The last two weeks have been a very testing time for the society. This is because various professional bodies have issued Guidelines to doctors and other health professionals on how to deal with the unfolding Covid-19 pandemic. The British Society for Haematology (BSH) published their Guidance on treating Pernicious Anaemia during Covid-19 two weeks ago. The Guideline, like other that have been written, sought to minimise the risk of cross infection to front line and ancillary health professionals who, as we all know, are risking their lives to help save others. At the same time, the Guidelines seek to minimise disruption to patients. The Pernicious Anaemia Society realises that healthcare workers are extremely vulnerable at this time and fully supports the efforts being made to minimise the threats to front-line health professionals. At the same time, we want to minimise the disruption to patients’ treatment.
The Guidance from the British Society for Haematology caused a huge strain on this society resources as concerned patients, or rather frightened and terrified patients were being told by the GP’s that following the advice of the BSH they have enough B-12 stored in their liver that they will not need an injection for a year or even longer.
Patients with Pernicious Anaemia, and their families, were unable to reconcile this latest advice with the information that they were given at diagnosis that their treatment would be a life-saving injection every month, every two months or at the least every three months. And this led to us being inundated with telephone calls seeking clarification.
We were pleased that two of our health professionals were able to contact the BSH and arrange for an online meeting to take place on Friday 17th April. The Chairman of the PA Society, Martyn Hooper, and Petra Visser, PA Society Webmanager and Chair of the Dutch B12 Foundation, were asked to attend the meeting with the Haematologist who had been given special responsibility to issue a raft of Guidelines for dealing with all manner of blood disorders during the Covid-19 pandemic.
The meeting lasted over an hour where a whole range of biochemical and medical evidence was discussed. The next day the BSH representative issued a new draft guideline that the attendees were asked to comment on. Thankfully, the advice that patients had enough ‘stores’ of B-12 in their system to last them a year was removed. During the consultation period Martyn had provided the BSH with the ‘best practice’ advice from the Welsh Government which had been produced after he had written to the Chief Medical Officer and the Minister for Health at the Welsh Government. This stated that patients should undergo a telephone interview with their healthcare provider on the day of their appointment for their injection. If the patient had none of the symptoms of the virus then the injections should go ahead. Over the past week emails have been exchanged several time a day with the participants all having an input into the content of the emerging guideline.
The draft guideline underwent several changes, and Martyn and Petra were pleased that their suggestions were not only listened to but acted on and the new Guideline on treating Pernicious Anaemia were issued yesterday.
This society is pleased that we were asked to play an active part in the development of the guideline as the bona fide representatives of a large patient group. And we are also pleased to report that the BSH is now going to revisit their 2014 guideline with a view to updating it – and we are excited to have been invited to be involved in the process and, of course, we will be happy to do so. Now that we have forged links with the BSH we look forward to being involved in all manner of activities in the future.
Our thanks go to Mr. Julian Owen for setting up the dialogue and meeting and to Prof. Martin Warren for acting as scientific consultant on behalf of the society.
The new Guideline:
Clarifying the new BSH Guidelines
- The Guideline has been produced to deal with the current Covid-19 pandemic. It is not a general guideline but has been produced to help doctors make the right decision about treatment during the lock-down period.
- The previous guideline advised doctors that patients with Pernicious Anaemia can safely have their injections stopped for a year as they will have sufficient stores of B12 in their liver. Many patients were then told by their GP or nurse that their injections would be stopped for a year. This led to patients who are members of this society and a great many who are not, telephoning the office asking for advice.
- We set up a meeting with the BSH and informed them that the guideline was frightening patients and would probably lead to them developing irreversible nerve damage. The BSH listened to what we said and asked what we would want included. We suggested that the whole issue of the liver storing B-12 was wrong and that patients should be interviewed on the day that their injection is due and if he or she had none of the symptoms of Covid-19 then their treatment should go ahead. We also suggested that, as was advocated by the RCGP a week or two earlier, that patients be instructed on how to self-administer their injections. The BSH took on board what we had to say and issued a new guideline that is a much better approach for patients and medical professionals during the current lock-down.
- The BSH couldn’t advocate patients being instructed on self-injection during the pandemic as it would involve medical professionals and patients risking cross infection of the virus, though this is something that can be considered once the pandemic is over.
- Patients who are currently self-injecting with prescribed B12 from their GP should continue to do so.
- Some members of this society take high or very high dose oral tablets in stead of injections though this is a tiny minority. If injections are not able to be given for whatever reason, then doctors can prescribe 1mg tablets. There are a number of problems with this however. Firstly, not all patients respond well to oral tablets and, secondly, the tablets prescribed are not guaranteed to be pharmaceutical standard and are instead regulated by the Food Standards Agency.
