Gp review after b12 stopped - Pernicious Anaemi...

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Gp review after b12 stopped

Twinklesthecat
Twinklesthecat
37 Replies

Hello 👋 I need some advice please.

My gp practice carried out a generic review of b12 patients back in July and they decided I could no longer have b12 injections

I was started on them in 2009 as I had neuro symptoms and chronic fatigue and after repeated visits to my gp I was finally advised my b12 was low and I’d need injections Every 8 weeks (due to neuro involvement) for life. My current gp clearly disagrees!

I attended today, having gone 4 months without a jab, and I have pins and needles in my hands and feet, numb patches on my face and altered sensation in my mouth that has resulted in my biting my tongue when eating (this is becoming quite sore 😔)

My gp had repeated my serum b12. She said it was normal when I was last tested (492 a month before my last injection) and I said clearly that level isn’t ‘high’ so shows my treatment was working so proves there was no need to change things. She then said that I have tested negative for parietal cells and therefore there is a paper that says I don’t need injections and just b12 tablets. I indicated to her that as I have neuro involvement the nice guidelines are clear in that injections are the current nhs recommended treatment, and there are counter arguments to the paper she is referring to.

I said that as my neuro symptoms have returned I would like haematological intervention or a return to my 8 week injection regime. She said she would decide when my bloods come back as my parietal cell antibody was previously negative.

I will fight this because I know that I will become progressively worse without treatment.

My question is:

with levels of 492 in June, and jab mid July even with pa, Are my levels likely to be clinically low yet?

With my neuro symptoms am I right to continue to press for a haematologist intervention?

Does anyone know of paper that indicated tablets will work for those who test negative to parietal cell antibody?

Many thanks

37 Replies
oldestnewest
Cb1963

I'm not sure about all the numbers and readings, but, it's the symptoms that is more important, and then you get all the other different symptoms, I would really stand your ground on this one, there are that many other symptoms that can you end up with,and trying to reverse them is a lost cause,my doctor refuses to increase my injections from a 3 monthly cycle,even though ive mentioned I have ended up with a constant ringing in my ears, and the pins and needles are now into my hands 24/7,I know when I'm due an injection my muscles start twitching a few weeks beforehand, and occasionally ive had to go onto folic acid tablets as I get a deep chest rumbling sensation,it's either a cost cutting exercise or you have very stubborn doctor,this is your health,and the effects are detrimental upon you,this whole process is very tiresome without having to chase up a 'professional' and I understand how you feel,hopefully,there will be folks on here who can give you all the technical jargon, but don't give up, even if you have to go down the route of self administering which folk on here do,keep your eyes open for ' wedgewood ' on here they might point you in the right direction if that's the only way forward and everyone's favourite book of knowledge, is 'clivealive' he doesn't come on as often but he's the encyclopedia, good luck, best wishes.

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Gambit62
Gambit62Administrator

article 'suggesting' that oral could be as good

ncbi.nlm.nih.gov/pmc/articl...

study indicating that it is a dangerous route to go down

smw.ch/article/doi/smw.2017...

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Cb1963
Cb1963
in reply to Gambit62

I noticed on the link that you have given to twinklethecat that this medical information is dated 2003,do you think it is still relevant with symptoms and it's worthwhile taking tablets to try as well and an injection? The only reason why I'm asking is because I feel I need additional supplements to help with my symptoms,and where is the best place to source the tablets from, would this be a chemist or a health shop? Or would it have to be ordered online?I'm not judging your knowledge, its just so difficult trying to find out all this information,sorry to jump into a conversation,but any bits of help is always useful, many thanks, ttfn

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AmHW
AmHW
in reply to Gambit62

Hi guys,

I just wanted to weigh in on this- I work as a research analyst in the NHS, so basically my job is to look at research, analyse it and tell you if it’s robust etc. Having looked at that paper (top one)- it is not a robust piece of research evidence. The things that scream out to me are that it was only in 40 patients. A Randomised controlled trial would be a much more robust design where people with injections are compared to those on oral supplements in terms of bloods and symptoms. Basically, what i’m trying to say is no doctor should be soley basing their practice off of this paper when their are much more robust studies out there including NICE guidance which is based on a rigorous evidence review process. If this is all your doctor is basing their decision on you should ask them if they have bothered to critically appraise it to assess it’s quality and rigour- I can guarantee they won’t have!

