B12 Deficiency Can Kill

[paulb]

interesting video will get the wife to watch it

[Mistymaud]

I think what is happening is that we are in danger of trying to re-invent the wheel. We don't need to study that b12 deficiency is fatal. We know that. They knew that in 1847. Thomas Addision of 'Addison's Disease' - first identified it.

We then travel through time to Murphy and Minot who won a Nobel Prize for discovering a treatment. They were also awarded a prize in Scotland.

 

So, it's not a case of proving it makes you ill.

 

It's also not a case of proving what treatment is required. The BNF British National Formulary state what treatment should be required. They state it for minor symptoms and for dietry deficiencies (as for vegans) and for suspected neurological implications.

Yet patients aren't given according to the guidelines.

And the reason patients aren't given it according to guidelines is because GPs don't know what this illness does. And the reason they don't know, is that they are not taught.

I've seen one of the training videos from a medical college on b12 deficiency. It's a 15 minute cartoon. Mrs A (fat, middle-aged) walks into surgery, she tired, she has a sore tongue, doc tests RBCs, she's anaemic, she gets loading doses and an injection every three months.

And that's it. And it's wrong.

 

So, if that is the level of training that medical professionals get on b12 deficiency, is there any wonder that they snigger at patients who say they aren't improving on the 3 monthly jabs. That they think patients are exaggerating as they get worse.

Doctors do not know about this illness - and that is doctors at all levels.

 

So they don't really need to spend any extra - unless it's on improving the quality of the tests which in one form or another lack sensitivity or specificity - if it's suspected and they treat it correctly and the patient improves, then they save the health service a fortune trying to track down the cause of an illness that is under their noses.

 

What needs to be done, is not let the knowledge die. Because that is what is happening. They are chasing causes of MS and dementia etc, without even considering b12 and if they do consider it, they only treat blood serum levels - which is useless.

 

Doctors have to be highly aware of what this illness does, because then they will recognise it. Although there are many at the moment who should be hanging their heads in shame (and I've got a list of names as long as your arm) I find it hard to believe that the majority of doctors would let their patients suffer if they really knew what was happening.

This treatment is easy, cheap, non-toxic and highly effective depending on how severe and how long the patients symptoms have gone on for.

 

And I did get in touch with scotland last year and inform them about the Symposium in France where the top scientists were attending - and they weren't interested.

[Frances144]

Marmite on toast every morning.  Sorted!

[Mistymaud]

Oh, come on, you should have been here last week - I get to do my marmite lecture at least once a week.

Here we go:

 

Marmite invented back in the 20's as a stock substitute for vegetarians. It didn't have added b12 then because it hadn't even been isolated (Murphy and Minot discovered the treatment for Pernicious anaemia - as it was then known) but they didn't know WHY it worked)

 

Then when all the bvitamin thing hit the fan several decades later, Marmite had bcomplex added to it to ensure that vegetarians got their RDA because they knew it was essential for nerves and cells. Good idea.

 

The problem is that we are not talking about dietry deficiencies, we are talking about malabsorption. Essentially what goes in is not being taken up by nerves and cells. A small proportion of it will be, but that is tiny and by a process known as passive diffusion - it's actually about 1%.

 

It is also thought that the enterohepatic system or process does not function in people with malabsorption problems so you aren't getting the same storage/circulation of b12. It's a use it or lose it, situation.

 

Many yeast products (but not all) have b12 added. This is usually in the most ineffective form which is cyanocobalamin.

 

So although marmite by serving would give a good proportion of that RDA, it's only successful in people who don't have malabsorption problems.

 

And I also know that veggies usually get their serum levels checked regularly and they are normal - this is because they supplement. As I've said before, b12 levels after treatment commences (supplementation is treatment) means diddly.

If you think of serum levels as being a possible symptom rather than a diagnosis and know that this symptom is very easily rectified, you can see how the confusion arises.

