Don't be fobbed off

My grandmother was paralysed from the waist down before being diagnosed with Pernicious Anaemia. She was disabled for many years before eventually dying of stomach cancer. My mother and two of her siblings had autoimmune thyroid disease.

My symptoms are very suggestive of B12 deficiency but my red blood cells are normal and B12 level is 300. My GP suggested cobalamin 150mcg daily by mouth.

As a doctor myself I had a tough time persuading him that;

Symptoms may occcur long before the red cell changes.

The lower limit of the normal range of B12 is probably much too low.

Symptoms can occur before that lower level is reached.

Only total serum B12 is measured, not active B12, which is a more accurate indicator.

Since my problem was almost certainly poor absorption, not inadequate dietary intake injections would be most effective.

There are no studies to show low dose oral supplements are as effective as injections. The studies only compared 1000 and 2000mcgs with injections.

There is no evidence that high dose B 12 is harmful, nor is it expensive.

I finally accepted a compromise of 1000mcg daily.

He had discussed my case with other doctors who agreed with his flawed analysis before suggesting the low dose treatment for me. As a doctor myself I am well aware of the perjorative way in which many GPs treat patients, particularly women, presenting with TATT - tired all the time - and other vague symptoms. My grandmother carried the burden of such cavalier disregard! Fortunately I was probably better informed than his colleagues and was able to argue the toss and insist on proper consideration and treatment.

I am generally pretty assertive and if it happened to me I dread to think how much of a runaround most patients get.

Arm yourselves with the fact and DON'T BE FOBBED OFF!

73 Replies

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  • chris193 - if Dewbuc agrees this might be a good story for your session at the GPs conference

    healthunlocked.com/pasoc/po...

  • Happy to help.

  • It's good to have the comments of a medical professional who is aware of the struggles so many members of this forum have to get the "right" treatment.

    Thank you Dewbuc

  • I'm happy to help if I can.

  • Hi,

    Really interesting to hear from a medical professional. Thanks for sharing your story.

    "I finally accepted a compromise of 1000mcg daily."

    is this an oral tablet? Or sublingual?

    If you're in UK, I thought BNF (British National Formulary) Chapter 9 Section 1.2 indicates B12 injections for those who have non-dietary B12 deficiency.

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

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

    Has your own GP seen the following articles? Info may not apply if you're not in UK.

    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

    PAS (Pernicious Anaemia Society)

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

    PAS website has section for health professionals

    pernicious-anaemia-society....

    B12 books

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

    Martyn Hooper is 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 book about B12 deficiency with lots of case studies.

    I am not medically trained just someone who has spent years trying to find out what is wrong and yes I have TATT on my medical notes somewhere.

    "Arm yourselves with the fact and DON'T BE FOBBED OFF!"

    Agree with your comment above. it has taken nearly 20 years for it to be acknowledged that my symptoms are most likely those of B12 deficiency.

  • I've looked up the evidence for oral versus injected B12. With high doses of B12 1000 or 2000 mcgs orally the absorption does not depend on gastric acid or intrinsic factor. Sufficient is absorbed in the absence of either and may even be better than injected B12. Absorption from food is of course impaired by lack of acid or IF. The current thinking is that sublingual B12 does not enhance absorption.

    I'm happy that oral medication at the 1000mcg level will be sufficient. I am not happy that 150mcgs would have been effective.

    We are fully aware of the cost to society of an ageing population and loss of proprioception and ataxia contributes to falls and consequent high morbidity and loss of independence in the elderly.

    There is also some evidence that low levels of B12 may associated with cerebral dysfunction in Alzheimer's or micro vascular dementia and in Parkinson's disease, all of which have a very substantial implication for healthcare costs in the future. Any effect of B12 deficiency may be in the pre-symptomatic phase and treatment with B12 has not been shown to be effective in treating established symptoms.

  • "I've looked up the evidence for oral versus injected B12. With high doses of B12 1000 or 2000 mcgs orally the absorption does not depend on gastric acid or intrinsic factor. Sufficient is absorbed in the absence of either and may even be better than injected B12."

    I am curious what studies you've found about oral versus parenteral B12. The only studies I've seen focused solely on the correction of hematological markers (macrocytosis) and did not mention any benefit at all to neurological symptoms. I would very much like to see more comprehensive research showing that oral tablets are truly as effective as injections before the whole of the medical establishment jumps onto that bandwagon. (It seems to be jumping in that direction without adequate research IMHO.)

    Personally, I have found that oral B12 doesn't last as long as an injection even at the same dosage level. When I took 1000mcg of oral B12, I would feel it work for a number of hours, but then I would crash afterwards and it was clear it had worn off. When I have an injection of 1000mcg of B12, it lasts me a week (or slightly longer).

    With tablets, the recommendation is daily. Can you explain to me how 1000mcg x 7 is a better dose than 1000mcg injected once a week? That math doesn't add up to me.

  • How come that oral b12 can be absorbed without intrinsic factor? I thought that intrinsic factor protects b12 in the ileum until it can be absorbed?

