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Misdiagnosed vitamin B12 deficiency a challenge to be confronted by use of modern screening markers

Misdiagnosed vitamin B12 deficiency a challenge to be confronted by use of modern screening markers | B12 Blog | Scoop.it
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Why does your Doctor believe you are making a fuss about nothing, Mrs B12d?

1 Access to the best known indicators of B12 Deficiency, MMA & Hcy tests, severely restricted by NHS

2 Studies on the cost of nurses' time spent giving B12 injections, heralded a cut back In 1987.

3 District nurses are "suppliers" to GP practice, not in house,

4 NHS swapped to three monthly injections without gold standard trial or noteworthy follow up and without giving GPs knowledge of full spectrum of B12 Deficiency symptoms. How could they judge if new protocol was a success? 

5 Erroneous belief that B12 Deficiency is mainly a condition of the elderly

6 Virtually no training in nutrition at Med School

7 Lack of awareness that 'functional' B12 Deficiency is a serious condition requiring swift correction and lifelong treatment despite corrected serum.

8 Lack of awareness that psych/neuro symptoms can appear long before B12d shows in serum

9 Collective mindset passed Dr to Dr has linked B12 Deficiency with Hypochondria 

10 Doctors erroneously believe Vit B12 is addictive. (Research later in 2013 will disprove) 

11 A reluctance by some GPs to address their knowledge issues about B12d

12 Time constraints on GP appointments - one symptom only please

13 Target orientated practice leaves little time to listen to the patient.

14 Not enough Haemos & Neuros for GPs to refer to. Even specialist knowledge is not replete.

15 Reluctance by some GPs to consider patient opinion might be of value

16 Badly worded B12 Deficiency guidelines

17 Misleading name Pernicious Anaemia - anaemia comes later

18 B12 Reference Range set too low to pick up B12d before nerve damage often becomes irreversible.

19 Drs do not know that Ref Range was designed to pick up anaemia only.

20 GPs not clear on dosage; oral or IM; type of cobalamin. 

21 GP B12d resources are conflicting and too numerous

22 B12d unfairly received a bad name by spurious prescribing in fee orientated countries.

23 Widespread prescription of common drugs that dangerously deplete Vitamin B12 without Drs understanding the true consequences. Bad Pharma

24 Rigidity in prescribing three monthly B12 injections for all 

25 Some Drs don't realise B12 Deficiency must also be tested & treated at the same time folate deficiency is addressed, meaning B12d can be masked by folate prescription

26 Lack of knowledge that high dose B12 needs really healthy cofactor levels in order for B12 to work.

27 Lack of knowledge that iron anaemia lowers MCV masking B12 Deficiency

28 New names have been given to B12 Deficiency which remains undiagnosed as old knowledge is forgotten

29 Direct links between Pharma & every stage of a doctors career meant drugs easily manoeuvred into sticking plaster role for B12 Deficiency symptoms allowing underlying nerve and neuro damage to progress unidentified.

30 Really poor coverage of B12 Deficiency by greedy journals in comparison with other serious disease.

32 Appalling story of B12 Deficiency marketed in BMJ flyer, aimed at new Drs on first day on the wards.

33 Doctors believe we waste their time, that we lie and that other patients are more deserving.

34 Doctors are not accountants, they see a lifetime of costly B12 injections. They do not see a lifetime of NHS bankrupting tests, treatments and institutionalised care as a result of under-diagnosis or inadequate treatment.

35 Your Dr isn't thinking "B12 could be causing CFS / Fibro / MS / RA ect, ect because the B12 tests used by researchers to discount B12d are known to be crap"

36 Your Dr isn't thinking "My patient might not be responding well enough to three-monthly injections because a non-doc statistician based efficacy on haematological correction, paying no attention to what is going on at cellular level or remediation of patients symptoms.

When you consider the cobblers Doctors have been fed, is it really so surprising that our Doctors cannot hear.

 

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What Twitter has taught me.

