Just had a phone call from my Dr surgery telling me I'm not going to get my b12 injection due this month as they want to limit people attending the surgery, she tells me to to take 1,000milograms of over the counter B12, tablets & tells me this is the recommendation of the B C haematology , I say the PA society don'y think our injections treatment should be stopped she said.... Who is the PA society is that a group of friends 🤔 she also says if I'm feeling unwell as in needing my injection i can ring the surgery, so I said well I am feeling that I need my injection & I've already commented to the nurse that gives me my B12 injections that I need them more often than 12 weekly, she just says I can try ringing the surgery to get a telephone appointment with a doctor but they are only doing a reduced appointment system.
Have to sign off now as I need! to finish pulling my hair out..... 😟
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Mewsmom
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I've just looked up the latest recommendation from BSH, it means (practically?)everything I was told over the phone was incorrect......I'm not really surprised by that, they just don't want people going into the surgery, so if we have any health issues including our B12 injections.....better just go away & hibernate until the surgery deems it ok for us to visit again, don't get me wrong I understand the seriousness of covid 19, honest, but other health issues are still needing attention.....are they not?
I've been through this twice now with my gp and I've been told I may go onto tablets permanently as there is an "iniative" to move as many patients as possible away from jabs. We know that most people cannot absorb b12 hence the need for injections. I will be reviewed in 3 months. So basically they are playing Russian roulette with peoples health and waiting to see if people get symptoms before their jabs are reinstated. I pointed out to the gp to do this "review " in the middle of a pandemic is causing people huge amounts of stress.
My Endocrinologist told me years age..it has to be done by injection as Pernicious anaemia patients don’t absorb tablets..they have given you incorrect information..it’s all about keeping you away from the surgery..my gp texted me to say they had cancelled my injections for six months..I since got one done private..
You've hit the nail on the head. I can get a private injection at £30 or order supplies online to self inject. My personal opinion is that they know people wont want to risk their health by waiting to see if they get any symptoms whilst on tablets so will source their injection privately. I was diagnosed with pa in 2007 and have had injections for 13 years. My gp is now saying I didn't ever have pa but I wasn't misdiagnosed either??? How does that work. In 2007 I was so ill I couldn't function and as soon as I started my b12 I recovered.
Hi, the awful story's I hear & read about regarding PA make me so angry, when I first told people I had PA, most everyone said oh yes, a lack of iron, so when we are told we can't get our injections I feel it just ! confirms to people we need an iron tablet & so get on with it.
Exactly I felt so poorly..I had just gone through breast cancer and I wasn’t getting any better and they found pa as they were checking my thyroid..the endocrinologist told me you cannot overdose on B12 it’s very cheap to administer and tablets don’t work..I will not be told that I don’t need the injections..it’s not good enough to be pushed to one side..I just went & had a blood test and no problem at all going into the hospital..all precautions were taken..very stressful..we don’t need it.
I'm so sorry to hear that you've been poorly and now have to contend with this stress. The fact they let you go for a blood test shows the whole excuse of no face to face appointments is nonsense. My gp wont let me have my jab for that reason but is happy to send me for a blood test to measure my levels! It's crazy. Stick to your guns...we all deserve better x
It certainly is, I just don't want a "break" in my medication I want to move forward not slip backwards, & as I've said I have to pay to get the oral alternative which we all seem to agree won't do much good anyway . 🤔
I brought some online and am self injecting. No other choice as the docs are ripping us off and saving loads of money blaming it on Covid. We understand Covid but why are you letting all the other patients down.
I had a phone call from my Drs surgery saying they would be issuing tablets instead of injections. I had a complete meltdown on the phone (there were tears 😭) as am 6 weeks in of my 8 weekly jabs and suffering already. After bombarding her with questions she just said “just come in as normal and we’ll do injection” So I’m guessing my surgery has been told to let people who have a bit of understanding of B12 deficiency have their jab whilst others will end up suffering with tablets just because they take Drs words as gospel?
Hi , I did tell her I was already feeling a return! of some syptoms she wasn't interested, also the B12 tablets she has told me to take in replacement of injections cannot be given on a prescription........so, she said I can't get an injection I have to pay to get an oral alterative...,..happy days. (Thank you for your reply 😄)
My jab is due next week and I have pins and needles already and my tinnitus is much worse. I've told the gp this to no avail. Still tablets and to monitor it!
I'm glad you managed to get your jab but people shouldn't be getting put through this level of stress just to access their medication. Lots of people I know from my surgery have just went onto tablets on the word of the gp and are already feeling ill!. He had to admit when i spoke to him yesterday that to do a review of b12 patients in the middle of a pandemic is causing loads of stress. I'll keep chipping away!
I understand the surgeries want to avoid as much contact with people as possible, but let’s face it, none of us would seriously want to go in unless we’re desperate for treatment. The anxiety on top of already feeling ill is not what we should be dealing with. Hope you get to have your injection. Keep bombarding the Drs. Good luck 🤞🏼
Hi, I too was told I could not go to surgery for B12. I need the injection 8 weekly because I have no tummy! Explained my caseto the nurse and informed her that I already self inject for MDS (a form of blood cancer) and would be willing to self inject the B12 stuff. I am pleased to say that I did the first self administered injection under the nurses supervision and passed 'inspection without a flinch'.