- Reacting to our concerns about the alternative oral treatment the new guideline states clearly that if patients experience any neurological symptoms – numbness or pins and needles – then he or she must contact their GP immediately.
Again, please be aware that this new Guideline is aimed at the current Covid-19 pandemic.
We are pleased to have been involved in producing the new guideline, and we will be participating in producing a new Guideline on the Treatment of Cobalamin and Folate Disorders later this year.
I am due an injection for b12 I have pernancious anaemia the doctor told me I had to have this injection every 3 months as I cannot store b12 ,when I opened the doctor’s to ask about my appointment I was told it is cancelled til further notice and I should take b12 tablets.
Try calling again and telling them about the new BSH guidance. If it is possible to do so safely, you should be able to get your injection.
High dose sub lingual tablets (2 X 1000 ug) have proven entirely effective in my wife and other people we know, including a good friend who was on regular B12 injections for years, and had B12 levels of ZERO prior to treatment.
Following our recommendation to her of these tablets, her levels recovered so well, that the Doc had agreed that she didn’t need injections any more.
This is prior to Covid-19, when injections were not an issue.
N.b. My wife, who suffered nerve damage due to low B12 (she had consistently been told her levels were “normal), was told by her Neurologist that levels of at least 500 are needed in order to avoid nerve damage. GPs will tell you that a level of 200 is”normal” and take no action!
So lack of anemia symptoms should never be the only criteria!
The NHS is not educating GPs properly about this!! Or they are not listening to their own neurologists!
I have pernicious anemia and was diagnosed quite a while ago, I also have Lupus and take immuno suppressant for this condition.
I rang my gp to be told by receptionist they are not doing b12 injections as I would be fine as they had checked and there should be enough b12 in our livers to last 2yrs??? If that was the case why do I get injections every 3mnth? I explained that I actually know when my levels are getting low as it affects me physically and mentally, to be told the gp is telling people to buy b12 tablets, I enquired ok which ones and how many, to be told 1 tablet a day. What should I do. As I know I will be unable to function in my role as a healthcare worker.
I have just sent you an email
My mum who is a recovering stomache cancer patient was told she would have enough b12 in her system 2 weeks ago last week she fell because of neurological withdrawal last week. Please don’t accept this if you are in need and complain to your GP.
I am due my B12 tomorrow (06/05/2020) had a call yesterday to be told it’s cancelled indefinitely! I have strongly argued this. Having a call from GP later to discuss. I have mine 10weekly and already having pins and needles and leg pain! I have also just lost my father and can’t deal with the extra stress! Before I was diagnosed I have serious mental health issues from the low B12 levels. I can not and will not go back to how I was before. Will ask them to look at the new BSH. Is there anything else I can say?? TIA
I was able to find a private GP that was happy to provide my b12 injection at a very reasonable cost. If like me you can’t get your doctor to provide your B12 definitely worth a google search for local private doctor. Good luck
I had major surgery 10 weeks ago (total hip replacement) and was due my B12 on April 17th, my last one was February. Like everyone else I was told no injections, buy tablets 1mg…the GP didn’t tell me which ones to buy, I had to ask my cousin, she’s a nurse also B12 deficient. She advised me that 1mg would be useless and to take 5mg sublingual everyday, which I have been doing and I am really struggling with my energy levels, tingling in my feet and hands, concentration is zero and mentally depressed. My GO surgery is of the opinion that tablets are just as effective as they’ve looked at research from Europe and America. I don’t know how much longer I can function, my injections were every 8wks because I had peripheral neuropathy tingling. How is my body supposed to recover from the surgery if I’m floored by low B12. I am really struggling
Refer the GP to the RCGP who have stated: teach appropriate patients to self-inject and tell him you have a nurse available and would like a prescription for B12. Also point to the BSH guidance as many GP’s are not aware and state that there is no clinical evidence tablets work as well as injections.
