Pernicious Anaemia Society
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GP stopping my B12 injections. Replacing with oral B12

Hi. At my last appointment for my B12 injection, the nurse explained that new research had revealed that oral B12 could now replace injections. I explained that as I had been diagnosed with pernicious anemia I would not be able to absorb the oral B12. She then explained that new research was suggesting I was misdiagnosed with pernicious anemia. I was totally confused and unable to follow the reasoning. I have tried researching on the internet this new policy but have been unsuccessful. Can anyone shed any light please? I intend to get a consultation with my GP before my next injection is due.

I was diagnosed with PA and B12 deficiency after severe neurological symptoms. Legs and arms going numb on standing. Occurring at least 6-8 times a day. I saw a neurologist who confirmed it was due to long term B12 deficiency. I have injections every 12 weeks and see symptoms returning after around 7-8 weeks, but not as severe as before I started having injections. I am so concerned about this. Grateful for any help. Thanks.

47 Replies
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Hi Holly2201 If you are not already a member join the Pernicious Anaemia Society click on the link below and scroll down

healthunlocked.com/api/redi...

They may be able to intervene with your doctor

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Hi,

In UK, recommended treatment for PA is lifelong B12 injections.

See links below.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

I would echo clivealive 's comment and suggest joining PAS as soon as you can.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone so can leave a message.

PAS support groups in UK

pernicious-anaemia-society....

There are stories on Martyn Hooper's blog about how PAS has supported people whose injections have been stopped or replaced with oral tablets.

martynhooper.com/2017/07/01...

martynhooper.com/2017/06/22...

martynhooper.com/2017/03/22...

martynhooper.com/2016/08/02...

The cynical me thinks cost-cutting exercise....

Another blog post about help if injections have been stopped

b12deficiency.info/blog/201...

I am not medically trained.

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Hi. Thank you both. Regarding joining the PAS, I cannot afford at the moment but will do so when I can. Thank you for the further links, I will check them out. I was hoping you had heard of this so called research which suggests I no longer should be diagnosed with PA - something to do with "intrinsic factor". Apparently, new research suggests I was misdiagnosed at the time. The nurse said "only those with PA should continue with lifelong injections". I find it hard to believe that I am able to absorb B12 as my symptoms where so severe and a neurologist explained them due to being deficient for so long.

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More B12 info

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

There may be copies of these books available from local library service.

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I do hope that you get your injections reinstated . Ask the surgery to quote you chapter and verse on this “new research” You need to know who did it and where it was published . And you need to see the evidence . The Pernicious Anaemia Society needs to see it too! Also ask how you could have been “misdiagnosed “ You actually need more regular injections if your symptoms start returning after 7-8 weeks . Hope you manage to get this sorted . Let’s us know the outcome please . And bear in mind that many of the members here have difficulty in getting sufficient injections and are obliged to self-inject . This is really cheap if you buy in bulk (100 of everything -cost just over £1.00 a jab !)

Very best wishes to you . Remember , you have friends on this forum !

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Thank you so much. I have been unable to find any new research myself and will ask my GP these questions. I will join the PAS soon and ask them to help if I'm not happy. So worried that these symptoms will come back in full force without the injections. I will definitely go down the self-inject route if I have to. Strange now but at the time, it was conveyed to me that there had been some new research, implying that the majority of people at my GP surgery had been misdiagnosed and mostly all would now have their injections stopped and replaced with oral. I am surprised that I haven't found an uproar on the internet protesting about these "new" findings. Thanks

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Hi wedgewood. I updated this post today below. Thanks for your help.

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I am not medically qualified but know that those with a B12 deficiency have a stomach problem that cannot absorb B12 and that's why we have to have injections.

My mother's doctor told her that her bloods were now 'fine' after about 20 years of injections. No other supplements were suggested but my mother died wit th stomach cancer which might well have been avoided if her injections weren't stopped. My sister and I initially thought that this was a good decision as we had no incling that it was a dangerous slope. After a few years of becoming more and more unwell it would appear no other doctor looked at her history.

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It's worth noting that PA is not the only reason why some people don't absorb B12. I've been tested for PA three times, each time the results have shown I don't have it. But for some reason (I'm not vegetarian) I don't absorb B12 from my diet, so my GP commented that if I don't absorb B12 from food, I won't absorb B12 from tablets, so injections are the way forward. His final comment was "some people simply don't absorb it very well, so we just give them 12 weekly shots."

