Hi All, an update to my previous posts about B12 injections being stopped/ my writing to GP/ phone calls to surgery.
I wrote an email to my local MP explaining how B12 injections are being stopped & how people ( myself included) are concerned about the effect on our health this will have, saying also of course I understand the impact the virus is having on everything esspesially the NHS but surely other health treatments need to continue if we can find ways to make it possible, I did have a very caring response from my MP,s office who put my points of concern to NHS England who were very swift to respond, They said exactly what I expected them to say, The virus is an unprecedented situation & putting the NHS under strain & procedures & treatment have had to be cancelled or postponed & that we! should refer to our doctors surgeries on how to proceed with treatment if that is possible.
Well I tried that & as I said in my response to my MP,s office , it isn't just that they are telling me my injections are being stopped (they didn't say postponed) it's the comments they made that concerned me such as oral supplements is an alternative treatment (I'm under the impression they work for a b12 deficiency not for PA) & that the BS for Haematology say we store B12 in our liver for a year......
I guess I've few options left one being contact my surgery again 😖 & ask about self injection,
I'm not being selfish I just don't want my health to revert to my previous state, nothing the surgery has advised has given me hope that it won't since they were quit sure I can go a year without an injection, wouldn't that be nice a once a year injection that does last a year.
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Mewsmom
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I did send a reply to the MP's office saying thank you for at least doing something.....but added my surgery doesn't listen , they just keep saying I can manage 12 months etc it's so very frustrating, it was interesting to read how the two? Doctors who have PA now! fully understand just how debilitating PA can be, would be lovely if they can get that information to surgeries all over the country ,😀
Unfortunately I'm in the same position. My local CCG have been involved and so has my local MP. To no avail. Surgery still not giving me my jab just tablets
I think it will be more of a struggle getting them back otherwise.
List your symptoms . The risk to tour health again.
NHS England have not even considered the implications . That sounds like a blanket reply. I'm struggling with a tooth that needs treatment. I'm dealing with it so far . I would not go without b12 jections though .
Keep going.
When I was just about to gine up getting a prescription for b12 it happened.
Yes, I've got concerns about the injections not being reinstated 😱....I wont stop fighting! (Should we have to fight, no we should not) but for now I'm going to have a cuppa & recharge my fight! batteries. 😄
This is what frustrates me so much, the GP that started me on B12 injections was well informed of the seriousness of it.....I have written a letter to him, but no response he may not be working....he may not have got the letter I've no way of knowing, it was a clinical pharmacist at the surgery that told me the injections were being stopped, when I got a phone consultation with a Dr (not the GP I refer to above) she just backed up the clinical pharmacist..... 🙄
Maybe now is the time to contact the Pernicious Anaemia association (might be a good idea to join?) and ask for help. Specifically any papers that make it clear that PA and B12 deficiency are not the same and that the only treatment is IM or subcutaneous injection for PA. GPs seem to have an aversion to listening to their patients but a written paper written by experts in the field would be a much bigger stick in my opinion.
Hi, I am new to this forum but joined because I was having problems getting an injection. Contact the Welsh PAA, they have managed to get the Welsh Government Guidelines changed.
The PAS are aware of the situation as it's happening nationwide and are trying to do something about it. They were going to write to my local CCG on my behalf. The more people who bring this issue to attention the better!
I'm so sorry about your injections, it is hard to keep battling. I wrote in to the gp via the website and asked when the injections would be reinstated and also explaining I self-inject but would like to stay 'on the books' for my monthly injections or even be prescribed B12. I had a phone call a few days later asking me to come in for a shot. I asked if this was in response to my message or the practice are doing them anyway - the nurse said, 'A bit of both'. A couple of days after that I got a text that B12 injections were being reinstated at the practice and on the group I am on, other people had received the text also. Let's hope it won't be long until other practices follow suit and don't use it as an excuse to stop or review the injections.
Take your life back and self inject. You are losing more b12 with the stress of emails to MPs and doctors.
People who have PA or a b12 deficiency for whatever reason are the minority in current circumstances and even if there wasnt an pandemic.
Self injecting is easy as 1, 2 and 3 and takes only a few goes to feel totally confident.
My message is stern I know but it's ok for you to take the lead when it comes to your health. To a GP you are a number on his books and a coin in his bank account.
The days of just savings lives and caring for the welfare of peoples lives left with the good old days. The days when people actually cared.
Let's hope the pandemic takes us back to love instead of this fear we all live in.
