Why is B12 deficiency so badly manage... - Pernicious Anaemi...

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Why is B12 deficiency so badly managed by GPs????(genuine question!)

MarvelousWays profile image

So, this may be a slightly rhetorical rant, but.......

Why are GPs (talking about in the UK as that is where I am, although from my reading I can see this happens elsewhere too) so reluctant/resistant to diagnosing and adequately treating B12 (and other nutritional) deficiencies?? 🤔

Prior to last year I had been lucky to be fairly healthy, and never really went to see my GP. Since last Dec I have been so many times and I am actually really taken aback by just how unhelpful/ unknowledgable they have been. In their defecne I will say the 2 GPs I see are actually lovely, and very pleasant and kind....but.....

Firstly one GP signed off my ferritin level of 9 as "borderline, no further action needed"

Then when I questioned my low folate the reply was " oh dont worry about that, everyone we test for folate comes back low"

And obviously given my B12 was in the indeterminate range they weren't concerned about that.

This is despite presenting with almost every symptom of B12 deficiency, for which they had found no other explanation, not to mention a raised MCV.

When I sent them Dr Klein's letter diagnosing B12 deficiency (and severe iron deficiency and folate deficiency) which mentioned the raised MCV (which was especially significant given my v low ferritin which would be expected to lower MCV) one GP actually said to me "oh I dont really understand all that to be honest, it just goes over my head." I mean seriously?????

How do they get away with being so badly informed about what must be a really common presenting condition in general practice? Is it lack of knowledge or a deliberate resistance? Is it about money? Or is it just a massive education campaing that's needed?

These are genuine questions because the whole thing has really shocked me. I should say, I think GPs have a seriously tough job at the minute, they are under immense stress and pressure and I do feel great sympathy for them. But still....

For total clarity - I myself am a doctor (not a GP, Haematologist or Gastroenterologist!) I was very quickly able to find relevant infromation including NICE guidelines and understand what was needed. Why are GPs not doing this? Would you not expect them to educate themselves about common conditions presenting to GP practices? When a new NICE guideline came out in a conidtion relating to my specialty a few years ago we all read it, then sat down as a team and made a plan as to how we could ensure it was implemented, how we would monitor how we were doing and how we could improve our practice.

I feel so sad for hundereds of pateints who must be suffering with these deficiencies undiagnosed/untreated. Not only that but the overal cost to society must be huge with people unable to work, struggling to parent, struggling to complete education, unable to exercise so increasing risk of other health conditions, etc not to mention repeated GP appoitnments as symptoms don't resolve.....

I am now planning a letter to my MP to raise awareness of this (although not expecting it will help) as it is really not acceptable. (as you can see as my brain fog and fatigue start to lift it seems my anger and frustration grows! 🤣)

So, what in your opinion needs to be done? How can we improve this situation?

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36 Replies
Nackapan profile image
Nackapan

My daughters ferritin wax ignored at 9 too.She wax mis diagnosed fof yesrs .

Had s limber puncture sbd brain mri before a B12 test eventually when j blocked her discharge from Addenbrooks .

She had megobolastic anaemia and s Serum b1e of 83pg/ ML

She gor s diagnosis of pots.

Caused by yesrs of mis diagnosis.

I truly believe it is lack of training.

If you are a doctor you know this.

Also for women of a certain age the menopause is blamed.

The menopause wax my trigger.

I knew it wax more than ghe menopause.

Again dismissed ax anxiety stress .

My first ever B12 wax 106 pg/ML at 57

No one took me seriously abd I wax getting too ill to think clearly.

I think everyone should have B12 levels died so they know what their normal is .

A baseline .

As wd sll operate at different levels.

It shoujd be on 'full bloods '

I've written yo mg M.p .

Like service repy only

I've been through many 'rounds ' wigb my surgery to retain my b12 .

Raising awareness of need.

I'm on no othef meds .

A questionnaire as a help in diagnosis

Flow chart .