  • PS I daren't show the links to my GP. I've already insulted him enough and he is fact a very good and caring GP, just ignorant of the realities of B12 deficiency. The references he has used give incorrect unscientific advice, not based on current evidence, and the colleagues he consulted are equally misguided! Our knowledge base is increasing, but painfully slowly for patients struggling to be taken seriously.

  • The lower limit of the normal range of B12 is probably much too low.

    I would have to disagree. Gambit62 has the proper numbers but, from memory, the current serum B12 test classifies about 25% of people with B12d as non-deficient. But it also classifies 5% of non-deficient people as being deficient.

    If we assume that 10% of people are actually deficient then the current ranges give the following results from a group of 200:

    20 people are deficient. 15 of them are diagnosed as such, 5 are not.

    180 people are not deficient. 171 people are diagnosed as such, 9 are diagnosed as deficient.

    So 24 people are diagnosed deficient - but only 62.5% actually are. We're treating almost half our patients with unnecessary treatments.

    If we raise the lower limit so we catch 90% of those who are deficient then we also categorise 25% as deficient who aren't.

    Now, our 200 people give:

    20 who are deficient. 18 diagnosed, 2 not.

    180 not deficient. 45 diagnosed as deficient, 135 not.

    This time we have 63 diagnosed as deficient but over 70% of them are fine.

    We don't need a raised lower limit, we need a better assay or we need to use multiple criteria.

  • I think over diagnosis does not present a problem as even massive doses of B12 to treat cyanide poisoning have not been shown to be harmful. As a water soluble vitamin, excess will be excreted in the urine.

    Under diagnosis, however, could have massive health implications for individuals and massive cost and caring implications for society as a whole. It is widely recognised that under diagnosis is a massive issue generally associated with the false belief that normal red blood cells and an absence of anaemia invalidate a diagnosis of B12 deficiency.

    I do not disagree that better testing is highly desirable in order to differentiate between total and active B12 along with more widespread availability of more sophisticated tests. However, since this could be a long time coming it would be a logical and pragmatic approach to increase the index of suspicion and to raise the lower limit of the normal range. Neurological symptoms certainly occur with levels within the currently accepted normal range for the UK. Many other countries accept 500 or even more as the lower limit of normal!

  • Many other countries accept 500 or even more as the lower limit of normal!

    No they don't.

    This is an oft-quoted, never backed up, falsehood.

  • You are correct. Japan has a normal range of 500-1300 and Pakistan and Germany have a low normal range that exceeds the UK level, otherwise world wide levels are similar. (See link below)

    However, the low normal level is almost certainly too low to enable detection and treatment of sub optimal levels of B12 which may well contribute to morbidity if not mortality and the wide range of well recognised deficiency symptoms. Better to be safe than sorry and focus on prevention.

    health-boundaries.com/what-...

  • You are correct. Japan has a normal range of 500-1300

    Do you have any reference to this apart from the one paper from 30 years ago that has been quoted all over the interwebs?

    That paper provides no evidence that this is the accepted normal range in Japan.

  • So prevention is not something you believe in.... let them all collapse and then we might deal with them - sort of attitude - is simply not good enough nor acceptable anymore. if so many people feel so unwell with B12 levels under 500 then the acceptable range levels for B12 deficiency should be raised.

    . Why all the resistance in moving forward in trying to help people remain as healthy and as well as possible? Surely, any scientist/researcher/doctor should aspire to that standard and NOT remain in the dark ages, with the long accepted norms and box ticking attitude.

    Why indeed let people suffer so much? What and who can possibly benefit from such a poor practice?

  • So prevention is not smerthing you believe in

    Are you really suggesting we treat everybody with serum B12 below 500 with prophylactic injections of B12? Even though that would mean injecting everybody in the world.

  • In short, no,. However as you did suggest in an earlier post doctors should do all the necessary tests to either prove or disprove B12 deficiency, and or PA. They DO NOT. These conditions will lead to disastrous consequences otherwise, and of a drawnout and painfull premature death. Is that an acceptable option in the 21 century in a so-called wealthy country? I think not. So what do you suggest?

  • What do I suggest?

    At the risk of repeating myself...

    Patients presenting with symptoms of a B12 deficiency should have a range of tests done - serum B12, holotranscobalamin, MMA, folate, Vit D, HbA1c, thyroid hormones, iron, etc.

    The gold standard should be - do they improve after a course of B12 injections?

  • Indeed, I understood that. However, at the risk of repeating myself too, GPs do not agree to have those tests done even though the patient presents with obvious serious symptoms. So, it seems we're going in circles here... GPs follow ranges and just tick boxes regardless of patients's symptoms... If levels were raised then GPs might be just that little more helpful.. or perhaps, pigs will fly... One can all but hope.

  • Suppose we did treat everybody who presented with a serum B12 of less than 500.

    This study, from Japan (where the limit is supposed to be 500) jstage.jst.go.jp/article/jn... shows that the mean serum B12 in a group of normal subjects was 340 pmol/L (SD 50 pmol/L). That means that 99% of normal people in Japan would have serum B12 lower than 490 pmol/L (three SDs above the mean).

