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B12 Deficiency Can Kill


Mistymaud
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It is now known that b12 deficiency could affect 1/3rd of the population. It has been known for nearly 200 years that this illness ultimately causes death, but prior causes psychiatric problems, paralysis, dementia, vision issues and a plethora of other neurological problems. Hardly surprising since b12 is necessary for the production of myelin which protects nerves and brains.

Unfortunately, in modern society, most medical professions treat b12 deficiency as something trival - the knowledge of it is lost.

 

In Scotland there are no medical guidelines for treating this illness - indeed, even if you present with typical symptoms it's rare you will be tested for it. Even if you are, and you are deficient, on many occasions patients are only given treatment suitable for vegans.

This treatment will raise b12 levels in the blood and the doctor will pronounce you treated - but it only raises levels in the blood, it does nothing to stop or repair the damage at cellular level.

 

If you know someone who has emotional issues, for example seems very anxious, or someone who has dementia, or someone who has MS, or someone who has a child with autism - then these could in fact be b12 deficiency. Yet it is highly unlikely the patients have even heard mention of it. Their doctors will not even give it serious consideration.

 

I'm including a link to a documentary video quite recently released on Youtube and I hope I'm not contravening any rules. This video gives 4 examples of patients who were close to death before the cause was revealed to be b12 deficiency. It includes a doctor - complete in his diaper with his feeding tube - he's a brave man to come out and say he was ignorant of the cause too.

 

Try and forget everything you thought you knew about b12 and remember that in Scotland there are no guidelines for treating this illness. It's not considered important enough.

 

 

 

 

 

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Hi,

 

A very interesting post.

 

Could this be a possible answer as to why there is a high incidence of MS on Shetland  through misdiagnosis?

 

or could be a B12 deficiency t rather than or Vitamin D ?

 

It would appear from the link that B12 deficiency is becoming very overlooked and on a rapid increase, it would be interesting to see serum results of B12 in various groups  of people and just see what numbers of people are actually truly with very low in B12, especially as it can be masked .

 

Interesting as to what the medical profession here and Scotland make of the link.

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By 'eck - you're quick on the uptake, aren't you!!!!

 

I'm impressed!!!!!

 

My main concern regarding MS is a common-sense one.

We have 100s of MS specialists - we have NO B12 specialist. None. In the UK.

How can someone be a specialist in one disease that produces exactly the same symptoms as another disease, without knowing anything about the 2nd disease. You cannot diagnose one until you rule out the other. Yes, there must be many, many cases of misdiagnosed MS.

 

Personally I believe there are also links between Vit d def and b12. This is down to personal research and nothing else, so I'm not really going there. What I will say is, if you are low on vit d, have your b12 checked as well.

 

The problem with testing is that if you supplement even minute amounts, the serum b12 will return to normal. And by supplement, that can mean eating a small piece of liver each day.

 

Two things that I've learned from the historical research:

1) Blood test results are not a diagnosis of b12 deficiency, they are purely one of the symptoms and the easiest to rectify.

2) Once treatment commences (by supplementation or whatever) all bloods return to normal.

This does not mean the patient is 'cured' it means one of the symptoms has been resolved. You can still be dying.

 

 

Your medical professionals do know - at least at higher levels and your government knows.

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I've put this link up on another forum and thought it would also be useful to the people on here.

 

It's an interactive symptom checker designed by a Dr in the UK who has fought for many years to highlight the problems of b12 deficiency.

 

If there are people out there with any issues that could be considered neurological or to do with malabsorption, then it might be worthwhile having a look at it. And by neurological I don't specifically mean 'mental health problems.' It's anything to do with memory loss, mood change, fatigue, physical deterioration - and a multitude of other problems that might seem like very little until you put them all together.