Just an update on the B12 saga. I phoned my GP, yesterday and, as usual, the receptionist thought she knew best! I said I was really struggling and was told by this non-medical, unqualified receptionist that 1 or 2 mg daily work just as well. I said NOT for people who can’t absorb them and referred to the latest update from the BSH and PA Society, which shut her up. I asked to be given an ampoule and needles as I had a relative that is a registered nurse and she could give me the injection. The response was “We don’t provide needles and syringes, only the ampoules, perhaps they could get needles from the hospital where they work” WHAT! Basically this person was advocating theft from a hospital! The ampoule has been requested and hopefully I will have it by tomorrow. The needles and syringes I’ve had to buy myself. Oh yes, I asked to speak to a doctor and the receptionist wouldn’t let me, just said that they would tell me to take 1 or 2 mg daily. It won’t be untill someone drops down dead from the abundance of ignorance that the adverse effects of B12 deficiency will be taken seriously!
i agree doctors are not taking pa patients seriously .a stand in nurse for my practice when i told him my symptoms gas along with pain and forgetfull ness. started to say i dont think that has anything to do then he stopped it certainly is time doctors should learn more and be able to relate to patients instead of making them feel they are hypocondriacts
i had to phone my surgery plus nurses today to find out my b12 injection was postponed i have a long term chronic condition bcause of pernicious anemia i hve had since teenage years just now im experiencing deep depression because of this but who cares certainly not doctors regarding taking tablet s they dont agree with me regarding covid they can keep any injections for it in the future ive had enough regarding doctors being involved with covid i was told by my practice they had nothing to do with it so be it they can kep their covid injections
I had my b12 injections stopped in April and told to take tablets.
Had my stomach removed completely due to cancer. Received letter to take tablets these are useless go straight thru me.what can I do to get my b12 restored my doc says I have enough in system for year. If so why am I spending my life in bed totally exhausted. Thankyou
Please see the BSH and NICE Guidance on B12 and Covid and point your GP to it: https://pernicious-anaemia-society.org/pernicious-anaemia-treatment-during-covid-19/
I am the same as you Suzanne, I am due my b12 injection on the 6th May 2020 and to have it every 3 months. Plus I already have had an ambulance out due to on going arterial fibrillation issues.
Already been refused. The GP refuses to discuss it. Is this being sent to Gps so they know? Thank you
My next B12 injection is due on 26th June but I have received a letter from my GP stating it has been cancelled and I should take B12 tablets. Yet, I was originally told I must not miss my injections, as my body cannot process B12 and I would become ill. I was told B12 tablets were not suitable for me and that’s why I have to have B12 injections for life. So what am I supposed to do?
Call your GP and refer to the BSH guidance
I am also due mine on the 17th May and was told to go to the chemist and get the over the counter B12 tablets
I get my B12 every 8 weeks and was also told I had enough stored for 1 year. I was horrified. I am going to call doctors again today to see if they have changed their rules. I’ll let you know.
Update.. doctor didnt call. Told that nurse would call….she didnt. Called at surgery today to be told by receptionist (through the window…I was outside!) Doctor will call tomorrow. We will see if she does. My B12 was due last Wednesday.
i just got a text message saying take tablets reassessed in 6 months and when telephoned asking about prescription for tablets got told to buy them which ones to asked got told any they are all the same, no they are not they nearly all contain additives. I’ve been having injections for 30 years how can a tablet be sufficient. My daughter is nurse and could give this to me no problem but my gp willnot permit it. Oh also immune compromised x
Call the surgery, ask to speak to the GP and point to the BSH Guidance and insist on your injection or a prescription as you have someone who can inject you.
Could this be a viable alternative to anyone who recieves injections for B12. I recieve injections every 12 weeks and yeterday while in Boots Purchased a Daily Vitamin B12 oral spraycalled BETTER YOU B12 boost Daily apricot spray. at a cost of £12 these are availble on-line at £9 from other films . Hope this helps during such a hard period.
The problem with supplements (and even the prescribed 1000mcg tablets) is that there is no quality-control on them and it is a bit of a hit-and-miss. I do know from that particular spray you need to store in dark and cool to keep the B12 in it. And what works for one person does not necessarily work for another. Try it and monitor your symptoms if you cannot get your injections.
The reason people are given injections of B12 is because the amount in the tablets are too low. I have been taking Vitamin B12 1000ugs for 20 years. Dr Charger shown a man who was prescribed oral B12 recover really quickly on the tablet
I had my bladder removed 10 years ago and energy levels have been low evet since.Ladt year i was told i had pernicious anaemia and had to have b12 injections as I cannot absorb it from my food every 3 months. Fatigue joint pains no sleep but drowsy now. Told I cannot get it every month and that’s it. What can I do please .
I have my b12 injection every 3 months as my body doesn’t store it, My b12 injection was due on 23/04/20 I was contacted 2 weeks before to say my appointment was cancelled, I was told to get a tablet from the local health shop, I have now been getting pins and needles in my feet, not sure what I’m supposed to do, this is very worrying.
