What the title really should read is 'should b12 deficiency be re-classified as a neurological illness?'
We have the situation at the moment where once the b12 deficiency has been acknowledged patients are clearly presumed to be fit and well when the serum b12 levels have been brought back into the normal range.
But, as recent developments have shown, this is probably because the haematologists are generally considered the experts in this condition relative to the haematological symptoms.
However since it appears they have not been taking into consideration the fact that the neuro damage appears before the blood changes, should it be a case of all b12 deficient patients with remaining being referred not to haematologists but to neurologists?
Of course these same neurologists would have to be aware of the significance of damage caused when a patient is deficient and up to this point they appear to having been relying on the haematologists to tell them there cannot be neuro damage - when there clearly can.
I know it's a "Confused, you will be!" post, but everyone knows now that serum b12 levels are returned to normal very easily and it seems a bit unprofessional to keep referring people to haematologists who are confirming their blood levels are normal. A referral to a good, well informed neurologist would seem to make a lot more sense.
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Poppet11
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A good haematologist knows B12 def leads to neurological damage and does neurological tests, the new guidance is for haematologists from the British Committee for Standards in Haematology, so it seems to me to be the right person to see.
I really don't think haematologists should be doing neuro exams. I think neuros should be doing neuro exams - and after they have been provided the correct information from the haemos. And the British Committee for Standards in Haematology have just reduced the length of time people with neurological damage get b12. Not exactly a beneficial move for the patients.
In fact I'll edit this to add that I think it's clear haematologists don't understand the neurological implications precisely because they reduced the amount of time patients should get intensive treatment for. I think they are still looking for anaemia AND think neuro damage is reversed by levels are normalised. I think that's why it came as a surprise to UKNEQAS that 'some' people are getting neuro damage without anaemia and intrinsic factor antibodies and they put out alerts. Heaven only knows how the 'some' people managed to get their cases looked at by UKNEQAS because UK doctors seem to think it's some kind of big joke - in fact scrap that because we know how - they looked at case studies and research from overseas (they referenced them).
And that's why I think in the UK the same question is being asked over and over again 'why are patients still symptomatic' - the answer is in plain sight.
And really, should we, when we are forced to self medicate, be telling other people that the haemos are getting it right? If they were that good we wouldn't need to self medicate.
Ummm.....I was having, and still am having, very strange neurological symptoms. I asked my GP if the symptoms could be caused by my falling B12 levels. He said not in his opinion but this is why he wanted me to see a neurologist. My symptoms were getting worse and by the time I saw the neurologist I was very concerned. He examined me, looked at my blood test results, said my GP should have referred me to a haematologist not a neurologist. In his opinion my B12 levels were nowhere near low enough to be causing the symptoms I am experiencing and ordered an MRI of my brain. If that was negative, which it was, to take amitriptyline to help with the symptoms. Clearly, he had no understanding whatsoever of the symptoms low B12 can cause. I wasn't referred to a haematologist but eventually my GP has diagnosed PA and I have had my loading dose of 5 injections. It seems to me that there needs to be a huge training programme for the whole of the medical profession.
... and you can clearly see what's happened there:
Neurologists don't understand the metabolic process of the b12 deficiency - they are relying on the fact that the haematologists are getting it right. That the haematologists have set levels to identify neuro damage. Which they haven't. The haemos still are treating anaemia or levels equivalent to.
Once you've had your b12 deficiency identified and have remaining symptoms, the b12 test is worth diddly. What they should be looking at is the neuro damage caused when you were b12 deficient.
If you look at what we do in the UK and make this one presumption:
Anaemia precededs neurological damage.
You can see exactly why all concerned handle b12 deficiency in the way it is.
Your neuro, like mine, made the absolute abstract assumption based on the fact that your b12 were normal now and so you were not damaged. What your neuro should have recognised is that neuro damage could have been caused while you were deficient and looked at your injuries from that perspective.
The neuros need to get a handle on the fact that the haemos are not getting it right. That the metabolic process is misunderstood. Once that fact is recognised by the neuros then all these cases of injury will get the acknowledgement they deserve.
... and you know why they sent you for an MRI of the head - because you had symptoms reflecting MS. Yet the damage b12 causes is usually identifiable in the spinal cord and even then the MRI is generally pretty useless.
I've never been referred to anyone by my GP and wonder if I should have some kind of assessment to see if any damage has been done. Saying that my symptoms thankfully seem mild compared to many I have read about but I still would like the reassurance that would come from a referral to an expert of some sorts. I think there should be a set referral and guidance as you suggest maybe to both a haem and neurologist?
