It's been a while since I was on this lovely forum and I hope everyone is doing OK.
I was discussing B12 with a GP contact the other day who 'specialises in Mental Health' and talked about the benefits of antidepressents. I said I wasn't a fan because it can be a way to avoid dealing with the root cause like hormonal imbalances, stress, trauma, and vitamin deficiencies. I then asked him if he routinely tested vitamin levels and he said no, no-one did. He said they are not trained to do that and won't look for it.
I said there were new NICE guidelines for B12 coming out that state B12 must be tested for anyone with at least 1 symptom on the list. And depression, anxiety, and psychosis are all featured on the list so must be tested. He was stunned and went quiet, then said he'd be interested to read more.
I don't know if we've already seen these articles but I think this single example and the feedback from GP's is that they think NICE are 'making too much' of B12 to expect them to offer testing for the list of symptoms. They think OTC vitamins are enough to solve the problem.
I think this superb progress made by the PAS and the new guidelines further exposes the profound reality that Doctors simply do not know a single jot about nutrition. They know as much as the next person.
So, I hope that--sometime in the near future--the world can start to move towards the reality that what we eat and how we live is the foundation of our health. Stress, sleep, exercise but also diet are so critical - Doctors do not appreciate this. Maybe they're trained not to.
In any case, I think the new guidelines make SIGNIFICANT progress and I applaud those behind it.
Thanks for your post. I do agree with your findings. My GP was so condescending to me I got up and walked out. At least yours seem to listen to what you said. Mine interrupted, put me in my place he thought was best for both of us. I do hope all this gets better over time, but I have my doubts, more money is to be made the way things are now and keeps world population in check.🤷🏼♀️ The genie needs to stay in the proverbial bottle.
It's horrible to be on the receiving end of that condescension isn't it? It's hard to know how one should react when being spoken to as if you're not right in the head of have an 'overactive imagination', somatic etc.
My example wasn't my own GP but someone I met who is a practicing GP.
Reading the responses to the Pulse article I posted, the resistance seem very strong - GP's suggest 'symptoms are so vague'. I think B12 contravenes all their training and basic understanding of human health. That's why I think B12 is a profound health condition - it can't simply be treated with OTC pills. And for it to cause mental disturbances, cognitive disturbances, nerve problems...we know the rest...I think it's 'flooring' for GP's to accept. It means that everything we commonly accept about the human body--that body parts aren't interconnected and should be treated separately--is quite wrong.
Either way, if the guidelines are reviewed and accepted it will make a profound change to the medical system. Fingers crossed it gets through 🤞
My own observations, unsystematic as they are, are that GPs like black-and-white diagnosis or decision making, eg, based directly on test results, and do NOT like having to make clinical diagnosis based on general, rather than specific, rules and guidelines, such as is the case with B12 with neurological symptoms, where there is never a concrete indicator. Also, GPs don't like making a comprehensive listing of symptoms, including indicators of severity, which they have to do if they are to make a provisional diagnosis of B12 deficiency, which then must be tested with two or three months of every-other-day injections for two or three months, followed by another assessment of symptom severity, which is required to assess improvement. Add these things to the aversion GPs have toward anything having to do with nutrition, and you are going to get the GP obstinacy which is so often described on this forum. That's my outlook, but I am cynical when it comes to the entire medical field, in which, for example, the earliest article describing B12 deficiency with neurological symptoms (ie, no megaloblastic anemia) was published in 1900, and has repeatedly been stated matter-of-factly in medical journal articles since, and yet the proposed NICE standards revisions have to include a teaching statement to that effect. Which doctors will likely continue to ignore.
Really interesting. I read an article the other day which I wish I could reference but now can’t find. It stated that a research study had found that vitamin deficiencies were common in those who had died ‘of natural causes’ and appeared to suggest that being replete in vitamins was essentially key to survival. Whilst I’m sure that’s not the only essential criteria I did think that statement was revealing.
