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B12 Deficiency : A Silent Epidemic with Serious Consequences

Polaris

Registered User
Feb 5, 2015
17
Hello everyone

I've just joined this forum and am on a mission to tell our family's story in the hope that it will make others aware of how dementia can be misdiagnosed. It's difficult to know where to start, as our struggle lasted months so this is the short version!

My relative's memory had been poor for a year or so but, after a serious crisis, her GP ruled out Altzeimer's and settled on a diagnosis of ME and dementia. No case history had been taken even though we'd pointed out that there had been a huge decline following dental injections, (nitrous oxide in anaesthetic and dental injections seriously depletes B12 as do many other medications). I began to research PA and B12 deficiency extensively but was unable to convince the surgery to consider B12 deficiency even though relative showed many symptomatic neurological problems, which are irreversible if not treated urgently.

After weeks of frustration, I emailed the guidelines below, care of the practice manager. Eventually, and only after I'd pointed out the social consequences on the whole family, did they agree to trial injections.

Huge improvements followed, which enabled my relative to function normally again and to ask for more frequent injections herself, which they eventually agreed. Memory is still poor and may not ever be fully reversed but we are still hoping that it will come back with time and sufficient vitamin B12 injections.

I realise this may not work for everyone but there will still be many people who are being misdiagnosed and therefore not treated.


Recommendation in BCSH, UKNEQAS and NICE guidelines:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

Re. tests, here is an extract on test results from the book, "Could it be B12?" :

"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml.
 
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Owly

Registered User
Jun 6, 2011
538
Hi Polaris, welcome to the forum and thank you for sharing your very important story. Quite often on this forum, the question is asked whether anaesthetics can harm your memory, but the link to B12 is not often made.

A while ago, I made a post that I think is worth repeating as it may not have been noticed much.

"It does appear to be the case that general anaesthetic can cause lasting memory problems in some patients, as it did to my Mum on her 2 hip operations (she was 83 & 84).

The NHS says that anaesthetics can cause confusion and memory loss, which are usually temporary. That means sometimes they are permanent.

http://www.nhs.uk/conditions/Anaesth...efinition.aspx

Recently I came across the idea that nitrous oxide that is used in some anaesthetics depletes vitamin B12 in the body, and if you look up B12, you will find it is critical to good brain health.

I found this page that says that if you are already depleted in B12, then you may come off worse from an anaesthetic -

https://en.wikipedia.org/wiki/Nitrous_oxide

"Nitrous oxide inactivates the cobalamin form of vitamin B12 by oxidation. Symptoms of vitamin B12 deficiency, including sensory neuropathy, myelopathy, and encephalopathy, can occur within days or weeks of exposure to nitrous oxide anaesthesia in people with subclinical vitamin B12 deficiency. Symptoms are treated with high doses of vitamin B12, but recovery can be slow and incomplete. People with normal vitamin B12 levels have stores to make the effects of nitrous oxide insignificant, unless exposure is repeated and prolonged (nitrous oxide abuse). Vitamin B12 levels should be checked in people with risk factors for vitamin B12 deficiency prior to using nitrous oxide anaesthesia."

Many old people are deficient in B12 because the stomach becomes less able to digest it. Vegetarians are at risk as B12 is in animal produce, and vegans are even more so as they don't even have cheese and eggs. There is a warning about B12 deficiency and memory loss on the Vegan Society website.

This information might have helped my Mum who was a vegetarian.
 

chris53

Registered User
Nov 9, 2009
2,929
London
Hello Polaris,a warm welcome to Talking Point, and many thanks for this informative post:) such a simple blood test for B12 levels is so much overlooked, it is not intrusive as can be included in a regular blood test,but can make,in some people a vast improvement in memory function, my mum has Alzheimers-which sadly is a fact,however due to her GP doing everything possible to help, she was lacking in B12, a course of injections made a significant difference to her wellbeing...so easy to ask for but you do need a doctor who will listen and allow this simple test to be done, it cannot stop this progressive illness but can help so much.
Please keep posting.
Best wishes
Chris
 

Polaris

Registered User
Feb 5, 2015
17
Thank you Owly for the links. I'm so sorry about your Mum. My relative was also vegetarian, practically vegan, but now eats meat. I'm relieved to hear there is more information warning of the dangers of not supplementing with B12.