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Gambit62
Gambit62Administrator
in reply to AmHW

Cb1963 AmHW , the point of posting the first article was to demonstrate that there are a lot of small scale studies out there and they do give mixed results - there are also some larger scales studies eg one in Canada that found that something like 80% of patients actually preferred treatment with high dose oral ... which makes you wonder about the other 20%. Most of these are pre 2015 but there is a tendency to pick up old papers and run with them that is pervasive in the world today - rather than looking to more recent stuff like the second article. There do actually seem to be an alarming number of GP practices that are starting to push oral B12 despite the guidelines. There seem to be a few regions that have been trialling oral and I wonder if it is sometimes a case of research guidelines not being understood and followed.

Twinklesthecat, suggest you ask where the changes in policy at your practice are coming from as oral isn't actually a licensed treatment for B12 absorption problems in the UK. If it is because the practice has enrolled in a research study then point out that there are research protocols that apply that don't seem to be being followed - eg informed consent by the patient. You may want to raise this in writing to your GP with a copy to the practice manager.

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AmHW
AmHW
in reply to Gambit62

Absolutely! Whats really needed are larger trials or a good quality systematic review 😊, it is alarming that GPs do just seem to pick odd papers off the shelf and run with them

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bquoss
bquoss
in reply to Gambit62

Gambit 62, what is the measure these studies use for success of treatment? Just level of B12 in the blood? Maybe patient satisfaction? I doubt there is any acceptable measure of improvement from neurological damage, that's why the guidelines call for clinical judgment.

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Gambit62
Gambit62Administrator
in reply to bquoss

bquoss

generally studies base results on serum B12 so not a particularly useful measure.

the Canadian study also used patient satisfaction.

Neurological damage - really depends on what you mean - if you mean that myelin around cells has been damaged then that takes months to years to repair. If nerve itself has been damaged then the problem will be permanent. If the problem is neuro-transmitters recycling then that will probably be quite quickly after the cells start getting the B12 they need.

Guidelines don't actually say clinical judgement but they do say that symptoms should be taken into account when considering whether to treat.

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wedgewood
wedgewood
in reply to AmHW

Thanks very much for that .

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Litatamon

Hi,

So sorry you have to fight for treatment. I don't have any answers to your questions. Simply wanted to share an article that might help fight some of the misconceptions. Scroll down to #4.

stichtingb12tekort.nl/weten...

Also, there is a tendency to try to get people off the shots here and on to pills (Canada - Ontario). I am very early with my diagnosis but I am not waiting for that to happen. I have already started to self-inject. It is very comforting to know that I am no longer privy to the whim of cutbacks and poor decision-making.

Hope everything goes well for you.

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wedgewood
wedgewood
in reply to Litatamon

How I agree with you litatamon concerning self-injection . It is cheap and convenient . Need not cost any more than £1-20 a shot if one buys in bulk . ( 100 of everything ) My life has changed completely now that I can inject often enough to keep symptoms at bay . It is a real tragedy that B12 deficiency/ Pernicious Anaemia is so poorly researched and treated .

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wedgewood

I’m really sorry to hear of your treatment . It’s terrible that the medical profession has such poor knowledge of B12 deficiency / Pernicious Anaemia. Everyone is different . My levels of B12 have to be kept very high for me to keep the horrible symptoms at bay . Trying to convince doctors of this was like banging my head against a brick wall . I have PA diagnosed by a positive Intrinsic Factor Antibody Test ( very unreliable if it comes up negative )

After months of wrangling , I had to turn to self-help which was of course self - injecting . It changed my life . I need to inject weekly to keep well . For some , 3 monthly is sufficient , for others , daily , and anywhere in between . That’s how it is . With the health service in the dire straits that it’s in , I suppose GPs are trying to cut costs where they can . This is false economy where B12 injections are concerned .

Your health will decline if you do not get sufficient injections, and you will then cause the NHS more expense . I certainly tried B12 sub-lingual lozenges , nasal and mouth sprays and B12 patches all over my body , to no effect whatsoever .Theres no harm in your trying those ( more expensive than injections ) but if they fail you , do consider self-injecting . You cannot overdose on B12 injections ( my doctor told me that too much B12 would be “toxic” which was absolute piffle . Of course he could not show me any medical proof of this ( because thee isn’t any)

I do wish you all the best in your endeavours to keep well . 👍

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b12deficiency

Hello. Do u know where I can buy injections online in Canada?