    That would make the whole thing useless. If we're going to accept that 99% of people given a test would fail that test then we might as well assume that 100% fail the test and not bother doing the test at all.

    There are many other modern studies that show similar ranges in normal people.

  • The suggestion is not that you should treat anyone with a level of less than 500.

    If a patient presents with suggestive symptoms, especially neurological symptoms, and especially if they have a family history of Pernicious Anaemia or other auto immune disorders or a history of veganism then a level above the bottom of the normal range should be investigated further and treated if appropriate. To fail to follow this course will inevitably result in unnecessary suffering and quite possibly irreversible symptoms of neurological damage..

    If a few people are treated who have no gross deficiency, that would be much less of a problem

  • My relative met all the criteria you mention, plus psychological symptoms (hallucinations, hearing voices) - a little known symptom of B12 def., known long ago as 'megaloblastic madness'.

    Even if patients are aware of the complexities of B12 deficiency, because they are told their B12 levels are normal or too high, it is possible they will give up - and agree the symptoms should be attributed to something else, risking eventual permanent damage by not receiving early and adequate treatment.

    B12 deficiency changes lives : trust in the medical profession is compromised, relationships break down, families divided. jobs are lost with consequential financial hardship and further stress in having to deal with today's intransigent authorities.

    Moreover, delayed treatment means that many will have to cope with devastating memory loss, permanent disabilities, etc - often alone - that may eventually lead to loss of independence and sale of property to fund care.

    All this for the sake of a simple and relatively cheap trial of B12 injections !

  • this a recent post which is my thoughts on the debate around changing normal

    healthunlocked.com/pasoc/po...

    personally I don't think that just treating everyone with B12 shots is the way to go, ie I don't think it is without problems - the full metabolism of B12 is rather complex and not really fully understood - and I suspect there are a lot of genetic factors that really aren't on GPs radars that mean it isn't just a question of giving someone loading shots and then maintenance shots and letting them get on with it. I was extremely ill after loading doses and on maintenance doses for over a year before figuring out that I actually needed to keep myself continually doses up with really high B12 levels.

    My balance was starting to go before loading doses - memory was bad and my mental health was deteriorating but all got significantly worse after loading (though there would be very brief respites when I had a maintenance shot). My mother had loading shots a couple of years ago and seemed to have similar experiences to myself. Her sister and my brother both appear to have B12 problems which they manage to treat rather effectively with nasal sprays in much lower doses than I would need.

    For me the effects of a maintenance dose wear off within a day. Many of us who have had loading doses find that we need to keep our B12 levels north of the top of normal range (and for some of us even north of the limit of measurable range) in order to feel well and cope with life.

    Yes, it is true that B12 isn't toxic but there is more to metabolism than toxicity - the body is a delicately balanced system and it is possible for too much B12 ... and too much of the wrong B12 ... can really put things out of whack for some people.

  • Totally agree.

    That's why I say we need to use multiple criteria when deciding who needs treatment. Not just a random, unjustified and unjustifiable, raising of the lower limit.

    Patients presenting with symptoms of a B12 deficiency should have a range of tests done - serum B12, holotranscobalamin, MMA, folate, Vit D, HbA1c, thyroid hormones, iron, etc.

    The gold standard should be - do they improve after a course of B12 injections?

  • If the gold standard is the response to I tra muscular B12 then the other investigations are unnecessary! There are a lot of factors to consider when gauging a response to treatment - not least the placebo effect - so this is a factor of course but not the gold standard.

    The tests you mention would be the gold standard for diagnosis. but I doubt it will happen any day soon. In the interim period better to treat than risk irreversible damage.

  • Eaoz

    Agree with you here in stating "patients presenting with symptoms of a B12 deficiency should have a range of tests done -serunm B12, holotranscobalamin, MMA, folate, Vit D, HbA1c, thyroid hormones, iron, et.. " (by the way, I do hope that by saying "thyroid hormones" you meant not just the basic THS and T4... but also the most important FT4, FT3, rT3 and thyroid peroxidase + thyroglobulin antibodies?)

    That series of tests would be most important in diagnosing B12 deficiency and or PA, However GPs do not really "think" all such tests are necessary and it has been my experience, while feeling so very ill (losing my balance, passing out, neurological symptoms, extreme fatigue and utter lack of energy, serious cognitive problems and a marked change in personality + much more + having autoimmune diseases) that GP was not prepared to carry out further investigations. I had to fight all the way, for one year, to obtain the treatment I so needed.

    Thank goodness patients can do intelligent research nowadays, check guidelines (although these are not always that helpful, but...) and present facts to GPs in order to receive the much needed treatment. Within 2 days some of my symptoms lessened and then disappeared. My balance has returned. Furthermore I, like Gambit, and no doubt many other people need much more than the 6 loading doses and 1 three monthly maintenance dose. i need 3 injections/week.

    Doctors need to be seriously educated about B12 deficiency as well as about thyroid dysfunctions. They are blissfully ignorant and appear unwilling to change by learning. They maintain an arrogant and unchangeable attitude. Patients shoud never have to "fight" for the right to treatment, more so when they are feeling so ill, so very low, unable to function properly.