Far too many people currently on 3 monthly injections are being told they need a blood test before their next injection to see if they still need them. There’s no understanding of levels being raised due to treatment so it’s being used as an excuse to deny further injections. I had this discussion myself last time and was told well he’ll probably put you on oral medication. I had to explain what PA is. From reading the draft guidelines I think they will lead to more people facing the consequences of being tested again and having injections stopped or being told to buy oral medication instead. The guidelines should state that once a diagnosis of PA is made there should be no further testing of B12 levels and treatment is for life. The standard anti intrinsic factor antibody test is only on average 50% accurate causing a large number of people being denied treatment because of a false negative test result. There is a more accurate alternative test but this is rarely used. An accurate test result is vital so this needs to be addressed too.
A blood test to see if they still need 3 monthly injections: patients, it appears to me, find they don't need 3 monthly injections - they need their injections to be able to control their symptoms. And for many, waiting for 3 months for the next is not possible. It is deterioration that cannot continue to be rectified by the subsequent injection, so a downward spiral begins.
How would measuring a serum B12 amount inform a GP of whether any of this has reached cell or tissue level in effective amounts ? Or at all ? Or whether it is floating around, belly-up, contributing nothing ?
True, the NICE symptoms list would get more people tested. These symptoms seem to be mainly those likely to be experienced in those at a severe or late stage. As we are aware, B12 can affect you in many ways and patients can buckle under the sheer weight of number - but GPs still seem to think it is about being tired, having tablets, getting better, - move on. Next.
We really, really need GPs in primary care to recognise B12 deficiency earlier, to know what better or worse can look like in an individual. A phone-call is like a blindfolded appointment.
I would like to expand on your comments regarding serum B12 test results. One of the primary difficulties pertaining to serum B12 test results is the validity of the reference range, or rather, the lack of validity of the reference range. Serum B12 test results have only a vague correlation with neurological symptoms. A large part of validity problems have to do with a dichotomous interpretation of serum B12 reference range as indicating either one of two possible states: adequate B12; or deficiency of B12. Missing is a category described in one of the articles recently posted, which is "insufficient B12". One of the most feared manifestations related to B12 is "subacute combined spinal cord degeneration". If I am understanding correctly, and please correct me if I am mistaken, "subacute" means that B12 is within the reference range, yet B12 is insufficient to the extent that the spinal cord is degenerating.
So, in my mind, the first step in addressing the mess the medical world is in regarding understanding B12 deficiency with neurological symptoms is addressing the problem of the poor validity of the reference range in the test most commonly used by doctors who are trying to assess patient B12 status.
A patient who initially presented with very mild B12 deficiency (196 ng/L with a base range of 197 ng/L) seems to be continuing to deteriorate in front of your eyes, despite by-the-book injections. She has now had a loading dose of 6 injections, and two maintenance injections at 3-month intervals.
As a concerned GP, you remeasure serum B12 - now at >2000 ng/L, six weeks after the patient's last injection. So why has your patient got much worse ?
She is a long-term vegetarian, but surely if this was solely a dietary problem, it should have resolved itself during loading injections ?
Well, I think at this stage, a lot of less experienced GPs would have panicked, assuming they had overdosed their poor patient, and stopped injections immediately.
But luckily, my GP had heard of MMA (see today's post !) - and had mine tested. The lab result ?
"Methymalonic acid above the upper limit of the reference range suggests functional B12 deficiency/insufficiency at the tissue level provided that renal function is not impaired."
My GP had suspected functional B12 deficiency - and so had already tested for renal function impairment. My next doctor's certificate said "serious B12 deficiency" - and probably kept my job open for me.
This was back in 2016. it took three years of frequent B12 injections for my MMA to drop into range at the sixth test. Thankfully, no-one cared where my B12 serum level was any more. It was no longer the measuring stick.
Re "subacute": not qualified to correct your interpretation, I looked it up in the Oxford dictionary : "subacuteadj. Med. between chronic and acute" ...
"chronicadj.1 persisting for a long time (usu. of an illness or a personal or social problem) "
"acute (of a disease) coming sharply to a crisis; severe not chronic"
I'm not sure what comes between chronic and acute - " a creeping realisation" ?
Would SACD get tested for and diagnosed, unless it was already acute ? Chronic conditions tend only to be chronic because they are ignored (bit like "nagging " is really " having to repeat what is said because no-one is listening" !)
WiscGuy Cherylclaire I always thought the "subacute" part referred to the demyelination. This article describes it as such karger.com/crn/article/12/1... "subacute progression in the central and peripheral nervous systems "
I guess I would interpret that as indeed between chronic and acute 😂 Chronic because it has degenerated over time, acute because it causes severe symptoms. ?
