Anyone read this or similar before now
Alzheimer's : Anyone read this or... - Pernicious Anaemi...
Alzheimer's
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OldmanD
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Thanks OldmanD,
Good to read,
Furthermore, the fat-soluble vitamins vitamin A, D, E and K possess anti-oxidative actions and have an impact on AD (Alzheimer’s Disease).
I find it odd that once ye are diagnosed with Dementia/Alz the medics start to give you B12 jabs every 3 months. . . . . . I think ye'd be better with the jobs before that point. . . . . As we get older and I dont mean old many of us are not absorbing all the nutrients we need and this malabsorption thing is the biggest trick of all cause it is so slow and insidious. . . .It creeps in and we dont know it .. . . . . Then everything is put down to aging
My thoughts exactly. Too many older people aren't getting the support they need - the older you get the more 'invisible' you become. Relatives of mine go to their GP with various health problems and get told that its part of getting old and nothing can be done to help them. If they were in their 30's with the same symptoms the GP's would investigate more.
In fact I wonder how many older people wouldn't need to see their GPs so often if they supplemented their diet with B12, Vit D etc and ate better - most old people I know have meals with very little nutritional value. One of my relative has a Birds Eye pie, tinned potaoes and peas every day. And loads of cakes and biscuits.
It costs too much to send a nurse out to give them a jab every few weeks . . . . . . 3 months is no use to mature folks . . . . . . All the research shows that many even in their 40s are already deficient in many minerals and vitamins even eating a good diet. . . .I dont remember the stats but it was surprising how many were already not absorbing. . . . . .We live long and take meds such as PPI's many of which restrict absorption . . . . . . You have a very long storage amount within and as your absorption diminishes which is normally slow it takes years to become very deficient. . . . . And I dont think we ever get our stores back. . . . . . My Dad got B12 jabs every month for years and along comes a new boss and it went to 3 months and Dad was not pleased. . . . . . A year on and and he was discontinued. . . .. He was diagnosed with Dementia 12 years later and given a script for B12 ampoules and a nurse appeared out every 3 months. . . .. Actually those ampoule lived in the fridge where the nurse put them. . . . . .
And not everyone has those stores anyway, or can use them if they have them. Same mechanism for absorption, so not useable. Useful report but most of it already known I thought. I wish homocysteine or B12 were being measured in those with dementias, but I know they are not. No distinction between types of folate used either, which matters to some of us - from personal experience. And no mention of the vast number of people with conditions which will result in low B12 - any autoimmunity, potentially. Cheers
I assumed that the stores in the liver were usable. . . . . . Yes no. . .. I have autoimmune problems and my Dad plus two of his uncles suffered. . . . . .
No, not always. Stores can last a lot longer than 2 to 5, even up to 15 years some vegetarians have found. But a healthy person would take B12 from liver, pump to small intestine via bile duct, convert to active form using intrinsic factor and recycle/reabsorb. If you don't have the intrinsic factor (as in PA, but also potentially anything that affects parietal cell function, like age....) then you can't get B12 from food but can't use this enterohepatic recycling either, so stores drop fast and aren't replaced b12d.org/faqs have a look at 'why don't vegetarians get B12 deficiency straight away?' Qu 7 down. Those with AIs often have parietal cell damage or anti- (gastric) parietal cell antibodies, so B12 will suffer eventually, as will stomach acidity being insufficient for problematic absorption, like iron and calcium as well as the B12.
Thanks you bookish. . . . . . . I understand that. . . . . . . Believe it or not my route was taken from a medics explanation. .. . . . Seems even those that should know dont have a clue. . . . . .
i am enjoying this. . . . . So how do my thoughts then stand up of my situation in my 40s crashing exhausted , not being diagnosed at all and eventually using way more than usual supplements and animal products mainly roast beef making a kind of recovery for a few years before crashing the same manner again which eventually led to my proper diagnosis of B12 deficiency. . . . . Note I dont expect you read all my ramblings but I did not know about PA or B12d until I was diagnosed during covid. .. . .The supplementing with anything and everything in my 40s was purely on a try it and see basis until something worked and I still had no idea what had been wrong even as I returned to working. . . . . I just continued what seemed to work. . . . . I did not realise my Dads little monthly injections were a hereditary thing or that they were B12 until my wife pointed it out the morning I got my first loading jab. . . . . I had go back and inform my GP that I had not told her my Dad got jabs because i didnt realise. . . . . Any thoughts. . . . . .