    So how can this situation by which patients and doctors are at loggerheads be changed? It has to do with the lab reference ranges which doctors follow religiously ticking the usual useless boxes that need to be looked at and altered, as well as better education of GPs.

    A patient and a GP should never be placed in a situation whereby the patient has to fight for the right for adequate treatment.

  • As you correctly say the metabolic effects are very complex, but I believe we should stick to trying to prevent irreversible symptoms in patients who have difficulty in gaining recognition for their problems. Most GPs will not understand the complexities of these problems so it's better to focus on the prevention of neurological harm and err on the side of prevention.

    The problem with psycholigical symptoms is that they cannot be objectively quantified so will probably remain anecdotal.

  • sorry but I think we need GPs to understand the limitations of tests - and that is not just about B12 it is about other conditions, eg thyroid - there has been a growing tendency to shy away from clinical evaluation. And even in testing it's about context.

    There also needs to be a greater appreciation of the fact that medicine isn't always (possibly never) about one size fits all solutions.

    Personally I'd like to see a lot more research on different options for treating B12 and much more recognition that IM isn't the only solution - SC can work very well as well - some studies show not much difference - and moving to SC takes away a lot of the nonsense about it being dangerous for patients to treat themselves that ends up with only being able to get it at surgeries - though training patients to do IM would also be helpful.

    Really not sure what your reference to psychological symptoms is supposed to mean ...

    Not every evaluation is based on quants, nor should it be. We are people not numbers.

    I am the only member of my family who has had significant psychological problems - depression, anxiety and after diagnosis significant problems with depresonalisation. For other members with or with suspected B12 issues it has been around balance and degrees of cognitive impairment that are measurable.

  • All I was trying to imply is that psychological problems are difficult to evaluate quantitatively and objectively. I believe they are equally as important as physical symptoms.

  • thank you for clarifying.

    The point I was originally trying to make is around the risks of inducing a functional B12 deficiency in patients by treating them with high doses of B12 and raising there serum B12 to high levels. I don't have any statistics on how prevalent this reaction is (but it obviously is frequent enough for the symptoms of B12 deficiency to be recognised as a consequence of elevated B12 levels caused by some forms of cancer). Functional B12 deficiency has all the same consequences as B12 deficiency caused by absorption problems - B12 doesn't move from blood to cells so cells don't have enough to operate properly.

    If this condition affects say 10% of people then that would mean that treating everyone just based on serum B12 levels would mean inducing a B12 deficiency at the cell level in a significant number of people.

    GPs may be pretty far behind the curve on diagnosing B12 deficiency - they are even further behind the curve on treating it and the chances are that someone who presents with functional B12 deficiency as a result of being treated unnecessarily is going to be dismissed - can't be B12 because you are being treated (my own experience) - and functional B12 deficiency will kill you and lead to neurological damage just as surely as B12 deficiency from absorption problems. It can be treated by keeping levels really high but it seems to me to be poor medicine that would countenance causing this reaction in people and condemning them to injections for life on a high frequency basis or needing to supplement continually without it actually being necessary to resolve an absorption problem.

    Serum B12 should not be used as a single measure for B12 deficiency. Symptoms should always be evaluated.

  • Thank you. That's very interesting. Functional deficiency at the cell level is not something I'm familiar with. I would like to know more.

  • Hopefully someone else will be along with better links but here are a couple:

    ncbi.nlm.nih.gov/pubmed/191...

    ncbi.nlm.nih.gov/pubmed/146...

  • Yes, I agree Gambit that more research is needed but, as Dr. Wilhelmina Reitzeimer mentioned at the PAS conference, it can take approx. ten years !

    Meantime, everyone here seems to be on the same page in considering symptoms to be paramount so, listening to experts on the frontline speak of possible damage to brains at levels below 500/550, surely raising the bar would allow more symptomatic patients access toan earlier diagnosis and treatment with injections, rather than them risking valuable time and permanent damage waiting for referrals to specialists, who may also be unfamiliar with B12 deficiency,

  • Well said!

  • I think B12 injections are beginning to kick my foggy brain into life at last🤗

  • As you rightly said research takes too long but must continueMeanwhile things/attitudes/ willingness of GPs to listen to patients and understand their symptoms is most important so that many tests can be done in order to diagnoseB12 deficiency as soon as patients seek help thus preventing serious troubles and fatality. Labs need to raise the ranges levels so that GPS feel they can order the many tests required.

  • Gambit,

    You are expressing my thoughts entirely, not only in relation to B12 deficiency but also thyroid dysfunctions. I have just made a few points to that effet in a reply to Eaoz, above.

    GPs, medical professionals are uneducated with regard to these 2 conditions (there may be many more..) . However, no matter how often I tried to explain to my GP (in a nice, intelligent and polite way) about B12 deficiency, thyroid issues... she seems unable and unwilling to take it on board and change her concrete mindset. They are all the same it seems. Unwilling to even question the posibility they might be wrong. How arrogant and narrow-minded is that?

