I was refused my b12 injection for PA 18 month ago by my gp apparently new research came to light ,antibodies was negative so I do not require lifelong injections no more :- is this even possible ? I was told when diagnosed 11 year ago it’s lifelong as my body dont absorb it do t matter what oral supplements or food I take or eat .13 month ago my life changed for what looks like is going to be forever 
I woke up with the most herendous stabbing pain in my face and head and things continued from then iv sufferd with all kinds of symptoms of pa over the last year iv severe tintus . Daily headaches, parasthesi in face and legs constart pins and needles in hands and feet . Vertigo and sickness everyday muscle aches and pains Stiffness to the point some days I cannot walk muscle swelling, muscle spasms my head twitches to the right I suffer breathlessness and chest pain anxiety depression. I constantly have soret tongue and mouth and have sore slits at the side of my moth I haven’t been able to shift for the last year . and the list goes on .everyday is a struggle. iv had mri scans of my head and neck my back been referred to ent and neurologist. balance clinic and still am getting refused my injection , my gp is now saying I was wrongly diagnosed. 11 years ago ( during pregnancy) in his practice bare in mind .he tested my antibodies and said that because they negative I dont have pa or need injections what iv had for the last 11 year I’m shocked to say the least . Iv had a helicobactor test done as my hemotoligist didnt think this should have been the case and my b12 jnjections shouldn’t have been stopped . That came back fine my b12 levels have just dropped over the last 18 month from over 1000 to 6 month ago 269 apparently that’s fine even know I have all these symptoms even my neurologist said he has seen this before and that he suggests I have b12 injections to see if symptoms subside . But my gp hese my gp he has my best health interest at heart . Haha !!😡To me that don’t seem the case at all ! I really do not know what to do from now as I’m over due another bloods test now and with everything going on don’t think it’s going to be done anytime soon . I can feels it’s not going to be good really need this sorting asap. Before all this beside having spinal surgery in 2011 I was healthy and took no prescribed drugs . I’m now prescribed sertraline . Baclofen,amptryptaline, prochloprezine paracetamol naproxen andibrufon what I need to take on a daily basis it doesn’t seem right when all I could need is a b12 injection . Iv been diagnosed with all kinds from vertigo tintus degenerate disease to anxiety and depreeion in this last 15 month and it’s all down to this Somone please help I’m going out my mind with this now iv even had one doctor look at my reports from neuro and ent and prescribe me load up injections for 2 weeks then when I went for them my own doc refused to give me them as he said he knows best basically He it cos he will not admit he has done wrong and is now saying I don’t have PA . It’s all absolute crazy I crnt get my head around it tbh . my mam asked him when was he going to give me a b12Injection at my last app as my levels just keep dropping and dropping and my symptoms getting worse and not subsiding , are you going to wait till see really cannot breath at all and hospitalised before you do anything his reply no that’s not what I intend to do but I’m going to keep an eye on her check her again in 6 month .:- she may require something then we will seewhen results come bk but not lifelong injections he says ??? I even stated was it about saving money because surely this has cost nhs a hell ov al lot more ! Thanks ia
Gp stopped my b12 injection and Iv ha... - Pernicious Anaemi...
Gp stopped my b12 injection and Iv had pernicious anemia 11 years , is this allowed apparently due to new research says my gp
The test for antibodies to Intrinsic Factor is wrong in 50% of people with PA. onlinelibrary.wiley.com/doi...
The new research your doctor mentions isn't new at all. It's many years ago that some GPs found that treatment with pills (especially those paid for by the patient) is much cheaper than injections. The pandemic is just a great excuse to move people onto pills forever.
Hi,
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
healthunlocked.com/pasoc/po...
Have you considered joining PAS?
They should be able to pass on useful info. There are useful leaflets/articles that PAS members can access in library section on website.
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....
Support meetings are cancelled during pandemic but you may be able to speak informally to a group co-ordinator if you join PAS.
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.
See link to another thread at top of this post for links to UK documents.
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.
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.
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.
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.
If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.
If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.
Impact of Pandemic
Unfortunately this is an extremely hard time to argue for reinstatement of injections.
Many on forum have had B12 injection stopped/delayed or swapped for oral tablets during Covid crisis.
Many on this forum have been put in a situation where they have no alternative but to source their own supplies and self inject.
Injections stopped due to pandemic
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
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...
PAS statement published 11th April
pernicious-anaemia-society....
Blog post about Covid crisis from B12 Deficiency Info published 18/4/20
b12deficiency.info/blog/202...
If you're in UK, be aware that the British Society of Haematology (BSH) has issued advice for doctors to use 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.
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.
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 am not medically trained.
Is it possible for you to get your own. ?