Please call your GP and explain all the symptoms and ask for an injection.
Pins and needles are caused by neurological damage. You need your B12 and you need it now. Quote the new guidelines, your GP can’t
ignore them. Good Luck
I am due my B12 on May 12th i phoned my doctors 2 weeks ago and was given an appointment on my due date nothing was said about not doing it so will wait and see.
My B12 injection was also cancelled by my GP. I then read on the PAS website that the Haemotology Society have revised their guidelines, so I contacted my GP and raised this with them. The surgery have reconsidered their position and are now resuming B12 injections. I’m having mine tomorrow! It might be worth contacting your GP again.
Thank you PAS!
This is very promising news. I had phoned my GP surgery around a week ago asking if they had reinstated the b12 injections and was told no. I am now 8 weeks over my injection and as a result, I am experiencing light headed Ness, dizzy spells, pins and needles, heavy legs, utter fatigue, brain fog and concentration issues and stabbing pains in my chest area. I explained this to the doctor who said these aren’t symptoms of PA. I explained I am a key worker and desperately need my injection yet they still refused and did not offer alternatives. I bought 5000mcg sublingual tablets online, take 5-6 a day but they are making no difference. I will contact my surgery again today to ask if they are reinstating the injections following this new update. I’m in Scotland. I just wanted to say thank you so much for working so hard for us in the background. I have subscribed now as I was so impressed with your efforts. Great website!
I have these symptoms most of the time even on B12 injections ever 12 weeks, do you think I need them closer together? Any advice would be appreciated as I have been back and forth to neurology and the doctors for the last 2 years and no one has ever suggested readjusting my levels. Had funny sensations in my face and left side intermittently and nonone seems to be able to help.
Just wanted to say I am very grateful for all your hard work. It is very much appreciated and if I can help in any way then I would be only to happy to. Thank you ????❤️
I don’t know how they could tell you that because b12 tablets are no use to you it would just go straight through you the only thing that works is the injection
Well, I have just come off the phone to my GP whom yet again refused my injection. Now going on 9 weeks being overdue my 8 wkly injection. I advised there is new guidance issued from BSH where it states these injections would resume for PA patients. I was put on hold while the receptionist went to speak to the doctor. She returned stating they are aware of the new guidelines and are working out how they are going to go about giving the injections so was asked to call back in another 2 weeks while they work this out! Seriously? Absolutely disgraceful!
I was told the same on Friday 8th May, My injection I get every 10 weeks as the last month I am on my knees with no energy, sore muscles and very poor mental health. I stated that I had been told on the 17th March that no matter what I would get my injections!! All change!! I was also told to take tablet form. I was told when I was diagnosed that I couldn’t absort B12, PA! WHat am I meant to do? Anyone any ideas?
Call your GP and point to the BHS guideline above
I am on monthly injections and told that would be for life but like everyone they have been stopped, I decided to try high strength 5000mcg transdermal B12 patches which I have used for 6 weeks now. While I have for a long time, even before the injection being stopped, suffered pins and needles, leg pain, lack of concentration, brain fog and more, I would though say that my condition appears to have remained at the the usual level since use of the patches. I spoke to my Doctor advising them of the new guidelines but she appeared completely uninterested going as far as to say that the symptoms could be from something else. I know that these patches like all the other temporary measures will not work for everyone but they do seem to be keeping me going. Hope this is of some help.
I phoned my surgery yesterday, 12th May to make an appointment for my injection next week and was still refused. Was told they are not doing them and the nurse will phone me????
Do tell the surgery about the above BHS guideline as many are not aware and it might help get your injection.
I have been refused by b12 injection which was due 2 weeks ago and have been given tablets. I was told in 3 months I should have a blood test to see if I can absorb through my food. When first diagnosed over 20 years ago I was told after many tests that I cannot absorb through food but my now doctor (I am in a different county) has said there is nothing in my notes stating that. So apart from tablets I have gone back 20 years and will have to start tests over again. I’m concerned
Do point the GP to what NICE/BSH say about testing: https://pernicious-anaemia-society.org/articles/testing-b12-during-treatment/ and refer to the BHS guidance and insist on your injection.
I was diagnosed 2 years ago with Pernicious Anaemia … my injection is due 3rd June, 2020 and i phoned my GP to book in and was told No further B12 injections as they are not deemed essential at this time, however until i’ve had another blood test which can be carried out at my GP surgery on 3rd June (which makes no sense whatsoever) they will look again when results have come back
Feel like i’m being fobbed off at every turn
Point your GP to the BHS Guidance above, many are not aware. Based on that many of our members have had their injections reinstated.
