I spoke to my practice nurse 2 wks ago cos my b12 was due but she informed me that due to covid-19 they would not be doing them. She then said the body can maintain levels for up to 6 months. If that's the case why have I been having them every 10 wks for approximately 10 yrs??? I seem to struggle even with my normal schedule.
B12 injections unavailable - Pernicious Anaemi...
B12 injections unavailable
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Claire1966
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That’s truly outrageous , and is fabricated . There is not a shred of evidence for what they are saying . PA. patients will be left vulnerable as their immune systems will be weakened . The instructions obviously come from above as the messages from the GPS are all the same . The injections of B12 are for LIFE . I had to resort to self-Injecting years ago . If you have P.A. tablets are useless - I know , I tried then . I used to swallow no end in my desperation. . This business has truly shocked and upset me . I really feel for you . I’ll be in touch .
Hi,
I copied most of the info below from a reply I wrote on another thread.
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.
From PAS website
pernicious-anaemia-society....
There are lots of comments under the posts as well.
From B12 Deficiency Info website
b12deficiency.info/blog/202...
Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.
b12deficiency.info/blog/202...
Most recent blog posts/news items about stopped injections
b12deficiency.info/blog/202...
b12deficiency.info/blog/202...
Blog above published 18th April
The blog post below is about an e-mail campaign to get B12 injections over the counter.
b12deficiency.info/blog/202...
Published 19th April
PAS statement published 11th April
pernicious-anaemia-society....
If you're in UK, be aware that the British Society of Haematology (BSH) has issued advice for doctors during pandemic.
b-s-h.org.uk/about-us/news/...
Click on General Haematology tab in link above
then
Click on BSH Advice on Supplements tab
I feel that some of the details in the BSH advice are concerning, there is a recent thread on forum which discusses this.
I think long term that some UK forum members will struggle to get their jabs reinstated after pandemic has ended.
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 considered joining PAS?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a telephone helpline for PAS members to ring.
PAS support groups in UK
pernicious-anaemia-society....
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.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See Page 2.
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.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs
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.
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
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.
healthunlocked.com/pasoc/po...
If you have time I suggest reading through recent threads from the last couple of weeks as there have been many posts on a similar theme to yours.
I am not medically trained.
Hi Claire. I was due my b12 on 8th April and I'm always 'banging on the door' by the time my b12 is due. I only get 6 good wks per 3 months so in that last few weeks before I'm off to see the nurse I'm literally on my knees, feeling absolutely awful. Short of breath, pain in all joints due to arthritis, which is made 100% worse than normal, depression and terrible 'brain fog' no short term memory or normal brain function, I can't drive for the last 4 wks before either because my brain can't transfer what I'm seeing to be able to act accordingly, very dangerous, I have put my foot on the accelerator instead of brake wondering why it doesn't stop!!!
I've said all this because everybody has different symptoms that happen and some don't even notice they are low of b12, oh I wish that was me!!
So when I rang my gp to book my injection and was told they are postponing b12 because of covid19. I couldn't help it but I said "no, you can't do that, I'm just about functioning" then I carried on to tell the receptionist exactly what I was suffering because of low b12. She then went off the phone, to ask doc I suppose, came back asking me if I got any symptoms of the virus plus if I did come in, that I could pick it up from them too!! I said that's all ok. So she did book me in for it and after receiving a couple of texts just before my appointment asking about any virus symptoms again, I was able to go and get mine. Apologies for such a long drawn out answer, but I think it boils down to that you must tell the gp or receptionist that it's imperative that you have yours, because of whatever symptoms you are suffering now!! I do hope you have success in getting it sorted.
I got mine by protesting too. Shoudnt be like this. Do not need the stress.
That’s no way to live your life, even aside from the changes brought about by the pandemic.
If you feel it would be impossible to get your GP to allow more frequent injections have you thought about self injecting? Since I have been doing that it’s allowed me to live my life on an even keel. No ups and downs in energy levels, just each day more or less at my best.