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Hi. Thank you. I was diagnosed with PA. I was given all the literature on it explaining what it is etc. I take folic acid daily and the injections. Now I am being told that new research suggests that was a misdiagnosis and I don't have PA. I do know that the injections quickly eradicated my symptoms, although I do think I need them more often than 12 weeks. It's interesting what you say. I am interested to know why they no longer think I have it. Why I have been having these injections for this long and now they will be stopped. I find it hard to believe tablets will work due to the problems with absorption. I have always had a very healthy diet with plenty of meat, fish, eggs, veg etc. I eat very little processed foods. How could these symptoms have gotten so bad. Like I said, the neurologist said they were due to being deficient for such a long time. Thanks to everyone for the replies. I will challenge this.

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Hi again,

"unable to find any new research myself and will ask my GP these questions"

Might be worth putting your questions about the "new research" into a letter to GP which politely requests a response, as probably harder for GP to ignore letters.

PAS will almost certainly know about any new research concerning PA.

Have you looked at PAS news items to see if there is anything about "new research" suggesting people have been misdiagnosed?

pernicious-anaemia-society....

I would like to know what medical journal this "new research" has been published in.

If there really is "new research" why is the recommended UK b12 treatment still injections of Hydroxycobalamin? See B12 documents links in my post above.

BNF

bnf.nice.org.uk/drug/hydrox...

Cobalamin is the scientific name for B12.

In some ways it should not matter whether you have a PA diagnosis or not. You had low B12 and the symptoms of B12 deficiency and you responded to B12 treatment.

Recommended UK treatment for patients with B12 deficiency WITH neuro symptoms (which you had at diagnosis) is a B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

I suggest reading the summary of mainly UK B12 documents in third pinned post on forum.

healthunlocked.com/pasoc/po...

It's the last link in the list above.

Glad to hear you are challenging this.

Do you have someone supportive who will accompany you to appointments. GPs might be kinder if a witness is present.

Help for GPs

Might be worth referring GP/nurse practitioner to section for Health Professionals on PAS website.

pernicious-anaemia-society....

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Thank you. That is very helpful. I have organised a telephone consultation with my GP for next Tuesday. I will use that as a starting position. I will be armed now with a lot of information I can discuss/present. I want the injections reinstated and will resort to letters and complaints if I get no joy. I do intend to get advice from PAS too. I will update this post after Tuesday. Thank you so much.

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Might be worth sending letter to GP which outlines politely what you want to discuss, to arrive before Tues tel appt.

This would hopefully give GP time to look up any B12 documents you refer to and to do their own research and possibly to look at PAS website etc.

I would warn you that some GPs may find it difficult to cope with patients being more assertive and Gp/patient relationship may be affected.

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Thanks. I will try and do that and get it off tomorrow. I understand about the affect on the relationship. I will be as polite as possible. I also have a copy of the letter regarding the neurologist's report to the GP. This states that should the symptoms not clear or resume at a later date, he will see me again and investigate further by way of scans. Surely this is much more costly in the long run.

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Hi Sleepybunny. I provided an update today below. Thanks for your help.

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Hi Holly2201. Oh dear...this is something that we are hearing more often in the forum...and it's wrong.

First a couple of comments and then on to the research that they refer to 😖.

The first obvious thing is that a neurologist has confirmed that you had severe long-term B12 deficiency. So whether you have PA or not is a moot point, since the treatment for PA is treatment for the B12 deficiency it causes. Ergo, the treatment for B12 deficiency is the same. And for those with neurological symptoms, in the UK the treatment for those with neurolgical symptoms is via B12 injections (not tablets - more on this below).

Incidentally, [oh woops...posted by accident...still working on this post...will re-post with rest when done (in a post-'flu jab fog 🤔🤧🤒)....

So...here's the rest...incidentally...the fact that your jabs run out at weeks 7-8 is a clear indication that you need more frequent injections. Those with neurogical symptoms should receive a maintenance dose of B12 every eight weeks (as per BNF prescribing guidelines...third paragraph down in the link...most GP's don't read that far so you may have to point it out:

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Eight weekly is not enough for many people - a good GP who understands B12 deficieny will recognise that injections should be given frequently enough to keep symptoms bay (despite the one-size-fits-all prescribing regime currently available).