 

Phew. Hope that's Marmite over for this week.

[Frances144]

I still love Marmite on toast!   

 

But I take onboard what you have written and appreciate the instruction.

[Silvercloud]

Hi,

 

I'm guessing like iron your Hb only tells you what is flowing around the body at that given time. It's your Ferritin levels that tells you exactly what iron reserves you have and if you were truly anaemic you want your Ferritin levels checked and MCV  (mean cell volume )

rather than  just  it which can vary even throughout the day.

 

So like B12 what flowing around your body from simple blood test if a patient is truly deficient and has been supplementing it can still mask results.

 

Most of us like to think we have pretty good diet I eat a lot of raw fruit and veg as well as meat as well as some cooked veg but I eat more raw vegtables as part of a balanced diet I would have no idea still if I was deficient in B12.

 

B12 deficiency can sneak up on you,  and you can be pretty low on it before some people start to notice symptoms, by the time you do you you need more than just overcounter B12 and you need accurate blood testing before any supplements are given so results are not masked in any way.

 

Given that B12 will only work with other B vitamins and Folic acid deficient in one of the other B vitamins/ folic acid could also lead to B12 deficiency.

 

It would be interesting to test example Shetland population for B12  and see the results never happen obviously, but I'm betting there is quite a lot us unaware that our B12 are not what they should be whether we are experiencing symptoms or not.

 

 

What would be sensible would be to test for B12 during certain times during our lives teenagers , pregnant women , anyone with malabsorption issues, elderly  etc

[Mistymaud]

Yes, you should have ferritin tested. Low iron combined with b12 deficiency results in normal cell size - although you are still deficient in both.

 

MCV, I'm not too fond of. The reason being that it is based on a cell count that has a 120 day lifecycle so it can be very much behind what the true status is at the point it is measured. I've also seen it mentioned in a couple of places that the top end MCV is too high and it should be lowered.

 

Folate is another sticky issue.

Folate is not vitamin b9, it's a chemical compound.

Folic acid is Vitamin b9 in it's natural state.

Yet we tend to use the term interchangeably.

 

Folate is added to foods and there is now suggestion that this chemical is building up in the body. This in itself has it's own implications as to the possible damage it is doing and whether it is impedeing the b12 absorption process.

They actually touch on this subject in the film - people with low b12 and high folate had more neuro damage than the people with low b12 and low folate.

If we look at your statement about them working together then the opposite should be true - but then again we aren't talking about folic acid, we are talking about folate.

See how complex it all is????So at least with a few raw veg you know your getting folic acid!

 

If you were going to test people then the way to obtain a more accurate reading if using the serum b12 test, is to raise the bottom end range - it is far too low. Or at least put in a grey area and combine it with a sample questionaire as to the symptoms that many people overlook because it appears at the time to be insignificant.

So, for saying's sake - the current assay would be 1-200 deficient, 201-300 suggestive, 301-500 possible depletion. 500 - 700 normal.

Then you have a tick for (small example off the top of my head) fatigue, lack of concentration, low mood, hair loss, leg aches etc.

Of course, after any treatment, the above serum ranges then become invalid because the serum levels are compromised as they have been treated and the doctors treat the symptoms giving b12 as regularly as required to relieve them.

The good news is that some improvement can be pretty quick - you aren't going to have to wait around for long before deciding to look for another cause. Many people have some improvements within hours of starting aggressive treatment.

 

Frances - you know that 'you either love it or you hate it' saying about the brown stuff? - I don't come into the first category!

[Silvercloud]

Hi,

 

The problem is going come what do you do if you suspect B12 deficiency, we go to our GP and then what ?

We know some GP's are not clued up enough on the subject, are they going to agree to get accurate blood testing done?

Are they going to also test for it if they are not sure - just to be on the safe side ?

We know its easilty treatable and cheap to cure but getting a proper accurate diagnosis is another whole story..