    Because of such a "retrograde" attitude and in despair patients have felt the need to educate themselves and treat themselves. They, often, have to source B12 and thyroid supplies (not that dreadful Levothyroxine) supplements from Europe. That should not be necessary, it is shameful that so many patients are ignored, negleted and left to suffer so much, their lifespan being shorthened.

    And to add insult to injury GPs push antidepressants like sweeties. So clearly the situation - teaching of medics, research, etc. - needs to change.

  • Thank you for posting - I agree absolutely Dewbuc, as misdiagnosis of ME, later dementia, with late and inadequate treatment with injections, had devastating consequences for a member of my family.

    Re. Serum test levels, Sally Pachlok and Prof. David Smith both agree they should be raised as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml. " Sally Pacholok also quotes an article in 'Neurology', 2008, reporting that low B12 causes brain atrophy and cognitive impairment in the elderly.

    "In the elderly, it can cause dementia, says David Smith, Professor Emeritus of Pharmacology at Oxford University.

    ‘B12 deficiency is more common after the age of 60 and, once levels fall below 500 pg/ml (picograms per millilitre — the normal range being 500 to 1,000), the brain starts to deteriorate at twice the usual rate, making memory loss six times more likely,’ he says.

    Pernicious anaemia is also linked to tinnitus (affecting seven out of ten sufferers), the skin conditions rosacea, vitiligo and psoriasis — it may even be linked to multiple sclerosis, thyroid disease, rheumatoid arthritis and psychosis, says Dr Chandy.

    ‘Unfortunately, too few doctors are aware of this or that treatment is cheap, easy and free of side-effects, with robust clinical evidence for its efficacy.’

    Many people are not being diagnosed — and, when they are, they are failing to get the treatment they need, adds Professor Smith.

    ‘NHS guidelines insist B12 deficiency be identified by one of two possible blood tests — both of which are unreliable.

    ‘One test looks for macrocytic (enlarged) blood cells, which can be a sign of deficiency. The other measures the total amount of B12 in the blood. But you can be B12 deficient and sail through these tests.

    ‘GPs need to look for symptoms that suggest B12 deficiency — then see if these improve with B12 treatment.

    'The definition of deficiency in the UK is below 200pg/ml — but harm to the brain can begin at anything below 500.’

    But therein lies another problem. Most primary care trusts will fund treatment only when a diagnosis has been made."

    In case you haven't seen it, BMJ latest research document :

    bmj.com/content/349/bmj.g5226

  • Thanks. An excellent reply.

  • Thank you!

  • Hi Dewbuc,

    Have you had an Intrinsic Factor Antibody test? You mentioned a relative with PA.

    Flowchart below from BSH Cobalamin and Folate Guidelines outlines when PA and Antibody Negative PA can be diagnosed.

    stichtingb12tekort.nl/weten...

    Risk factors for PA and B12 deficiency

    pernicious-anaemia-society....

    PAS news item about oral tablets for B12 deficiency

    pernicious-anaemia-society....

  • Very interesting. I'm having my Intrinsic Factor measured on Tuesday.

  • Hope your GP is aware that it is still possible to have PA even if IFA result is negative (See flowchart in my post above).

    Martyn Hooper, the chair of PAS, tested negative on IFA test more than once before testing positive.

    "I'm having my Intrinsic Factor measured on Tuesday. "

    I think I read that having an IFA test close to a B12 injection can influence the result. Not sure how oral tablets might influence IFA test

    labtestsonline.org/understa... (see last paragraph on test sample page)

    I gave my GPs a copy of Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

  • He may not be aware but I am!

  • It would be interesting to know how you will "educate" your GP in relation to the false results - both negative and positive ways - that one gets from Intrinsic factor test? However, being a GP yourself might well influence your gp's attitude... Most patients are dismissed, neglected and carry on having a miserable life till they die.

    Good luck with the test and please do let us know how things progress. Do hope you will get the treatment you need.

  • I'm retired from practice now, but I hope I would have always shown care and consideration for the problems caused by B12 deficiency. Having seen my grandmother rendered paraplegic was a shocking experience for me when I was a school girl. I think this has always coloured my attitude to patients in a good way. I wish all GPs showed a similar attitude to their patients, but I know this is very sadly not the case. One should not have to fight for proper care in the UK in the 21sr century!

  • I can understand how traumatic it must have been for you, as a young girl, witnessing the deterioration of your grandmother's health. No doubt this has influenced your thinking and the care you have given your patients over the years. Because of such a horrendous experience you became a caring and considerate doctor.

    It is refreshing to know a doctor, although retired, has become aware of the incredible barriers patients face when visiting a GP. Thank you for your understanding.

    My very best wishes to you.

  • Thank you for your delightful reply.

  • Sleepybunny, I somehow doubt very much your GP has read the book.... They all should read such a book but...

  • Unfortunately the IF test is unreliable.... sorry.

  • I hadnt realised what a can of worms I'd opened!

    I really believe we are in urgent need of revised evidence-based best practice guidelines and a much more realistic normal range reflecting sub optimal levels.

    GPs are generalists and very few will have the depth of understanding of most of the contributors to this thread. They are castigated if they fail to follow guidelines so it is a massive disservice to them and to their patients if the current guidelines are totally unrepresentative of the scientifically established facts relating to B12 deficiency.