There’s a lot of statics and Maths in medicine. That cut off and laboratory results do not tell a person’s symptoms. The end.
Similarly, lots of the studies for vitamin B12 deficiency are flawed !!
The sample sizes and the ‘population’ they have used in studies. I laugh at. For example, studies focus on over 60’s. Yet, B12 deficiency occurs in those who have coeliac disease, Crohn’s disease, eating disorders as just examples where the ‘population’ includes children and teenagers. Similarly, it can occur in babies. Where is the research on these please ?
So, in my humble opinion, a good study would be a large (>1,000) population of all ages, genders, ethnicity over a long period of time ( over 2 years). I’ll look at a piece of research and go straight to the maths and think what a load of rubbish because of the sample size being so small. It will not give an accurate picture of those suffering.
Yet the NHS provides Evidence Based Medicine based on that research. Well, show me the evidence then please. Then I’ll get my red pen out and go through a 37 page document making notes and scribbles. Here we go, I’ve just taken this apart.
You need to go back to the drawing board. What you can’t get more funding and then there you have a delay of 4 to 6 months for the Ethics Committee to decide. Research has to be accurate, reliable and replicated. If someone else undertakes a similar study but has totally different results, then what ?
Doctors follow algorithms and flow charts for treatment. Over lockdown, I had several telephone appointments and described my tremors on standing. I told one health professional that they were high frequency. I would have given an arbitrary figure but they were totally disinterested in me being unable to coordinate my body. You see they only had one formula to improve my health.
The other day, I spoke to an elderly relative. They told me it took them an hour to shower. I asked them how many litres of oxygen they we on. They are not B12 D.
Us lot, we can become extremely short of breath, dizzy and our mobility can really be affected as a consequence. This severely impacts our daily living activities, such as washing, dressing, toileting our selves, making a hot drink for ourselves. I remember trying to walk 20 steps to the kettle and it was like running a marathon.
Thanks for your reply CherylClaire. Love your words here:"a phonecall is like a blindfolded appointment".
That's exactly how it felt when, in the depths of the third lockdown I plunged into deficiency just days after the first vaccine. It had been leading up to that moment for two years and I believe the pressure on my deficient immune system was too much. I had multiple system breakdown including cognitive disturbance, blood loss, Raynaud's symptoms, and only a phonecall to try and get help. And against a pushback of skepticism.
Re: blood testing. I believe it must be fears of overdosing that lead Doctors to insist on it. Why can they not prescribe injections in the way they prescribe PPIs or SSRI's, i.e. without any evidence and only based on patients word?
I feel that it is a mindset we need to break. A bit like 'breaking a glass ceiling', to borrow a phrase from women's career plights to receive due recognition and opportunity to reach senior management positions.
Doctors have their views and B12 does not fit into their world. But I do feel more optimistic that these changes will chip away at that and make them think twice.
A few key things are important for me:1 Education for the public and professionals.(a public health program?)
2 Find a new comprehensive test for diagnosis sooner. (ie shilling test)
3 A change in legislation to allow people who know they're symptoms to self manage with maybe a yearly fu with primary care or a specislist B12 clinic.
4. Sub contract the service out of primary care to clinics specifically for Vitamin B12 management.
Points 3) and 4) a specialist clinic is a great idea and would make sense. Not just for referrals but for guidance, since physical travel may be a barrier.
Oh wow, great. I wish I'd known about you when I became ill 2 years ago. I spent alot of money in London clinics and salons before doing self injection on my own.
I also noticed an article from Dr Mark Porter in the Times who is also saying that General Practice is likely to change quite a bit with the new guidelines, which will lead to more people being diagnosed with B12 deficiency.
If that's the case, logic might suggest demand will increase for specialist help since there's an absence of it. So maybe an academy or something will become necessary and you'll get an opening that way?
I do think the guidelines make significant progress.
Thank you for posting. I totally agree with your comments. I doubt they want to change their ways of thinking. Antidepressants solve any problem for them. Investigation requires more time and perseverance.
At one point in my life, I worked as a ward clerk on a kidney ward and the standing joke was saline was the cure for everything !!