I'm afraid that is fairly close to my situation, to my shame. I didn't really know what PA was or that taking B12 orally might not be enough, until after I was crashed, exhausted and with neuropathy preventing me from working, by age 35 (after 15 years of moderate to extreme stress) - but my grandmother had the injections, and my mum had said a couple of times in my numerous childhood appointments that grandma had PA and had been roundly dismissed for any connection. Later she just used to encourage me to take B vitamins so sometimes I did and sometimes I didn't. Dad (it was his mother) had signs by age 40ish but still no diagnosis (aged 84) - taking B12 and other Bs for years, now high dose oral when we can get him to remember.....I was misdiagnosed, not sure they even looked at the B12 then but if they had, of course I was supplementing so it would have looked fine and they knew even less then than now. I didn't tell them the history, because I had no idea that B12D was so strongly genetic and so hard to spot for some of us and thought that supplements meant I'd be ok. 15 years of B12 and folate depleting meds followed and I got worse, of course. Came off the meds (slowly, my choice), and started reading a lot, even more so when I got a surprising benefit to going gluten free and then dairy free (and then grain free), also from adding magnesium. Found out that not only my grandmother but her mother and an uncle and their mother also had PA, making 6 generations with either PA or a B12D of unknown origin (as yet).
Covid (as with other viruses) can affect one carbon metabolism, so messes with your B12, folate, B6 (B2?). A lot more people that were perhaps teetering on deficient have been picked up since. I craved meat when I got it (unusual for me, as I can't digest the stuff) even though I was taking my supplements still, so I put them up. Still ended up with more symptoms again though. Interesting that you also knew you needed meat. Bodies aren't stupid, just most stopped listening. Depending what you were taking, you may have calmed your immune system enough to give your parietal cells and intrinsic factor a reprieve. IVIg treatments can raise B12 alone through this route, although it may not be a long-term thing.
Cheers
Wow oh wow. .. . .. MY dad had it that we can be certain of. . . . . . His Uncle Dr Billy insisted his siblings ate lightly cooked liver and maintained that had James and another brother cant remember which one not have went to Canada and the US they have lived much longer. . . . . I visited James resting in a Mausoleum Sarnia Ontario . . . . . His sister took care of the procedings. . . . . He died at 43 of a "blood disorder". .. . I have one photo and he looked 70. . . . . . . The ther brother died around 46 years. . . . . Dr Billy was probably correct as he was quite an advanced thinker by all accounts and they did know about the problem but not how to fix it properly. . . . . The childhood thing I cannot believe to read too. . . . . . As to covid I've had test after test due to having to see the GP with my endless bad chest problems and as best I know I have never had it. . . . . My sons woman who is on eth face of everyone often in emergencies without any PPE as a anesthetist alswo has never had it so it seems some never take it but I have seen people really badly effected by it . . . . . . Mind though since the advent of covid I have had increased chest problems . . . . . . I am on antibiotics just now but this time I went looking for them when my Lymph's started to be sore which to me is a precursor to the chest problem. . . . . . Pulmonary clinic was puzzled by why I had so many chest infections and headed down the route of Sinus problems and post nasal drip. . . . Now the yesterday my chest was getting bad but ths morning its on the up I hope but I am vert tired and took plenty of B12 and 6. . . This would have been the free day but when not well I think the B's help. . . Have you any knowledge of those problems with B12 deficiency. . . . . . . And I am so glad to read that my many problems many of which are most likely B12 related since a younger age I can now talk about as I been shot down so many times. . . . . I had a good run from around my late teens until about 35ish and I began to slow but there were childhood problem galore and then the anaphylaxis . . . . . . Thank you so much for taking the time to write all that . . . . .. . This feels like the day I got the first B12 shot and came out and told my wife. . . . . . I felt vindicated after so many years. . . . Thank you. . . . This is a good morning even I am sitting with a nebuliser on
Adding a bit. . . . . . I craved roast beef and bought it near every day on way to work in the better years but have not craved it since and actually could not care less I never seen meat now. . . .. .I dont know about B2 but I have B1, 6, and 12 to hand. . . . . . I use B6 along with B12 every time and a little B1 if the symptoms appear or I am not well. . . . . .