 

What do you suggest?

[Mistymaud]

It is the most bizarre situation.

 

We have doctors who are not taught about what this illness does to people and essentially they are taught that it's trivial and treat it accordingly.

They believe that the serum b12 test is 100% accurate and is a complete diagnosis.

They also believe that a b12 alone is not of any particular significance and patients must also show signs of anaemia.

In Scotland the situation seems to be worse because not only do the medical professionals demand that there is anaemia, but that the anaemia needs to be 'severe.'  (This I can prove)

 

And this attitude extends right up the medical scale. And the medical professionals, according to politicians like Mr Mathesson, can't be instructed to do anything - they are the experts.

 

This is why this film is so important, because if no one can be accessed and no one can be challenged and no one is accepting responsibility, then the patients need to know this.

 

When it comes to diagnosing the condition there is no one blood test that will prove it conclusively. The NHS use the serum b12 - which is inaccurate because it measures haptocorrin as well as active b12. The lower end range is also set too low. Many doctors also literally use the numbers as a specific diagnosis - so if your reading is 199 - you're deficient, if your reading is 201, your not ill.

 

Again this is done because they do not understand the nature of the illness and the limitations of the test.

 

The other tests that need to be done will not be provided on the NHS. They won't supply the holotranscobalamin or, probably more importantly, the methylmalonic acid.

 

Patients are in a lose-lose situation.

 

So little has been done regarding this situation and so much knowledge has been lost, it's actually pathetic.

 

The politicians won't listen, the higher medical authorities don't want to change things - so, until things improve is it up to individual doctors?

 

The BNF guidelines are there, it tells them how to treat patients with suspected neurological involvement - and that's not proven neuro involvement (they don't need to get a neurologist to confirm it) it's just suspected - and that is with every other day injections until symptoms stop improving.

 

I think we can only just start to appreciate how huge this problem is. How little patients are heard and how ignorant medical professionals are.

 

Maybe it's indicative of how insecure we are as a society in that doctors (and patients) require 100% evidence in physical format to confirm a patient is ill.

 

Historically, when they didn't have access to such 'sophisticated' blood tests and MRIs, scanners etc, they just believed patients. They believed patients in the era before the treatment was found and they recognised that the blood test results were simply individual possible symptoms - they may exist they may not.

After the treatment was found they treated the symptoms - all of them - and they realised bloods were rectified very, very easily.

 

These days, if the bloods show nothing (and we know now why they don't) patients remaining symptoms are discounted as being hysterical or attributed to one of the neurological illnesses of unknown cause.

 

It's crazy.

 

So no, I can't give you a definitive answer. I can also compound it by saying when they look for the cause of a b12 deficiency, they usually look for intrinsic factor antibodies, which used to be thought of as being the main cause but we now know it isn't - and even that test is only 40% accurate.

 

So now we are in a situation where medically speaking we are less knowledgable than in 1926. But then they knew to give enough and frequently enough to relieve symptoms.

 

Hopefully, if this film gets enough coverage, at some point there will be enough doctors out there for them to start making the noise. For them to question their training, for them to look at patients with such symptoms in a different light - and stop giving them antidepressants and sending them for cognitive therapy.

[Mistymaud]

... I'd just also like to add:

 

The reason doctors believed patients in the past, was that these people (before the treatment was found) actually died.

They tried to find cures, they watched them die and then they took them apart to try and find out what caused it.

I've got the reports on some of these patients that were researched on and I can read what their spinal cord was like when it was extracted and what their muscle tone was and everything about them.

These were real people, who suffered and knew they were going to die a horrendous death.

 

These days they still die, but because we are ignoring b12 deficiency has the illness just been categorised under a myriad of different names?