Only because they would go through boxes and boxes of the stuff. It is used to flush the drips through everything. Lots of people were very poorly so had numerous medical devices to help to treat and/or make them comfortable.
I myself can't wait for the new guidelines. Unfortunately, I am not sure they are going to make much diffrence. Without education.I envisage Vitamin B12 being laid at the patients door to self manage (which most already do)
I agree totally! It's not rocket science is it? Biochemistry is the basis of us humans and all living creatures. I can't believe that this isn't even thought about in the 21st century. It's basic stuff and this general ignorance/lack of interest is responsible for our ongoing suffering. What a difference it would make if preventative medicine was the norm, not big Pharma. Think of the ££££ the NHS would save!
I was so inspired by your story that I just left a message for my previous psychiatrist telling her about my PA diagnosis after leaving her care, and encouraging her to test people for B12 deficiency.
Excellent! Spread the word, right? Doctors don't know - I genuinely think that's true. They haven't been trained and aren't expected to look for nutritional deficiencies. Now, yes, that could well be because of Big Pharma's influence. But it could also be more innocent on their part where they simply haven't thought about it or been trained.
Now, with new guidelines that state B12 must be checked if one symptom is present, they will have to 'up their game' and check for anyone presenting with anxiety or depression or--god forbid--psychosis that needs to be checked along with many other potentialities.
I have applied for my notes and whilst reading them, I had a good chuckle at what someone has written a couple of times. What Band was that person writing that ?
Many years, I did a stint in ITU and in my chosen profession, we had a HDU ward. So, when I became practically bed bound for 6 months, I put my work hat on. I was rather bossy with my best friend who was not medically qualified.
I was devastated to learn of this hideous illness and angry that I had not been taught. But I learnt thick and fast, books were ordered, research reading even though I had double vision. The steely determination to know about B12 deficiency. I know very little about folate though. Hey, can’t be good at everything can I. 🤣
The Guidelines are one thing but a lot of this information has been available for years including from NICE when looking at older papers discussing lab testing and machines.
Even with the updated guidelines which suggests further tests for active B12, homocysteine and MMA my GP dismissed my concerns as those tests weren’t available to him. The NICE guidelines would only work if those tests are made readily available.
The other thing to remember is that this recent publication was a paper for review and not the final article so it could all be shot down.
Indeed. It may not pass through, but, I survived a self treated deficiency on hope and optimism without a single drop of help from the overstretched NHS.
So Im hopeful this will be progress regarding reported symptoms. Someone going to a GP now for depression or anxiety will not be tested with Serum B12. And I imagine there isn't a single GP who'd believe B12 could do that to someone.
Maybe, from what I have been reading, if the NHS started taking this condition seriously then it wouldn’t be quite so stretched. Never mind the potential effects on senior care, benefits, lost work hours, productivity, etc.
Obviously from a government point of view there are swings and roundabouts like for instance healthier older people would potentially collect a pension for longer.
However if you are a government who would like to dismantle the NHS and put more healthcare you might want to overload it in order that it would fail and deliver a vast number of the populace requiring expensive treatments into the the hands of the private insurance and healthcare providers.
But I believe it's a failure of education and training. There is just no knowledge of gut health, is there? If you have a gastrointestinal problem you're usually told there's no much they can do: IBS, Crohn's, gut inflammation etc.
Then there's no understanding of stomach function either.
Plus, everyone keeps harping on about lowering meat intake to reduce cholesterol and suggests red meat is 'probably carcinogenic'. Which is patently no true.
I think we've all lost our way in many ways. Right now, for instance, Im in my flat in the smoke and I cannot breathe: the air is thick with pollution. That is likely putting untold pressure on my gut and liver, along woth processed foods, stress and busy lives.
We can't really go on with any of the systems anymore. Including healthcare. I just hope that someone comes to their senses soon and recognises that all our systems need overhaul.
My GP dismissed my concerns and said that Cancer patients have to wait longer than I did for help...nice.
Whether lowering your red meat consumption will reduce your cholesterol (LDL Cholesterol I assume), will depend on that persons level of red meat consumption and total saturated fat intake. A safe amount would be the equivalent of one hamburger a week. A person eating a lot more than that and with overall saturated fat intake much higher than 10% of calories is likely to see reductions in their LDL cholesterol if they significantly reduce their red meat intake, substituting for healthier sources of protein. If your saturated fat intake is already at around or under 10% of calories, then reducing red meat intake further is not likely to have dramatic effects on LDL cholesterol.