I wax told dietary . Wasn't asked what I eat ,??

The same sll my life .

Meat ,diary, fish, eggs. No restrictions.

Clinical skills are being lost generally ax too much time staring at a screen rather thsn thd person/ patient .

MarvelousWays profile image
MarvelousWays in reply toNackapan

Lack of training is of course part of the issue, but an interesting issue. Training at what level? Was it ever covered in medical school - possibly maybe briefly. But actually that shouldn't matter. All doctors go on to do further training depending on what they speicialise in. GPs will cover thier own training requirements on their journey to becoming GPs. I would assume common GP presentations would be covered within that? I am not a GP so can't say for sure. But ALL doctors also have a requirement to complete a certain amount of continuing professional development each year. The exact amount is often determined by the Royal College you belong to but there is also a minimum amount the GMC requires you to do every 5 years. This is manadatory. The CPD you do should reflect the scope of your practice and be relevant. So there is really no excuse for not pursuing further training/learning about this if as a GP you are repeatedly seeing patients with B12 deficiciecny symptoms and you are not clear on how to manage them. But for whatever reason GPs are not seeing this as a priority - and I do wonder why? The cynic in me does wonder if there are finincial issues at play - I dont fully understand the financing of GP practices, but I believe that management of certain conditions attracts differing payments - does this influence where they chose to focus their attention?

Nackapan profile image
Nackapan in reply toMarvelousWays

My friend is a retired G.p .He was astounded by what happened to me .

He stated B12 tests were done frequently although not on the full bloods list. He had never come across anyone with such a low B12 that myself and daughter had ???

He truly believed that once on B12 injections I would be skipping down the road .

Having known me for 4o years he was astounded how it floored me and really thought something else going on .

I took direction from him as despite my low b12 my surgery didn't start B12 injections straight away .

Infact ind G.p thought it wasn't that low and a 'red herrin '

Unbelievable really .

Financial incentives I. e a certain % of vaccination ect do come into play as more like a business.

Very short sighted .

A push on anti depressants too.

I was offered many times but knew I wasn't depressed.

Nurses seem to resent b12 injections and I've had the most opposition from nurses .

Yes management of certain conditions does attract more funding .

I was told by a District nurse B12 is their lowest priority when they tried to stop my elderly mothers b12 injections.

As my mum only displays dementia symptons when without b12 this is alarming for those elderly that dont get their B12 .

Short sighted again as need more care in the community .

Fears of safety and overdosing biggest concerns I've found with G.ps .

I went through 6 G.ps until I found at least one wanting to help with an open mind .

And actually believed me and the symptoms were real.

Caradoc1a profile image
Caradoc1a in reply toMarvelousWays

I've also got recent B12 deficiency. A GP partner told me they purposefully do not follow the 2024 NICE guidelines as they could not fulfill the demand if they did. They would need an extra half time nurse and an additional treatment room. When asked if they would support self injecting, she said no. She doesn't think I need them and was disapproving at my decision to do this. At my next appointment, she commented on how well I looked and I said it's the B12 injections and she just shrugged. I have succeeded in getting them to take a full ships bin.

MarvelousWays profile image
MarvelousWays in reply toCaradoc1a

gosh. that is concerning to hear it was a purposeful decision to ignore current guidelines. I understand their constraints, but if this is the case then surely it should be being raised as an issue, rather than gaslighting patients into believing they dont need treatment. We all are operating in a resource poor environment. The NHS is on it's knees, believe me I get that! But I often apologise to patients for things like long waiting lists for certain treatemnts etc, I don't try and convince them they dont need the treatment instead!

Caradoc1a profile image
Caradoc1a in reply toMarvelousWays

You are absolutely right. It is very concerning. I know they are running on fumesvand I empathise greatly. But it's no reason to embrace poor choices. I can't see any forward in terms of dealing with my practice. I've been with them 35 years and had no problems till B12.