Dr Billy knew what he was doing! The older relations ate raw or lightly cooked liver as that was the treatment then, then progressed to injected liver, then B12. Sadly as with other viruses you don't have to get it badly and some indicate that the vaccine (s) could do the same. Still stress on the immune system requiring a response which will drain nutrients - vit C, D, E, zinc, magnesium (badly) B12, folate.....I use NAC which helps chest (used in cystic fibrosis) and is a glutathione precursor (master antioxidant). Illness of any kind needs more nutrients, so you do right to increase doses. I don't increase folate by much and keep that at sensible levels. A lot of folic can be bad news if unmetabolised. How are your C, D, zinc etc if you keep getting infections? Are you dairy free by any chance, commonly affects passages in children and adults so hearing, breathing etc. I could never breathe through my nose and spent years on winter antibiotics - it was dairy all along.
Havnt heard about NAC. . . . . I remember the near raw liver all to well. . . . . . Ye do get used to it. . . . . . I am prescribed 5mg B9 and take it on odd days to match the 9. . . . . I have mag, Vit C, D3K2 etc and fish oil in generous amounts. . . . . I use the D3 twice a day for many years decades although I did go down to once per day for a little while. . . . . Plate in the morning looks like a load of smarties. . . . . .I use as many ampoule of B6 as I do B12 otherwise I'd be covered in those little painful spots that bleed profusely . . . . .About 600ug of B12 and I dont remember the B6 but about half ampoule???. . . . . . The combination of B12 and b6 has stopped the split nails I've had for decades. . . . . It was probably a year after SI that I tried the B6 and ran with it on and off every couple months to see what it done. . . . . . I am sticking with it. . . . . Good job . . . . . .B12 allowed my right thumb nail to grow out normal over about 6 months. . . . I had used epoxy continues for many years to stop the nail bleeding. . . Painful too. . . . .The advent of mitre glue made it a whole lot easier than mixing traditional epoxy. . . . . . Big toe nail then started to mend with the B6 as did the lips that were forever bleeding. . . . . Lips have been fine now for some time. .. . . . Scalp is another . . . . .. Those things were wrong half my life. . . . . . In cold weather the lips and scalp were unbelievable. . . . . . When I was born my mother couldnt feed me so it was formula or nothing . . . . . Spend every day with my knees up around my chest crying and everyone was roped in to carry me around. .. . . They were glad to see me on potatoes but with no butter. . . . . . . As an adult I had to learn to avoid dairy and as I got older the problem became ever more severe until now I think I dare not go near it. . . . . . . Grains dont seem to be a problem though. . . . .. It is hard to avoid cause so many things are tastey. . . . . . I could not drink milk if you paid me though. . . . . If I consume dairy my chest becomes so sticky I can barely get it up. . . . . Then there is the digestion?????. . . . . Straight through some of it. . . . . . awful nuisance. . . . .. But I can be clear chested for several weeks, used to be many weeks . . . . . Every time there is this precurser of sore glands in my neck and throat . . . . . . . MAybe for 5 to 7 days and then I get chesty. . . . .. It then only takes about 3 days to be pretty bad. . . . . . The GP clinic even squeezes me in as I become quite unwell quite quickly. . . . . Again I welcome thoughts and thank you for running anything past me
Will these do the job
amazon.de/Vita2You-NAC-800-...