I was refused my injection and deferred for 6 months was previously told I couldn’t have tablets due to levels of absorption I have now been told to buy them over the counter Tild the of the new guidelines and was told their decision stood
I have b12 injections every 12 weeks as i can not absorb b12 from
My diet, my doctors surgery told me I am unable to have me latest injection (which is now overdue by 1 month) and also that I will be required to have a further blood test before they continue after lockdown etc. I am showing symptoms now, slurred words, exhaustion, nerve pain etc, what should I do?
Cal the GP, point out the guidance above and request your injection.
I was told yesterday that it’s OK as the injection last 6 months (from receptionist) no further advice nothing. They have allowed and processed my repeat prescription for b12 but that’s it
Caal back and point to the Guidance, as they probably haven’t seen it yet.
You will need B12 1000ugs in the tablet and the are very cheap
I didn’t know there was a society for people with Pernicious Anaemia! I have my injections every 5 weeks after having a 2A second stoma. I cannot absorb B12, I was having the injections, told by text not to go for my appointent, I’d have to take B12 tabs, I have suffered for 3 weeks and my health took a nose dive, my skin around my stoma looked like a giant cig burn, leaked 4 or more days, nothing would stp it, I was at the end of my rope. I spoke to the pharmacy at ur surgery and after some time decided to crush the tabs, for better absorption. No joy, I decided I could handle it and crushed a second tab. This brought some relief, at last! My skin is nearly better! Leaks didn’t happen as much. Now I can actually move about my home again! ?
Please call your GP and explain all the symptoms and ask for an injection.
I cannot express how grateful and excited I am to hear this. My daughter accessed the new guidelines, through her work yesterday and shared them with me. I had no idea that you were involved! Well done everyone and good luck with your involvement in the new guidelines. Your patient, thorough and stoic attitude has paid off. I am proud to be a member and supporter of this Society! Thank you again.
My B12 injection is due. May 12th I contacted my doctors 2 weeks ago and was given an appointment for that date so hopefully will get it when due I have them every 3 months and start getting symptoms 2 weeks before.
My GP has looked at a blood test from 2 years after diagnosis and said i no longer have P/A changed my med rec and gave me b12 tablets im going to have to start the whole process again
If it was based on your B12 level then that cannot be used, see: https://pernicious-anaemia-society.org/articles/testing-b12-during-treatment/ If it was because your antibodies were negative, then also that does not exclude PA as test is very insensitive, see our leaflets https://pernicious-anaemia-society.org/leaflets-and-articles/
This is so great to hear! I appreciate our nhs immensely but their advice when I have rang relating to this had been to eat cereal! Thanks for advocating on behalf of us x
asking for my 35 yr old daughter. what happens if you are asked to isolate for 12 weeks? GP firstly said cancelled, then when pushed said ok come to surgery. she has been told to isolate for 12 weeks so cant go to the surgery. surely it would take the strain off the nhs if she was supplied with necessary items and taught to self inject at home? she has placed an order on the internet to Self Inject as she is so worried to be going without.
she is really unwell without b12 and is experiencing heightened symptoms as a result now.
what on earth is she supposed to do ?
I self-injected the first time this month as my gp has cancelled my b12 until further notice and told me to improve my diet. I have PA so diet is not a factor. I bought an autoinjector which came with 10 sets of syringes, needles and sterile swabs. My GP was horrified and advised against but has agreed to fill my b12 prescription so I can keep going myself. When I did the injection it was so easy. I was very nervous but it was a doodle.
Hi Elaine, I’m thinking of self injecting. I have got a supply of B12 ampoules, from a company in Germany, and bought needles and syringes from a UK company called Medisave. But I’m relying on my niece to give injections, she’s a nurse. Had my first injection, on Saturday, since February. Where can I get an auto injector pen and how do they work? Thanks.
Thank you so much for sorting this out. I am so relieved and also fantastic news that the BSH listened and are also going to keep working with the society. So proud to be a member.
Thank you for the new guidance.
Is there any advice on whether people with Pernicious Anaemia should be shielding/self-isolating in the current situation due to it being an autoimmune disease.?
I have read a couple of articles that say that those with autoimmune diseases will obviously be more at risk and suffer worse. I am a teacher.
Please see our other posts on PA and Covid-19.
Thank you to PAS for their diligence and assistance. The only comment I would make is the new guidelines do not make provision for people like me. I have B12 deficiency and eat a diet rich in dairy and animal products so I clearly have absorption issues. The intrinsic factor test was negative so on paper I do not have PA. However given that the test is unreliable I have always been treated as though I have PA. The guidance needs to mention people who have absorption issues in the non dietary paragraph.