I agree but having said that I was sent to a gastroenterologist for my abdominal problems, a neurologist, for my neurological symptoms and tonENT for vertigo and none of them looked at my overall blood picture to piece it all together!
Anyone who was a member of the old PAS forum will know that there were many reported cases of both haematologists and neurologists who had little or no understanding of B12 deficiency. Marre appears to be one of a very select few who have seen a consultant who actually knew what he was talking about.
Where has the three week limitation in the latest guidelines come from? Some actual research or did someone on a committee just pluck a number out of the air? I know which answer my money's on.
I've had it in my records for over 3 years that my thigh muscle doesn't function - and it's only recently that it has been acknowledged this could be a problem due to my spinal cord. My neurologist put it down as cognitive. Yet you can see the blasted thing doesn't work!
And what can we say about the three week thing? Maybe they should get in touch with a few surgeons and ask them how long nerve damage takes to repair?
Or maybe they should let all surgeons know that it only takes 3 weeks!
And obviously they have to let paraplegics know that a bit of b12 will put them right. Shame Christopher Reeve died - they could have put him right in a jiffy!
The only way they can justify their actions is if they still believe anaemia precedes neuro damage - and the metabolic processes prove that it doesn't.
I am just going to qualify my comments regarding anaemia.
I don't know how long a problem with DNA synethsis takes to manifest as an anaemia in the blood. It could be days it could be months. That is in the biochemical process sense.
What I will say is, I believe most patients do have clinical anaemia. It may not manifest in blood test results (for all the reasons we are aware of - and probably a few more) but I do believe we have it. The skin colour, texture, lethargy, breathlessness, are symptoms most suffer from to one degree or another. And for this reason alone, the fact that these physical symptoms can be dismissed because the scientific tests for anaemia are 'subject to interference' that the diagnosis has to be through a battery of tests - providing those ranges are set at a point which may indicate neuro damage and/or neuro symptoms even if the patient is still in the normal range.
And another point relating to the new guidelines: if they are concerned that some people are having neuro problems but the test isn't picking it up - why not just raise the ranges?
When you say take charge... presumably you mean that a B12 deficiency test should be ordered by a Neurologist at an early stage, rather than wasting time on getting a haematologist to pick up on it by their own accord?
I think the condition of b12 deficiency should be re-classified as a neurological illness. rather than a blood disorder.
If the neurologists got involved, examined the effects of the metabolic processes and established how a disfunction could manifest in physical symptoms (aside from the purely academic descriptions such as damage to the pyramidal tract etc) then they could explain to the haematologists (or some of them) that their tests were not identifying patients correctly.
I think the neurologists need to revisit b12 deficiency. I say re-visit because over 100 years ago the neurologists were highly involved with, as it was then, pernicious anaemia - whether there was anaemia present or not.
It was only chance circumstances that led to the illness being handed over to the haematologists and ultimately being classified as a blood disorder.
Most of us have experienced attending neuros who clearly believe all is well because b12 are normal now. They clearly rely on what the haematologists are telling them - that neuro damage is prevented or reversed once levels are normal. But that simply isn't the case.
Even in psychiatry now the word is out that b12 deficiency is being overlooked and undertreated and is being misdiagnosed for mental health conditions.
The neuros have got to take the bull by the horns. Revisit it all and start again.
you make some good points. There is no doubt in my mind that B12 deficiency is not given enough priority. As for reclassifying it as a neurological illness, it gives me pause. Certainly with low B12 a neurological condition may well be indicated and that should followed up. And yes, a neuro should take the bull by the horns.
Too many people just believe that neurological conditions are entirely mental and in the mind but this is certainly not so. The condition often develops and exists because of other factors. Most of our neurotransmitters are not made in the brain, they are made in the gut. Blood specialists need more training in this area for sure.
I am always at a loss as to how people can draw the conclusion that a neurological illness is all in the mind. We know that b12 deficiency damage can be proven 'mechanically' although it is difficult particularly after treatment commences.
However it can still be proven by biopsies.
Yet surely the question should not even be raised. If you have an expert who understands the metabolic pathways, who understands how symptoms manifest when these pathways fail, and also understand how fallible the tests are in respect of their levels and interference - why would the question even arise?
Surely it is only the ignorant (or just plain stupid) that would even embarrass themselves by claiming a patient's remaining symptoms were all in the mind.
When people used to get this illness in the past and didn't get treatment, they died of it. The majority of neurological complications. How much evidence do people need????
An over reliance on mechanical medicine combined with a huge dose of ignorance, is costing lives.