    I would have thought the risk of litigation resulting from irreversible neurological damage was sufficient incentive for individual GPs and the NHS as a whole to act with the urgency that patients require.

    All patients should ensure that it is a matter of record that they have identified the risk of permanent serious harm without effective treatment of a deficiency of B12, even if the level is within the currently accepted normal range. That should concentrate medical minds!

  • unfortunately one of the other problems in the UK is actually the way medicines are licensed - which relies upon manufacturers to get treatment regimes recognised. Hydroxocobolamin is only licensed for use in treatment of B12 deficiency in the UK at 8 weekly intervals in relation to maintenance doses - this poses a huge problem for the many of us who find this interval too long.

    as you can see the issues of diagnosis and treatment are manifold.

    I don't expect GPs to be more than generalists. I do expect them, as would appear to be the case with yourself - to recognise that and be willing to work with and listen to patients when they point out relevant research and highlight discrepancies between treatment and guidelines on treatment.

    However, it also needs to be recognised that, because of the way B12 problems cut across the way most medical specialisms are arranged because it affects so many systems in the body, that even specialists that are used as reference points by GPs are often as ignorant, and sometimes even more ignorant of how B12 works, and the issues it causes. People are working to raise awareness - PAS amongst others has a very good reputation as a very effective group in raising patient issues up the agenda at all levels.

  • Very well said Gambit.

    With reference to specialists who seem to know very little about B12 deficiency, I saw an haematologist, privately, a few weeks ago. He was horrified I was still having B12 injections 3 times/week.... Stating my blood B12 levels were way too high (as expected since my body was flooded with B12! ). Before he tried to fob me off that B12 was toxic I told him B12 was water solble and any excess would be excreted... to which he reluctantly agreed. He also said one had to be careful of research... so much bad and worthless research... to which I replied I only read serious research.

    The point I am making is that basically the medical professionals do not like patients becoming very aware and understanding, in certain cases better than themselves. They have been used to their own ways for far too long and need to understand patients will not put up with their obstinate and well trodden ways any more. Indeed, no matter at what level, there is still too much ignorance and an unwillingness to try and see things under a different angle. They do not want to change their ways... We patients must push until something changes. Will take a very long time... sadly it may never happen.

  • I totally agree with you. Many years ago I was recommended a book called "Power in the Helping Professions" written by a psychoanalyst Guggenbuhl Craig. He advocates that doctors, nurses, social workers should all relate to patients on an equal basis and not as a superior, powerful, all-knowing person relating to an inferior, ignorant and powerless individual. Sadly most doctors are very reluctant to step from their pedestals!

  • You are doing an excellent job in raising awareness. The general public as well as GPs need to be brought into the 21st century. With a large ageing population this becomes even more relevant and important.

  • Dewbuc

    Indeed you have. So very pleased you, not only as a patient but more so as a GP have become aware of the many difficulties patients are facing every day. When one feels so ill, weak, extremely vulnerable, often lonely it is so hard to try to make a doctor, who seems more that reluctant to accept there is a need for help, support and recognition of a serious medical problem, for tests to be done and treatment to be given.

    In despair I decided to write to my GP, listing all my symptoms, adding guidelines and serious research papers, highlighting symptoms relating to mine and concluding i was in serious fear for my long term physical and mental health and that I would like to be given B12 injections, asking for this letter to be included in my records (I knew letters are included in records but wanted to show I wanted to be taken seriously).

    I did eventually get the treatment reluctantly, but to my surprise and horror I read a referral letter my GP wrote to a consultant I went to see privately in which she categorically said "She demanded the B! injections (yes the ! was intended for 12, for effect of derision, no doubt) although she is not B12 deficient"... So you see how can a patient actually have faith in a GP who clearly could not care less... as for respect... it goes both ways. The GP had dismissed, ignored my symptoms... Needless to say I decided not to give such a wrongful letter to the consultant.

    We are far removed from the Hyppocratic oath... "... do not harm, etc....

    I wish to make you aware many of us patients are also fighting to get accurate tests and decent treatment for hypothyroidism. It seems to be even worse than the problems we encounter with B12 deficiency. We despair and are most worried. We are fighting to get the prescribing of T3 reinstated. Sorry to mention this situation in a B12 deficiency forum but just added food for thought.

  • I admire your determination and I will apologise for digressing too!

    I was told for years that I was euthyroid as my thyroxine level was in the lower range of normal. It was only when I sought specialist advice from an endocrinologist after developing ongoing exhaustion two years after chemo that my problem was recognised. He recognised that the normal range of thyroid function was just that "a range", and a fairly arbitrary one too, and that an individual patient's requirement was also just that totally individual. He recommended keeping my results at the upper end of the spectrum! (Interestingly when I developed what was almost certainly auto immune thyroiditis, with a serum thyroxine in excess of 70, I had no adverse symptoms whatsoever and it was picked up on my routine blood test!)