Dancer57 profile image
Dancer57

I have been trying for 2 years to get several GPs to acknowledge I have an absorption problem. In my experience the new NICE guidelines on B12 deficiency are being completely ignored and even if you bring it to a Doctors attention they still stick with what they have always been doing.

My total B12 is in normal range but private tests show my Active B12 is hovering just above deficient and MMA (Methyl Malonic Acid) tests private and NHS are high, indicating B12 deficiency but will anyone take it seriously!!!

My mother had PA and I have Autoimmune Thyroid disease but this gets ignored as a risk factor for b12 deficiency. I also have been folate, ferritin deficient despite eating a healthy diet.

As for what needs to be done. I think Doctors need to be trained on vitamin deficiencies and the effects it can have on the body. I wonder if they have any training or very limited on the subject as they seem to think it is not a problem half the time. Not having gone through medical school myself I wouldn't know how much time is spent on this. In an ideal world I wished there was a Vitamin specialist in hospitals as I find no one really understands it.

Personally, I think it is disgraceful that patients have to fight to be heard on this subject. It is not acceptable that people have to suffer with effects of a deficiency and no one seems too bothered in my opinion.

Others may have had a better experience than me.

Gambit62 profile image
Gambit62Administrator

Main issues

a) training. GPs are generalists - and with the number of conditions they are expected to look after they end up knowing next to nothing about everything.

There are many other conditions that they tend to be bad at treating - particularly chronic conditions, including other autoimmune conditions - thyroid and migraine.

Admittedly they can also be pretty bad on acute conditions - I was told by my GP that I didn't have a fractured elbow when I did - fortunately the physio was more knowledgeable :)

They get only a couple of hours training on conditions like headache and about the same on nutrition.

b) Time per patient. They have huge numbers of patients and hence limited time so you get very short appointments and in daft rules like only one symptom per session and you end up treating symptoms rather than underlying causes, and not having the time to look into underlying causes. Looking into causes generally means running labs and being overly dependant on the test results and having someone else in the lab interpret those results for them and tell them what they mean

c) Lack of specialists: In theory the system is supposed to work by GPs referring to specialists but even there the way specialisms develop tend to refer to specific parts of the body and not to underlying conditions. There are no specific specialists for Pernicious Anaemia. The same happens with thyroid conditions, which come under endocrinologists but most endocrinologists specialise in diabetes and know little about thyroid. So, even if your GP can manage to refer you to a specialist there will be long waiting lists because specialist are in short supply and even then it may not be the right specialist

d) Lack of technical support including labs running test results. Labs are so busy that they only have time to run tests and provide standardised results. These tend to focus on rather broad brush views and there isn't space to tailor results to details of the patients circumstances - if they were told the circumstances in the first place - eg whether a patient is already receiving treatment which could affect the expected results.

e) Add in a poor understanding of statistics and what the normal range might mean and the diagnosis side is going to end up as pretty hit and miss as well.

LynetteinUSA profile image
LynetteinUSA in reply toGambit62

That says it all.

SunnyWorld profile image
SunnyWorld

As a doctor yourself, you’re in a unique position. Sharing your experience—of having low B12 but not being heard—on platforms like X or LinkedIn could really hit home with other medical professionals. Sometimes hearing it from “one of their own” makes a bigger impact than any leaflet or guideline ever could.

AKatieD profile image
AKatieD

Yes and it is not just B12, thyroids are similarly not well treated, as are other hormone complaints to name but a few.

The "trouble" is we would have accepted what we were told by an ignorant g.p. in the past as gospel. But in an internet age we can all look up good medical sources and find out about our conditions and how they should be treated.

G.p.s don't do that and brush us off with the, so you are an expert now based on what some dodgy website says, or, you are just the worried well, or, I the professional know best, or, those overseas suppliers are dangerous, or, that private consultant ( who also works in the NHS) can't be trusted.

The patient may not be an expert on all medical fields, but they can become so on their own condition, especially with the support of groups like this. To be ignored and un/ badly treated because the g.p. does not understand results in long term suffering and damage to our society.

