice which is very badly worded.
Thank you so much everyone who has replied. It is invaluable to feel your support and hear your stories.
I’ve since got hold of the practice manager at my surgery and explained everything I’m feeling - including reiterating the BSH guidelines and also that on the NHS WEBSITE ITSELF it states that blood tests are problematic as it tests for full b12 levels in the blood, not active and inactive forms.
I’ve now successfully been allowed to book in my injection (thankfully!) but also a full blood count and another Instrinsic factor antibody test, following another phone call with my GP this morning.
Don’t give up! They really don’t want to give these injections though do they?! I agree, I think the guidelines (prior to revision) are a little confusing and GPs have latched onto the oral tablets suggestion and perhaps it’s made this situation worse.
When I’ve pushed about the “new evidence” they have nothing to say... I’ve also gone over the issues with blood tests once treatments have started and tried to explain that PA patients must be flooded with b12 in order for our bodies to take what we can from the injection. It’s water soluble so whatever is not used is discarded naturally by the body, so there is no risk of overdose (which my doctor kept mentioning). I’ve pleaded that she take into consideration my symptoms when deciding the course of action, WITH ME, not FOR ME.
I just hope ALL GP surgeries are issued with the new BSH guideline! I’ll be emailing the society to inform them of my case to hopefully add ammunition, it’s awful to be put through this during an already incredibly stressful time.
Thanks again everyone, let’s keep pushing to get this condition better understood and treated!
I am so relieved now that I self inject at a frequency that stops me becoming worse .
My 8-weekly NHS injections were stopped months ago by the practice because one of the GPs did not agree with my regime. I was devastated at the time.
Now it seems that BSH have given me carte blanche to continue (see Midnight_Voice 's observation above) - although I'm certain this was NOT their intention..
For all of those who rely on the NHS to keep them well, and who now find that their injections have been stopped altogether:
Read the new BSH guidelines (link in Midnight Voice's reply above)- which were in response to meetings with PAS because so many practices were refusing to treat patients.
Look at the Pernicious Anaemia Society website for advice.
If you are a member, you can contact them.
(Be aware they are probably inundated with B12 deficient members needing urgent help right now).
Look at Tracey Witty's latest blogs and her website.
Write to your Practice Manager.
A tablet won't work for you if food doesn't: it relies on the small intestine to get into your system. So those with PA or absorption issues won't be able to access the B12 they need.
Well done. I'm pleased to hear that your injections have been reinstated and that your persistance has been rewarded.
My only concern is that you say they are planning on doing another antibody test.
I see you have already had a test and been diagnosed with PA. My understanding is that the test is not very reliable...it frequently gives false negatives but if you test positive then that is generally fairly reliable. I fear that if they test you again and it comes back negative that they will take that as evidence that you do not have PA and you could be back to square one.
Sadly it was the only way to get her to agree to give me an injection... further testing. I can’t understand why though if my antibody test came back positive before? Are there reasons it can come back negative but be false? I’ve never looked into that because thankfully I never had to. It’s been a constant battle for information and for understanding since being diagnosed and every nurse I see seems to put their opinion in the mix as well and query why they’re every 8 weeks not 12! Nightmare. Thanks for your advice.
I'm afraid I don't know why the test isn't very accurate but I have read a few places that the test often gives a false negative. I guess it's just a case that it is difficult to pick up the antibodies but once you do detect them, you know that they are present.
It's good that you are now getting your injections. Hopefully they may forget about doing the test. The only reason I can see for wanting to test you again is that they hope that this time it comes back negative and they can take you off them again. If that does happen then I think you have to dig out the paper on the accuracy of the test (someone on here will have it to hand) and ask her why she felt there was something wrong with the original test.
Why the need to repeat their own tests for PA? Its madness & frankly they are wasting money. I do wonder what goes on in some of these doctors heads!! You dont miraculously recover from PA. You need the b12 injections for life thats been proven & frankly I would challenge them over this. Bonkers!
Ive heard some doctors are doing the same with Hypothyroidism.....taking them off their life long needed medication & telling them they wont treat unless the blood tests indicate a need. Doctors are making people ill & causing damage to people health through ignorance & incompetance. They are a disgrace to the profession. Patients shouldnt have to fight so hard for the maintenace of medication because of malpractice & frankly it shows how reliant on computer screens doctors have become as they seem unable to use basic common sense. Its not rocket science!