I think the 'prove it, prove it' mentallity has got to be given the elbow. It's a case of experts now proving they understand what they are dealing with.
Prove it should never really come into it - we go to them for their professional opinion, if they aren't well informed, then they take the consquences.
I have, over the past few months noticed (and I could have missed it before) a problem (another) with the IFA test. Apparently if you have treatment within 2 weeks of having the test it can throw false positives or negatives.
I don't think this came up before. So does that now mean that all the people who had an IFA test done within 2 weeks of taking b12, should have another? Does it mean that some of us were guaranteed to throw false negatives and others false positives?
Interesting that even here, with people who believe they have a diagnosis of PA may be back to the 'prove it, prove it' game.
sorry, when I said Mind, I should have said brain - I didn't mean psychological or indeed get into the prove it game. My point was simply that the ignorant believe that neurological conditions are just in the brain and not that a deeper, bodywide problem likely exists.
But we do have to prove it - mechanically. And if we can prove it mechanically, then as soon as b12 levels are normal, we're presumed cured. Everything reversed.
I don't think someone with ME has a test that proves anything. Although for a long time they weren't believed - but they still don't have a test.
There is no specific test for MS, Parkinsons, motor neurone, - there are 'typical' cases resting on certain diagnostic criteria but there are many more 'atypical' cases. Yet these are all neurologically degenerative conditions.
So, when we have the information and the science to back it up - why on earth would any one try to accuse us of malingering?
Unless, as you say, they are letting their ignorance show (insert blushing emoticon)
They are indeed letting their ignorance show, and so much of the medical community is entirely focussed on medication for the symptom rather than investigation and research of the underlying causes and then dessemination of that research.
I have even heard rubbish like, "those vitamins are bad for you, i don't like vitamins." .. The wise words of a GP - What a load of rubbish!
And whilst we are on the subject, did you know that years ago, many disorders (particularly extreme depression [suicidal thinking], anxiety, schizophrenia and alcoholism) had been treated very successfully with high dose vitamin B3 (niacin) and yet now people believe it can harm you though there is virtually no evidence to coroberate that and I task anyone to find a list of deaths caused by Niacin overdose.
The ignorance that exists in medicine and the same that is pushed onto the public.
Interesting what you say about niacin - if so many issues have been overlooked with b12, what else is going wrong?
I do think that Linus Pauling has a lot to answer for with his megadose vitamin theory. I think after that it was cemented in minds that vitamins are some kind of 'fad.' They are now seen as a 'modern' thing. A Fad, a Supplement, a Top Up - no, we needed the stuff all along we just hadn't isolated it, identified it and established the purpose until the last 80 years or so.
But that mind set that the public has inherited from the humble GP is very hard to get past.
Exactly.. the perception that they are a newly found Fad... and you know... many years ago, the humble GP was all over and about this #. So why the change?.. well despite anything else, as a pharma company, we can't possibly be having people help themselves (and certainly not under the advice of doctors) with the use of Vitamins.. god forbid.
Doesn't say much for modern doctors though, does it? If they think vitamins are a fad, if they don't understand the function they perform and the specific problems that are caused if the human body doesn't get them, if they can't see the patients sat in front of them are physically ill?
What happened to observation; don't any have enquiring minds?
Every single one of them has the opportunity to contact pharmaceutical companies and tell them their product isn't reversing neurological symptoms - what do doctors do; tell patients it is all in their mind.
It's turned into a situation where doctors prescribe, researchers research with little or no patient input, and pharmaceutical companies provide doctors with instructions on what to prescribe. Doctors have allowed themselves to be turned into dispensing pharmacists - at best.
Ti keep on getting dropped out ofHU, odd. Third time lucky I hope, neuros don't really feel comfortable away from brains and spines. Mine thinks b12 has some kind of euphoric placebo effect, and deficiency is anaemia. It will take a generation to educate all these doctors, wouldn't it be better to set up regional multidisciplinary teams of well informed, trained people able to be coherent and to act quickly on patient needs. Perhaps consultant haemo, neuro, gastro, and b12 nurse specialist. They would develop best practice based on large numbers of treated patients and patient data, as well as latest research, and would benefit from sharing knowledge between teams. We would have somewhere to be referred to for more than blood tests. A picture of what deficiency actually looks like and what it is would start to emerge in a medical setting, not just as patient anecdote. GPS would have a referral point and would become educated through interacting with it, and everything would gain validity. We would have proper differential diagnosis, testing and so on from day one. It works for other conditions where diagnosis and treatment vary widely, and it is a reasonable thing to aim for given that the BMJ is finally airing the issues.