Many doctors and dentists aren't aware of the risks of n20 to B12 deficient patients and "their ignorance leads to injury, disability and poor outcomes in millions of vulnerable patients" - extract from the book, about to be released as a film, "Could it be B12?", by Sally Pacholok. She worked as an emergency nurse for many years and saw first hand how B12 deficiency was routinely misdiagnosed as Altzheimer's, dementia, MS, psychosis and other serious diseases.

Dr Chandy's site is excellent for assessing symptoms and protocol for treatment. He has over 30 years experience here after originally working in India where he noticed symptoms in vegans and vegetarians there. Shockingly, he was banned from giving B12 injections (even though he had given patients back their lives) shortly before it was announced that GPs would be receiving £55 for each new dementia patient ?!
 
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Not so Rosy

Registered User
Nov 30, 2013
578
Certainly all food for thought.

Dad used to have B12 injections when he was in his 50's but for some reason they stopped. Fast forward till he was 84 and a blood test identified he was B12 deficient. I wonder if things would have turned out different if he had been given the injections for all those intervening years.
 

Polaris

Registered User
Feb 5, 2015
17
Hello Polaris,a warm welcome to Talking Point, and many thanks for this informative post:) such a simple blood test for B12 levels is so much overlooked, it is not intrusive as can be included in a regular blood test,but can make,in some people a vast improvement in memory function, my mum has Alzheimers-which sadly is a fact,however due to her GP doing everything possible to help, she was lacking in B12, a course of injections made a significant difference to her wellbeing...so easy to ask for but you do need a doctor who will listen and allow this simple test to be done, it cannot stop this progressive illness but can help so much.
Please keep posting.
Best wishes
Chris
Thank you Chris and I'm so sorry to hear about your mum. You are so right about needing a doctor who is willing to listen. Unfortunately, there is a lot of controversy and ignorance surrounding the tests, which latest research now show to be seriously flawed and unreliable. The medical profession generally is also not aware of this and GPs are not adhering to the latest guidelines, which advise treating on symptoms and giving more frequent and continuing injections regardless of further testing. It seems from the PA forums that it is older people (for reasons Owly has mentioned above), who are most vulnerable but, increasingly, younger people with family history of PA are being fobbed off with catastrophic results.

Very best wishes
 
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Polaris

Registered User
Feb 5, 2015
17
Certainly all food for thought.

Dad used to have B12 injections when he was in his 50's but for some reason they stopped. Fast forward till he was 84 and a blood test identified he was B12 deficient. I wonder if things would have turned out different if he had been given the injections for all those intervening years.

That is so sad.... If he was diagnosed with PA, B12 injections are meant to be for life. For some reason, GPs are very reluctant to treat with injections, even though it is an inexpensive treatment compared with the multiple drugs they would rather prescribe !
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,314
66
Toronto, Canada
My B12 levels are low enough for me to take a tablet daily. My GP checked my levels when I went to him complaining of excessive fatigue and found them to be a bit low. A daily tablet is all I require at the age of 61. I think people should have their B12 levels checked routinely after a certain age.
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
My daughter's B12 deficiency was overlooked for years as was her linked anaemia. She has Crohn's disease in her small intestine which is where so many of the vitamins and minerals are absorbed so she has to have regular injections. Oddly enough, she had, or has,never had memory problems nor allied mental confusion but does get very tired and achey when her injection is late.

Such a simple blood test which has so much influence on a person's life.
 
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count2ten

Registered User
Dec 13, 2013
186
Hello everyone

I've just joined this forum and am on a mission to tell our family's story in the hope that it will make others aware of how dementia can be misdiagnosed. It's difficult to know where to start, as our struggle lasted months so this is the short version!