Hi JanD236,
I have asked on numerous occasions about getting my b12 earlier than the 13wk/3months, but apparently my bloods never show that I'm deficient even when bloods are taken just before my jab!! Yet I feel so dreadful. I really can't understand why my bloods show otherwise. Even a GP at my surgery on a call back to me recently said that it can't b my b12 causing all my symptoms as my bloods show otherwise!!! I've just given up now and hope that after the 6 wks is up from my last jab I won't be as bad, but I won't hold my breath as they say!! I wouldn't know how or where to get the b12 to inject myself, especially how can you inject yourself in your own arm. Can it be done into any muscles elsewhere?!! Plus what is the cost, I'm only on benefits so money's a bit tight to say the least!!
The fact that your GP is relying on blood test results shows that he has no understanding of PA/B12d nor knowledge of the guidelines he’s supposed to follow.
The guidelines (I’m sorry I can’t quote a reference but others here will be able to if needed) state that once B12 injections have started there is no need for further blood tests. This is because the results are meaningless (unless very low) once injections have started.
The main injection site for IM (intramuscular) injections is the thigh as there is a large muscle that’s easy to reach without being a contortionist!
I can’t remember exactly how much B12 vials, pre injection wipes, small plaster syringes and needles cost and it will depend on how many you buy, factoring in postage. But I’d say around £1 an injection. There’d be an upfront cost as you’d probably be best buying 10, maybe 20 vials to minimise postage per injection (my last lot had over 2 years to run to the expiry date).
If this is something you think you would like to pursue maybe start a fresh post asking for advice on where to buy (I use versandapo.de for B12 and Medisave for everything else) and injection technique. Or search posts, the question comes up regularly and has definitely been posted recently.
Thanks again for your advice I shall definitely refer to your answer about self injecting. I've seen a number of docs at my large practice, it seems that all of them don't have a clue what I'm talking about, I even asked one in the last 6 months, did he actually know anything about p/a and he said no!!!! The nurses who have administered my jabs seem the only ones with any sense, they tell me to keep on at them (the gp's) about getting jabs earlier than every 13wks.
When this awful virus has gone and us back to 'normal' I'm thinking that I'll ask for a referral to see an endocrinologist at the hospital, at least they will know what I'm talking about!!!
Be wary of thinking an endo will know anything about PA. I had a fantastic one when I had Graves and saw him again more recently as my thyroid is slipping towards being under active (which he’d predicted likely to happen).
Reviewing my medical records he noted that my GP prescribes a monthly B12 vial and immediately did a double take in apparent shock and muttered that I should be on 3 monthly. I told him on no uncertain terms to leave well alone!
Thanks for the heads up on that. I really thought that endo's would at least go by how the withdrawal and it's symptoms affect each patient, I don't know about others, but with me they vary depending if I have extra stress (it doesn't take a lot to give me stress) and other type of factors that make the drop of b12 even worse and quicker and then I don't even get the good 6wks.
I also have hypothyroidism taking 100mcg a day too. on top of that, the menopause, which I know very many other women on here have too!!! At 64 I'm still getting hot flushes and when my b12 is low they get 100% worse!! So then, no sleep, more times than I usually have.
But enough of 'oh woe is me' I'm normally a very happy person. 🤣 the ½ glass full type, but it does test me each time.
I si twice a week and find that other than alcohol, nothing increases my B12d symptoms. I exercise a lot and have my fair share of stressful things in my life.
I drink a small amount once a week only. If I increase that (say if I’ve been on holiday) it takes me a few weeks to shake off the feeling of being dragged down by tiredness.
So I feel that I’ve found the right injection frequency for me.
I’m 61 and use HRT and keep an eye on my thyroid levels with annual blood tests. If anything is slightly out of kilter it’s probably my thyroid but levels are just below that which would be treated by the nhs. As I feel mostly ‘good enough’ I haven’t pursued this.
That's interesting about alcohol,
I don't drink hardly as it really doesn't agree with me, I will have a couple of lagers if a special occasion, but I will suffer for it, again hot sweats and interrupted sleep.