Tweeps, I have purposefully only ever reminded #Twitterverse of two comments #Doctors have made about#B12Deficiency in the past. The first from @teamhaem who assured us the new guidelines will be issued soon (they weren't) and the second from a really excellent GP Training team that said they were aware of all B12d's issues. Regrettably it seems they didn't realise at the time just how big our issues are. I am ashamed I reminded them of that tweet - they are good conscientious Drs that are passionate about trying to help GPs keep up to date. It wasn't their fault the B12d Guidelines are late.

My research and conversations with many Doctors over the past eighteen months taught me much. I stand to be corrected, so please don't be afraid to speak up rather than block me. Like you, I am searching for the least painless way out of this mire for all of us, Dr and patient alike.

This is what I have learned: 

1 Most Drs are totally unaware of the breadth of harmful consequences they bestow on an unidentified or inadequately treated B12d patient. This, I believe, is why some have ignored low B12 results in the past and continue to do so.

The consequences of this oversight are recorded in the many Patient histories here:
http://www.pernicious-anaemia-society.org/phpbb/viewforum.php?f=1

2 Most patients, like I was, are unaware that Science has no truly effective way of communicating with General Practice, especially as most Drs shun social media. Thus the pace and potential for change in practice remains in the dark-ages and General Practice sadly looks set to become extinct. 

3 Most Drs are unaware that there is an extraordinarily vast repository of small scale B12d evidence that bears witness to the large scale database of patient experiences on the PA Society Forum and many other websites.

4 Most Drs have no idea that life-destroying psych /neuro symptoms of an undiagnosed B12d can present long before signs show in serum. 

5 Most Drs don't realise that severe B12d is highly prevalent in the younger generations as well as the old, both in genetic and acquired form.

6. Drs have been encouraged to believe that B12d corrected at serum level is also corrected at tissue level. PAS members & the literature have shown this isn't always the case.

7 Drs have been misled by a non-medical statistician's calculations that three monthly injections are sufficient for all forms of B12 Deficiency. B12d patient forums across the world have shown this is not so. 

8 NHS Drs are currently being misled that science has proved all types of "oral" B12 correct at tissue level and that oral B12 relieves all symptoms of all forms of B12 Deficiency. Researchers have only looked at correction at serum level, not tissue and in very small trials for a short time-frame. 

Consider: http://fallcongress.spuonline.org/abstracts/2013/P26.cgi

My conversations with GPs show me that pressure of workload and the overwhelming pace of science mean GPs have had to rely on journals, Pharma and other GPs for their continuous professional development.#NHS fail

The medical journals GPs favour are not interested in pro-B12d content because they know their readership is disparaging of Vitamin supplements. More significantly they know their own interests would not be best served by any disclosure about 'forgotten' B12d. 

Legitimate medical educators with poor B12d knowledge beget B12d ignorant Drs. Pharma, well, there is little point in explaining why pharmaceutical manufacturers are not interested in a treatment that will negatively affect their market share.

The time constraints and tick box culture that the NHS enforces on General Practice means Drs feel they have no time to consider patients' own Internet research; especially information proffered by patients with Multiple Unexplained Symptoms. Peer pressure and poor education teaches GPs that B12d patients, filed swiftly under the category of MUS, are deserving of discrimination. 

We have a #Parliament that realises the economy and by association its votes will take a hit if issues surrounding widespread B12d are medically corrected and publicly exposed. We have MPs, Media, Civil Servants, NHS Personnel and even some GPs whose share holdings in private health will tumble if the B12d chronically sick recover from their degenerative conditions and rejoin society. 

Our universities R&D grants depend heavily on the favour of people and companies that would not wish to see B12d exposed. Universities themselves spend their funds in search of lucrative health initiatives that bring self-sustaining profit. Our laboratories resist change of B12d tests and reference ranges, presumably because the undiagnosed or poorly treated B12d community makes sure there are enough jobs to go round. 

Hugely influential Drs, psychiatrists, scientists and pharmacists that have insisted B12d and MUS conditions are imaginary make no effort to update their statements even though they now realise they were wrong. We have B12d ignorant haematologists that gate-keep on the boards of research charities and we have charities that chase lucrative pharmaceuticals treatments rather than cures in an effort to ensure survival of their brand.

Do we have an unresolvable problem, twitter friends? 