It also harms those who do not have the education and resources to do this, as they are destined to suffer poor treatment at the hands of many a professional.

The only way I have found to keep going is to do my own research and pay through the nose to test and treat myself properly. Not ideal, but rather than applauding a necessary act of self protection, it is frowned on as a dangerous act. Apparently I should only accept poor treatment from someone who patently is not the most knowledgeable.

I fear for the day when we are prevented from doing this by medical and pharmacy professions (e.g. the risk of bans on importing meds without prescription) as then I would be really screwed.

fiftyone profile image
fiftyone

I agree with you. I'm sick of results coming back 'normal' when I'm borderline. Why don't GPs aim for 'optimal' levels instead of only just into normal range? I'n happier if I see I'm at least half way up the 'range'.

FlipperTD profile image
FlipperTD in reply tofiftyone

Scientist, not medic.

If everyone was 'half way up the range' then the range would change. We don't have 'normal' ranges; we have statistically defined reference ranges. The underlying maths for the statistical distributions used rely on a Gaussian distribution, and unfortunately, the distribution of B12 results [like many biological systems] isn't Gaussian, it's skewed, so the underlying mathematical solution used for data reduction is flawed, but we do our best to help!

[A Gaussian distribution is a 'bell-shaped curve' where the mean, mode and median are all the same. A skewed distribution is one where the [single] mode is lower than the mean, and the median is greater than the mean.]

It's worth noting that the reference ranges refer to populations, and not individuals. What's adequate for you may not be for your next-door neighbour. I wish it was simpler, but it isn't!

fiftyone profile image
fiftyone in reply toFlipperTD

the reference ranges may apply to 'populations' but maybe medics just compare their patients to 'the population'. I take levothyroxine and my blood results are way out of population range, have been for years but I feel fine. If I change doctors I have to explain this to them. If I left it to GPs their natural reaction is to reduce my dose til I reach 'normal' population levels. My suspicion is that doctors don't check levels often or carefully enough for the individual .....just mark them as 'normal' if they come within ' population' levels.

FlipperTD profile image
FlipperTD in reply tofiftyone

Absolutely. It would be far easier for them if it was simply high, low or normal. It's what's normal for you, and a matter of treating the symptoms, not the numbers. The more numbers we can produce, the more options they have for confusing themselves.

Good luck!

helvella profile image
helvella in reply toFlipperTD

This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.

The normal range: it is not normal and it is not a range

This blog has the abstract of this paper plus link to the original full paper. Also includes some extra links to a video and some other related information.

Last updated 10/02/2025

Link to blog:

helvella.blogspot.com/p/the...

FlipperTD profile image
FlipperTD in reply tohelvella

That's helpful. This is akin to Ernest Bevin's remark on being elevated to the position of 'Lord Privy Seal' when he said that he was "neither a Lord, nor a Privy, nor a Seal".

'Normal' and 'Reference' are used interchangeably by those who simply don't understand, in the same way as 'B12 deficiency' has been dubbed 'PA' when it might be, but then again, might not!

PlatypusProfit8077 profile image
PlatypusProfit8077

It really is bizarre and frustrating beyond belief. You can see some of my posts for the reactions I’ve gotten from doctors “you must feel like an addict” or “it’s just psychosomatic, here’s a lorazepam so you can go sleep it off”.

It’s degrading and distressing.

I’m now on the hunt for a new GP - will I ever find one who understands PA? Maybe not but at least one who’s open to learning???

FlipperTD profile image
FlipperTD in reply toPlatypusProfit8077

If you find one who is, or has been, B12 deficient then they'll probably understand!

AKatieD profile image
AKatieD

Yes, I have had " you only want it to feel better" comment - well duh! Or " you only want to continue taking this medicine to lose weight" when I am standing in front of them at 13 stone (unchanged weight) and have been taking it for some time.

DevH profile image
DevH

Thank you for your post. You have summarised the frustrations of many people. Thank you for what you do it would be amazing to have good Drs like you!