In the current climate everything is on hold
. If they have been stopped for over a year
it's going to take time to get them.
You could try a telephone consult after sending a letter (which has to go in your notes) stating what the specialists have recommended and the whole list of present symptoms.
The list of drugs you are on have all been offered to me. The very same ones.
Also very similar daily symptoms.
Get your treatment back however you can .
Loads of info on here.
You need yo start turning things around .
It's going to take time
Tiuve had it seems alm the tests. Have you had thyroid iron vit d ect as well?
Always best to delete other possibilities too.
I hope you get tour treatment soon.
.
Thanks for reply I have been considering this for a while now but haven’t as I don’t want to skew my real results if ya get me . I wanted him to see exactly what my body needed but it seems that don’t matter and atm with everything going on it’s going to be a long time before I even get my lates results . Iv had a few things checkd tbh but don’t know exactly what I really think I need to sit and do some reaserching myself and get ontoy go ASAP thanks again your help is much appreciated I’m only 31 and have 4 children to look after I mustn’t leave this no longer the more I’m reading on here about other ppl actually scares me to think of nothing does get done by docs what will happen ?? Can this get worse ! I really hope not thanks again
I wouldnt worry about skewing results. The doctor only using them not to ttrest you at present anyhow at present.
The specialists should've written ti tiur Gp.
My Go didnt follow a neurologists advice recently.
Gps are very often out if their depth with PA.
They work and rely on face value blood tests . Tiue symptoms will aksi be marked to a certain extent because if the medication prescribed to treat your symptoms but not the cause it seems.
So do not worry about self tresting in this current climate especially.
Write your letters to Gp. That is important as recorded. Gps treat symptoms. Its also unfair if soecislists to put you back to Gp without proper instruction or care plan.
Are you a member of the Pernicious Anaemia Society ? I think it would be worth joining.
Martyn Hooper, the founder of PAS, had to be tested for Intrinsic Factor antibodies three times before he got a positive result. The IFab test is unreliable: can be wrong (false negatives) 40-60% of the time, but if positive result, is 95% reliable !
So one negative result means nothing at all. You certainly would not stop treatment based on this. If you have had a PA diagnosis, there is not a cure for this. Never has been. The B12 you are given just stops you becoming increasingly B12 deficient. So your GP is wrong.
I'm not a GP, but the splits in the corners of your mouth are most likely to be angular cheilitis. I had this condition for about 15 years. Not any more !
It took me about 5 years to improve other symptoms but this one would not shift despite frequent injections. I went to an Oral health consultant, who said that this is a bacterial condition, that it can be related to vitamin deficiencies, and that while he waited to see if the swabs produced any interesting cultures, he suggested I use nipple cream ! It worked almost immediately. I got a tube, wash hands, squeeze a small amount only once onto finger and apply, twice a day. Don't go back for more as can recontaminate or use anything else, like lip salve etc. as can harbour germs. If using nipple cream from a pot or tub, use a spoon (not finger). You could try this, as it can't hurt.
He also said that if your ferritin level is low, it would help to get it above 80ug/L. I got as far as about 60 ug/L, but couldn't get it further -and he was happy enough with that.
This is only a small part of your problem, I know. Please don't waste your valuable energy trying to change your GP's mind on this issue, or deteriorate further just to prove you are right. You are. You don't need a battle, you need a better GP. That's for later.
Right now, you need B12 more than anything.
Thank you cheryclaire ,no I’m going to have a look into that today see if I can get a little further forward . I think I need to get a different gp. Also thanks again
I am sorry to hear about your situation, understand it feels unfair and unjust - but you shouldn’t screw yourself trying to make the point to your GP. Get B12 injection right now and then write a letter and request to change your GP.
Are you in the U.K? Royal Mail isn’t working well so not clear how quickly they can deliver but I can send you 2 ampules of B12 and syringes.
Thank you all for your reply’s honest ya don’t know how much all these comments means to me .My gp has even tried to turn my mind around and try to challenge me onwhat I do and don’t know about pa before telling me I now after 12 years haven’t got it . However I have a letterfrom 2009 stating I have pa and need life long injections . I was having them 4-6 weekly at one point then they only gave them 12 weekly I was suffering enough then ! It nice to be listend to and not just made to feel like it’s all in my head and anxiety and depression and other health problems I have . Tuscansun thankyoh so much for your offer i actually have some hydroxxocbalamin 1mgsolution here what’s doctors was going to try and see if symptoms subsided before my doctor canceld when I turned up to get the first day of loading but I don’t have no injection . Tbh I am clueless with all this stuff I need to do some more reaserching wouldn’t even know hm to give myself or anything. Or even how often .it make me so anxious thinking about having to do it myself . I am in uk yes . And thanks again thank you all your help is much appreciated 
as fbirder says - the research is far from being new and what is being ignored is a lot of subsequent evidence showing that high dose oral (>1000mcg daily) doesn't work for a significant number of people (could be as high as 1/3).