Yes, the NAC look ok as far as I can tell. I only take half but mine are tablets so I can split them. Powder can cause damage to tooth enamel so I wouldn't split a capsule.
I use the P5P form of B6 to try to avoid risk of additional neuropathy - pyridoxine can block the active form.
B9, that is a high dose for a long period - but I think 5mg is all that can be prescribed. I used no more than 1mg, now generally about 500 mcg daily split into 3 doses (suits me better) but I use methyltetrahydrofolate (5-MTHF) not folic. For me, this made a significant difference, but my genetic SNPs are folate-related so that is likely why it isn't just the B12 type but the folate type which matters.
With the D3 being fat soluble you can get too high - if you were taking a large dose for some time it might be worth asking for a check and adjusting to suit.
Brilliant that you have come so far and are making progress. Hope the NAC helps.
I have looked at the B9 dose several times. . . . . . . yes 5mg seems to be all they prescribe. . . . . . I have a splitter and could easily do 1/2 a tab every 2nd day. . . . . . I have cut it to every other day and see no difference . . . . . . I have no symptoms of D3 excess but can easily go back to once per day. . . . . . . Really I dont seem prone to getting OD from anything. . . . . . There must be some bits of me work good haha . . . Its very hard getting reliable information or anyone who has read proper info. . . . . Thanks again D
See how you go with the half folic - unless you've only been on them for a short time and were very deficient you shouldn't need more than an approx 400mcg maintenance dose. I know this is about neural tube defects etc but it explains the possibility of too high folic for some bmj.com/content/377/bmj-202... . I'm only heterozygous for MTHFR ( with a more significant folate-related SNP as well) but a low dose of folic in a multivit was enough for my serum folate to test near top of range and drop to mid range when I went to a higher dose of folate instead of folic.
I think its heading for 4 years shortly, certainly over 3 anyhow. . . . . .I'll take your word for it . .. .. .. Aside from that you make mention of Neural tube problems . . . . . I have seen several quote that while B9 reduced the Tube problem it far from eliminated the problem and if B12 was also given the problem would be near to eliminated. . . . . .
Agreed. The fact that I have a NTD, fortunately for me only the very mild common form which most people don't even know they have, found when I wrecked my back at 17, was a big clue for my folate problems and those of my mum.
Ye could have clues coming at them the size of navvy shovels on their ass's and they'd not care . . . . . Like many on here since I was diagnosed with B12D I have learned many things. . . . . . I am 2 days away from finishing my doxycyline which I got before my chest got bad on the basis my Lympth's were swelling/sore and I have done the whole day without much of a problem. . .. Lympth's are near settled and chest never really got going. . . . . . . Tired a little maybe but tired anyhow . . . . . I know antibiotics for potential sinus problems is not generally used but here they'll give anything a go as I have had so many infections . . . . . . All I got in NHS land was former smoker, former mechanic so ye have copd. . . . . . Self inflicted what do you expect. . . . .. That was the diagnosis done . . . . . . No one listened to me telling them I did not generally suffer from depression but by the time I fought with them I think I was depressed. . . . No one would listen about these glands and this has been pretty bad now since 2009 I think or thereabouts . . . . . . In Pulmonary Castlebar they put me through the Lab tests twice because my lung capacity was better than they expected and the bottom of my lungs were not flattened so they have went down a different route. . . . . No odds what I tell them here they take in on board kinda . . . . .
I'm glad it looks like you are shifting it this time without it getting your chest too badly. And you are spot on, I meant clues for me - Mum had already died and no-one had any idea what to do with me......thousands of hours of research later and here I am (still learning!)