Red Meat is classified as a "probable carcinogen" according to the WHO. The reasoning for this was as follows:
"the classification is based on limited evidence from epidemiological studies showing positive associations between eating red meat and developing colorectal cancer as well as strong mechanistic evidence.
Limited evidence means that a positive association has been observed between exposure to the agent and cancer but that other explanations for the observations (technically termed chance, bias, or confounding) could not be ruled out. "
It is not at all clear to me that this conclusion is "patently untrue". Unlike processed meat, which has a much stronger statement, here they are merely saying its probable. Seems like a cautious and fair statement to me, based on the available evidence.
I think I mentioned before I was on a low meat intake diet for many years. I had dated a vegetarian and went full vege for a year before I felt uncomfortable and then went to pescetarian. I had a year of that before going flexitarian with roughly once or twice a week meat intake i.e. any type of meat. Otherwise fish, cheese, beans, tofu, falafel.
Around 2015 I took a blood test that showed my cholesterol was too low. So, I started eating more animal foods to stay on track.
I did that for climate issues and health issues - I bought into the idea that meat could increase the risk of colon cancer and that was a risk having lost my father to exactly that as a kid. He was 50.
In 2019 following alot of stress, lack of sleep, poor diet choices (fast food) I had agonising stomach pains and gastrointestinal problems.
Doctors sent me for a colonoscopy, they found three polyps. I also found a parotid gland tumor in my salivary gland at the same time.
What I'm saying is, I followed all the advice and STILL got ill with, thank goodness, early signs of colon cancer that were halted.
What I think happened is my gut went out of balance from the lack of meat intake, specifically zinc which is in abundance in red meat. Zinc fortifies the gut and intestinal lining which may have started loosening and 'leaking'.
What I think is going wrong is that we're saying red meat is a problem rather than 'too much' red meat. And so conscientious people like you and I change our diets to do the right thing but it isn't the right thing.
Maybe what is the right thing is better farming practices, fewer toxins in the environment, less plastic packaging, and far fewer additives in our foods like emulsifiers and sweeteners.
Strikes me that we are moving closer to a world that accounts for variations in gut microbia and that may be, for some people, a regular intake of meat to sustain proper health and gut function.
I definitely agree with the need for better farming practices, fewer toxins in the environment and less plastic packaging. However, it's good to be aware that increasing the proportion of grass-fed beef would be a disaster for the environment. I am generally a fan of whole foods so I generally avoid all sweeteners/emulsifiers although I sometimes think they are made to look more villanous in the diet than we currently have evidence for. But in general, I agree on the avoidance of ultra-processed junk.
Going back to your story, I appreciate your sharing it and glad that you are on the path to recovery. However, I am confused about what you said about cholesterol - if your HDL cholesterol was low, this could be caused by a number of factors including smoking, excess weight, a sedentary lifestyle, poor diet, uncontrolled diabetes and even genetic predisposition. There are ways to address this but they dont involve increasing dietary cholesterol - dietary cholesterol is not a necessary nutrient and if your body is working properly, it should make all the cholesterol you need. Increasing the cholesterol in your diet is also most likely going to increase saturated fat so I don't think any reasonably informed advice would suggest this is an ideal path to address the issue.
However you did increase this cholesterol content of your diet and in 2019 after "alot of stress, lack of sleep, poor diet choices (fast food)", the polyps and parotid gland tumor were discovered. I'm not sure I see how your diet previous to this, which contained less animal foods and sounds more healthy, can be linked to the issues you experienced after a period where (1) you increased your consumption of foods high in cholesterol (animal foods) and (2) experienced a high stress period with lack of sleep and poor diet.
Maybe I'm misunderstanding the timeline but it seems to me the gastrointestinal problems and eventual discovery of polyps and parotid tumor followed a period where you increased animal foods in your diet and had a high stress period with lack of sleep where you yourself say your diet was poor. I don't see how this could be described as "followed all the advice". No dietician would recommend increasing dietary cholestorol to raise HDL nor recommend a "poor diet".