I have phoned the surgery several times. written to the GP twice and with the new guidelines. Still i am told that B12 jabs are not being reinstated and to take the 50 m cyanocobalamin tablets. I am worn out with battling. i have booked a private injection for next week when my 8 week jab is due and have a referral letter from the GP to the private hospital stating I need the injections every 8 weeks! It will cost me £42 for a phone consultation on the day to make sure i have no covid symptoms and then £25 for the injection. I am lucky i am able to afford it but not everyone can.
That's proof (if even needed) that these injections are very necessary your GP gives you a letter saying so, yet you have to go privately.....it's outrageous, I know we are all as I've already said , aware of how serious the pandemic is & the affect it's having on all walks of life, but other health issues don't just disappear....(if only).
Have you thought about giving yourself injections? Last night I did my first one after all the great information on this Forum and the kind people. You should not have to be paying for it. We are here for each other. Good luck.
My son is encouraging me to do self injection as he says, he remembers how unwell I was before I started on the B12 jabs , even though they don't last from one injection to another without them I dread to think & I've actually put that in a letter to my GP, thank for the encouragement & will definitely give it some serious thought.
It is worth thinking about seriously, as feeling unwell from not having our injections is horrible. Remember we are here for each other. Good luck. briarhillcat
My GP's are doing very sensible drive-in under a small marquee. Arm out of the window, pop in your B12, quick sterilised wipe and off you go. More people are going to have to engage in a bit of lateral thinking to maintain normality, and good health in this instance. Of course there will always be the "can't do's" who take every opportunity to "not do".
Good for you GP practice.....could you not persuade your practice to send a memo to all GP surgeries.....good to hear of a practice that actually cares about it's patient's 👍
The other thing: if you take a look at guidelines on injection frequency, it now says "every 2-3 months" instead of every 3 months- which means if you find 3 months too long and symptoms return before injection is due, your GP could bring next injection forward a month and save you the repetitive deterioration !
I realise that now might not be the time, but in for a penny..
By the way, stop pulling your hair out, Mewsmom -
if your GP makes you wait long enough, it'll probably fall out anyway !!
Lol.....oh how nice to laugh....though for a minute I thought I'd completely lost the plot, (at the sound of my own laughter being in lockdown alone for these past weeks) haven't laughed much lately.....
Thinking back, the nurse laughed at me when I had my last injection because I asked if any chance of having them more often, 😂
So sorry your on your own mewsmum,I’ve got a tuxedo moggie like yours she’s an old lady now but still a nut job,she rules over the others like a matriarch they know who the boss is lol.
Mew (in the photo) passed away just over a year ago, he was our family cat for 18yrs though for the last 8of his life it was just him & me, cats are more of a companion than a lot of people realize, I'm glad you have one even one that rules the rest of the household. 😻
My cats are all rescues from Spain.I used to catch the ferals get them spayed and release and socialise any kittens for rehoming,very rewarding if your a cat lover.
She’s the only U.K. moggie the others are all beautiful breeds.I just love them.
Yes, it is the same old story, we have all been through it on here. Fancy not knowing who the PAS is. "Is it a group of friends?" So silly. We know our own bodies, and having to listen to the doctors telling us "not necessary, take tablets" Not right. If you have Pernicious Anaemia you need the injections because your stomach can no longer absorb it. Last night, I did my first self injection after all the lovely people on here will talk to us about it, and we are here for each other. With all this with the CV19 going on as well, we need our health more than ever and not just go along with what the doctors say. I never thought I would be self injecting but did my first one and it was fine. (practising on an orange helps - poor orange full of holes!) Don't despair, we are here for each other, so whatever you want to say, you can say it here. I have great respect for this Forum and all the kind people on it. Good Luck. Briarhillcat
Yes I was terrified you can’t explain how hard it is to overcome that fear can you so you've done great.im on my 6th injection tomorrow and I’ve no intention of reducing until I feel able to,I never ever thought I’d be able to do one never mind 6 lol.keep up the good work xx
Yes, mind went blank at first and had to go through it in my mind. Laid everything out and just went through the routine. The needle did not go all the way in, but I have strong thighs from horse riding (many years ago) maybe I should try the side of my thigh next time. ) We have got to listen to our bodies, and whatever GPs and doctors say, they have no idea what it is like. Thank you for your encouragement. Briarhillcat sending Meows.
Someone should tell the .... clinical pharmacist....who asked me who/ what was the Pernisious Anemia Society....,I can't, I'm still speechless from the conversation I had with her.
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.
I had a phone call from the nurse this morning. I'm due my B12 jab and she mentioned (at least 3 times) that they can defer the jab for 6 months. I explained to her that I was having symptoms already and had seen a GP about it 2 weeks ago. She checked my notes and then asked me to come in on Thursday morning.
I take 50mcg of B12 daily along with other multivitamins and I'm still struggling,🎁 if they stopped the jabs I would be a total mess 😢
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