All deficiencies that are not due to diet are non-dietary; there is no difference in treatment for different causes. The list of causes is very long, that’s why it says ‘e.g.’
Does this guidance apply just to England?.
I live in the North of Ireland and was due injection start of March and now have been given tablets. Have already been experiencing pins and needles and had an episode of numbness below my right eye but dr said it was probably a muscle spasm!
It is for the whole UK. Call your GP, tell him/her about the neurological symptoms and refer to this guidance.
Gloucestershire CCG have instructed GPs to stop jabs long term as tablets are ok and patients will need to buy. I suffer with neurological symptoms. If I don’t get jab I will have no brain function, bed ridden 24/7 in a dark room
Call your GP, tell him/her about the neurological symptoms and refer to this guidance.
Hi, I have been having B 12 injections every 10 weeks for almost 30 years.
My next injection is due next month.
The treatment room ( where all injections are given) has been closed since mid March. I have contacted them for advice and they tell me there is no estimated date for re-opening. I am obviously very concerned about the situation as a 72 year old with immunity issues due following surgery affecting my lymph nodes.
Your advice is greatly appreciated.
Very timely & excellent work. Many thanks go to all concerned. We’re so lucky to have you all on our side. I’m fortunate that my GP agreed to me self injecting. Scary that GPs can cite so called medical ‘experts’ who in the words of my Haemologist ‘we know nothing about Vitamin B12 & only a little about Pernicious Anaemia’.
I have relocated to Puerto Rico and currently do not have a doctor the island has the strictest lock down measure in the US. I can tell my B-12 levels are getting low. Brain for, falling asleep at noon, random nerve pain. I have some expired B-12 shoots at my home. How long after expiration date is the shot good for?
I could not say, would not do so if long overdate; you could try to email the manufacturer? Or maybe your pharmacy can help? And you could at least order some B12 (sublinguals)?
I was deeply concerned when I was informed my B12 due on 20/4/20 would be suspended and that this was in line with the Government guidelines. Moreover that the Doctor had advised that not having the injection would not cause me any damage! and that I should buy Tablet form B12 1000mcg or 1gram Tablet from Amazon or Holland & Barret and take 1 a day until current situation over. (my daughter who is a serving police officer was told similar thankfully she had a colleague who was an ex nurse + who could administer) So I am very grateful and relieved that Martin +Petra could support BSH Expert to differentiate between dietary and non-dietary B12 deficiency’s Huge thank you the PAS society for the positive outcome you now have a new grateful member.
I get my B12 injection every 12 weeks and I also get an injection for contraception at the same time.
I was due those injections today, went along to the doctors and I was given the injection for contraception but not my B12 as they have currently been stopped. I just thought I’m here surely you can give me it, but nope.
That is very odd? Try and speak to your GP directly and ask?
I had that problem, was called in to have a blood test but when I asked if they could do my B12 because I was already there they said no. I am now going to start self injecting. I have my needles and B12, and have been practicing on an orange so hopefully I shall have the courage to stick the needle in my leg. If we need an injection, we need it and tablets do not work. I have had Pernicious Anemia for 40 years since I was diagnosed with ulcerative colitis and have had injections since, because I was told that my stomach would no longer absorb anything oral. Hope you get sorted out. xx
It was my GP that advised me of this. I was told that it wouldn’t be fair for me to get when others are not.
Iv3 Bennett taking over the counter Vitamin B12 with Cyanocobalmin but was told that Myancobalamin was the won to take but it is hard to find or get! I know when I was taking it I had more energy and felt better now I still feel tired all the time! They both are the cherry quick dissolve 5000mcg.What can I do?
Thank you so much for all the work you have done for those of us suffering from PA. I have injections every 8 weeks and mine was cancelled. I phoned my nurse in such a state as I was starting to suffer from very bad pins and needles. She very kindly let me go in and gave me my injection even though she shouldn’t. Information is power and being a member of the PA group means the information we receive is correct. Many thanks
I called my gp today regarding this article as my gp surgery had suspended b12 injections for the foreseeable. My gp called me back and agreed to give me mines tomorrow morning , thank goodness
Hi, Ive been getting injections every 3 months for the last 15 years. I was due to get my latest injection in the middle of last month, but was told by my GP Surgery that it had been cancelled indefinitely as it was “not considered to be of importance” and advised to take supplements instead. However when diagnosed 15 years ago i was told that I need the injections because my body cannot absorb Vitamin B12 through dietary intake. When I questioned the advice, I was told (by the receptionist giving me the advice “that there was nothing more that can be done”).