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wedgewood

Yes , you can get B12 CYNOCOBALAMIN in vials or ampoules from—www.canadadrugsonline.com

canadapharmacyonline.com

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Cb1963
Cb1963
in reply to wedgewood

Hi wedgewood, what is the shelf life on the ampules of the product? And I live in the UK where do you order your supplies from and how do you store them once you have received them? Perhaps if our doctor's had the symptoms, and then actually got more symptoms on top of the original problems they'd understand what we are going through,my condition has got worse, and my doctor just ignores all the new symptoms,so frustrating! Many sensible points raised by you, thank you.

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wedgewood
wedgewood
in reply to Cb1963

I get my ampoules of B12 Hydroxocobalamin from German online pharmacies , namely —-.

bodfeld-apotheke.de

versandapo.de

amazon.de ( English site available )

I buy 100 ampoules at a time — .courier costs €9.00 no matter how many you buy . I buy 1mg x 1ml ampoules . Rotexmedica B12 depot .

Do put “depot” , because that means you will get Hydroxocobalamin, not Cynocobalamin. The use - buy date is always more than 2 1/2 years hence .

You need to store them below 25 c .So in a heat-wave , not likely anytime soon , put them in the fridge .

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wedgewood
wedgewood
in reply to wedgewood

Forgot to say you can get translation on Bodfeld ( top right )

For versand apo , you need translation ap. or use google chrome .

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Cb1963
Cb1963
in reply to wedgewood

My mum is German, so if I get any problems with the language barrier problems I'll get her to help, many thanks again.

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wedgewood
wedgewood
in reply to Cb1963

I have bought B12 ampoules from chemists when visiting Germany , and they are more expensive than buying them from online German pharmacies !!

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Litatamon

@b12deficiency - re: Canada. Online there are quite a few options, including Amazon Canada. But you can walk into any pharmacy and ask for them. They are behind the counter. And very cheap at the pharmacy.

I am not sure if there are any provincial differences with that information.

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b12deficiency

OK. Thank you. I live in the US, which apparently requires a prescription for injectable B12. My GP started me on 4 weekly shots, but has now said I only need monthly. However my symptoms are worsening. I have already tried to obtain it via an online US firm, and was denied due to lack of a prescription. Thanks.

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chill234

I get cyanocobalamin at Any local pharmacy (as well as needles) in Vancouver much cheaper than online.

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b12deficiency

Thanks but in the US I need a prescription for injections for some reason.

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Ritchie1268

So infuriating to hear yet another story like this!

If only they fully understood the damage they cause by trying saving a few quid, the outcome costs £Billions! 😡

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wedgewood

Hear , hear !

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Cb1963
Cb1963
in reply to wedgewood

Glad you managed to see the conversations and how this subject affects people, it really affects people in so many ways, if only our doctor's could understand all the problems that we face, and how symptoms have got worse, and my doctor has totally disregarded my new symptoms,I feel like telling him I want my feet amputated!!!

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wedgewood
wedgewood
in reply to Cb1963

My feet were totally numb , and I couldn’t drive with safety . I started self injecting daily for 3months . I managed to get rid of the numbness , and was just left with burning feet , which I have learned to live with . I’m driving big again and am absolutely safe . Also feel much better in myself .

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Litatamon

Isn't it ridiculous? We apparently save millions here in my province taking b12 testing off our blood panel and leaving it to the discretion of each doctor. Meanwhile I have seen an ENT for ear pain and had a MRI for possible trigeminal neuralgia (along with a neurologist soon). All pain surrounding these two issues disappeared during my loading shots after years of pain (hoping for good!).

And let's add a memory test administered by a nurse. Money, money, money, MON ---EY!

I asked for the b12 testing not knowing a thing!

I barely go to the doctor. Imagine how much money would have been spent if I hadn't found my own issue. So many b12 symtoms seemed like separate issues as well.

Such brilliant minds making these decisions. Insert big fat sigh!

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Ritchie1268

Absolutely. We've ranted on here loads of times about how many get misdiagnosed with MS & early stage dementia, depression etc etc.