If you still have neurolgical symptoms you should be having every other day injections until there is no further improvement (as per the BNF in link above).

So...about the research...

1. My understanding is that the research only investigated any rise is serum B12 levels and did not investigate clinical benefits or, in other words, if symptoms were relieved and if effective repair was taking place to all the systems that use B12.

2. Some countries do use high dose tablets or sublinguals to treat B12 deficiency, but only after loading doses via injection...and symptoms are monitored for clinical effect (because they don't work for everyone). Injections are used for those with neurological symptoms (before swopping to oral treatment) and those who don't respond to oral treatment (the symptoms come back) are changed back to injections. Swiftly.

3. High dose tablets or sublinguals were used in these trials but these are not licensed for use in the UK so any prescription from a GP will only contain 50mcg cyanocobalamin - enough to treat a dietary deficiency (often experienced by vegans) but certainly not a high enough dose to treat those with B12 deficiency caused by absorption problems (the majority of those with B12 deficiency (from any of the many causes). And most certainly not sufficient for anyone who has neurolgical symptoms or experiences the return of symptoms prior to the next injection.

4. Sublinguals work for some people, but not for others. Very few people here report having a good effect from tablets or sublinguals.

5. The absorption rate from injections is 100%. The absorption rate from sublinguals, tablets, nasal sprays etc. is approximately 1-3%. At best.

6. In the UK, B12 injections are the only recommended treatment for those with neurolgical symptoms.

7. Some GP's in the UK are mistakenly interpreting this research and using it to stop treatment with B12 injections, replacing the injections with the low dose 50mcg tablets (insufficient dose for adequate treatment).

So...your health care professionals appear to be playing fast and loose with this research.

There are no changes to the current treatment regimens in the UK (as per the BNF, BSCH Guidelines, BMJ Treatment Review, etc.). Some surgeries appear to be trying to sneak in these changes via local local treatment regime updates...and these are not inline with any of the current recommended treatment guidelines.

Sadly, this appears to be related in a drive to cut down on costs ('efficiencies') 🤬.

Not at all sure what your nurse means in terms of a PA 'misdiagnosis'. You were most certainly diagnosed with B12 deficiency and, as others have said, this can be caused by many things, not just PA. But the treatment is the same, so,withdrawing treatment on the basis that you don't (apparently) have PA is...well...nonsense.

Here's a couple of things you may like to ask your GP (off the top of my head)...

>what tests were originally used to diagnose PA?

>what research now indicates that you were misdiagnosed (ask for a copy of this)

>are they aware that there is no gold standard test for PA (the IF test - if this is what they did - proves negative in 40%-60% of those with PA)?

>Are they aware that the research they refer to used high dose oral tables (minimum 1000mcg) and that these are not licensed for treatment in the UK?

>are they aware that the only licensed oral treatment for B12 deficiency in the UK is 50mcg tablets. These are only suitable for those with a dietary deficiency - which you do not have.

>this research only measured serum B12 levels following oral treatment and did not assess how effective this was in system repair and symptom relief (serum B12 levels do not show how effective treatment is so cannot be used to manage treatment following injections. Assessing symptoms is the only way to manage treatment (research did not do this).

>on what basis are they choosing to ignore all the current UK guidelines - which have not changed?

>are they aware that under-treated B12 deficiency can result in potentially irreversible neurological damage - subacute degeneration of the spinal cord (not suggesting you have this but many GPs are not aware of the havoc under treated B12 deficient can wreak on the human body)

>if they are now saying that you do not have PA, then ask them to initiate investigations to try and determine the cause of your (proven) B12 deficiency.

>As you still have symptoms whilst on injections (you can't last the full three months)...how do they think this will be impacted if you swop to tablets? This is a daft man question because the answer should be obvious...at least to anyone who understands B12 deficiency.

If,your GP still insists on this ridiculous course of action, you could ask to be re-refered to the neurologist who you originally saw....particularly if you still have neuro symptoms. They can write to your GP and ask for your injections to be re-instated. Though there is, sadly, no requirement for GPs to follow a consultant’s advice.

Sorry this is bit long-winded, but I'm quite cross on your behalf.

This has happened before...several times recently...and Martyn Hooper at the PAS has been successful in getting GPs to re-instate appropriate treatment...injections.