You're very wise keeping an eye on your thyroid, as I think they tend to run parallel with each other.
I find it hard to do much exercise due to permanent sciatica, arthritis in most joints as if I do too much it can put me in more pain for at least a wk, where I can't do anything then. But I do try to potter about to keep my joints moving and not seize up!!
It's been great conversing with people on the same wavelength and who actually understand just how the p/a affects our day to day lives. So thank you for your help and knowledge. I really have felt uplifted with all the comments. I'll come back when I've been able to get the self injecting going as it definitely seems the best way for me to go.
Hello JNd236. I have ordered injections from I use versandapo.de for B12, and had an email to say they had been despatched. I think that was 21 April, but have not received them yet. I had an email from DHL saying they were processing my order, but I have not heard anything. How long do they usually take to arrive? I have one ampoule left and got my needles and am about to practise on an orange! Sunshine here in Scotland. So many of us being treated badly by surgeries. We can only all stick together and hope and pray. Stay Safe. briarhillcat
I think they usually take about 5 days, maybe a week.
Thank you so much for your reply It is me panicking then! I am about to practice on the orange. Stay Safe and Keep your chin up. x Briarhillcat Meow Meow!
Practised on an orange and did it OK, so hopefully will be alright doing it. Just waiting for my B12 to arrive. Trying not to panic. Take care. Stay safe. x
Hi JanD236
My injections arrived yesterday. Thank you for your advice . Briarhill cat. Am practising on an orange, hope I will get the courage to stick the needle in my leg. x
Hi Claire,
I urge you to call them again as I believed my injection would be cancelled due to the current situation and was stressing as symptoms getting steadily worse but when I called on Friday I was told that B12 for PA is classed as a required treatment and have been given an appointment for this week. Please call them again and try to speak to a Doctor or a nurse that you have seen previously.
I really hope you have success and please let me know how you get on.
Louise
Hi PippyLou. I did speak to the nurse practitioner who always does my injections. I initially asked via an online consultation and she rang me back to tell me I couldn't have it. I'm struggling now even though it's only 10 days late. I always seem to feel low about 2 to 3 wks before it's due but this is extra. I have heard that they are doing some people but for whatever reason I'm not one of them.
Outrageous.
Write to Gp.
Phone for telephone consult.
Use facts of symptoms.
Treatment plan agreed.
Be assertive not aggressive.
😡
Get your treatment even if its DIY
Take care
Many many posts on this .
PAS helpline
This information from the NHS that B12 can be maintained for up to 6 months?
My mum was also told this .
She also has to wait.
A district nurse usually does it 3 monthly. That is the only service she gets so hardly a drain on services at present at her age in her own home.
I sort the rest!
Shes 90 and certainly does not need a reduction in her immune system function.
I despair . It shouldnt be who shouts the loudest !!!!
I understand the pressures at the moment .
It however takes more time reading letters ,discussing over the phone ect than actually carrying on with giving injections or giving prescriptions.
My Gp told me the same. I ask for the prescription and got needles and gloves and sterile wipe and can do my own injects at home. For you think your GP would agree to this?.There are plenty YouTube videos to show you how to do this.
If a nurse or a receptionist tries to fob you off with this new line of - "The body can store B12 for six months or more, so you don't need an injection" just recite this to them - word for word.
But I have PA which means that the entero-hepatic recirculation method of accessing the B12 stores does not work
I'll guarantee they won't understand it.
I wrote letters when this happened to me, one to my GP surgery, one to the CCG , and one to my MP. She replied to say she had also written to the CCG on my behalf.
Also, my husband had a telephone medication review with a GP, and mentioned to him how worried and frightened I was that my injections had been stopped.
This GP seemed to understand the importance of the injections, and promised to raise it during their case conference.
Within a week and a half I got a call from the surgery, and went in the next day for my injection. I did need to wear a mask, and they took my temperature from a distance.
I hope you will get your injections reinstated.