 

http://b12d.net/content/B12-signs-symptoms-assessment-form

Edited by Mistymaud
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So I ran through the assessment and found enough things to make me ask my doctor about B12 deficiency on my next visit.  Some of the symptoms are currently being blamed on side effects from prescribed medications for diabetes and, to be honest, the alleged side effects are reducing my quality of life although not enough to make me stop taking them.

 

I note that my current multi vitamin pill does contain 100% of my rda of B12........but I have only taken that one for a couple of months.  And I can trace some of my symptoms back to the time I started taking diabetes medication but that might also be about the time I changed my diet and stopped eating some natural sources of B12.

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Apologies computer froze.

 

There seems or appears to be difficulties in getting a correct accurate diagnosis via bloodwork and with some medicines and supplement masking the condition complicates matters further .

It would be good if every GP saw the link even it only raised the awareness provided /provoked further discussion/research and something to consider when patient presents themselves with range of symptoms that could suggest B12  deficiency.

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JustMe. If you watch the film again, and I don't know what medications you are on, but some can make a b12 deficiency worse.

Metformin for one. Antacids are another.

When it comes to the RDA, again, as the film shows, the RDAs are completely ineffective for someone who is suffering a malabsorption problem.

 

Silvercloud. You are absolutely correct. What doctors are trained to look for is anaemia - and you don't need to have the anaemia symptom to be ill.

The sad thing is that this fact is not news it's ancient history. J Risien Russell reported this back in 1900 in a study he did on patients (all of whom died because there was no treatment at that time.)

In fact, the photo that you see in the film at the start, the one of the fat arm and then the thin arm, was taken from his study.

This is what he said when it came to diagnosing the illness "A diagnosis of pernicious anaemia arrived at from the character of the blood elements alone is quite unjustifiable."

He actually objected to calling it pernicious anaemia because he knew the anaemia didn't have to be present but the name remained so as not to confuse it with other forms of anaemia.

Modern doctors however, have been taught the anaemia has to present for a patient to be ill and to get a confirmed diagnosis.

 

Most doctors are completely unaware of what b12 deficiency does. Most doctors, once serum b12 levels are back into the normal range, will consider a patient treated. Any remaining symptoms will be put down to another illness (and a barrowload of tests to find out what it is - but they don't because it's the b12) or they will be treated as emotional hysterics and sent off packing with platitudes.

 

It has to be the hardest thing to come to terms with - sitting in front of 21st century doctors and knowing they haven't got a clue what they are talking about.

It's both sad and frightening.

 

There is no definitive test because no serious work has been done on it. They list the tests in the film but all of them can revert to normal once supplementation takes place. They are all blood tests.

 

The only way round it, is to treat aggressively and see if symptoms diminish. In many cases, depending on how severe the deficiency is and how long it's gone on for, some symptoms remain.

 

It is even questionable as to how effective an MRI is after several months treatment. It appears that even in patients that before treatment had MRI indicating damage, after treatment, the damage doesn't show on the MRI. Yet some of the patients that entered the study were crippled both before and after treatment (even though some improvements had taken place)

 

There are so many unanswered and unanswerable questions - so we have to go back to basics - back to what Murphy and Minot did. Treat it aggressively and see how far a patient improves.

Edited by Mistymaud
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I thought I'd put another link up for you because this one actually shows patients in the 1920s and gives some idea of how physical symptoms can progress.

 

This film is genuine, it's a silent movie so don't expect special effects! It is believed to be the film that was shown to the audience when Murphy and Minot won the Nobel prize for discovering the treatment.

 

It also shows patients eating raw liver - those of with a nervous stomach are forewarned. It doesn't show how mental function is impaired or degenerates. I believe the male patient in the film took many months to walk again, but he did and he eventually returned to some kind of employment - but it can take a long time.

 

... And to those that have given me a 'thank you' - thank you.

 

http://bloodjournal.hematologylibrary.org/content/107/12/4970.1/suppl/DC1

Edited by Mistymaud
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  • 3 weeks later...