From where I sit, the only people that can decide are our conscientious and public-serving GPs and they are the very people who are too tired, disillusioned, disinterested and over-worked to tackle this "difficult" problem. It is ironic that B12d is burying General Practice and draining its resources to point of collapse. It is tragic that these same GPs are amongst those who would benefit most by recognition and eradication our modern day plague. 

GPs fear for their livelihood, tweeps. We live in a vindictive world that demands an eye for an eye. Like a vast shoal of fish, our frightened GPs swim tightly together, practicing alike, afraid to swim alone to hold back the tide.

So tweeps, with Drs telling me that fear of litigation means they are slow to understand or change practice over B12d, what can we do? Even if every single one of us agreed not to look back, how could we speak for the millions who have yet to find out? Some people have lost their families, homes, livelihood and sanity. Who am I to say the destitute are not deserving of redress even though the vast majority of Drs were clearly not at fault on the basis that they did not know?

At the moment its seems the world is destined to live forever beneath the cloud of undiagnosed B12 Deficiency. Who will lead us out of its shadows? Who will realise that shaking their fist in justifiable anger means the curse will live on, and on, and on. Who will take up the mantle of dear Dr Lewis and Dr Chandy and show GPs and us there is a better way? 

RIP Dr David Lewis. I miss your reassurance that medicine will catch up. I falter as I feel the complacency of men and women who feel their battle is lost before it is begun. 

Swim to the Twitter light Doctors. Swim as if your good conscience and self respect depends on it. Take our hands. Let's rebuild our confidence in the good intent of our human spirit.

#NHS #hcsm #doctors #meded #wenurses #mededuk #studentnurse #health #healthinfo

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Yes, Nurse Kim. :) It is about understanding why you have so many patients. x

Yes, Kim. It is about understanding why you have so many patients. x

NHS Senior people know about this. Ask Sir Muir Gray. NHS working on it right now. Things are about to get better and swiftly if Drs are enabled to put aside their fear.

Put simply a Pharma-led education has hidden B12 Deficiency from Doctors. Maybe not purposefully, but dumbing-down B12d for decades has been disastrous.

Undiagnosed or poorly treated B12d plus a persons genes dictates the condition that puts chronic sick Px in hospital. B12d has dozens of presentations. Your wards are full of us.

Quick reasons: Common B12 depleting meds, Very poor assays. Drs look for anaemia only. #fail. Lifestyle wastes B12. Drs wrongly told only affects elderly #fail. Drs loathe Vitamins. Drs not been able to keep up with science because there is too much!

You just have to "look" at the evidence. Dr Lewis & Dr Chandy did the hard work, read on and look at these later.
http://maturinuk.com/2013/03/02/vitamin-b12-deficiency-time-for-a-rethink/
http://b12d.org/sites/default/files/PDF/B12-A_Retrospective_Study.pdf

My blog explains the very many important and painful reasons why B12d has been forgotten.

8,000 people at the Pernicious Anaemia Society including many health NHS professionals can't be wrong.

Our wonderful nurses, especially, need to understand why this monumental cock-up has occurred in order to help put it right.

Remember, first understand the problem. Second discard what you know and let yourself see the solution unfold.

I am out here to make sure NHS peeps understand properly just in case management peeps think stuff can be dealt with in half measure. Need to get remediation measures right first time - our lives and health of the NHS itself is at stake.

This is one time when the 80/20 rule doesn't stack up. That 20% will bring down the NHS and millions of lives with it.

Love our NHS with a passion. Thank you for all that you do in circumstances that have been driving you to despair, my darling. It is about to get better.

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The solution is waving at you, NHS!

The Solution is waving at you NHS!

Patient demand is increasing exponentially. The solution is not resource (passive). The solution is understanding demand & why it has exploded.

Non-communicable disease is out of control. The answer cannot be, "Just because it is".

First identify the problem (you think resource). Second, chuck it to the full-back & look again; this time to the front, not at one another.

Put aside what is known (it is clearly not getting you anywhere) and enable yourself to see what isn't.