It really is a nonsense and probably driven by cost issues. Sorry it's happening to you.

No idea what information you've seen before so going to include a few links below If you want to print, , read, highlight the relevant points and take to discuss with your GP...might help.

Very best of luck next Tuesday...let us know how you get on. Here come the links...

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

These are the guidelines your GP should be following...they have not changed:

onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.

In case they continue up with this ridiculous course of action...if your neurological symptoms return, print this and take to your GP to help you to get immediate treatment. Incidentally...also speaks to subacute degeneration of the spinal cord...which I'm assuming your GP would like to avoid inflicting on you 😉:

archive.is/hbPHE (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

stichtingb12tekort.nl/weten... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

Good luck.

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Thank you so much for this. I am going to read and try to digest all of this and take notes so I am equipped. I am going to hammer on about the 12 weekly injections not being sufficient to keep the neurological symptoms at bay so far. I will certainly request a further referral to the neurologist as per his letter/report. I will seek advice and help also from the PAS after Tuesday if I am not happy. I will definitely update this group also. Thanks for such valuable information and advice.

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Good for you Holly2201.

Don't know ifmyou've spotted it but someone has just posted saying that they've been prescribed high dose cyanocobalamin tablets by their GP (1000mcg).

So...just in case your GP tries to do this, might be worth reading this post and the replies:

healthunlocked.com/pasoc/po...

Very best of luck. Will watch out for update 👍

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Hi Foggyme. I provided an update today below. Thanks for your help.

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I just wondered which county you were in that you got this stupid treatment, some are worse than others. I don't think your GP could have read the NHS guidelines.

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Holly2201. I have to say that I'm pretty upset on your behalf. I have read so many posts of ppl receiving jabs ridiculously far apart while still having symptoms. I can't figure out why your medical team would say there was a diagnoses mistake. And why they would lie about a "new treatment". Absolutely crazy. You either absorb b12 or you don't. Simple as that. I hope your doc open his eyes and treats your symptoms, not just go by one size fits all test

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I'm new to this forum. I've been reading about B12 as our adult daughter has symptoms that could be due to this and her serum B12 is at the low end of accepted normal. She experiences pins and needles, some dizziness/loss of balance, has experienced difficulty walking, tinnitus, an unusual corneal lesion that is slow to heal, increased susceptibility to bruising. She has IBS and for a period was hypothyroid. Thyroid problems run in our family and her Great Grandma was diagnosed with PA. I read the Cochrane Review that found oral B12 is effectively absorbed, even in people who have difficulty with absorption, if administered in high doses. And that some countries e.g. in Scandinavia, and in USA are now moving to oral therapy. I also read a paper by GPs in the UK who conducted a trial placing their B12 deficient patients on oral therapy & monitoring the results. All patients were satisfactorily maintained. (think there were circa 200 patients in the trial) Please advise, thanks.

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Hi Siglan,

Might be worth starting a new thread with this as that way it will get more attention.

Personally, I'd like to know what the author's definition of satisfactorily maintained was.

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Sigian - suggest that you start your own thread even though it may seem to be related - if you want specific advice - not everyone notices new responses on threads unless they are specifically monitoring the threads.

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Thank you for letting me know.

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High dose oral can be effective in helping to maintain B12 levels even in people who have problems absorbing B12 through the ileum as some B12 (average 1%) is absorbed outside the ileum, but it certainly doesn't work for everyone.

I would suggest you ask how the research has identified that you do not have PA given that the normal test or PA - IFA has a very low sensitivity and gives false negatives between 40-60% of the time.

I believe there are currently a number of trials going on on the use of high dose oral as a replacement for injections but if this is a trial then all patients should have that properly explained to them and they should be given the option as to whether or not they wish to partake. High dose oral still isn't a treatment that is 'licensed' in the UK as far as I am aware.

