Mistymaud

Ooh, it won't let me edit my own post. I'll clarify what NEQAS mean for those who find it a little confusing: Patients who present with indications of b12 deficiency particularly relating to parasthesia (numbness, tingling, burning - many of the symptoms you would suggest poor circulation) or joint position sense (toes and fingers being manipulated but the patient not knowing which is up or down) OR anaemia, then the patient should have bloods taken prior to treatment (because any treatment can affect levels). Please note that even a multivit containing b12 can affect levels. When it comes to dementia - b12 deficiency is known as one of the reversible dementias. Yet patients only usually get enough b12 to reverse blood serum levels. Any studies done with larger amounts usually focus on patients who have severe dementia (that has resulted in permanent damage) rather than those who have the subtle forms of dementia at the commencement of illness.

An alert was put out about b12 deficiency last year in May by UK Neqas - it shows just how behind the times Scotland is with treating this illness. England is behind too - but trivialising it and not looking at the full picture is costing lives: And Neqas are the experts, I know they sometimes produce documents for WHO. False normal B12 results and the risk of neurological damage. B12 assays may be vulnerable to interference resulting in normal values despite severe cobalamin deficiency. Where there is discordance between the clinical features of neuropathy – parasthesiae, loss of joint position sense, or megaloblastic anaemia and a “normal†B12 result, clinicians are advised to request storage of serum for further testing and are advised to treat the patient with B12 replacement therapy. Further testing may include repeat testing by an alternative B12 assay, holotranscobalamin assay, serum methylmalonicacid and measurement of intrinsic factor antibody. Treatment with B12 should not be delayed to avoid progression of neurological damage. References Carmel R, Argawal YP. 2012 NEJM 367:4 385-386 Hamilton MS, Blackmore S, Lee A. BMJ 2006:333 654-655 BJHaem. 2010 149 supp 1 abstract 54 Devalia V. BMJ 2006:333 385-386 For further information regarding methods affected see downloadable publications - Holotranscobalamin assay 2010 - go to members area- participant information - publications.

Anybody watch it? I'd like to bet it mentioned Edinburgh University's 'cutting edge stem cell research'? Amazing - they don't know that b12 deficiency is a demyelinating illness, brush it aside (particularly if a patient has normal serum b12 levels) and then start looking at every concievable cause of demyelinating illnesses. Maybe if they actually started listening to patients at the point of contact instead of trying to shut them up, then the message would get through to the scientists who are looking for a 'cause?' Maybe it would actually stop people degenerating into paralysed vegetables who live in a murky foggy nightmare world? And I include myself in that category. Maybe patients like myself would not be shunned and hated but listened to. Maybe then the scientists and medical professionals wouldn't have as much egg on their faces as they are getting. Here's a great starting point for all medical professionals to ask themselves when they are looking at the cause of demyelinating illnesses - "What function does B12 perform in the body?" Dissertations only accepted at 12,000+ words - because we all know academics like to use 200 words where 2 would do nicely.

Just thought of a specific instance with regard to confidentiality. A couple of years ago a woman I know went berserk because her husband had gone to the doctor and the doctor had starting telling the husband all about the woman's medical condition. Shame she hadn't told him first. All hell broke loose. Breach of patient confidentiality - even to a husband.

I interpret client confidentially in that you never disclose personal details outside of discussion with relevant parties within the organisation. So, you work for a solicitor and you don't go chatting to your mates about Mrs Chatsworth getting a divorce because her husband is having an affair with the milkman. - It's made up, purely fiction in case there are any Mrs Chatsworths out there with husbands in a similar situation. Gagging is inserting a clause threatening staff for speaking about internal errors or problems within an organisation - ie with the organisation itself. So, you could have a situation where staff are aware that widespread medical errors are taking place but their contract states that they will be sacked and prosecuted if they speak about it. Here, of course, you have cross-border incidence with criminal negligence. Say for saying's sake that Harold Shipman had a nurse that had been in attendance when he was giving his patients overdoses but her contract contained a gagging clause - where does that leave nursey? Some would say, no contest, she reports him or she's party to murder. But that is a clear cut case and where should the line be drawn and who dictates where it is drawn? I still don't know if the contracts contain confidentiality clauses (which they should) or gagging clauses.

Carmichael told me about 4 years ago that we had nothing to worry about because it would never be privatised. I was pointing out that it could affect all manner of business in the islands never mind private individuals and ultimately affect the economy of the region if delivery services were allowed to cherry-pick. I think he just opens his mouth and lets words come out.

Just as a matter of interest I've been browsing the Orcadian Online and apparently there is a tv programme on MS in Orkney MS & Me A search for a cure on a satellite station this week. I know Shetland is a smidge behind Orkney but it may be of interest to some - pound to a pinch of snuff they never mention the symptoms being the same as b12 deficiency though!