I've never self injected and have an aversion to it. I've had an admittedly quick look into it (I've a very demanding and time consuming 5yr old so doing anything is hard) but I didnt understand anything, as in how to do it. I have them in my upper arm. Can you point me in the direction of a simple resource?
I agree Seren1932, I Did my first injection a couple of weeks ago, after watching UTube and printed off instructions from a kind person on here. Sorry I cannot remember your name. So, yes, it is daunting but achievable.
thanks for this. I also want to write to my MP (my sister also advised the PGA or something??), just struggling for time with the home demands I have. I've numerous pains at mo, which is new to me, so I'm aiming to print off the resources fbirder very kindly gave me, so I'm armed with resources for the gp and Mp, if I can get chance to get something together. I've had one injection so far but I sense obstacles coming up going forwards so the more of us that contact our Mps, if we can, the better
Hi, I've written both to GP & MP, no response from GP i wrote to but from other doctor it was a bland ... injections have been stopped right across the whole country...we know from here that's not true, & MP refered my points in email to NHS England who sent a generic response which in a nutshell was, see your GP...... a roundabout of no help.....good luck 🤞
Please do not think you are being selfish. You are not. You are just concerned for your health, and all of us on here have had the same issues. I had a letter saying my injections were stopped for a year. I had to go for a blood test and asked the nurse if she would give me my injection and she said she could not because she only took blood. (that sounded very strange to me) Anyhow, she fetched a doctor (who happened to be mine) and I said I could not go a year without injections and that Pernicious Anaemia is different from B12 deficiency. Anything you take orally will just be thrown out as the stomach no longer has the intrinsic factor that absorbs the B12. So finding Forum was wonderful. So many people self injecting. I told my doctor that was what I was doing and he said "I do not recommend it, but it is up to you". My friend told me that someone she knew said the same to her doctor he absolutely forbid it. Many of us are self injection without our doctors knowing. You may be lucky and your doctor OKs it, but if they say no, you can still do it, but just do not tell them. We do not need all this worry on top of the horrible Covid19. Please do not think you are selfish or a nuisance, because it is what we are all here for, and we help each other. I got my B12 solution from Germany and needles from Medisave. I hope that you get on OK talking to your doctor, but please, do come to this Forum and so many people are going through the same thing, and we know what it is like. Good luck. Briarhillcat. x
Hello, There are various places you can get the B12 Hydroxocobalamin from. I got mine from Versandapo.de The language is in German but I just went back and forth to the translation site. Mine were here within a week. My needles I got from Medisave. (different people use different size needles) . I use the green ones (they come with syringe attached) to draw up the solution, and then I change the needle to the orange one which is finer and Inject in my thigh. After using the swabs to clean it. There are videos on Google and I found also videos on UTube that tell you how to do it. I was amazed really, because when I self injected, it did not hurt as much as when the nurse did it (in the top of my arm). There are other sites to get the B12 from (but some at the moment are only delivering to their own country. Again, there is information on the web to tell you where everything is available from. But I must say. I found that Versandapo.de (make sure you put "de" on the end of the name, and the needles from Medisave are just really good, and knowing that we are all here for each other is great. I paid for my B12 through my Amazon site, I just had to log in and paid straight away. I used Pay Pal for the needles. Anyhow, just a few tips, and I wish you good luck, but if you need any further advice, remember we are here for each other. Take care. Briarhillcat x
It really scares and alarms me that so many are being denied their jabs including yourself at this present time, virus or otherwise. The crisis is mainly in the hospitals and not the GP surgery and it is not the Dr's that give the darn jab anyway, but the nurses, so I can't see what the problem is with these surgeries and their nonsense?? I must be one of the lucky ones.
At the start of the shutdown, I did inquire about the B12 jabs and whether I could have the tablets instead of the jab - My dr said that they would not work for me, as I have the PA and so would not absorb into my system due to low stomach acid. She then went on to say, that I could defer my jab for a few weeks as my levels were still high, on the understanding that if I felt unwell, I was to re-book my appointment for the jab to be done - which I duly did and had the injection last Wednesday without any fuss. (a month late) I was still dubious about going, as I am in shielding.
Whilst I understand about having high levels in our system, it has to stay that way and being continually topped up, to keep ourselves as healthy as possible, so I think unfortunately you have to challenge your Dr and write to complain to the Practice Manager if necessary - even perhaps consider writing a review on their web page, that gets attention and hopefully a quick resolve!