One of the first things my wife and I done was to watch the Sally P movie. . . . . . It really helped my wife understand and she took to scolding about the NHS years. . . . . I am of the opinion that had I been listened to and the fact my dad got his jabs every month in the 1980s and 90s should have been obvious to them. . . . I would have went to work all my life . . . . I loved working, . . . . I loved my job . .. . . I had moved into engineering and liked what I was doing but simply ran out of energy. . . . . I have appointment for one of the GP;s 20th I think to discuss where we go from here kinda thing. . . . . . She can refer me to ENT if she wants and we think it appropriate. . . . . . . I am sure before any hospital app there will be another episode or more and if we can stop the chest thing from happening I think they then need to look elsewhere. . . . . . . I do have a nasal drip problem and I am well aware of that but as to that being the defining cause I dont know . . . . . I am suspicious of it though. . . . . There is something starts the chest problem. . . . . . I have stayed in one room seeing almost no one and still get another infection several times. . . . . . Wore masks all through covid. . . . . . Never got covid as best I know but the chest kept repeating. . . .. . Anyhow time for a rest . .. . . .
I thought of that film as soon as you told us your history, but I thought you would have seen it already. I keep asking people to watch it but even family don't really want to know how hard this can be and what is stacked against diagnosis. Rest well and my best to you and your wife.
We moved 4 hrs away from our previous where we were reared and ye could count on one hand the visitors outside of our own children who have visited over 6 years and even two out of 3 of them live here now. . . . . . So not bit wonder no one wants to know anything. . . . . I dont think they care . . . . . . They seemed to care when they were in trouble and needed something fixed .. . . . . . . .
All we can do is keep trying, and get ourselves well. More colleagues listen to me since I started to look less ill, as they know I've had to do it for myself and are curious. Even one person finding out a little that helps them makes me feel better, and that 'drip, drip' will become a stream......
Thanks for this discussion. I was diagnosed in my 40s by an haematologist that understood the difficulties of diagnosis, but went on the 3 close relatives I had with PA. But a year of monthly jabs my surgery said I was ok now, and stopped them .
I still had a few symptoms , but it took a long time for me to pluck up courage and go back to Drs. I saw a different gp, who followed newer guidelines and I had the 6 loading doses then mthly. I joined PA Soc understood far more about it , got brave and told my gp I was going to self inject if they couldn't give me more jabs! H is reply was we cant afford the nurses time, so we will teach you how to do it .
I am going to send him this article. It might give him more criteria to help, especially the older folk.
Hi, your GP may have already seen this in the BMJ, but it also might be useful bmj.com/content/383/bmj-202...
I'm so glad you went back and are self-injecting. Best wishes
Hi Bookish
Thank you very much for your response above.
I SI B12 injections twice a month and recently noticed that my haemoglobin levels had been dropping over several years. I was almost anaemic although Ferritin stayed with in range. I was diagnosed with parietal cell antibodies a number of years ago and have been on PPIs on/off for over 3 decades. I didn't realise the absorption connection between iron, calcium and B12. I also have osteopenia.
Thanks again for the info - most helpful.
Regards
Moggy
Glad if it was of some help! Parietal cells aren't diagnostic for pernicious anaemia as they can appear with other autoimmunes, but if you have them then you are likley to develop B12 problems. Some get intrinsic factor antibodies - either at the same time or commonly later - but they are transient because once the parietal cells have been badly affected you will no longer produce intrinsic factor and there will become no antibodies to measure. (So a positive is diagnostic for PA and shouldn't be repeated). PPIs are a problem.....and osteo issues common with absorption problems as need B12 as well as calcium, magnesium and vit D & K. Might be worth double checking your vit D and magnesium, as should be reversible (even an 84 year old family member has reverted from osteoporosis to osteopenia after we checked - really to make sure that the D that she had been prescribed for many years with no checks hadn't gone too high - it was barely enough, so we supplemented.
Where do you get al the knowledge. . . . . . . . . . I wish I could store the detail you do. . . ..