Waiting for doctors to update their skills isn't going to happen, gps are first line workers, not experts on everything. They need something to take a lead from, all they get now is vague messages which warn them of problems but do not explicitly tell them what they need to know. Mine are in strong denial won't question why I've got all that b12 floating round my system doing nothing. My macrocytes have normalised, and that it as far as they are concerned. And I read the same story for many others.
I don't think neuros will pick up this ball quick enough for more people to avoid wasted poorly years with pain, a downward slide and even dementia for those who can't fight their corner. I thought I was an empowered patient till this, b12def is not my only health problem. They may be related but I've no way of knowing till I'm treated properly. In the meantime there's the brick wall we come up against. Self medicating helps individual people, but fails the person who cannot get past the wall, or who has no knowledge at all.
Well, it was third time lucky - you certainly put some thought into that post!
To be quite honest I'm starting to think neuros don't recognise anything outside of people who've had an obvious stroke, are completely paralysed and don't know their own name never mind that of the PM.
I think you are quite right about GPs - and they are taking their lead without really understanding what they are dealing with. The only hope I can see at that level is the BMJ article. It's actually got them questioning what's happening.
They see us all the time. Nurses see us. They know that b12 deficient patients are frequent flyers - coming back and asking for more injections and complaining of symptoms. They might start to question the neuros and haemos and taking the patient's side more.
As it is now, what I can't forgive them for, is having sick people in front of them and refusing to acknowledge they are sick. It sends me skyward. Just because they don't have all the answers doesn't mean their is nothing wrong with the patient - it's a patently cruel practice they are entertaining at the moment.
I think also the BMJ article will get them worrying - not just GPs but the neuros and the haemos - because they are all liable if they are getting it wrong. Self preservation is more likely to prompt deeper thought than any desire to help their patients!
In short I think that article is actually going to scare them. Make them reassess if their liability insurance will cover the pig's ear they are making of it.
And of course you are quite right. We know to some extent what is going on - other's don't and more so, they put they faith in doctors 100%.
I've actually known people die over the past few years - people that quite likely could have been helped.
Hell's teeth, I could have been helped.
I just think with the BMJ article that it might not be perfect, but it might just get them thinking and even if they stop looking for the anaemia first - then that is a very big leap forward.
Thank you, Poppet, for this post and for your previous Sunday night deep thoughts. There is much to consider in both of them. I am in the U.S. and have the luxury of receiving an injection every 2 weeks as a result of a consultation with a neurologist. It has been so helpful.
The consultation, though, was not for PA, as I agree it should have been. It was for processing issues. ( I was having trouble decoding road signs, as in reading "Slower. Traffic keep right." and being, naturally, confused about what that meant, exactly.)
Many tests were done, and the result was more frequent injections. Sometimes I deplete my stores of B12 too quickly even at this frequency, especially under stress or with physical exertion.
In the U.S., most hematologists are also oncologists. I sometimes wonder if this doesn't give them a differet mindset about treatment. Perhaps they are more in the habit of declaring success when disease progress is stopped or even slowed, rather than dealing with the nuances of how it manifests in the patient. Less fine tuning diagnoses and more waging all out war against disease?
Just some thoughts. Again, thank you for your post.
Oh dear. I'm still having trouble with: Slower. Traffic keep right.
When I told my GP I was having trouble getting lost - I was told to buy a sat nav. It doesn't help when you're walking.... so the statement probably said more about the doctor's lifestyle than mine!
Interesting about the oncology and the mindset.
The current mindset in the UK is to diagnose everything as cognitive. They are more likely to reach that conclusion after getting back baseline blood tests that don't show anything. I was told by a doctor that there was an epidemic of people with emotional problems. A statement I found to be extraordinarily stereotypical and naive.
Then again at the time I didn't realise my doctor really didn't understand b12 deficiency.
I've met a few Americans when they are working in the UK and found that their ethic in general is to overcome a problem. To get a result. Maybe that ethic extends into the medical profession?
I've mentioned before on here that if you phone an American lawyer about b12 (because they have won cases) you get to speak to the lawyer. In the UK you get someone who 'assesses' your case first - a clerk, sometimes a legal one. The American lawyers look at angles to win. The Brits look at reasons not to take it on. They don't like taking chances - they are looking for the 99% certainty.
It's the same with doctors - I have spoken to loads in the US and rarely do I get a gatekeeper (in fact they usually use doctor's first names). In the UK - you have got to be joking.
But there is this barrier of THEM and us in the UK in many aspects. They really don't think that they have anything to learn from us.
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