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b12d.org

here you can explain your health symptoms to the doctor and they will issue you B12 ampules for free (you only pay if you can afford to). You can administer them yourself, or you can ask that a nurse at your surgery does it for you (as I did). Good luck :)

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Hi Holly,

It might be very helpful for you to bring the Cochran’s review article with you on Tuesday. The full link is below. The nature of review articles is that they look at a certain body of research articles on one topic and based on those papers, they summarize them into a recommendation. Sometimes there is enough evidence to make a good recommendation and sometimes there isn’t. In this case, it clearly states in the box at the end of the abstract (not the full article) that the recommendation for oral B12 over injections is of low confidence based on lack of evidence (only 153 subjects). Here is the actual recommendation:

“Authors' conclusions:

Low quality evidence shows oral and IM vitamin B12 having similar effects in terms of normalising serum vitamin B12 levels, but oral treatment costs less. We found very low-quality evidence that oral vitamin B12 appears as safe as IM vitamin B12. Further trials should conduct better randomisation and blinding procedures, recruit more participants, and provide adequate reporting. Future trials should also measure important outcomes such as the clinical signs and symptoms of vitamin B12 deficiency, health related-quality of life, socioeconomic effects, and report adverse events adequately, preferably in a primary care setting.”

So, I think many docs don’t take the time to read that far! I was give this advice, just like you, last winter. I trusted my doc who told me she had just been to a conference about PA and heard “ new research” that oral B12 was just as good as shots. I got sick very quickly (truth be told there was another B12 error, as well—see my post if you want all the sordid details) and was bed bound for at least a week while I had to reload with IM B12. PLEASE, do not switch to oral B12 based on this review article which clearly states it is based on “low quality evidence”!

Good luck.

Sandy

Pediatrician in the US

cochrane.org/CD004655/ENDOC...

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I am no doctor but I was recently diagnosed. My doctor is a blood specialist and I trust him. He said that the oral pills are basically the same as the injections and they are fine for pa. He they are designed to work just like the injections but he suggested that I do injections instead. I volunteer for the Red Cross and if I am deployed, he will give me pills instead of injections until I come back home. Apparently, your body should respond the same to either method.

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Thanks. But I understood it as being unable to absorb the B12 via the stomach due to PA. Thus the injections being required regularly regardless of sufficient B12 in diet and/or pills. The nurse at my surgery stated "only those who are diagnosed with PA will continue on life long injections". So they don't seem to agree that the pills are fine for PA.

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I am no doctor either but I fail to see how, if you cannot absorb through the stomach, that tablets are the answer. I would prefer not to have to self inject, but the alternative is worse.

I too had a 'trusted' doctor but two operations later and sub acute degeneration of the cord he is black balled by me.

Many doctors know little about PA and vit. B12 deficiency. Some haven't even read the NHS Guidelines.

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If pills worked as well as injections, none of us would be bothering with injections. I've tried pills, they didn't help me, but injections got me back to health again.

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b12-institute.nl/caution-no...

This institute is one of global leaders into b12 reasearch and treatment of deficiency. Some pages in Dutch just use google translate. Tell your nurse to get on her bike and not stop riding as they don’t have a clue. If you’ve had/have a deficiency related to malabsorption, how is it fathomly possible that oral substitute is going to help. It would only falsely raise serum, which is useless, masking your deficiency. Some people give up on ignorant medical staff and source their own b12 and self administer to have themselves the suffering and headaches dealing with morons

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Hi boru "Tell your nurse to get on her bike and not stop riding,"

I love your attitude - you are as rude as me. A cartoon coming up I think.

We only do 5 loading in my county and when I asked why, the snippy nurse, Miss Knowall said in a very hoity-toity manner "If 5 injections does not cure you 6 won't."

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I think it’s time for a sea change in culture in the UK: stiff upper lip and just getting on with things is not the way to go. Have to be more American: litigation when b12 is not properly administered= doctors, nurses, NHS will soon realise that it far cheaper to provide proper b12 care to those of whom are suffering than to not.

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I’m beyond being polite after the way we were treated, so you may want to filter my ideas with a bit of calm- lol. The NICE guidelines state when there are neurological symptoms injections are to administered every other day until no more improvements seen: which means they can go on months. Tell her she’s not a doctor, doesn’t know what she is talking about, not following guidelines and her negligence is causing you personal harm, and if it isn’t retified you will speak it to a solicitor and report her to the nursing and midwifery council for acting outside her competence. Go online and print off NICE guidelines for treatment of b12 deficiency, and bring to practice manager highlighting part every other day until patient sees no improvement.

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UPDATE: Hi everyone. Thanks to everyone who responded and advised me. I had the telephone consultation with my GP today. I have now had the decision to replace my injections with oral medication reversed.