My relative's memory had been poor for a year or so but, after a serious crisis, her GP ruled out Altzeimer's and settled on a diagnosis of ME and dementia. No case history had been taken even though we'd pointed out that there had been a huge decline following dental injections, (nitrous oxide in anaesthetic and dental injections seriously depletes B12 as do many other medications). I began to research PA and B12 deficiency extensively but was unable to convince the surgery to consider B12 deficiency even though relative showed many symptomatic neurological problems, which are irreversible if not treated urgently.

After weeks of frustration, I emailed the guidelines below, care of the practice manager. Eventually, and only after I'd pointed out the social consequences on the whole family, did they agree to trial injections.

Huge improvements followed, which enabled my relative to function normally again and to ask for more frequent injections herself, which they eventually agreed. Memory is still poor and may not ever be fully reversed but we are still hoping that it will come back with time and sufficient vitamin B12 injections.

I realise this may not work for everyone but there will still be many people who are being misdiagnosed and therefore not treated.


Recommendation in BCSH, UKNEQAS and NICE guidelines:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

Re. tests, here is an extract on test results from the book, "Could it be B12?" :

"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml.
Thank you for bringing this subject up - I have long suspected that my mother's "dementia" could be caused by B12 deficiency - her GP has had her on iron tablets for 3 years ,but whenever I raised the question of B12 (she had been on warfarin for 10 years and consequently scared off green vegetables, red meat, nuts and oils - all the things needed for B12 ) I was treated with contempt and ignored. My mother deteriorated badly after her hip operation, became very confused, memory became extremely poor (she pulled out the canula in hospital - we never got the true story but it appears by the time the nurses found her she had lost a lot of blood and when we visited her on the ward expecting to take her home that day she was lying in bed, looking like a corpse, hooked up to an IV pumping blood into her - the doctors tried to tell us "this is normal after an operation" but one of the nursing staff explained what had happened, in a roundabout sort of way, but the blood under my mother's fingernails and all over her nightdress told a different story. However, 3 years on and she is now in a CH, and the new GP very reluctantly agreed to a B12 test, but refused to have this done in the home and I had to take her along to the local clinic for the blood test (she can hardly weight bear and was on antibiotics for an infection at the time - so much for compassion from our caring health professionals). The results were passed to the CH (even though I have LPA for health) and the GP was adamant there was nothing to see here - but conceded she was a bit anaemic. As we all know, this can easily mask a B12 deficiency. But how on earth do we get this test changed so that it shows a true reading? And how do we get past these arrogant know-it-all GP's who can't see beyond their text books?
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
I would try not to worry too much, count2ten.
A B12 deficiency would show up in a blood test, anaemic or not. It did with my daughter.
B12 is present in other foods. As a vegetarian, I eat no meat, am not a lover of green vegetables and was also on warfarin in the winter so they were totally out.
I eat very few nuts and only a minute amount of oil and my B12 levels are fine.
I can't see that it would benefit anyone to hide the result if the blood test showed a low level when the remedy is available.
 

Polaris

Registered User
Feb 5, 2015
17
Thank you for bringing this subject up - I have long suspected that my mother's "dementia" could be caused by B12 deficiency - her GP has had her on iron tablets for 3 years ,but whenever I raised the question of B12 (she had been on warfarin for 10 years and consequently scared off green vegetables, red meat, nuts and oils - all the things needed for B12 ) I was treated with contempt and ignored. My mother deteriorated badly after her hip operation, became very confused, memory became extremely poor (she pulled out the canula in hospital - we never got the true story but it appears by the time the nurses found her she had lost a lot of blood and when we visited her on the ward expecting to take her home that day she was lying in bed, looking like a corpse, hooked up to an IV pumping blood into her - the doctors tried to tell us "this is normal after an operation" but one of the nursing staff explained what had happened, in a roundabout sort of way, but the blood under my mother's fingernails and all over her nightdress told a different story. However, 3 years on and she is now in a CH, and the new GP very reluctantly agreed to a B12 test, but refused to have this done in the home and I had to take her along to the local clinic for the blood test (she can hardly weight bear and was on antibiotics for an infection at the time - so much for compassion from our caring health professionals). The results were passed to the CH (even though I have LPA for health) and the GP was adamant there was nothing to see here - but conceded she was a bit anaemic. As we all know, this can easily mask a B12 deficiency. But how on earth do we get this test changed so that it shows a true reading? And how do we get past these arrogant know-it-all GP's who can't see beyond their text books?
Your story is so sad, especially as you have done your very best for your mum. I know how frustrating it is to have to deal with doctors who refuse to listen, when such a simple test and treatment can make such a difference and cause no harm because you cannot overdose with B12. Whereas, B12 deficiency can impair the functioning of almost any part of your body". Deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml - for brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml. " - extracts from the book, "could it be B12".