So far I am not aware of suffering any obvious ill effects by missing my injection, other than a very mild/vague tingling sensation in my legs (which may well be psychosomatic). My injection is now overdue by 4/5 weeks, so given the recent advice listed here from the British Society Haematology, should I contact my GP and insist on an injection as soon as possible?
Ime a little concerned that given the recent advice from the BSH, I may be damaging my health if I go much longer than this without an injection.
And what are my rights if my GP simply refuses to do so?
These matters are also being discussed on the Pernicious Anaemia Society forum on Health Unlocked.
Been having B12 injections every 12 weeks for 15 years due to Crohn’s affecting absorption. Injection due 3 weeks ago, spoke to Doctor who initially said injections probably needed to continue, received a message saying research shows the liver stores B12 for 6 months and told to buy high strength tablets though have been given a prescription. Been taking for two days now, will see how things go.
Call your GP and refer to the new (above) BSH guidance and point out that even if there is such a storage people with PA and also with Crohn cannot use that.
My Son who has many ailments, the last a stroke whilst at the age of 37 (Family problem) had an appointment for a B12 injection on Monday that he has had every 3 months for many years.
I phoned to be told it was cancelled with no notice at all!
Spoke to manager of Dr’s and after almost an hour an admin staff member returned call.
She had looked over my Son’s records but could not find his diagnosis and was adamant that he didn’t have pernicious anaemia but a B12 deficiency?
In 1996 we saw a Gastroenterologist who sent our Son to see a Hematologist and the outcomes was pernicious anaemia due to his bowel not being able to absorb B12 through diet.
She kept repeating that he didn’t have this problem; I cannot tell you how I felt when I know and was there when he was diagnosed!
I made clear that I wanted to speak with the Dr immediately due to my concerns for our Son’s health and then she stated that it is not an emergency and you can have a consultation in a week; I was livid! It is clear that this receptionist thought it was amusing to treat me in this manner but for me it was not only humiliating but lowered my intelligence!
I gave her a message for our Dr to say that if anything should happen to our Son then I would hold this Dr fully responsible!
Within 5 mins the Dr phoned me and he too said that our Son does not have pernicious anaemia? They gave the name of one Dr but I now recall it was another Dr who made clear the diagnosis and why!
Our Son has been prescribed Cyanocobalamin tablets in hopes that he will no longer need injection. I explained to Dr that he was having pins and needles in his feet, arms and legs and had his usual irritability as he always does when nearing his injection but it fell on deaf ears.
I feel totally let down by people who should be helping and not hindering!
My b12 injections has been cancelled ,im worried sick im falling asleep in the afternoon, iv got pins and needles in my legs and arms and im feeling depressed through all this something needs to be done soon.
Call your GP and refer to the new (above) BSH guidance. It clearly states you should contact your GP when you have neurological symptoms.
I had my two monthly B12 injection cancelled on wednesday (6th May), I complained and explained why I needed it – finally they said I could have a blood test taken to prove whether I needed it or not…. am not impressed! So I will go armed with your advice on monday and see if it can happen. However I was somewhat worried that a GP could try to tell me that tablets would be ok, and that my ‘stocks’ of B12 would last eleven months – do they believe what they are saying?
I have asked my GP again to give me my B12 injection which is now overdue by 5 weeks and which I have needed for over 30 years.
I reported that I had numbness in my feet and balance problems and tiredness. I mentioned the new guidelines which he said he was aware of but still refused it. Because I also had tightness in my chest, he sent me to A&E for the special blood tests for the heart and they couldn’t believe that I was being denied the injection. It was a pity that I didn’t still have my own injections like in the past, before the Surgery changed it to their having them there, otherwise they would have done it in A&E, as they have no stocks themselves there of course.
Hi, I have been on B12 injections for PA for 12 years now. Despite being symptomatic by week 9/10, my GP refuses to allow them sooner than every 12 weeks. I use a spray daily which does seem to help a little. I called last week to book my appointment for 1st June, when my next injection is due, to be told they weren’t doing them because of Covid 19. After a “discussion” with the lady on reception she asked if I would like the Doctor to call me. So, the GP rang and like so many of you, I was told that I have enough stores to last me 9-12 months! I politely disagreed with this and was then told that many of the “symptoms” people felt were they were experiencing were considered psychosomatic!! Also, that my blood test results over the years were all within range so I should be fine! I assured the Dr that my symptoms were absolutely not psychosomatic and was asked to ring again on the day my injection is due. I will report what happens!