I forget all sorts and don't recall anything like as much as I'd like to (especially when I need to - names for people or things if under even the slight stress of wanting to use them 'now'! ) I used to have really bad brain fog and was putting the sugar in the fridge and just clean forgetting to do things or finish things and it was all a bit unnerving, esp with Mum having died with dementia and Dad's memory being terrible due to the B12 and not getting treatment - and anxiety was horrendous and all the rest of it. It has been a gradual process with so many layers changed over several years to get back to this point ( worst Mar 2017- Mar 2019, small improvements for some things then a big jump forwards mid 2019, uphill gently until covid in 2022). But I have read and re-read and re-read until some of it has stayed and now I can read and understand far better than I could then. Datis Kharrazian's book 'Why Isn't My Brain Working?' is really interesting (and huge!) although no doubt that will also get negative comments from some quarters as he usually does. I had his thyroid book first, also very helpful for me. As you continue to make improvements your memory and recall will go along with them.
PS, I also have a large store of saved papers, so I can refresh my memory....but this one only came my way today, and as it refers to NAC, I thought you might like to see it too. Glutathione may be needed within cells to facilitate B12 useage so B12 may even look high, but functionally deficient forums.phoenixrising.me/thr...
But a good reason to take it slow with the NAC - so try one, give it a week, try two etc as per first responder's pattern, perhaps?
Thanks again for your informative reply - very helpful. The last time my Vit D was checked in '22 it was 79 (range 50-120). I have been taking 1000 iu for many years. Although my level of 79 wasn't low I have recently started taking an additional 400 iu as I had breast cancer in '21 and read that Vit D can play a part in BC. I did take Calcium and Vit K for a while but the next blood test showed my calcium had dropped although possibly the reason for this could be due to the Vit K? As regards checking my levels I would need to do that privately as my GP is reluctant to arrange blood tests as it costs the NHS!!! Thanks again I didn't realise Vit D played a part with Calcium. Oh! so much to learn!!!
The magnesium is probably the most important of those, although most are low anyway and can supplement without too much concern - just take it slow and start low and only ever change one thing at a time (sorry, I'm sure you know that). Micki Rose's osteoporosis page may be interesting to you. Links may be out of date but lots of useful info on the site. purehealthclinic.co.uk/heal... Years ago she told me never to assume that anything below 125 nmol/l (= 50ng/ml - units can be confusing so always check which are being quoted) was ok, so I aim for that. Absorption varies hugely from one person to another and from one form of supplement to another. Like you I took 1000iu tablets for years but never got to more than 80 nmol, so now take a liquid form and vary between about 110 and 130 nmol. Better You offer a home blood spot test which is an NHS lab and then will send a supplement to you appropriate to your test, if needed. The K2 steers the increased calcium that the D helps you absorb into bones and teeth rather than soft tissues like kidneys where it can be a problem. Best wishes
Bookish, apologies for not getting back to you until now. Thank you so much for the information you have sent above and previously and the link to the purehealth web site. It is a very interesting site and I am making my way through the info and links to other things. Absorption as you rightly say varies so much in all of us and that is certainly a problem for me. I prefer liquid forms of products especially if they have fewer additives than tablet forms. It's finding the ones that suit me and that fill all my needs. All the best. Kind regards Moggy
Please, no need to apologise! If you struggle with additives, you might like to look at the Master List in the truly gluten free section of Micki's site. All of my supplements are TGF and from the selection on the list. Like you, I started with as much as possible via the skin due to absorption problems. I still use a liquid vit A, D, E and magnesium oil plus liquid B6, B9, B12, multi mineral and zinc. Best wishes to you too.
Stores of vitamin B12 in the body can last around 2 to 5 years without being replenished, so it can take a long time for any problems to develop
I think we should always re share such because whilst you or I who have been here for years are aware there are newcomers who dont read old posts and the more we are made aware the better. . . . . .
I agree, I didn't mean to imply otherwise! I just meant that most of the information ought already to be known - Holford and Food for the Brain have been saying this for some time eg foodforthebrain.org/the-fou...
The NHS doesn’t acknowledge homocysteine in most cases. The test is available but most doctors are ignorant of it. As my gp said to me ‘I could order the test, but I wouldn’t know how to interpret the results’.
We’ve been told for years the nhs is the best health service in the world. Gaslighting on a national scale.
Sad isn't it. A retired nurse colleague said she'd only ever known it tested 4 times during her working life, and she knows how important a marker it can be. The NHS have tested it for me, just won't give me the actual result!
well that might open a Pandora’s box that they’d prefer remain firmly shut.
