As some of you will know I've posted on here saying my injections are being stopped to avoid people going into the surgery because of the covid 19 virus, because like so many of us here I'm concerned about my injections being stopped, so i wrote a letter to the GP who started me on injections telling me they are for life, no response over a week after sending a letter, so I manage to arrange a phone call from the clinical pharmacist who tells me we store B12 for a year in the liver so I can manage, I ring the surgery & get a phone appointment the doctor who rings just tell me the same thing, that we can go year without our injections but when I say but I'm already getting the signs my body needs an injection she eventually says she will mention me at the afternoon meeting with the medical staff, she has rung me again to say the same thing, injections are being stopped to stop people going into the surgery.........then she says this.......if I'm really worried about my B12 levels they can give me a blood test on the 3rd of June, can someone tell me, why if I can't go into the surgery to have a B12 injection how then is it ok for me to go into the surgery for a blood test, I'm baffled....can anyone explain this to me, am I missing something? 🤔
Am I missing something?: As some of you... - Pernicious Anaemi...
Am I missing something?
Its really bad your practice are so ignorant.
Tell them ,ask them where to buy it?? As you cant go without.
Show them the bnf guidelines or anything else.
Ask them where they have read tiy csn store b12 fir a year with an absorbtion problem or PA .
Adj then why were tmyou put on injections for life.
Report them for gross misconduct.
This simply has to stop.
Ask for a prescription to I ject at home.
You won't get needles but you can get b12 .
Point out the ridiculous statement of going into the surgery for an unnecessary blood test but being refused tour essential b12 injection.
I'm feeling really fed up... I can't get my head around her saying I can go in for a blood test....but can't go in for a b12 injection......it doesn't make any sense, 😟
Hi Mewsmom
Irrational as this will sound, maybe 'blood testing' is considered necessary, urgent, essential etc, whereas B12 injections are non-essential as, it seems, one stores B12 in liver. Ummmm!!!!
It could be that is their rationale, even though totally wrong. They're so ignorant of the importance of B12.
Personally, having been through all the channels you have been through, I would write to GP to tell him/her that as you've been unable to make them appreciate the importance of your B12 injections on a regular basis, for the sake of my personal health, I have no alternative than to buy Vit B12, syringes and needles from the internet, until such time the surgery will return to my normal /required frequency of injections.
I'm sure they won't like the fact you'll get B12 from internet and will, perhaps, wonder if the internet is a safe place to purchase from. They might then change their minds. I wonder if they understand what the word 'pernicious' in 'Pernicious Anaemia' acutally means???
Good luck, there are many of us, including myself, buying B12 off internet and having to self-inject. It's not too expensive, straight forward and life-saving 
Hi JMN2017, perhaps you are right, but as the blood test is to check my B12 levels, why don't they just give me the injection as a continuation of treatment, but of course that seems to logical, the Dr that said I need the injections did actually seem to know how vital they are to health as he said to me at the time of my blood test results showing PA, 'if you were a relative of mine I'd give you those injections today' but I can't get to speak to or see him , I have written to him telling him of my worry's about the injections being stopped but no response, I'm beginning to feel that I'm ' a nuisance patient' but your so right, if they (the doctors) don't know enough or haven't experienced the effects of PA , well we are just fobbed off.
Yes, this situation seems to be 'an act of negligence' so quoting that might help you.
Also, NICE guidelines actually specify there is no need to test blood after injections have started, unless to check the initial injections are making a difference.
By the way, I recently had telephone consultation with Medical Consultant (re Thyroid meds) and he commented that he noticed my B12 level was 'toxic', at 700 approx. I nearly laughed out loud but managed to keep quiet somehow. It wasn't worth going down that road My GP surgery hasn't contacted me about it so I assume they actually know better than to worry.
Yep, they're all idiots regarding B12, well, most are ignorant of the facts!!!
Good luck
I was due my injection by 16 March, 5h day we started self-isolation (both my wife and myelf are 70). Because of the worries about going out the surgery nurse and I agreed to defer the injection.
Although I started taking a B12 supplement it reached a stage where I balanced up the pros and cons and have agreed with the surgery to have the injection this afternoon.