The news keeps saying about people not going to their GP's/hospitals if they feel unwell or need treatment, so this is one of those times and you are well within your rights to get your jab. I would even say, you are feeling unwell, sometimes a white lie it has to be.
Hope it all works out and you get your jab done sooner rather than later. Let us know and keep in touch. But take care and be safe.
Thank you for your reply to my frustrating situation (like many others I understand) I've tried explaining to the clinical pharmacist & the Dr I spoke to just as you say it's important we keep up the maintenance on our health with the injections, I have said on here what has me most frustrated is, I'm told I can't have my injection just! to keep people attending the surgery to a minimum, when I protested & tried to explain I'm already feeling the need of my injection (due 26th of this month) the Dr said I could have a blood test in June 🤔to check my B12 level, so I can't go to the surgery for my injection but I can go for a blood test in June, why can't I just have my injection & keep my levels reasonable,
I've written to the GP that started me on injections, I've spoken to a Dr, (plus I tried telling the clinical pharmacist that told me I wasn't getting my injection that we need to keep up regular B12 injections) & I've written to my MP,( at the risk of you having read this) my MP's office sent ! my concerns to NHS England, who said .....as expected that I should see my GP (that was in a brief asi could explain it) I could scream at the lack of understanding of PA by medical people, I told them of the PAS agreeing we need our injections & the pharmacist asked who they were......I haven't quite given up yet, but I'm getting weary with the frustration of banging my head up a brick wall. ☹️
I totally get your frustration - and absolutely ridiculous that you can go for a blood test but not your jab - that makes no sense, as all could be done at the same appointment, as mine were. I had both blood tests and B12 jab. All you are doing is going for a nurses appointment which you would get anyway. I just don't get the dr's these days, they either make things up as they go along or do what they want to do. Or be stubborn fools and but we pay the price .
I don't understand why you practise won't let you have your injection , mine does. Its terribly unfair , how can they treat us so differently , depending on where you live ? My nurse did say worse case scenario I might have to self inject but they said they would supply me with the phial and the needles . This makes me so cross. People cant begin to understand how ill you feel if you don't have the jab in a timely manner and surely not having it puts us at increased risk of not being able to fight off Covid 19 if good forbid we caught it. I am weak and exhausted and breathless without mine …………… . Feel really cross for you , not any help I know but sending you PA and hope you get a jab soon x
It's a very frustrating situation (I keep saying that I know) it annoys me my surgery say all B12 injections have been stopped right across the country. ....grrrrr... they just want me to go away, as I've just said to Jollydolly I haven't given up trying but I admit I'm getting weary of banging my head up a brick wall....😖
When she told me that, I did reply that I knew that not to be true because of people at the PAS have said they are getting theirs, that's when she asked who the PAS was.....was it a group of friends....
Sorry to hear of your struggle to get your B12 injection. Luckily at my surgery they did the injections using all the social distancing procedures including giving me a simple plain mask to wear as well as the nurse and only allowing one patient in at a time, with antibacterial handwash also in use. I was in and out in seconds really. Maybe I am lucky that our Nurse has personal experience of PA and is aware that without the intrinsic factor we just get no benefit from Tablets. I really hope your surgery change their mind because I know even 3 monthly injections are not sufficient for me so to go without them totally would be disastrous and stop me from working from home and feeling as normal as I can feel.
I'm quite willing to stand outside & have my injection, I'm already wilting so dread to think how I will be after missing one injection let alone going a year (that's what my surgery keep saying,you have enough B12 stored in your liver)....
Hi Newsmom, I literally feel your pain, I am back and forth to my local authority (see lengthy post on here) the author of local guidelines did ring me this evening with his rationale but kept quoting we would be ok missing one of our regular jabs, but if symptoms return to contact the surgery, which I will be doing in the morning, I asked about being given the means to SI but he said that would need me to be trained, didn't mention I SI already.
My biggest issue here is the apparent ignorance of so many "experts" keep pestering your GP it does seem if you shout loud enough you will get your jab, good luck.
I totally agree about the seemingly absence of knowledge regarding PA from medical people , I got a phone appointment with one of the doctors at my surgery & she said the same as yours,if your syptoms return contact the surgery, I said but I'm speaking to you right now about how my body is saying it needs my B12 injection, she said well ring the surgery & arrange a blood test for June if you still feel the need, a blood test? just give me my injection, I've said this on here before, why if I can't go into the surgery for my b12 injection (because of covid restrictions) why is it ok to go in for a blood test to see you if I need my B12.....🤔
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