My sister and I supplement with Jarrows methylcobalamin 5000 mcg, sub lingually available from Amazon - good reviews. I hope you are able to get the doctors to listen and cooperate, as there are BCSH, NICE and UKNEQAS guidelines and research that they should be adhering to. Very best wishes CounttoTen
 

Polaris

Registered User
Feb 5, 2015
17
My B12 levels are low enough for me to take a tablet daily. My GP checked my levels when I went to him complaining of excessive fatigue and found them to be a bit low. A daily tablet is all I require at the age of 61. I think people should have their B12 levels checked routinely after a certain age.
I agree absolutely Joanne and hope you feel much better now. The statistics are that "up to 15% of seniors and 40% of symptomatic people over sixty have low or borderline B12 levels".

" The symptoms of B12 deficiency can include confusion, memory loss, personality changes, paranoia, depression and other behaviours that look just like incurable dementia. Dementia stemming from B12 deficiency also mimics other dementias in its progress, which usually is gradual but relentless. Thus it's all too easy to mistakenly write off B12 deficiency dementia as incurable. "
 

Polaris

Registered User
Feb 5, 2015
17
Thank you for bringing this subject up - I have long suspected that my mother's "dementia" could be caused by B12 deficiency - her GP has had her on iron tablets for 3 years ,but whenever I raised the question of B12 (she had been on warfarin for 10 years and consequently scared off green vegetables, red meat, nuts and oils - all the things needed for B12 ) I was treated with contempt and ignored. My mother deteriorated badly after her hip operation, became very confused, memory became extremely poor (she pulled out the canula in hospital - we never got the true story but it appears by the time the nurses found her she had lost a lot of blood and when we visited her on the ward expecting to take her home that day she was lying in bed, looking like a corpse, hooked up to an IV pumping blood into her - the doctors tried to tell us "this is normal after an operation" but one of the nursing staff explained what had happened, in a roundabout sort of way, but the blood under my mother's fingernails and all over her nightdress told a different story. However, 3 years on and she is now in a CH, and the new GP very reluctantly agreed to a B12 test, but refused to have this done in the home and I had to take her along to the local clinic for the blood test (she can hardly weight bear and was on antibiotics for an infection at the time - so much for compassion from our caring health professionals). The results were passed to the CH (even though I have LPA for health) and the GP was adamant there was nothing to see here - but conceded she was a bit anaemic. As we all know, this can easily mask a B12 deficiency. But how on earth do we get this test changed so that it shows a true reading? And how do we get past these arrogant know-it-all GP's who can't see beyond their text books?
Re. " How do we get this test changed", this is the latest BMJ research document from which you will see from the summary that it is important to treat symptoms whatever the test result to avoid permanent neurological damage as there is no reliable test: It may be worth showing the summary to your doctor if they will not read the whole document:

http://cmim.org/pdf2014/funcion.php?f=articulos_201409VitaminB12deficiency.pdf
 

henfenywfach

Registered User
May 23, 2013
332
rct
Hello everyone

I've just joined this forum and am on a mission to tell our family's story in the hope that it will make others aware of how dementia can be misdiagnosed. It's difficult to know where to start, as our struggle lasted months so this is the short version!