    In retrospect much of my exhaustion post-chemo was, I am now certain, due to B12 deficiency. I had been prescribed Omeprazole for six months to counter the symptoms of an irritated oesophagus and stomach. I suspect this depleted my B12 levels and was of course totally unrecognised - even by me! One of the most worrying symptoms of chemo for many is the overwhelming exhaustion and it is the symptom for which no treatment exists.

    It would be an interesting project to look at B12 levels wherever unexplained exhaustion exists. I would not be surprised if this opened an even bigger can of worms!

  • I hope IF test goes well Dewbuc

    Martyn Hooper spoke in the House of Lords of the unnecessary suffering and expensive treatment that would be unnecessary if this serious condition was diagnosed in the early stages.

    The consequences of PA/B12 deficiency with subsequent nerve damage has also been debated in the House of Lords: "To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed." Countess of Mar - Crossbench

    Tracey Wittey - B12def., and Dr Chandy - B12org, have very informative websites, - both worked tirelessly to help patients and raised awareness through the media to the inadequacies of diagnosis and treatment:

    b12deficiency.info/blog/201...

    For the life of me, I cannot see what more can be done. There is something very wrong with a system that denies evidence of serious neglect with such devastating consequences.

  • Indeed there is something extremely wrong with a system denying evidence, and serious negligence on part of the whole medical profession who are so reluctant to change their biased and ignorant views and opinions and who are only too keen to push patients in taking antidepressants rather than looking for the root cause of problems.

    Of course that would take too much of their time... Much easier to tick boxes and looking at erroneous ranges levels. Much easier to just push a key to renew the usual medicine: BP tablets, statins, diabetes meds.and their favourites: antidepressants. To actually try and find out what is the problem seems to be beyond any GP's ability these days. They seem totally unable to observe symptoms, even denying them when patients point them out and try to make patients believe it is all in their head.They must think we are stupid. We wonder what exactly they are being taught in medic schools... and why they are paid so much to help so little.

    Indeed for the life of me too I can not see what else can be done. It seems to be an impossible task.

  • Sadly I totally agree with you. At times I am ashamed to call myself a doctor in these days of computer guidelines and tick box bean counting! I gave up general practice many years ago before the doctor-patient relationship disintegrated into the ether under the guise of raising standards.

    I am saddened when friends tell me of their experiences and seek information, advice or reassurance regarding their medical problems. Best practice now is often much more about generating quality points to boost income rather than treating patients well.

    In my day as a half time GP I had about five hours of face to face patient contact five days a week for an extremely meagre salary. My au pair cleared more cash per week than me! I was willing and able to spend time talking to patients to elicit the real problems. Those days have gone and it has not always resulted in better treatment or greater patient satisfaction.

  • Thank you for your most intresting and honest replies, as well as your willingness to understand and accept the dreadful and desperate situation all patients who have serious health problems find themselves in. Indeed, I hit rock bottom despair quite often, just watching my life disappear in front of me, feeling unable of truly finding a way forward to achieve slightly better health in order to do what I would like, enjoy life before I die. When one gets in their 70s any time "wasted" through lack of wellness is scary, leaving one feeling there is nothing else to look forward to... but the inevitable! It makes you feel vulnerable and isolated and that there is nothing you can do, no one willing to help.

    Yet, I have always been a fighter, am a fighter, but it's becoming harder because of exhaustion, getting older... I decided to see quite a few consultants, privately, in trying to make things move forward even slightly.... It has helped marginally, mainly in ruling out certain conditions which is helpful in one respect of course (I would have had to wait years to find that out via NHS/GP) and GP was not willing to refer me to some specialists either stating she could not "justify" it!!! or that such or such consultant would not be interested in my situation! The reality is she did not want to spend the surgery funds, as most of us are awre by now that any money that is not spent on patients can then be redistributed within the gps! She even told me she "had a hard time" obtaining the B12 treatment for me!

    It is so obvious GPs nowadays are not in the profession to truly care for patients... It is all about status, privilege and money - paying their children private school fees, skying holidays, etc . They are paid too much for what they do. That was not always the case. The fact they are left to manage their budget now is not a good idea. It would be a useful thing for surgeries to be monitored by an independent body like OFSTED for schools.... The majority would fail and would be exposed for the scam it is. However, that will never happen.... doctors would have the right to portest, unlike underpaid hard-working teachers. The medical profession has always been protected really.... It is fairly useless making any complaint as usually they will win. I exclude gross errors of negligence/lack of proper care that are signaled in the national news of course.

    Although one can try and make people aware that does not mean they will do anything in trying to change the situation. Too many are intimidated by doctors, feel bullied and unable to fight back when they are told there is nothing wrong with them or that all they need are antidepressants. So what should people do to change this unacceptable practice? Those who persist in demanding better care are labelled as a nuisance, an awkward patient. One has to be careful as any GP could ask one to leave the practice if not happy with the service - or lack of - given.

    Clearly it needs more than a few aware, persistent and intelligent patients to have a significant impact on the medical profession as a whole in order for things to change for the better. A patients/GPs working relationship. Cannot see this happening any time soon, sadly.