Unfortunately many GPs are at best useless when it comes to B12 absorption problems.
And you are right that long term withdrawing injections like this will cost the NHS a lot more.
The BCSH guidelines refer to IFAB-negative PA because the intrinsic factor test is so insensitive.
Hi Gambit62,
"what is being ignored is a lot of subsequent evidence showing that high dose oral (>1000mcg daily) doesn't work for a significant number of people (could be as high as 1/3)."
Do you have links to any of the evidence?
I think there's something in this Mayo Clinic article.
ncbi.nlm.nih.gov/pmc/articl...
I expect to get a letter stopping B12 injections soon from my GP surgery and am planning my response and would like to include some of the evidence.
Thanks
smw.ch/article/doi/smw.2017...
sorry but haven't got time to go through and find other references but I have given others in other responses
Am so so sorry to hear of what has happened and the disastrous effects on you. Your GP needs shooting and frankly one has to wonder at his competance. However right now you need to think about you and what you need. Forget the rights and wrongs of the situation you find yourself in and order your own b12 vials, needles and syringes. You need to do this as not having the b12 is causing you harm. You are suffering. Your arrogant ignorant GP isnt. In your shoes I wouldnt leave this any longer or you will pay a heavy price.
When this pandemic is over I would move practises to a GP who WILL listen and cares. In the meantime self injecting is your route. Take care.
Change your GP
You are in a terrible position and can find lots of wonderful advice here, I put off self injecting to get bloods done on the hope of more frequent injections and it was a mistake, I just got worse and they said my results were borderline. Sometime we have to just give up being in the right and help ourselves. Once I got my supplies and started si I felt so much better and in control. I wish you all the best with all my heart!!
You can search YouTube for videos how to self inject B12 - and can start with 1 per week.
I wish you fast recovery - please do all you can to help yourself.
You have my sympathies Ash24. The more I get involved with the Medical Profession the more I am convinced that when it comes to our condition, PA or B12 deficiency, they are not much better than Snake Oil salesmen.
I had one practice nurse tell me that we, on such forums, are cranks and hypochondriacs. She actually said she only let her mother have half an ampoule of hydroxocobalamin as any more is toxic.
As they have recognised I do have quite intensive peripheral neuropathy once they saw my blood sugar level had gone over the guideline of 5.4 things per at just 5.5 I must be diabetic. Nothing to do with B12. (After our a year of monitoring it is now down to 4.5 and that is having sugar in my tea, frequent chocolate evenings, whisky every night, plenty of stewed fruit crumbles and my own jam on toast a scones. Without the sugar I go into hypoglycaemia.
Recently a neurologist asked me how I dealt with the worst symptoms of the neuropathy and so I showed her my diary of injections obverse 2 years with intervals of 7 to 10 days. She has put it into writing that she doubts I am getting the relief I maintain, cheeky git. Does she think I am imagining it or making it up or just plain crazy.
This bloody idiot has now got the GP taking further blood samples to try to prove I have something else and the direction of her investigations is tending to Myeloma.
I did mention to some they look at the PA society website but they think that is a bunch of nutters as well.
The only answer to this, in my humble opinion (just kidding) is that self help is the best solution. You cannot overdose on this vital beautiful Carmine coloured elixir we can inject so painlessly into our mid outer third of our thigh muscles. Long may we be able to get it from Germany. And send Versandapo a copy of your letter telling you you need lifelong injections of B12, they might take that as the doctors prescription.
Go for it, you won’t regret it, none of us have.
(This of course is just my personal opinion, I have never been medically trained, which might well be to my benefit in this case)
Hi,
"She has put it into writing that she doubts I am getting the relief I maintain, cheeky git."
If in UK, you can ask for a note to be inserted into your records if you are unhappy with something.
ico.org.uk/your-data-matter...
Doctors do not have to change a diagnosis if you disagree with it.
We haven’t even started down the discussions of the consultation with the GP who arranged it yet. There are many questions to be answered and blood test results examined. The Covid 19 problem is concentrating their minds at the moment so the inaction of the surgery is suggesting there is nothing sinister or urgent in the findings.
Over the years we have had a number of differences of opinion and I do make a point of documenting everything when there are important matters at hand. This matter is not yet resolved.
I don’t trust any of them anymore, they have been so very wrong on the past, there is nothing suggesting anything has really changed.
In a similar situation I would probably write a polite letter to GP and the neuro along with a request for it to be filed with my medical notes.
In the letter, I would attempt with evidence to point out any errors in her letter.