Gas lighting yes . . . . . My first big crash n my 40s I was told there is nothing wrong with you repeatedly and once that I was bluffing. . . . . The NHS is awful and worst of all in NI where I was in those years but I am now in Ireland which is like our old NHS in the 70s or maybe better. . . . . .
You could ask him to test it then show him how! 7 and under should be ok, 10 or more needs treating (B12, B9 (folate may be better than folic, depends, B6, omega 3, magnesium....), but doesn't always show high even in deficiency.
Yes I suppose I could but to be honest I can’t bring myself to explain things that an experienced doctor should already know. I’ve been dismissed far too many times and now just keep things as simple as possible.
I had homocysteine, mma & active b12 done privately. Was told at the surgery that there was no such thing as active b12!
Can't say I blame you. Did they show high?
All ok /normal, but homocysteine 11. I should have it retested after 3 years of injections. They were done previously through Blue Horizon at the Nuffield.
Yes, it is a bit high. Do you take folate, B6 (B2) omega 3 as well?
I had taken a methylated b complex with 20 mg of all b vitamins - and 400 mcg of b12/ folate. I stopped for a while when a serum b12 test came back at 5000+ (with injections) thinking that the b complex might raise levels even more.
My Gp made such a fuss about it. I suppose I should ask for b12, folate and d3 to be removed from the next test request- especially as they refused to offer treatment.
Yes, they don't like high B12 do they. Will be interesting to see what level hcy at when retested. Best wishes
Thanks. Just need to pick a testing lab.
Here where I am Homocysteine and MMA etc are regularly tested but the samples for this are all taken on a tuesday morning and go in a little refrigerated van. . . . . I know not why. . . . . There are obviously other tests on the blood but I dont remember any of the rest. . . . . Those two stick out as they were elevated in may case and I didnt have my blood done the day I was with the GP but had to come the following tuesday.. . . . . Mind it was middle of covid also
Interesting that they are testing both in Ireland and good to hear. Hcy does need fast processing and chilling etc although Food for the Brain have just reintroduced an at home fingerprick version which they say is accurate (having been redeveloped since it was pulled several years ago). Do you know what they were in your case? Hopefully by now with your treatment and self treatment thay are both at optimal levels but you could ask for them to be retested to be certain - some take a lot of time to reduce and it may show a functional deficiency still.
They tested a load of things the second I said I was exhausted beyond believe and answered a load of questions half of which I dont remember but once I knew what was wrong with me at the time the questions about y background and family weere spot on. . . . I havnt considered having it all done again although I do go see a nurse every 6 months for a check inc egc etc who takes blood but I dont ask for what. . . . . I always get told my B12 is well up??? so I presume they keeping eye on me. . . . The system is much more prevention here whereas in NI it was firefight all the way .. . . I dont ask too many questions. . . . . Blood test is one thing that is not free here for whatever reason . . . . . Gov says it should be and the health centers tell them to pay for it and it'll be free but the argument goes on . . . . . . 35 euro last time I had it done .. . . . The tests done at the 6 month check are free though. . . . . .
You might find this interesting. From a US haematologist who says that age 51 is the cut-off for good absorption by which point most of our B12 needs to be from fortified food or supplementation - see 'Prevention and treatment of B12 deficiency' section ashpublications.org/blood/a...
Thanks for posting this. Took me a long time to read and digest. One of the best articles I have read. Should be mandatory for all doctors to read. If only to show them the complexity of the matter.