I will drive over and park in the car park. The nurse will then come out and give the injection.
I still have concerns about going beyond the house boundaries but my family and I agreed it is neessary.
The surgery have been very co-operative.
I understand your concerns about leaving the house at this very scary time, but good on your surgery for it's understanding of the importance of our B12 injection's 👏
They should know very well that blood tests for B12 are useless , because they will be high if you have been receiving B12 injections . Total waste of time . But they think it will shut you up when they can tell you that your serum levels are high . They will regard this as a victory over you . when they can tell you how high your levels are . So they don’t mind disregarding their own rules to do that . Phone them and tell them to read the instructions about not giving any blood tests for B12 once injections have commenced . Just shows you what hypocrites they are .
Thank you, I was left feeling like a hypochondriac after the phone call's from the surgery,
I don't intend having the blood test as I too was under the impression it would only show my stores were ok because as you say.....& I did say this to the Dr.....I'm having regular B12 injections.
Sadly many are made to feel like hypochondriacs due to the lack of knowledge by some doctor's.
Can't print what I'm thinking about it all.....🙊
I know exactly what you mean!
I'm one of the very few who has a surgery that actually rang me to say come for your injection as it is overdue! This was in March. I told the receptionist my Dr knows I self inject & she asked me how many I had left. When I said enough for 4 months, she said just let us know when you're getting low & I'll ask the Dr if it can be prescribed for you to do it yourself.
As I was unsure what's happening virus wise, my delivery of another 100 ampoules will be here today.
If only all Dr surgeries were as educated as mine. I feel so very sorry for so many being left to suffer 😪
Hi,
I left a long reply in this next thread with info on impact of pandemic on B12 treatment.
healthunlocked.com/pasoc/po.....
It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped.
I wrote another very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.
healthunlocked.com/pasoc/po...
"They should know very well that blood tests for B12 are useless , because they will be high if you have been receiving B12 injections "
There is something in the document in the next link about retesting after treatment is started,being unnecessary. Can't remember which page in the document though.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Testing B12 during treatment (English article from Dutch B12 website)
stichtingb12tekort.nl/weten...
I am not medically trained.
The doctors at your surgery have been misled by advice from the BSH. This advice was changed after consultation with the PAS. Write again and include a copy of the new guidelines -
b-s-h.org.uk/media/18259/bs...
Alas, even the revised advice has the ‘stored in the liver for a year’ myth, based on one non-rigorous report from 2016. [EDIT: but at least they have moved it to ‘Dietary’.]
But still, having carefully determined before the pandemic that most of us with B12d need injections, and granted us them, why suddenly decide that oral B12 might be OK after all?
Nothing has changed with COVID-19 for we sufferers, even though things have changed radically for the medics, so that oral might be OK is just a straw that the medical profession is clutching at, to salve their own consciences about doing nothing for us while they need to spend their time alternately fighting, and dodging, this dreaded virus.
I read the revised advice by the Haematology .....it didn't have the "store fore a year" .....but last night I sent a copy to my son (just to keep him up to date ) ....that store for a year was back!!!
Whether it's me getting the info sheets mixed up/in wrong order I don't know 🤔
No it doesn't.
It does say that people with a dietary deficiency "may be vitamin B12 replete with adequate levels within the liver, and therefore may be able to safely stop taking vitamin B12 supplements possibly for up to a year"
Hi, I have a friend who is B12 deficient he takes the oral tablet, but I've definitely been diagnosed with PA & my doc told me at the time it will mean injections for life, I'm so frustrated honestly. 😖
Yes, sorry, they moved it to there. Do we think it’s even true of dietary deficiency though?
But I have edited my post above to include the correction, for which thanks.
There’s quite enough misinformation about B12d out there without me adding to it 🤭
The friend on B12 tablets is taking metformin, that is known to cause B12 deficiency.... tablets are sufficient for that kind of B12 problem....but not I feel after everything I have read any kind of replacement for an injection for PA even though the surgery (or at least some drs) is pushing me to go on oral replacement & I have to pay for those, perhaps it really comes down to cutting costs & P A patience are an easy! target .....s c r e a m .,..😏
Yes, it is true of a dietary deficiency.