To my mind to say that she doubts the level of relief you are experiencing is tantamount to saying you are lying.
After what I went through for years trying to get help from several neurologists, all except one were dismissive or rude, I find it very difficult not to be confrontational.
I don't trust them any more either....
I have already written a very polite carefully worded letter and decided it was far too soon to go into print. There are still the investigations she has requested outstanding.
She had also arranged for electric testing of the small fibre nerves in my legs to determine the exact extent of current damage. This was scheduled for the 8th April but was postponed on the third day of lockdown.
The consultation with a haematologist she wanted hadn’t progressed to an appointment so is still in abeyance.
There is a long way to go yet with this, always assuming Covid 19 doesn’t get involved. Overweight, hypertensive, possibly diabetic, atrial fibrillation and seventy six puts me into a category where the future is at considerable risk.
However it is viewed I am no worse off than I was before her, probably slightly better as the peripheral neuropathy is a matter of record now rather than a notion of a sufferer. I have over two years supply of B12 injections and a ready supply route in Germany so can continue with the high dosing she doubts to be effective.
If she is correct and her suspicions of something other lurking in the background is verified then better to let that be identified. Her dismissal of the observations of the worlds leading expert on my state of health can wait. This is a win win situation.
Thank you for your replies. Being able to discuss this with others is so important but the attitude of the medical profession these days precludes this.
To be fair to the neuro, at least she has arranged for electrical testing of nerves, I have never had this despite having neuropathic symptoms for over 15 years.
So pleased that you have your own supply.
I read an article once about how B12 injections were once used as a treatment for neuropathic pain caused by shingles.
Now there is an article I would love to read. This is effectively what I am finding with what I do every seven to ten days. I had shingles in ‘91 and would have happily tried that; it was the worst pain I have ever had, before or since. I was also working very long hours at the time during the completion of Eurodisney supplying all the kit for part of Main Street. I would have tried anything.
What has really got up my nose with this consultant is the attitude that she can’t find any study anywhere which tests or proves what I say happens. That someone is giving her a report of it from personal experience doesn’t have any credence because she cannot find a paper describing it. She may be extremely well read but she has no curiosity.
I had this once before and was wrongly diagnosed and treated for 7 years. Then I found a consultant who said I have no idea why you have this problem but I am going to find out. We became good friends over the next 2 years. Keyhole surgery gave me my life back. He didn’t say there wasn’t any literature describing it. He then wrote it. He would love this but is now long retired and researching something else.
Articles about shingles and b12 injections
bmj.com/rapid-response/2011...
ncbi.nlm.nih.gov/pubmed/304...
Thank you so much. I wish this had been available when I had shingles. A friend has recently had it but was told there was nothing to be done so it isn’t a message getting anywhere. When it is being effective in treating nerve damage you would have thought it would be something all GP’s would want in their arsenal of weapons.
The second one is precisely what that consultant said she couldn’t find - a study showing high dose use could be effective in reducing nerve damage pain. So much for her small Japanese study not finding it.
Thanks for your interest.
I am so very sorry Ashp24. That study is used in Canada. In my province they tell us how there is proof that 1% is absorbed, it is like a canned speech. We still get our shots, but you can easily imagine that the change is coming soon.
B12 testing came off our CBC panel to "save millions" in healthcare.
Meanwhile millions of dollars are wasted as they try to figure out a myriad of symptoms that have ended up to be all due to a b12 deficiency, that went unchecked. Nonsensical decisions. That adversely affect the province's pocketbook and can cause irreversible health outcomes.
I look forward to your change to self-injecting, if you decide on it. You will probably smile and wonder why you waited so long. Or that the fears never came to fruition. And it will be peaceful to know that the most severe symptoms, the ones that impact daily life, will be in your hands. Not an ill-informed doctor.
All the best to you.
Mates at the pub
A group of men who had been friends and pub buddies for many years greeted Paddy as he entered the bar.
“Evening Paddy; you’re late where you been mate?”
‘I’ve been to see me doctor’ said Paddy’
“Hope it is nothing serious Paddy”
‘It is very serious’ said Paddy dourly.
“OK, are you going to share it with your mates? A problem shared is a problem halved you know”
‘Me doctor says that I have to give up drinking!’ Paddy exclaimed.
There was silence for a while as his mates digested the news.
“You poor bastard!” said one.
“Paddy we sure gunna miss yah” said another.
“What ya gunna do Paddy? asked the third.
‘Paddy replied simply and emphatically as he picked up his pint. ‘Change me doctor’
You are so right We do need our B12 injections regularly. Pernicious Anemia is not just a B12 deficiency, we cannot absorb B12 orally, as the stomach just throws it out. Anyone without the intrinsic factor needs the injections.
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