We discuss this all the time. So many people suffering needlessly and trying to discuss with GP is tough for most! Some people are writing to MPs. Be good to coordinate this. The responses haven’t be too helpful so far!

B12 Deficiency Support WhatsApp

chat.whatsapp.com/Ifr2zqWQn...

MarvelousWays profile image
MarvelousWays

Thanks for all the comments. Some really interesting points.

I do agree that GPs have a really difficult job. They need to know about so many conditions. And also 10 mins per consultation is ridiculous really. I really dont envy them there job at all, and I'm sure they are mostly all just trying to do their best.

I do imagine though that patients presenting with nutritional deficiencies must be pretty common. It's not really like expecting them to know how to manage some rare or unusual disease which would be outside of their remit. And I do therefor think they should be better infromed about this, or at least prepared to learn. For example if a patient raised a point about something I was unsure of I would at least listen to the patient, and would then read up on the subject if it seemed I needed more information. But for some reason most GPs seem very resistant to this possibility.I agree that lack of specialilsts to refer onto is also unhelpful.

Lab testing is another good point. Lack of access to tests such as MMA is unhelpful. I had an MMA test doen privately which came back raised and was really the only test that was conclusive of b12 deficiency for me. Also, not only do different labs have different referance ranges, but some have different comments. For example, with ferritin, according to NICE anythng below 30 is definite iron deficiciency. Some labs have used this to inform there ranges. Others dont(so may have a rage eg 15-200) but do add a comment stating below 30 is deficiency. My lab simply has a range of 10-299 , which meant when my ferritin came back at 9 it was marked by GP as borderline, no further action when actually it was showing severe deficiency. The fact the range for my local lab is so low simply relects the fact that a signifcant number of the local population are iron deficicent! GPs should be able to understand and interpret this accordingly, but additinal comments from the lab, or more helpful ranges would be beneficical. Same for b12 with indications of possible low or intermediate results.

And I am now already planning a training session for my team on b12 and other deficiencies to raise awareness and to make sure we are considering it as there is some relevance for my specialty and our pateint population!

SLM12 profile image
SLM12

I had low folate, indeterminate B12 and a ferritin level that has dropped on every blood test for the last year AND I've had my terminal ileum removed during right hemicolectomy for a neuroendocrine cancer (and 40% of patients with neuroendocrine cancer are B12 deficient) AND I had all the symptoms - brain fog, fatigue, peripheral neuropathy, tinnitus etc etc - and still it wasn't recognised - "It's likely the menopause" was what I kept being told!!! I too read all of the guidelines and when i eventually said to my GP that the guidelines said I should be injected EOD until symptoms stopped improving, she said "what guidelines"! I have had to fight and it was only when I saw a haematologist privately and he wrote to the GP saying EOD injections until no further improvement that they started treating me correctly. Currently on injection number 15 of EOD. I am just waiting for them to decide they are going to stop the injections (instead of trusting me to say when my symptoms have improved) 🙄. On the advice of my oncologist , I made an appointment after the first three weeks of EOD to provide my GP with an update on all the symptoms that had improved and those symptoms that persisted and my GP basically said "why are you here". Again she reiterated that it was probably the symptoms of the menopause - when i questioned her on why the B12 EOD injections had resolved many of the symptoms and called her bluff saying 'perhaps we should give all menopausal women B12 if the symptoms resolve like mine have, she was a bit taken aback - lol!! The whole thing has been a nightmare and when you are fatigued and with brain fog, fighting for what you need is very very difficult.

tomdickharry profile image
tomdickharry

You say you are a doctor?

Surely the answer lies within your own professional organizations?

Talk to your colleagues please.

MarvelousWays profile image
MarvelousWays in reply totomdickharry

I am a doctor, but I am not a GP , I have absolutely no say in what training GPs receive believe it or not! I wish it was that easy. And just like everyone else I was at the mercy of my own GP when it came to my own health issues.