In normal people, B12 in the liver is excreted in the bile into the duodenum. There it binds to IF and passes into the ileum, where it is reabsorbed. This recycling means that normal people can survive for a long time without B12.
If somebody has a B12 deficiency caused by a lack of diet - and that deficiency has been adequately treated for long enough - they will also be able to use this recycling method to access stored B12.
But if you have PA you cannot absorb any of that B12 that comes out in the bile - it just passes straight through, and out of, your gut.
Hi, I did tell the clinical pharmacist that rang me, she said I must have that wrong , that's when I mentioned the PAS & she asked ....who's that? a group of friends...... honestly she said that, 🤦
My surgery told me the exact same thing. Stopped injections to avoid face to face contact but after trying tablets they will give me a blood test! Also the surgery have only stopped the b12 jabs. My daughter needs an injection for another condition and she can have hers as normal. My gp admitted that this is a national plan to move as many people as possible off the b12 injections and onto tablets so in effect it's an experiment in the middle of a global health crisis
But they should know that Pernicious Anaemia can only be treated with B12 injections FOR LIFE ! Where is the scientific evidence for PA patients to be treated with tablets ? We need chapter and verse on this ....... And there is none .... It’s a huge scandal . Are other civilised countries doing this ? I believe not .
I totally agree with you re moving people off the B12 injections, as you say your daughter can still (good) get her injection & as my surgery say I can go in for a blood test I have wondered if there was a move to stop injections for B12.......it's appalling & very worrying for PA patients, thank you for your message.
"I have wondered if there was a move to stop injections for B12.."
There is evidence out there already that in UK people are being moved onto oral tablets permanently; not just for duration of Covid pandemic.
Blog post about Gloucestershire B12 treatment April 2020
b12deficiency.info/blog/202...
PAS blog post about oral treatment from 2016
martynhooper.com/2016/08/02...
Hi, I've read the links in your post, yes I can recall people being told/ given raw liver to eat to 'cure' anemia type ailments.....well as things seem to go round in circles we will probably be told to start doing that when we tell the doctor's the tablets are not helping...🤢
Just as well I like liver although rather eat cooked liver....
Yes, that was partly true back in the 1940s. People were very ill and it was not just Anaemia. They did not know what it was so people were given half a pound of liver a day and managed "not too badly". Then after research there were 3 doctors who found the cause and were given the Nobel Prize and also a lady who carried on research and helped as well. So that is where "Raw Liver" comes from. As I am vegetarian, that makes me shudder to think about it! Injections are the only thing that works with Pernicious Anaemia.
The PAS are very worried about this and have written to my local CCG group. In the meantime I'm using sublingual tablets but may end up going to my local pharmacy and getting a private injection for £30. Take care x
Totally agree. The extra hassle of sending people for blood tests etc is surely just an added drain on the NHS x
At the head of this national plan to alter established B12 deficiency treatment (without consultation, patient consent, contact or monitoring) - is there a politician ?
Perhaps that infamous Friend of Broccoli ?
I can't believe that this is the wish of GPs - who have seen us at our worst, who have often spent years trying to get us well and on the right injection frequency to help us as individuals, and sent us to many consultants when it became worryingly clear that what is prescribed treatment is actually, in some cases, insufficient to stem deterioration ?
What a dangerous unravelling of hard-won progress.
That can't be the way forward.
It isn't even the way backward - it really is an experiment.
As for this "liver store" theory , that goes, with the "toxic", "addictive" and "broccoli"ones - straight into Room 101. They are going to have to come up with better stories than this if they want to sound at all credible.
Or maybe, during a pandemic, they don't have to ?
If your surgery can get away with making you risk going in for a blood test that you don't need, but denying your request to go in for an injection that you do need as continuation of lifelong treatment- then perhaps making sense no longer matters !
I would look at the link from fbirder - and rely totally on the revised BSH advice to make your case for you.
If your surgery won't listen to you, they surely have to acknowledge these latest guidelines.
Let us know okay ?
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