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AliEnglish77

I had a similar experience and now I buy from Europe and self inject. I was needle phobic so this was a big step but has been well worth it. The readings mean very little. You have a deficiency. You have proved to yourself the b12 injections fix that and enable you to live your life. Your reading pre treatment is all that matters. Taking a reading after injections is ridiculous. Look at b12d.org it's a great resource. No point wasting time fighting GPs in my experience. Take control. Good luck! X

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Twinklesthecat

Thanks everyone. The responses are just the right balance of educating me so I feel more empowered and reminding me that my gp doesn’t hold all the power as I can just self inject if need be.

Odd question but my tongue is starting to feel bigger and it is burning. I keep holding cold water in my mouth too ease the symptom. Is this a b12 thing? Does anyone else get this? I vaguely remember getting it before and I bought a b12 mouth spray that worked to ease it but I’m loathed to do this before my bloods are done.

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Cb1963

I get a tingling tongue sensation, I suppose it all depends on how we describe our symptoms, the list of symptoms that occurs with B12 is like a shopping list going to Tesco's,the problems are numerous, and the sensations and pains can vary on a daily basis,I'm sorry you are struggling, but in the same breath, you have opened up a good conversation, and have managed to get plenty of other people involved who might otherwise struggle, even I'm now taking up wedgewoods advice and will probably end up ordering items online,so without you id probably still be at a loss and suffering with the miserable and painful symptoms,I truly hope that you make some progress, and please let us know how you get on in the future, best wishes, great title btw,ttfn.

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gingerbear644

The NICE guidelines are quite clear. She does not get to decide. Change doctors. If you DO NOT GET TREATMENT as advised, the damage will spread to the spinal column. I WOULD KNOW. Then she would need to get a lawyer letter.

Change doctors. The serum test is a waste after treatment since its in the blood but not reversing the damage. It takes time to reverse the damage. Change her now.

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Cherylclaire
CherylclaireForum Support

Yes about the tongue getting bigger and burning feeling.

If you look at my old posts, there you will find a rather delightful photo of my "deficient tongue". Sometimes red-edged and pie-crust edges too- probably from it digging into the back of my teeth as it no longer fits in properly! I'm seeing an Oral medicine specialist currently, as the Adult Inherited Metabolic Diseases consultant does not necessarily see this as a B12 deficiency thing- although a lot of people on here would be familiar with this symptom. True, it is a bit of a "comedy symptom" compared with many others, but is useful in that it is visible.....

Hands up who would like to poke their tongue out at their GP. Thought so !

If you are having neurological symptoms, why not ask your GP to send you to a neurologist ? Very long wait, I know (if in UK), but seems more apt than haematologist.

I may be slightly biased, but the two haematologists that I saw were unhappy about my NHS injection frequency and warned me between them that B12 is "carcinogenic, toxic, highly addictive"- of course nothing quite so alarmist to my GP in their report as it's all clearly untrue and hugely insulting. All of their subsequent investigations were in search of proof that I had something else: SIBO was favourite to explain away my raised MMA, although test proved inconclusive and I reacted badly to the antibiotics and nothing changed for me at all ....except my NHS B12 injections were halved on their advice. This is when I first started self-injecting.

Whether you have PA or B12 deficiency without diagnosis no longer matters - it didn't matter to your first GP who concentrated on improving your health. Tablets work for vegans as a dietary supplement, because they are not ill - but it is possible for a vegan to also have PA.

There should be no need for any of this struggle: you had neurological symptoms back in 2009. Your GP gave you lifelong treatment (which is not a cure). Your new GP stopped this and you have deteriorated, so proving that the first GP was correct and her treatment should automatically be reinstated before deterioration continues. An apology would not go amiss either.

If this is new "practice policy", then it is flawed and you will be able to find plenty of evidence to present alongside return of symptoms. You might want to consider changing practice if you aren't up for a fight, but there is no guarantee that they will be better informed- some questions would need to be asked by you to guarantee treatment reinstatement. If this is just one ill-researched GP's opinion, it is flawed and you should change GPs.

Please don't be tempted to deteriorate in order to educate.

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Twinklesthecat

Thanks for your response. I loved it!

I am reluctant to see a neurologist as I did see one back in 2009, and I was diagnosed with ‘functional neurological disorder’ where it was explained to me (in a condescending shoulder pat kind of way) that I had reduced sensation in one of my dermatomes and this was a functional issue preventing the nerve signal working correctly. Most likely psychosomatic 🙄 I asked for a second opinion and got the same response. My opinion was they can’t be arsed looking and because I wasn’t dead or dying, they didn’t really care.