Adopting a more plant-based diet is not without its challenges and provisos, one of the obvious ones being B12 supplementation, but Zinc can be an issue too, and I do think its wise to take a moderate dose Zinc supplement (maybe 8-10mg) a day when going fully plant-based. But this is a minor tweak and not really the end of the world, and wouldn't likely be needed on a healthy omnivorous/flexitarian dietary pattern.
Although having a diverse gut microbiota is important, and research on this is still preliminary, to does seem like the bugs that thrive on animal fats and animal protein produce byproduct substances which are not conducive to health, while those that thrive on plant fibre have beneficial effects.
In terms of the nutritional advice, I think that reducing or completely eliminating red meat from one's diet is a fine recommendation for most people, as long as its replaced by a nutritious alternative, and of course has environmental benefits too.
I do think messaging to eliminate red meat should be accompanied by advice to supplement B12 and, if needed, Zinc, but overall I don't think it's a problematic recommendation at all although nutrition advice alone can miss the wider issues of environment concerns and the huge numbers of animals that we treat horribly and kill unnecessarily.
And you were/are correct to make a link between (processed) meat and colorectal cancer. From the same WHO document:
"This category is used when there is sufficient evidence of carcinogenicity in humans. In other words, there is convincing evidence that the agent causes cancer. The evaluation is usually based on epidemiological studies showing the development of cancer in exposed humans.
In the case of processed meat, this classification is based on sufficient evidence from epidemiological studies that eating processed meat causes colorectal cancer. "
Thanks. To confirm, the cholesterol testing was a corporate related freebie. A touring van arrived in the car park for drop in healthchecks including blood tests. They saidy total cholesterol was slightly under range. And at that point it was probably 3 years of my altered diet with lowered meat intake, mainly fish.
Good news, I thought. But perhaps I was taking it too far and could easily eat more fat. I think we underestimate the body's need for healthy fats. Avocados are great but we need variety.
I think my issues are from a combination of: genetic predisposition to a weak gut, excessive pressure on that gut from overwork, stress, and sleep problems--science can now prove that regular sleep disturbances can increase levels of bad bacteria--but also reaching for poor diet choices heavy on carbs and low on nutritious B vitamins mainly found in meat.
Stress is known to deplete B vitamins but also trigger high cortisol and carb addiction. Loads of carbs can also use up Thiamine fast.
Im saying that I believe we are trying to simplify nutrition without considering the interconnections, e.g. B12 is mot just required for bodily functions but also acts as a detoxifier. Its absence may reduce our natural detoxification process along with increasing the risk of leaky gut - something I believe I had and which I believed drove my B12 deficiency.
Right. I'm not even sure the slightly under-range total cholesterol might even have had any clinical significance - would be better to see both HDL and LDL at the very least. I would have had that checked at a real clinic but water under the bridge at this point I guess.
I'm not a fan of super low-fat diets, in general. I pay a lot of attention to various good fat sources , ALA from broken/ground flax seeds, and EPA/DHA from algae etc. I am a fan of healthy mono and polyunsaturated fats. In fact I had an avocado just today for lunch 😆 We even need some saturated fat. But its about moderation. And portion control for those with weight issues as fat is 9 calories per gram while carbs and protein are 4 calories per gram.
Poor diet choices are not necesarily "heavy on carbs", its about the TYPE of carbs - the carbs in healthy wholegrains, legumes, nuts and seeds, fruits and veg have many health benefits. It's the refined carbs, ultra-processed food and saturated fat you should worry about.
Clueless youtube nutrition influencers with zero nutrition training love to talk about how (all) carbs are the devil and (all) meat and (all) fat is good. This shows only their limited grasp of the actual nutritional science and inability to understand nuance. Please avoid falling into the trap of their ignorance.
But yes, limited variety and poor diet quality can definetely limit your B vitamin intake, but this is not a concern when eating a more varied whole foods based diet and I can attest to that via cronometer measurements. There always nutritional yeast, or an RDA B-Complex for an extra B vitamin topup if needed
I love that the guide lines are changing. I also think the link between contraceptives and b12 deficiency is very interesting.
I think it's bizarre how in most cases its us educating the professionals. My midwife told me not to overdose on b12.. I told her its water soluble..her face still blank, then explained I'd pass any excess b12 through my bladder. She did not like me telling her something she didn't know and scoffed at me! Ridiculous!
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