I think there might be a bit of confusion here. I was responding to what you put, " 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" and pointing out that although this would be the preferred option most people can't eat the required amounts if trying to overcome or prevent a deficiency if a malabsorption condition is present. So I think that essentially, we are in agreement? I would never recommend any particular supplement or type of nutrient to add to a diet, simply because I don't know how any one individual has been affected. One man's meat can be another man's poison. With b12 we know that there is a list of symptoms that indicate a deficiency. We know that it's not toxic. We also know that although b12 and folic acid work together synergistically, having a deficiency in b12 does not necessarily mean you will have a deficiency in folic acid. Some people do and some don't - does that mean everyone with a b12 deficiency should take additional folic acid?

Unfortunately many people who have this illness have excellent diets - and if you look at the volume of b12 via meat that you would need to eat to rectify (not prevent) a deficiency Murphy and Minot's research in the 1920s showed it took about 1/2lb of raw liver per day. Most people don't have a diet like this. If you look at hypochlorydria, that also limits the absorption of such things as calcium and iron as well as b12. I think it does prove though how important diet is and how much more we need to learn about what we put in it and how everything functions.

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?

... 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?

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.

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!

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.

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.

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.

...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.

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.

I think you may be getting patient confidentiality and gagging clauses, confused. No one is applauding gossip. What we are talking about is gagging whistleblowers - that's what gagging clauses are about. When it comes to the B12 and you supporting research etc etc - if you actually bother to watch the films - the second one you glanced for instance - those guys were Nobel Prize winners. If you watch the first, you will find one of the victims is a GP.- who is actually standing out and saying even he got it wrong. We also have scientists from the US and specialist researchers - biochemists etc. For people who've actually bothered to watch the film I think they would realise that I didn't come on for a little moan and the evidence is provided by specialists in the field. I could be wrong but I think your comments are actually making you look quite foolish. However be reassured that I am quite used to people commenting on this subject with the most bizarre statements because they know little about it and believe that everyone else is as ignorant. Good job we aren't really.

Your attitude also brings forth another point - in a small community, to attack somebody, to apportion blame, means it's usually someone that everyone knows. People are scared to do that for fear of getting shouted down, for not getting good healthcare in future, for fear of personal recriminations. The person who has caused the problem is usually in a relative position of power in such circumstances, the patient usually has none. Hence, people put up and shut up - but by doing so, they leave everyone open to poorer care in future.

Staff that abuse the system, the one that patients expect and are promised, leave themselves open to abuse. ie the system exists to put a problem right, yet does exactly the opposite. And I will ask you again, what positive function can gagging possibly exist for? If there is none, why defend it in any way shape or form? And I will edit to ask: what on earth is 'protect the machine from itself' supposed to mean? And I'm also editing to ask - I've not asked anyone for any help. I put my original thread up to help others - it doesn't help me any????

Maybe Shetlandpeat you could explain, to me if no one else, why you think gagging is acceptable within the health sector rather than why it is accepted by the individuals concerned? i.e. what positive function relative to healthcare does it perform?

Erm - I thought this thread was about how safe are your hospitals - or are we concerned only with if we record if people trip and fall etc - Are we discussing H&S issues. And the film that you watched was the second one - and if you actually watched it you can see they don't 'look' small, they give the weights - and they aren't 'small.' And the first link that I put in was about b12 deficiency - the one where it shows people are suffering from malabsorption issues, aren't being treated or tested and are developing illnesses such as dementia. I think I read in another thread that your father has dementia? This isn't about cover-ups, it's about ignorance and how it affects the safety of treatment and patients and medicine. Gagging clauses allow this to happen and, no matter what you think, and what the logic is behind how you think, the NHS is there for the benefit of the patients, not the staff - patients have mortgages to pay too.

... and ShetlandPeat - if you haven't watched the video link I put up, please try to. I've just seen another post of yours. Not wanting to hijack the thread or knock it off track - important subject and all that.

It's got nothing to do with diet - nothing at all. Even vegetarians should easily get the RDA without supplementing. Vegans - different ball game - but since they don't account for 1 in 3 of the population then it's a malabsorption issue. I agree it needs funding. I agree it needs recording (as in your situation) but since b12 deficiency is no longer seen as a cause of death and b12 cannot be patented - it will never get funding. Much more profitable for drug companies to treat something else. You're quite right, the admin bods do do it to pay the mortgage - but it's their kids that die too. They aren't exempt. And with the best will in the world, they know exactly what they are doing for their money, they know they are contributing to other's misery - but they don't realise how much they are contributing to their own. And it still brings us back to the main point which is 'How Safe is Your Hospital?' Are we now to assume that it's okay to cover things up because a few individuals have a mortgage to pay? Wouldn't it be better if those individuals were employed to actually resolve issues not hide them? It's the same money? Wouldn't that make our hospitals safer? Wouldn't it progress medicine in general? Surely we are not now going to be happy with the alternative just because some people need to be kept in jobs?