We DO need the injections. So many doctors saying we don't, but anything taken orally does not work. I did my first self injection on Monday and found it so easy. It did not hurt as much as when the nurse does it.
Well done briarhillcat. Ive been doing mine for nearly two years now & glad to see si has appeared in the guidance notes at long last. That should reassure my GP Surgery as they've provided me with needles & syringes & precribe the b12 vials. Ive found this nethod very effective. Its also a lot cheaper for them as they dont have the cost of the nurse administering an injection which is the main cost.
Thank you. I was a bit nervous because my mind went blank! But got there in the end, I have had to buy my B12 and needles, cannot get them from the surgery. Had a letter saying no more for a year! I have an idea that they are going down the road of stopping them. They do not understand. We Need the injections. With Pernicious Aneamia the stomach just throws out B12 in tablet or diet forms. So shall just keep doing it, now that I know that I can! My daughter was so pleased with me. You have been injecting yourself for quite a while now, and I am glad that you are able to get what you need. Stay safe in this current situation.
Thats so wrong and irresponsible what they have done to you. They dont tell diabetics - sorry no more injections for a year!! If it were me I would write to the Practise Manager to complain, stating that you have PA and therefore are unable to absorb B12 any other way than through injections. Point out that without injections your health will decline and lack of b12 will cause you irreparable harm. Then politely request that they either reinstate the injections or provide you with needles, syringes and the b12 vials so you can self inject. Ask for a writtten response within 2-3 weeks and request that your letter is put on your medical records.
I know, it is so stupid. I cannot go for my injections, but was sent for to have a blood test for lithium. I asked the nurse if she could give me my injection being as I was there already, and she said "No, I cant do injections I can only take blood" That sounded so strange to me. She did fetch a doctor and It was my own doctor, and I asked him why I could not have it and he said it was "Government rules". I told him I was going to self inject and he said. "I would not recommend it, but it is up to you". So, I am doing it myself. I have tried before to get it every 10 weeks as I was struggling with getting it only every 12 weeks and he said "No". I cannot keep arguing with them, it just gets me all wound up, so I am now set up with needles and B12 that I bought myself and did my first one on Monday. It is thanks to all the lovely people on here who are so helpful that I was able to go down that road. We are here for each other. You take care of yourselves and Keep Safe. xBriarhillcat.
Awwww yes people on here are lovely & supportive. They have helped me too which is how I came to self inject - life saving! At least you have complete control over how often now!!
Shameful of them. Your doctor sounds very arrogant.
He is usually very nice, but I cannot get it through to him that we NEED the injections. We know our bodies a lot better than they do! Never mind, we will just keep going, and be thankful that we have this wonderful Forum and get the help we need. I could not have coped without the help here. Take Care
I know what you mean.....my GP was totally amazed at the difference b12 injections made to me. I didnt have to tell her as she could see it. But protocol and systems take over any logic Im afraid so it was still another 6 months before I got the injections. Lol. Glad I didnt wait! Xx
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.
May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.
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.
Impact of Pandemic
Unfortunately this is an extremely hard time to argue for reinstatement of injections.
Many on forum have had B12 injection stopped/delayed or swapped for oral tablets during Covid crisis.
Many on this forum have been put in a situation where they have no alternative but to source their own supplies and self inject.
Injections stopped due to pandemic
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
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.
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, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
Hello. We are all in the same situation here, and yes, you do NEED injections I have been having them for over 40 years when I was diagnosed and due to the intrinsic factor now missing any oral supplement will just be thrown out. We need them. It is very worrying and frustrating for us and it seems that doctors are just going down the 'old road' and have not been advised of the new information from the BHS. I wonder if they will be told. I did my first self injection on Monday and found it very easy, thanks to many wonderful people on here. Good luck to you.
Hello,, sorry to hear your B12 have been stopped and so many centres are doing this. You definitely need injections if you have pernicious anaemia. Tablets will not help your body will just throw anything oral out. Your stomach cannot absorb oral things. So many of us on here are now self injecting. After getting some lovely advice from people on here, I went ahead and ordered B12 vials, and needles and am doing them myself. I have had no problems doing it. Hopefully you can get the help you need here. We are all here for each other. Good luck. Briarhill Cat. Meow!
Gave up with Doctors about 15yrs ago, self injected ever since. Best thing I ever did, I can control how I feel and nobody can argue otherwise. Not like the NHS even give you a reasonable dose unless you're very, very lucky..
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