My relative's memory had been poor for a year or so but, after a serious crisis, her GP ruled out Altzeimer's and settled on a diagnosis of ME and dementia. No case history had been taken even though we'd pointed out that there had been a huge decline following dental injections, (nitrous oxide in anaesthetic and dental injections seriously depletes B12 as do many other medications). I began to research PA and B12 deficiency extensively but was unable to convince the surgery to consider B12 deficiency even though relative showed many symptomatic neurological problems, which are irreversible if not treated urgently.

After weeks of frustration, I emailed the guidelines below, care of the practice manager. Eventually, and only after I'd pointed out the social consequences on the whole family, did they agree to trial injections.

Huge improvements followed, which enabled my relative to function normally again and to ask for more frequent injections herself, which they eventually agreed. Memory is still poor and may not ever be fully reversed but we are still hoping that it will come back with time and sufficient vitamin B12 injections.

I realise this may not work for everyone but there will still be many people who are being misdiagnosed and therefore not treated.


Recommendation in BCSH, UKNEQAS and NICE guidelines:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

Re. tests, here is an extract on test results from the book, "Could it be B12?" :

"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml.
Hi!

Its an interesting point you raise. Im sorry you had a terrible time getting people to listen.

Our gp did the sensible thing and checked for vitamin deficiencies first then any signs of infections.

Repeated them over a period of timw and then referred my dad to memory clinic. Our gps dont diagnose as it too specialised and important a correct diagnosis is made.

Then he went in holidays and the form was on his desk !..

In relation to his general care of dementia the gp is ok and still monitoring for vitamin deficiencies.

It was something i had already researched. I suppose the important thing is that both gps and carers and families are aware of this.

Best wishes

Sent from my GT-I9505 using Talking Point mobile app
 

Polaris

Registered User
Feb 5, 2015
17
Hi!

Its an interesting point you raise. Im sorry you had a terrible time getting people to listen.

Our gp did the sensible thing and checked for vitamin deficiencies first then any signs of infections.

Repeated them over a period of timw and then referred my dad to memory clinic. Our gps dont diagnose as it too specialised and important a correct diagnosis is made.

Then he went in holidays and the form was on his desk !..

In relation to his general care of dementia the gp is ok and still monitoring for vitamin deficiencies.

It was something i had already researched. I suppose the important thing is that both gps and carers and families are aware of this.

Best wishes

Sent from my GT-I9505 using Talking Point mobile app
That's so good that you researched and that your dad's GP's is monitoring regularly. I do hope all goes well for him. Very best wishes
 

count2ten

Registered User
Dec 13, 2013
186
Your story is so sad, especially as you have done your very best for your mum. I know how frustrating it is to have to deal with doctors who refuse to listen, when such a simple test and treatment can make such a difference and cause no harm because you cannot overdose with B12. Whereas, B12 deficiency can impair the functioning of almost any part of your body". Deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml - for brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml. " - extracts from the book, "could it be B12".

My sister and I supplement with Jarrows methylcobalamin 5000 mcg, sub lingually available from Amazon - good reviews. I hope you are able to get the doctors to listen and cooperate, as there are BCSH, NICE and UKNEQAS guidelines and research that they should be adhering to. Very best wishes CounttoTen
Maybe I should get some of these for the CH to give to my mother each day - I have LPA for health and welfare after all - but they would probably object and raise a safeguarding! But if she's been B12 deficient all these years it's probably too late to reverse any damage, and the iron and folic acid has probably masked it as well. Don't we have some useless doctors! Can't see beyond the symptoms and identify the cause . They could be saving the NHS millions by diagnosing people properly. Why is there so much resistance to addressing people's valid concerns?
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
My daughter has just been diagnosed with coeliac disease. She has been low in B12 for years, and resorted to taking her own supplements, but the doctors could find nothing wrong with her. A nursing friend suggested coeliac, she was tested finally, and yes, that's the cause.

This thread has made me much more aware of the importance of B12 for her health, so thank you :) xx