[Silvercloud]

Hi,

 

well we hope at least some of our medical profession will read at least some of the info we can but hope, when I started the One world birth thread and putting info for mothers out there to start to ask questions  on eg options/choices in pregnancy ,birth and beyond which some mothers were clearly being denied or bullied into other choices, it did get people talking as to what is going on in our maternity services, and where to find up to date information if they feel they were being fobbed off etc.with relevant organisations and where to get outside help.

It also raised awareness of conflict of interest role held in a management position.

 

The more people discuss, talk about the subject raise questions of the subject and don't be allowed to be fobbed off and be provided research that's up to date and evidence the better. This is what starts to drive standards up and starts changes.

 

We could be banging our heads on a brick wall, but you never know just someone here in medical profession may just do some reading and start to ask questions on behalf of patients but then again I won't hold by breath .

 

Excellent post in raising awarenss of B12 so at least people can be aware themselves of the problems of getting a diagnosis and what likely they are likely to expect with regards testing etc which could affect any of us at anytime lets not be ignorant thinking I've got no symptoms so by B12 will be fine we should all be informed.

 

Sometimes there is still an old attitude i'm the doctor your the patient, you do as you are told and don't question so some people do put and shut up.

Very hard to overcome especially perhaps with some elderly and younger people who may find harder to question authority in a certain position.

[2thumbs]

@Mistymaud

 

In the absence of a definitive diagnosis, what basic steps can we take to offset its effects as a treatment or preventative measure?

[Mistymaud]

That's a good question - and it leads down so many roads it's incredible.

 

Hmm.

 

Maybe it depends on what your expectations are and how far you are willing to take charge of your own health?

 

Okay.

In my own case I couldn't have done anything differently regarding prevention or treatment up until the point my diagnosis was revealled. I couldn't have eaten a better diet, I had no knowledge whatsoever of the illness or it's true symptoms, I had no knowledge up to the point of diagnosis on how to treat it correctly.

 

Now, you can make informed choices and if I had had the information given to me, say 5 years ago, that I've provided now, what happened to me, wouldn't have happened.

Knowledge is power.

 

So, make sure you are well acquainted with all the symptoms - I think I put the interactive symptom checker up here. Don't discount minor stuff. Don't put anything down to age etc.

if you are concerned, go to your doctor and see what reaction you get.

If it's a positive informed reaction then you are on a roll.

 

 

One of the main causes of b12 deficiency is low or no stomach acid - this is called hypochlorhydria or achlorhydria - you can get tests done privately for this. Low stomach acid, although more prevelant as you get older, can and does happen in younger people. If you have low stomach acid, then you won't be able to absorb nutrients properly. So in that instance you could make the decision to take preventative measures by supplementing with one of the high dose lozenges or tablets prior to getting any symptoms.

 

What you have to remember is, that dependent on when you take the supplements, if you have a subsequent blood test, it will most likley be normal.

 

If you watch the film, when it comes to the elderly, they clearly state that they think everybody should be tested and supplemented.

 

If you want to take it to the other end of the scale - anybody can go out and buy a supplement at any given moment in time. As long as people are aware that supplementation can affect test results which currently doctors rely on for a diagnosis then prevention is better than cure?

[Silvercloud]

Hi,

 

I suppose for preventive measures obtaining B12 naturally from food would always be best and preferred option, the problem of this is eating right food rich in B12 in sufficient amounts. In its natural state it is far more useful to the body % wise.

The same as iron, iron taken in its natural form is virtually impossible to overdose on and the body takes up a much greater % of it, it takes only what it needs. Spatone is excellent example.with it being in a natural form there are virtually no side effects unlike iron tablets where the tablets are artificially produced and %iron uptake that useful is not as good and its is possible to overdose on iron tablets.

 

So in an otherwise healthy person as purely prevenitive measure check diet try to include B12

[Silvercloud]

rich foods and you could also supplement with B12 . Remembering that B12 DOES require combination of B vitamins to work effectively.

iron rich foods are better than Spatone in the diet ,but Spatone is excellent natural supplement if you need to just to add or boost levels.