I have talked to my colleagues, believe me they ALL know what I have been through LOL (often greeted by "morning marvelousways, how are your B12 levels today 🤣) and as I said I am actually doing some training with my wider team. BUT we are not really the people in a position to diagnose or treat this so whilst we can alert GPs to concerns, we are limited in what we can do.

HBEd profile image
HBEd

I have b12 deficiencies caused by two issues I paid for dna tests methylation pathway is defective ie I can't easily absorb folate or b12 or move it into cells and I am parietal cell positve too so potentially auto immune gastritis lead to PA

There are no gold standard tests

Total b12 is a v poor test as its active and inactive b12

B12 the most complex absorption pathway of any vitamins

Breakdown can happen at any point

My total b12 was 285 so indeterminate area but my red cell dist width was right at the very top

My white blood count and neutrophils were always at min end ...platelets too all now improved

I has severe pins and needles shooting nerve pains for 4 yrs . I suggested it was b12 defbut was told by one Gp your total b12 is fine' stop goggling and let us do our job'.... that was Apr 23 in Aug 24 I was hospitalised as I cdnt stand, think, tachcardic, breathless, muscle weakness, falling over, thought I was dying I get so awful. Even then medics disputed it was b12. It's poorly understood at all levels even hospitals I'd already been to A and E the week before as my heart rate wdnt drop at 137 the doctor did the reflexes test and put no issues when in fact I cd see there clearly was. Appalling

I read that neurological issues can present yrs before haematology changes and that was,me . So despite glaringly obvious evidence I was fobbed of in 2023 with just tel appts making it worse

The damage it has done is immense

I had dysautonomia too , digestive issues, dry eyes, high bp , and much more re joints etc lost my job my income my peace of mind

Systemic untreated inflammation has devastating me

My Gp now is listening but she said initially again yr total b12 is normal then I nearly fell over in her room. My bp was high I was breathless and tachycardic. I cd hardly stay awake. O2 sats were low

She explained down the track they get 2 lectures on vitamins at med school! Yet many conditions are in fact due to these!

They aren't taught about functional b12 or cellular issues

They only know a few symptoms associated with b12

Mine didn't know headaches was one !

She wasn't aware of new NICE guidelines

She didn't know about active b12 nor mma nor homocystine tests they can't access these either bar haematology doing them haematology refused her ref to them . Their advice was incorrect ie try her on tablets when I has nerve issues and refer her to neurology!!! What hope did I have but fort I read and read and looked it all put myself otherwise I dread to think what wd have happened to me by Dec 24

Hence why so many of us are missed

I've since had mri on my spine and brain

Fortune ok

However a few more mths it wdnt have been

I've no ankle reflexes knees are reduced already

I cant feel cold the same in my hands

I feel nationally the NICE guidelines aren't enough they are still ambiguous

Gps still stick to every 2 or 3 mths after loading

For me it isn't enough

I cant seem to acces any stored b12 many of us can't

Even haematology were poor and neurology said it wa fibromyalgia!

What is scary is currently I'm still on 3 a week but cd be taken away at any point

I don't feel safe for the future

Listening to the patient is paramount

So many are either not diagnosed until way down the track if yr like me where damage is done or they are under treated

NICE never mentioned functional b12 ie cellular issues that was poor

The guidelines can be ignored too

On vitamin b12 wake up on fb thousands are under treated due to I feel lack of knowledge but also lack of nurses appts

Answer training across the UK with real case studies to show the range of symptoms and what happens when the patient isn't treated correctly

Self injection to reduce nurses appts

I self inject

There are auto injectors too for those who struggle with needles

That is the future as b12 deficiencies are more prevalent than anyone realises

To not treat has dire consequences some with spinal and brain changes that are sadly irriversible