I'm posting this in this thread because I don't want the b12 thing to overrun into the hospital thread (for those in the know)

But treatment for b12 deficiency, according to BNF guidelines (which Scotland should follow because they have no guidelines of their own) is that if neurological involvement is suspected (this means numbness, tingling, balance issues etc) then treatment should be loading doses followed by injections every other day until no further improvement in these symptoms.

 

We don't need research to establish this course of treatment because it is already laid down - it's just not followed.

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...and if we look at evidence and research in light of what I've already said, perhaps this may be of interest.

 

One of your MSPs - I think his name is Wilson (and before Admin have a fit that I'm breaching any kind of confidentiality, there is a transcript and film of the situation on one of the Parliamentary sites) has a wife who was diagnosed some time ago with MS. Then, some time later, she had a b12 test and was found to be deficient. She was then offered the standard of 1 jab every 3 months.

Now, if you take into consideration that both illnesses have the same symptoms and one can be tested for (although often inaccurately) yet this patient was diagnosed with one without being tested or treated for the other until some time later - and the recommendation is for jabs every other day until no further improvement - yet she was only offered the standard 3 monthly jab - we might be wondering what the MSP thought when he discovered the problems with diagnosing and treating b12 deficiency?

We might also wonder what treatment his wife is on now?

 

Anybody can watch the film of this, and I think the MSP concerned looks pretty sick about it all.

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How much of funding goes towards B12 research?

 

Do you know if deaths reported have the B12 factored in the death certificate?

 

How much is spent in prevention?

 

What has been the response from health professionals when asked about this?

 

Is it included in Local Health Plans?

 

As I have said in the other thread, I would like to know more about this, but from someone who has asked questions of those who could know. This, on the outset, could be a serious problem, a problem folk would and should take seriously. That is, get on with banging on the door of those who could answer.

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I'm not aware of any funding toward b12 research directly. Certainly not in Scotland.

 

Deaths do not have b12 factored in, however pernicious anaemia can still be reported as a cause of death and in Scotland there was one case a few years ago.

 

Nothing, as far as I am aware is spent on prevention.

 

Michael Matheson put the issue of lack of b12 guidelines to SIGN last year. Their response was that they have no plans in the immediate future to put guidelines in place. Not a direct quote but again it is on the net. Mr Matheson said it was not government's place to instruct medical professionals what to do. Again not a direct quote.

 

Local Health Plans - haven't got a clue.

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If B12 deficiency is a contributary factor and is noted as that, research funding and other streams of funding will be targeted to the issue. To start we may need to ask the various NHS Boards on their take of the B12 deficincy, get an accurate and broad picture.

 

The quickest way to address the problem is making folk aware, this can be done in a number of ways, the best being local newspapers. Once you have quotes from the NHS Boards, you can then look at asking GPs, they all should respond under FOI. The local councils as well as the Scottish Parliament.

 

You can kill two birds with one stone by using www.whatdotheyknow.com it is a service I use and if you phrase your questions right, that is, no closed questions, unless required and breaking up a request so it does not pass the cost threshold where they can refuse to answer.

 

Things are a little different here in England, the PCTs are now CCGs and have been fragmented. This makes it harder for folk to find things out and opens the door to privatisation, which is happening now.

 

You need secondary actions as well, say, while the GOV is ignoring the problem of B12 deficiency, it has closed over 1000 mental health beds. I did note that in the US, the GOV there has not invested in research, but what I did notice was that various organisations were highlighting the problem. There could be a senario where if the British Governments are serious about savng money, then preventing the B12 deficiency would go some way to do that.

 

The Shetland NHS Board has a funding shortage, this could be a serious issue as it could retard any campaign if it is not vocal enough. If you use the numbers of deaths that could be related to the deficiency as your starter and ask how much it costs say to investigate an unexpected death, you then could ask questions about that, especially to MPs/MSPs and councillors. It would be a good test.

 

Local health profiles can give you much of the information you need...the rest will be leg work.

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