Did you point out that the BSH has issued a Guidance? And you can also tell the GP that we (patients with PA) cannot use that so-called ‘storage’as it is dependent on IF. And that testing during treatment gives no indication at all (see https://pernicious-anaemia-society.org/articles/testing-b12-during-treatment/)
I have been notified today by letter that there has been a change in guidelines for B12 injection (dated 13th May 2020). When my next injection is due (every three months) I will be given a blood test and then have the B12 injection. After the blood test it states that they will then decide if any further injections are required. Has anyone else had this notification?
Do point the GP to what NICE/BSH say about testing: https://pernicious-anaemia-society.org/articles/testing-b12-during-treatment/
My GP has refused to give the injection despite being informed that the high dose tablets they recommended (but refused to prescribe) and I have been taking, have not been working as I am suffering with extreme tiredness and bumping into things. My GP is aware I have other complex health conditions and yet still refuses to give the injection, despite the new guidelines, despite other doctors in the area now giving them. The GP surgery have made an arbitrary decision not to even think to offer these injections until at least phase 2 of lockdown has been lifted. Regardless of the patients symptoms. How is that in line with their duty of care? Why do people who are medically trained think this is a vitamin boost for people who are a little tired or have a poor diet and not realise this is such an important treatment for serious medical condition?
I have been refused my injection by the GP. The GP didn’t respond to my enquiry about the latest guidelines and has instead forwarded a prescription for B12 tablets to my pharmacy. I worked for a GP at the time my B12 deficiency was diagnosed and he chatted to me about it. I asked him why tablets weren’t prescribed as I didn’t like the sting of the injection but he said they would be of no use to me! I will most likely go private for an injection as I am concerned about long term damage and the effect on my immune system. I heard a GP on Sky News last weekend saying that the GP’s were there and available for all our regular health needs. They may well be but only if you don’t need to cross their thresholds.
I was lucky enough to get mine on my due date (today), but was informed by
the Senior Nurse that they had been given guidelines that B12 injections were ‘non-essential’. She then queried as to whether I had decided to go ‘on the tablets’ instead of the injections. I had no idea what she was talking about as this had not been suggested to me. I said that I had been told that the tablets did not work for me, hence the injections for the past 15 years. She said that new studies have showed that this is wrong and that the tablets work, so no need for injections. She also stated that they had been informed about the B12 lasting for 12 months in your system. Although I have the peace of mind that I am going to be ok for the next few months, it has highly unsettled me that it is sounding like they will be stopping injections for good. It is causing me quite a bit of anxiety.
my doctors have told me the same, no b12 injections as stays in your liver for 12 months, I said well why do I get an injection every 3 months ??, was told to take tablets, I pointed out that I do not absorb via my stomach, its a sham. I am however able to get a blood test for my thyroid …… absolutely ridiculous.
My GP surgery is currently staffed by locum, will not allow shots, only tablets, which are useless to me. I have had B12 depletion before, horrendous and nearly didn’t make it. I have paid privately to have B12 shot, multiple co-morbitidies and BAME, can’t take any chances. Friends in the adjacent borough in London, are able to get their B12 shots. Not right.
I have CIDP which I believe is the next stage of nerve damage from PA and I have injections every 3 months, I was prescribed 2 X 50 microgram tablets per day. at £11.33 for 50
CIDP society recommends 1000 per day. I bought them on eBay for 7.99 for 120.
Currently I am experimenting with 2000mcg or 2 mg per day and feeling not 100% as good as after an injection but a whole lot better than when due. I dropped a heavy weight on my big toe when due an injection, I only realised when I saw a mark on my shoe. Then when I took my shoe off my sock was red and my toenail snashed. I didn’t feel a thing. Feeling has now come back after a month or so of 1 mg tablets
Whilst it may be true that patients have a significant amount of cobalamin stored in the liver, the mechanism by which it is released to the body is via the bile salts. In other words it is released back into the gut and has to be reabsorbed into the blood. Patients who cannot absorb cobalamin from the gut therefore lose most of their store down the toilet. There is no recent research showing that oral tablets are equivalent to im injections nor that liver stores will last. Unfortunately our GPs are too overworked and stressed to bother fighting or investigating the instructions they are being given. Perhaps we should try empathising with them that their professional status is being compromised by them being given false information. None of the B12 blood tests correlate with patients symptoms. There are a variety of reasons for this. To fall back on the statement that all the patients are sufferering from psychosomatic symptoms is disgraceful. Modern charlatans but don’t tell them that.