NHS has asked Twitter and Twitter has provided the answer. #NHS Doctors, David Lewis and Joseph Chandy, stood enthusiastically and #passionately at Step 2 and waved. Dear old, demoralised NHS even waved back. But could they recognise their clever, divergent thinking colleagues from a distance. No they could not!

NHS wards are drowning in patients whose health has been compromised by nutritional deficiencies - not least brought about by exposure to vitamin depleting common drugs and useless assays that miss thousands.

There are a ton of other evidenced reasons why the NHS is buckling under the strain. I list them below:  

 

 

 

B12 unme's insight:

Why does your Doctor believe you are making a fuss about nothing, Mrs B12d?


1 Access to the best known indicators of B12 Deficiency, MMA & Hcy tests, severely restricted by NHS

2 Studies on the cost of nurses' time spent giving B12 injections, heralded a cut back.

3 District nurses are "suppliers" to GP practice, not in house,

4 NHS swapped to three monthly injections without gold standard trial or noteworthy follow up and without giving GPs knowledge of full spectrum of B12 Deficiency symptoms. How could they judge if new protocol was a success? 

5 Erroneous belief that B12 Deficiency is mainly a condition of the elderly

6 Virtually no training in nutrition at Med School

7 Lack of awareness that 'functional' B12 Deficiency is a serious condition requiring swift correction and lifelong treatment despite corrected serum.

8 Lack of awareness that psych/neuro symptoms can appear long before B12d shows in serum

9 Collective mindset passed Dr to Dr has linked B12 Deficiency with Hypochondria 

10 Doctors erroneously believe Vit B12 is addictive. (Research later in 2013 will disprove) 

11 A reluctance by some GPs to address their knowledge issues about B12d

12 Time constraints on GP appointments - one symptom only please

13 Target orientated practice leaves little time to listen to the patient.

14 Not enough Haemos & Neuros for GPs to refer to. Even specialist knowledge is not replete.

15 Reluctance by some GPs to consider patient opinion might be of value

16 Badly worded B12 Deficiency guidelines

17 Misleading name Pernicious Anaemia - anaemia comes later

18 B12 Reference Range set too low to pick up B12d before nerve damage often becomes irreversible.

19 Drs do not know that Ref Range was designed to pick up anaemia only.

20 GPs not clear on dosage; oral or IM; type of cobalamin. 

21 GP B12d resources are conflicting and too numerous

22 B12d unfairly received a bad name by spurious prescribing in fee orientated countries.

23 Widespread prescription of common drugs that dangerously deplete Vitamin B12 without Drs understanding the true consequences. Bad Pharma

24 Rigidity in prescribing three monthly B12 injections for all 

25 Some Drs don't realise B12 Deficiency must also be tested & treated at the same time folate deficiency is addressed, meaning B12d can be masked by folate prescription

26 Lack of knowledge that high dose B12 needs really healthy cofactor levels in order for B12 to work.

27 Lack of knowledge that iron anaemia lowers MCV masking B12 Deficiency

28 New names have been given to B12 Deficiency which remains undiagnosed as old knowledge is forgotten

29 Direct links between Pharma & every stage of a doctors career meant drugs easily manoeuvred into sticking plaster role for B12 Deficiency symptoms allowing underlying nerve and neuro damage to progress unidentified.

30 Really poor coverage of B12 Deficiency by greedy journals in comparison with other serious disease.

32 Appalling story of B12 Deficiency marketed in BMJ flyer, aimed at new Drs on first day on the wards.

33 Doctors believe we waste their time, that we lie and that other patients are more deserving.

34 Doctors are not accountants, they see a lifetime of costly B12 injections. They do not see a lifetime of NHS bankrupting tests, treatments and institutionalised care as a result of under-diagnosis or inadequate treatment.

35 Your Dr isn't thinking "B12 could be causing CFS / Fibro / MS / RA ect, ect because the B12 tests used by researchers to discount B12d are known to be crap"

36 Your Dr isn't thinking "My patient might not be responding well enough to three-monthly injections because a non-doc statistician based efficacy on haematological correction, paying no attention to what is going on at cellular level or remediation of patients symptoms.

When you consider the bullshit Doctors have been fed, is it really so surprising that our Doctors cannot hear.

 

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