That in 2025 is unacceptable

MarvelousWays profile image
MarvelousWays in reply toHBEd

I personaly feel that saying they only had 2 lectures on vitamin deficiencies at medical school is a poor excuse. It is 30 years since I went to medical school. I have worked in my chosen specialty for 25 years. During that time I have done so much further learning, relevant to my spcialty. GPs will have done similar further learning whislt training to be a GP. Medical school is only the very start of a doctor's journey. And during that time new research has emerged and guidellines and treatments have changed. I have a professional responsibility to continue my learning relevant to my specialty and to keep up to date with changes and new guidelines. This is true of all doctors and specified by the GMC. I aprreciate GPs cover an enormous breadth of conditions, and obviously they can not be expected to know everything about every condition. But surely it would not be unreasonable to have even some basic knowledge and understanding of common presentations such as nutritional deficiencies.

HBEd profile image
HBEd in reply toMarvelousWays

Absolutely agree I'm just saying what my Gp told me . I find the whole b12 issue unbelievable, frustrating down right scary and without me working it out my Gp would not have

I even said to my Gp my concerns over lack of knowledge and that I was v concerned if she were to leave and will brooch this again re cpd issues but whether or not it translates into this practice ie discussing my exact case cause they cd learn an awful lot from me having had every single symptom listed in research papers is another thing.

I've never been astounded before but with b12 I've been speechless at the lack of awareness even with haematology neurology and Gps .. that to me is inexcusable

I also find iron folate issues also aren't understood either to the level they ought to be and they are crucial co factors in methylation pathways and b12 synthesis

I also have a medical background but not a medic

Dislancas69 profile image
Dislancas69

I feel ur frustration as you have said I am bewildered with the whole ridiculous situation, and I need to take myself out on occasions of the 😡 vicious circles we are sent on, for my own sanity , I try not to offend people but omg we are sent for test after test and we can feel and see for ourselves what is needed….

as the stress from it all is beyond immense , I also am not diagnosed fighting the system but have every PA symptom 8-10 years with a close family history of PA, recently abnormal ifa changed to satisfactory normal on nhs (not that the system cares) ,

there main care is not helping me and to throw as many obstacles in mine and my daughter who has also b12 / folate deficiency with acute stomach ulcers,but I believe we have both got PA or eventually this will be our diagnosis , my daughter is afraid to say the dreaded word PA in our surgery as she gets scorned upon like a petulant mid 30s neurotic/ hypochondriac,

I on the other hand know my surgery make me feel like a neurotic/ hypochondriac but am not afraid to shout from the roof tops I have PA (on a good day but I don’t get those much now ) .

It’s staggering 😲 our lives are still like this in 2025 when the lovely people on here and other forums have worked so tirelessly trying to show them b12 is the underlying issue, as us taking illegally smuggled (Royal Mail ) self injections actually make you feel less of a neurotic /hypochondriac…….and definitely more human ……

so to me the lights are definitely on but no one is home ,

Pernicious anemia : potentially fatal if not treated and managed adequately, surly it’s going to go backwards in time if your average gp has no clue how important it is to certain groups of people, and has been told it’s not that important to have knowledge about it

The community here really are helping us see we are not alone, I’m looking forward to the time I feel I’m not ranting and am helping others

I really wish you well on your journey through this (postcode lottery) oh I mean complex maze

MarvelousWays profile image
MarvelousWays in reply toDislancas69

yes, it is indeed unaceptable. I realise I am actually fortunate in that I was able to access the internet and information, and able to understand it and inform myself, as people on this forum have done. I was also fortunate to be in a position where I was able to pay for a private appointment with Dr Klein for an iron infusion and to start B12 injections. But there will be many, many pateints who do not have these options for all sorts of reasons. Pateints who would believe the dismissal by GPs and continue suffering needlessly. This demonstrates a real inequality of access to good quality health care which really should not exist today.

Coppernob profile image
Coppernob

Of course GPs should refer patients to specialists if they realise their own knowledge is inadequate. But they are incentivised NOT to refer, so they don't unless pushed.