This is the gist of how the consultation went (excuse any lack of knowledge/understanding at times): I said what I had been told by the nurse at my last injection "that only those with diagnosed PA would receive lifelong injections from now on" and she said "yes, that's right"? I asked why I had originally been diagnosed with PA and now this is no longer the case. My GP explained that although she had given me literature on PA at the time of B12 deficiency diagnosis, this was just to highlight the signs and symptoms of PA. However, my intrinsic factor test was negative. ?? It appears then that those with negative on this test at my surgery will be switched to oral from now on.

I said how my initial symptoms of numbness in legs when standing/unsteadiness etc, which increased in frequency to around 8 times a day had responded well to the injections initially. However, they always return around 7-8 weeks after an injection - albeit, not as frequent as before receiving injections. I had previously discussed this with her and as a result she referred me to a neurologist. I quoted the neurologists report confirming severe symptoms due to prolonged deficiency of B12. I also quoted he was happy to see me again should the symptoms not clear up totally and he would conduct further investigations/scans. I said I was very concerned that oral medication doses would not be high enough to treat or sufficient enough due to me continuing to have the return of neurological symptoms prior to my next injection.

I quoted the UK guidelines stating that the only recommended treatment for those with neurological symptoms is via B12 injections. I said I had read how under-treated B12 deficiency can result in potentially irreversible neurological damage - sub acute degeneration of the spinal cord. I quoted the BNF prescribing guidelines stating that those with neurological symptoms should receive a maintenance dose of B12 every eight weeks - not 12. She said she hadn't heard of the eight week prescribing and had always prescribed on a 12 week basis. (Hopefully she will now go and have a look for herself). However, I plan on visiting her in the next few days on a different matter and I will bring a print out of that then to show her.

Since all of your help and advice on here I decided to look into other causes of B12 deficiency, I came across information on how previous stomach surgery can result in malabsorption issues. As I myself had bowel surgery twice a long time ago, I informed her of this. She wasn't aware of it, (although it's in my notes) and immediately said that as a result, I could continue on the injections as this is most probably the reason for the long-term deficiency.

Next steps:

Before my next (12 weekly) injection is due she will check B12 levels to look for signs of any trough and to determine whether more frequent injections should be given. She will also check: folate; intrinsic factor and celiac. She said that should these all appear okay, she will refer me back to the neurologist for further investigations/scans.

I understand this is not over for me as I know I need more regular doses and may well resort to self injecting, however, I am relieved of my biggest worry - that my symptoms will return in full force. Again thank you everyone who helped with this.

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Hi Holly2201. That's fantastic news. Well argued and very well done by you. But how annoying that it was necessary.

Hope your GP is aware that testing serum B12 following injections is not recommended...or necessary. Treatment should be based on symptoms only...and if you have symptoms that return before your next injection and then resolve when you have the next jab, then that's a clear indicator that you need more frequent injections.

And if you have neurogical symptoms, you should receive injections every other day and then go on the eight weekly regime once there is no further improvement (though as you know, this is not sufficient for some people so...oh if only GPs would treat according to symptoms. 🤷‍♀️🤦‍♀️

Think you have the right idea...if GP will not prescribe enough injections to keep you well and symptom free, then SI in between getting as much as you can from your GP 😉😀.

And just a thought...many people don't return to 'old' posts so there will be many in the forum who don't see your good news. So might be worth copy and pasting into a new post somthet all can cheer on your behalf (if you do, I'll copy in my reply).

Again, pleased on your behalf...and that's one more GP being educated. Hurrah for that 😊.

Will watch out for further updates xx

P.s. yep...bowel surgery x two could indeed be the cause

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Thank you so much. I am copying and pasting as a new post now. I couldn't have done it without you.

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No problem Holly2201. Just wish that there were not so many in your situation...but at least your GP listened....though I do wonder how she would have responded if GI surgery wasn't a factor...so hmm🤔

A disgrace 🤬

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Yes exactly. Before I mentioned surgery she said she believed it to be dietary! Aaargh. I do hope though now that the issue of presenting with neurological symptoms regardless of PA diagnosis has had some impact on her "one tablet fits all" theory.

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Yes...I sincerely hope so too. And it certainly would if she or one of her family or friends had B12 deficiency...with or without neurogical symptoms!

Super impressed with your ability to stand your ground...especially while probably feeling...not so hot 😉😀.