Thankfully my gp at the time decided that I could have 8 weekly b12 jabs. This just about saved my career as I was about to hit a brick wall.

Roll on 10 years and I’ve got 2 kids under 3 yrs old and a great career and now they decide to pull the rug out from under me. 😠

I hope my go is ready for me as I’m going to make this hard for her 😉 I’ve got little ones to care for (and I’m still breastfeeding my youngest) so my health comes first so it’s 1. Get bloods done 2. Find out what gp says 3. Get nhs injections (or self inject if I lose the conversation or it’s a lost cause conversation. Either way, I’m getting injections

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Cherylclaire
CherylclaireForum Support

You are right - sound priority selection.

I was off sick for 15 months, during which time I was completely unemployable, and have managed to make it back on a phased return -which admittedly has never got past 2 days per week. I teach, and consider myself very lucky to be able to return at all.

Even now, I have to make decisions regarding energy expenditure: for example, I went to a family funeral yesterday, but think I am going to have to give Prize-giving a miss tonight. This decision made itself, others are not so easy.

Whatever you can recoup and retain, it's a battle worth fighting. That is also an easy decision. Plenty of good people here to help; advice and/or moral support. And an interesting expert critical appraisal from AmHW !

Consultants are sometimes not worth the months of waiting, are they ? I was told by a gastroenterologist that I have IBS - but she could not explain to me how that would make my gums bleed, my hair fall out or affect cognitive behaviour and memory.

Wonder if it's worthwhile asking for an MMA test ?

(In laywomen's terms:)

At a certain point in the B12 journey, it joins with methylmalonic acid - so if you have an insufficient amount of B12, MMA is left hanging in your bloodstream.

This test is considered a reliable secondary indicator (if kidney problems ruled out) of B12 deficiency/ possibly SIBO (which also causes B12 deficiency). SIBO hydrogen breath test would rule this in/ out. MMA test is an expensive blood test not usually available from local hospital labs, though. MMA serum levels should right themselves soon after injections start, as B12 is then made available. Both my SIBO breath test and MMA tests were done on NHS (mainly via haematology).

Mine has been raised each of the 5 times it was measured- the first time was 8 months after B12 treatment began, initiated by my GP. My GP believes I have functional B12 deficiency, which was confirmed by the laboratory after the first MMA result. I believe her.

Good luck !

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FanofB12

Hi there. First I'd ask the GP which article she's read. See where she gets her information from. The answer with better quality information.

GPs are advised not to test for parietal cell antibodies, as they are present in c. 10% of people who do not have PA. Intrinsic factor antibodies can be useful - that is, if they are positive in someone with low B12 - then they diagnose PA. But in c. 50% of people with PA they are negative, so without having IF antibodies you can still have PA.

Sadly, GPs learn very little about PA or B12, either in medical school or in GP training, or in their further education :(( One can only wish !!

Testing after treatment has no value, as the BCSH guideline confirms:

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

Ask your GP to read it. It very clearly says that if there is any doubt, patients should be treated, even if the B12 level is in the normal range, because delay [or stopping] treatment could result in permanent neurological damage.

Nobody stops blood pressure treatment when treatment brings the blood pressure within the normal range. On the contrary, it shows the treatment works and should be continued. Nobody stops treating a diabetic because their blood sugars become normal on treatment. And nobody should stop B12 treatment because the B12 becomes normal or even high. Stop measuring, look at the improvement in symptoms, and keep treating.

Do tablets work: yes, they do in many people, but not in all.

This is based on this Cochrane review:

cochrane.org/CD004655/ENDOC...

HOWEVER, this report is based on 3 studies only, and they only looked at improvement of anaemia in patients, NOT at neurological improvement.

Whether tablets work has nothing to do with parietal cell antibodies.

About 1% of the dose in tablets gets absorbed without the need for intrinsic factor. So it takes a high dose - 1-2 mg every day, as in the studies included in this Cochrane review.

HOWEVER, you should always monitor whether the symptoms improve, or stay improved. If they come back when you switch to tablets, then obviously they are not working. Or need a higher dose, or you need to add injections.

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