Deejinsc profile image
Deejinsc

It is very sad and prevalent in the US too. I only see internists and really expect them to have a basic understanding of this and still they run the wrong kind of tests. Compromised methylation due to genetic polymorphism is a big part of the puzzle but these are expensive tests that no one wants to prescribe. Also a regular vitamin B-12 test (which shows abnormally high levels in self-injectors of B-12) does not distinguish between active B12 and inactive holoHC. An active B-12 test is warranted but my Dr is always asking a regular B-12 and lecturing me on the high level. I will ask for the active test well before my lab test this time and try to educate him further. perniciousanemia.org/b12/de...

Bellabab profile image
Bellabab

GPs were greatly effected by the austerity imposed by the 2010 coalition government as they were told to cut spending as much as possible. Austerity was an ideological decision to try and prove that Thatchers small state economic theory worked & just as Adam Smith said in the 18th. Century it does not. Part of that was quite a lot of medication was taken off prescriptions and made available in supermarkets. So now untrained people can buy pain killers, antihistamines etc. and use them inappropriately in multiple dangerous combinations & GPs are often unaware of what their patient is taking. Austerity also started the war against treating B12D as it was seen as very expensive given that nurse time had to be used to deliver the treatment. Regional boards nominally set up to unify treatment regimes also pushed austerity & IMO that was their main function.

Then along came the coronavirus pandemic and the medical profession was completely overwhelmed by the massive demands made on them which also exposed them to the illness which before vaccinations against it were available, was very dangerous. Despite their best efforts many felt they were at fault and took it very badly not least when over two & a half million Brits died - the highest death rate of any developed nation. It was not their fault as entirely due to political incompetence.

I studies zoology, chemistry & botany at "A" level at a technical college that covered the course in one year instead of two and we had a substantial number of students who applied to medical school and did not get quite good enough grades at their schools and came to top them up. They were all popular and very active socially and got in - so not the best scientists yet persistent & personable. Hence quite good at hints picked up rather than the science. I later worked at a university which set up the first degree in human biology in the World & quite a few of our students had wanted to go to medical school yet were refused even though they got good "A' levels and good degrees.

The science of B12d is not fully understood by any means & measurements of B12 levels are not reliable or accurate now we no longer use radio isotopes to do it. Hence GPs have to do their best in less than ideal circumstance. Then we have surgeries reviewing the work of their partners & employed GPs with a tendency to insist on sticking to the same treatments.

LynetteinUSA profile image
LynetteinUSA

Thank you for your post. Here in the US I find the ignorance/indifference just as you describe. Happened with me again yesterday. While I'm not in the medical field, I am fairly educated with a masters degree and can most times ask intelligent questions of my docs. Unfortunately, it just isn't a topic they find that important. Nor does it seem like they are interested in learning more. As long as your numbers are in the normal range you're good to go.

MoKayD profile image
MoKayD

I'm in the US and my GP told me that in the 60s doctors gave out B12 shots like they were candy. He said B12 seems to have dropped off the radar for doctors now. My GP always looks for low B12 with his older patients. You have to wonder why this changed over the years.

SlothMode profile image
SlothMode

Hiya MarvelousWays,

Thank you for your post. My personal view is that B12 deficiency should be treated better. It is a Doctors duty of care to look after their patients. I feel the fact a severe B12 deficiency can cause irreparable damage needs to be addressed. I myself finally had a diagnosis of fibromyalgia in 2012 after being tested for everything else. The one thing that wasn’t tested and really should have been was my B12 . It took me blacking out and having many falls before my Doctor acted and took bloods. My b12 was dangerously low so was my iron and folate. I was that week rushed through the 2 week loading doses. Given iron tablets too. I never had my active B12 tested. Fast forward to now since I have been self injecting after my B12 was called borderline and injections stopped. I like many others here have to buy our own B12 and equipment to SI. I am now not blacking out, falling and have lost half my fibro pain. I can walk around my flat now and I feel so much better in myself. They need to run trials to see that B12 is that magic wand which helps so many conditions. 😊💜

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