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You did so well standing your ground!!! I'm following this with interest, as I am B12 deficient unless I have injections (I had neurological symptoms before I was treated) yet I don't have PA. So i really hope my surgery don't go down the road of "only people with PA can have injections" - I will argue that if I were able to absorb B12 orally I wouldn't have been deficient the first place There's no obvious reason for my failure to absorb, I've had every blood test under the sun, and I eat plenty of meat/fish/dairy and I sometimes think this leaves me on slightly dodgy ground.

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Hi. Thanks I am so relieved. Before I mentioned the surgery, I felt I was doing a good job hammering on about the UK guidelines stating that the only recommended treatment for those with neurological symptoms is via B12 injections. Hopefully not, but if this does happen to you, you should pinpoint these and present in your case. All the best.

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I've been following you in your difficulties Holly2201 and have to say well done in informing your GP and also standing your ground. Not always easy to contradict the professionals I know so good for you, brave girl, and this wonderful site is such a help in that. Will look out for your further posts. Look after yourself j x

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Hi,

Fantastic news...so pleased to hear you have had treatment reinstated.

"She said she hadn't heard of the eight week prescribing and had always prescribed on a 12 week basis. "

I don't believe she hasn't heard of 8 week prescribing.

BNF book Chapter 9 Section 1.2 clearly gives info that B12 treatment where neuro symptoms are present is every other day jabs for as long as symptoms get better then jabs every 2 months.

Your GP almost certainly has a copy of BNF book on her desk or bookshelf, perhaps she's never read the correct page.

If she argues that the BNF treatment pattern does not apply to you because you do not have a confirmed PA diagnosis then you could show her relevant parts of BSH Cobalamin and Folate guidelines.

"only people with PA can have injections"

BSH Cobalamin and Folate guidelines are clearer in my opinion than BNF, that every other day loading jabs and 8 weekly maintenance jabs apply to anyone with b12 deficiency with neuro symptoms, whatever the cause of B12 deficiency even diet. BNF concentrates on PA and other macrocytic anaemias.

Has GP got a copy of BSH Cobalamin and Folate guidelines?

If GP wants to educate herself further, I suggest she .....

1) Looks at section on PAS website for health professionals. Is she aware that she can join PAS for free as an associate member?

pernicious-anaemia-society....

2) Reads PAS leaflet "An Update for Medical Professionals: Diagnosis and Treatment ", access to PAS members only.

pernicious-anaemia-society.... See Page 1 of articles

3) Reads a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

I gave a copy to my GPs for the practice library.

"will also check: folate; intrinsic factor and celiac. She said that should these all appear okay, she will refer me back to the neurologist "

Intrinsic factor Antibody test results may be influenced if blood taken close to B12 injection or B12 supplements. I believe false positives are possible in above situation.

labtestsonline.org/tests/in...

"intrinsic factor test was negative. ?? It appears then that those with negative on this test at my surgery will be switched to oral"

Antibody Negative Pernicious Anaemia

Is your GP aware that patients with a negative result in Intrinsic Factor Antibody (IFA) test can still have PA? I am concerned that your IFA test results may come back negative again and she might discount the possibility of PA if she lacks knowledge about Antibody Negative Pernicious Anaemia .

Info about Antibody Negative Pernicious Anaemia can be found in links below and in Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Coeliac disease

I suggest reading NICE guidelines Coeliac Disease (2015 version).

nice.org.uk/guidance/ng20/c...

If she checks for Coeliac disease, make sure both recommended tests are done. UK GPs sometimes don't do Total IgA test....

1) tTG IgA

2) Total IgA

Total IgA test checks for those patients with IgA deficiency. People with IgA deficiency will not make the antibodies to gluten that the tTG IgA test checks for , even if they have Coeliac disease so they will need different tests. See NICE guidelines link.

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Has your GP mentioned to you that if she is going to test for Coeliac disease, you probably need to be eating plenty of gluten each day for several weeks prior to test?

coeliac.org.uk/coeliac-dise...

Might be worth contacting Coeliac UK for more info on this.

Coeliac UK Helpline 0333 332 2033

H Pylori

Has your GP checked for H Pylori infection?

patient.info/health/dyspeps...

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Here you can find the oral forms of B12 supplements theolive.com/reviews/best-b... . I've been 100% vegan and in about a year I started having symptoms of B12 deficiency (tingling in hands), and I started taking B12 supplements. Works fine and I feel great

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