Very best wishes
MariLiz
Sorry this has happened to you, I was told I couldn't come in for mine by the receptionist but she then said I could speak to a GP who said I was able to come in for it. I've not actually been to get it yet as I am not quite due for one, but do try to speak to the doctor if you can
CherylclaireForum Support
Although there seems to be a variance in the perceived time-frame, many nurses/GPs/receptionists are saying the same thing about liver stores - but that doesn't make it true.
In one of the B12deficiency.info blogs in Sleepybunny's reply above, there are a couple of quotes from the World Health Organisation, 2001 and 2002 - which both address the issue of reabsorption inability if you have PA.
Also in response to the blog, Dr Katie Brooks adds that the BSH information about liver stores is "extremely misleading" and that B12 from the liver has to go to the small intestine in the same way that food does, "so people with PA or other absorption issues can't make use of it."
Her brief but succinct addition might help those who have B12 deficiency but no PA diagnosis (yet) / have B12 deficiency because of SIBO (small intestine bacterial overgrowth) etc, as well as those with a concrete PA diagnosis.
Hi Claire, from my surgery I get repeat prescriptions on line as I have diabetes as well and I noticed on the list last week that b12 hydroxocobalamin was added so I rang a nurse to ask if I could just self inject. She said go ahead if you think you are able. So having injected my self for 40 odd years anyway it was no problem.
So I read on this sight where people got needles online as diabetic needles are a lot shorter. My order came within the week so injected in my leg and was not painful at all. So you could ask your doctor if you are willing to self inject to give you a prescription. And your away!!! Sorry a bit long winded. But hope you can get this sorted.
Well done!
Wow, that is a long time to self inject. I have just got my needles and one ampoule left and waiting for my injections I sent for from Versandapod. The emailed me on the 21st to say it had been processed and am waiting for news from DHL. I suppose I am getting anxious as still not had them, but it is a short time 6 days. Have been practising on an orange. !! I made my daughter laugh as I ordered 200 needles from Medisave (do not know how I did that!) The sun is coming out here in Scotland, so 'might' do a bit of weeding. Then again, might not. Take care. Stay safe.
I've been reading these posts about B12 shots being stopped in Great Britain and am so sorry you all are going through this. At first I thought I should keep out of it since I'm not British but I wanted to let you know I feel for your struggles and that I'm praying those in power see the harm they are doing to B12 deficiency sufferers and change the policy. Keep strong!
My surgery wont budge unfortunately. I also suffer with diabetes, depression and had my thyroid removed 30+ yrs ago so take thyroxine daily. Plus going through the menopause so tbh I dont know what symptoms are being caused by which problem. The only plus is that I'm on furlough from work for another 3 wks I think so maybe there'll be a change in policy by then cos I honestly dont think I could actually work feeling how I do.
The bottom line is you need to self inject. Buy some B12 injections online, learn how to self inject on YouTube ( it’s very easy into the thigh) and inject whenever you like.
Save you from all the hassle.
GP’s have always put people in a mess with this B12 issue and don’t treat you properly.
Same here but I have been told not for a YEAR. I do not think they realise we NEED these injections, not for B12 deficiency, but they are for life and we need them. Good luck
The doctors. . They really do not understand. I tried three times to speak to a doctor and could not get past the receptionist, and yet, this morning, I had a phone call to say I was due a blood test for my Lithium levels. So I have to go tomorrow! So, I can have a blood test but not my B12. Do not understand.
I have tried three times cannot get past her. But I will ask the nurse when I go for blood test tomorow. Just looked at the video of how to self injection . One lady suggested I try it on an orange first with water. Sounds good. We can only try to keep going. Good luck
I’ve been lucky my practice is still doing them, the only difference is you can’t book the appointment in advance, you have to phone on the day and get an appointment for some time that day. Mine was around 10 days late but only because when it was due I was only one week out of self-isolation as I had displayed symptoms of COVID-19 and they wanted me to wait at least another week so I was at least 2 weeks out of isolation. Luckily by that time I was working from home so I just stopped for a couple of hours or so in the afternoon and slept as I was so tired all the time xx
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