    Sorry I have to be so honest about the way I and many patients feel... sorry because it sounds like you have been a most caring and compassionate doctor post retirement. Through ill-health you have yourself become aware of the problems we mere patients are facing on an on-going basis. It is good to "know you" via this wonderful forum. Some members are so knowledgeable and all are most supportive. I am grateful to them all, both on this forum and the thyroid forum too.

  • You make very good points.

  • Thank you.

  • My son had developed foot drop in one leg from pressure at the fibular head from sitting for long periods with his,leg crossed and at my instigation had his B12 measured. 217! The GP is prescribing B12 orally, but he hasn't yet started it.

    He now tells me he has had pins and needles in both feet and has been feeling exhausted fro a long time!

    What tests would you recommend he have and what treatment?

    Your expert opinion would be much valued.

  • I think it best to start a new question/thread as I think your post was not directed towards anyone in particular 😊 Also more people will see it .....

  • "The GP is prescribing B12 orally,"

    As far as I know low strength oral b12 treatment is recommended for dietary B12 deficiency in UK. Are they high strength tablets?

    Does his GP think his B12 deficiency is due to diet? If he eats plenty of meat, fish, dairy, eggs, shellfish it's possible that he has an absorption problem.

    With PA in the family, I hope GP has ordered an IFA Intrinsic Factor Antibody test....

    Does his GP know family history?

    Licensing of UK Medicines

    I don't know much about licensing of UK medicines.

    Are oral B12 tablets licensed as a treatment for PA/Non-dietary B12 deficiency? As far as I know they are not at moment but I'm not a medic so I could be wrong.

    Think Martyn Hooper, chair of PAS might be interested in hearing about high strength B12 tablets being prescribed.

    "He now tells me he has had pins and needles in both feet and has been feeling exhausted"

    With neurological symptoms and a B12 level of 217, I am surprised he is not being treated according to BNF/BSH Cobalamin and Folate Guidelines eg injection every 2 days for as long as symptoms continue to get better.

    As far as I know, the above neurological regime is for any patient with B12 deficiency who has neuro symptoms even those where diet is the cause.

    It was acknowledged in BMJ b12 article summary,

    bmj.com/content/349/bmj.g5226

    that it's vital to treat symptomatic patients even if there is no obvious b12 deficiency in their blood results in order to avoid neurological damage.

    There is an article on PAS website about SACD sub acute combined degeneration of the spinal cord that may be of interest to you. it's only available to PAS members.

    pernicious-anaemia-society....

    I guess as a retired doctor you may have seen the "UK NEQAS B12 Alert" which emphasises that neuro damage may occur with serum B12 within normal range. UK NEQAS B12 Alert is mentioned in Point 5 of link about writing letters.

    Link about writing letters to GP

    Point 1 is about undertreatment of b12 deficiency with neuro symptoms.

    b12deficiency.info/b12-writ...

    PAS (Pernicious Anaemia Society)

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone available

    There are probably stories on Martyn Hooper's blog that are relevant to you and your son.

    martynhooper.com/

    Blog post about oral B12 treatment.

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

    I have commented on your other post about your son's result but I didn't realise it was about a relative ....thought it was a hypothetical situation.

  • Can I suggest that you also look at point 4 here b12deficiency.info/what-to-... for both yourself and your son?

  • Does anyone here have their copper levels tested? (which presents all same symptoms)

  • Well done! my doctors have treated me hideously, to the extent that i have now contacted a medical negligence lawyer, the final straw was me having to diagnose my own folate deficiency. I have fought my case and got what i needed but it has been at the expense of having any relationship whatsoever with my doctors (they dont like being shown up as wrong on many many occasions as they couldnt be bothered!). It is a great shame that they still treated me this way after being a patient there for 24 years........i know now never to trust a doctor ever again!

  • Joanne, I'm so sorry you've had such an awful experience. I am ashamed of my profession when I hear stories like yours. How did you get on with the lawyer? It's only a matter of time before someone takes the doctor to court. Only then I fear will medical attitudes change.

    Don't lose faith in all doctors. My niece has received very sympathetic treatment from her doctor and my oldest brother was impressed by his doctor's attitude. It remains to be seen whether their treatment is equally efficient but I am optimistic for both of them.

    I sent a letter to the Times this week about litigation and cyberchondriacs costing the NHS and the country a fortune. They didn't publish it so I may post it on this forum for interest.

    Stay strong. You will get better once the treatment is established.

  • Thank you i am waiting to hear from the lawyer at the moment. There is the main misdiagnosis but also plenty of other issues. As an example they have only managed to get 2 of the last 20 prescriptions right so i have had to contact them. Then of course obviously i am difficult and attending too often as that is counted as a phone appointment......... they have also prevented me from getting treatment by writing ridiculous and totally inaccurate letters to consultants so i have had to sort that out too. Two consultants i have had to change as a result but the others now write to me directly and do not involve the gp at all as they cannot believe theur negligence!! I give my gp the minimum info so i can get prescriptions but they havent even noticed they are no longer being kept in the loop over 4 major things!!!!!

  • Sounds like you have it in hand. It's such a shame you have to fight when you're not well.

  • Thank you i agree, i wish there were more doctors like you!

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