I totally agree with you. I emailed my doctor, the NICE report that advised just that. She told me it had no relevance! I wanted to ask if she understood it! After a little more chat (I did keep my temper) I found out that she had no idea my A. Fib (bad palpitations) had any relationship to B12. After pointing out that she could not have read the NHS website pages that I gave her, a couple of years ago. Which clearly points it out or the pages with Swedish doctor that agreed and added that Vit D deficiency go hand in hand with B12, which I have also. I also have 10 other symptoms, including neuropathy. I take 26 tablets a day to keep the symptoms at bay, as best it can. This grows every month or so and makes my stomach swell. I paid for 3 injections and they were wonderful, I could run up the stairs, needed no tablets, no palpertation, swelling of the stomach disappeared and burning hands and feet disappeared. The nurse was told that she might loose her licence if she continued, so that ended. I think that it is the head of the practice that won't agree with injections. So I am not talking to the organ grinder but the monkey! I have now referred my problem to the NHS complaints Dept.
Enough is enough!
Hi OldmanD,Yes, I've read up on this B12 and brain atrophy/Alzheimers connection. Pretty much prolonged and untreated B12 Def can cause brain atrophy and as with peripheral neuropathy if untreated long enough will cause symptoms that mimic Alzheimer's. However it is not the same as Alzheimer's and it's only progressive if left untreated. Much like peripheral nerve damage B12 treatment can repair these nerves if caught early enough.
I know about this a little as I have this permanent damage. I went from severe untreated B12 Def, being bedridden, with total right side numbness of my body to now being mostly recovered after four years. BUT I still have, possibly permanent brain damage or what they might diagnose as cognitive dysfunction. It is a subtle thing and from the outside nobody can tell. Except me, of course, mainly I can no longer do simple math in my head. Simple times table stuff, I have trouble with algebraic equations, and some short term memory. Being an engineer it has destroyed my ability to do that work. BUT at least I can still spell and type!!! 🤣
Best wishes, Rexz
Fortunately I think I dont have too much life long damage and I can kinda count. . . . . Used to be brilliant at maths but kinda, is now the definition. . . . . . I had problems with cursive as a child that got me many hammerings I didnt need and was never really able to either read or write cursive and remain so. . . . . My children were bewildered as I helped them with everything except this joined up writing as they called it. . . . . . How come ye cant do this Dad they;d ask .. . . Today my spelling is worse than is once was despite using the computer . . . . . I keep looking up to the screen and everything is wrong many/most words all the letters present but badly mixed up and I have to go back and correct . . . . . I try to correct rather than use spell check as I think it;ll get worse if I use that service . . . . . . There are some words that are awful like "necessary". . . . . . . I simply cant get some end of . . . . My Dad also a suffering but passed away could not read music but got all his Piano certs as a child by slowly learning every tune in the book. . . . . . He went on to be a well known banjo player in the traditional scene here . . Actually appeared on RTE in the 80s. . . . .
I haven't read the article yet, but contacted the Alzheimers Society more than a year ago about the possible connection with B12.
The whole concept was rejected and further correspondence on the matter was refused.
Yes new drugs for dementia/ Alzheimer’s are in the pipeline.
Yes but it would be better to not have it in the first place
Agree, the alternative route is more effective (or at least as effective) without the risk of significant side effects, but doesn't make money
Oh yes of course it would - I just meant that the Alzheimer’s society are probably not open to the idea that some cases are due to b12 deficiency and don’t want to discuss it because eye wateringly expensive drugs are surely better than a simple vitamin!
Exactly, well put.
It would be. Try Food for the Brain or drmalcolmkendrick.org/2013/...
Mum had Alzheimer's diagnosis and we didn't know better. Now know her folate was abysmal and her B12 too low, blood sugar control poor, thyroid failing. No-one did anything at all. Too late.
Malcolm Kendrick claims on his blog:
"A further important reason for the deafening silence in this area is because pharmaceutical companies cannot make money out of vitamins. Vitamins cannot be patented; therefore any profit margin is far too puny to be of interest to them. "
A bold claim. It would would make for a convenient narrative for his story if it were true. But is it? Lets investigate.
Lets take a broad look initially at the size and profitability of the current dietary supplement industry:
"The dietary supplement industry can be highly profitable, worth around $149.50 billion in 2021 and estimated to reach approximately $241 billion by 2028"
"many dietary supplements are relatively inexpensive to produce, meaning that manufacturers can enjoy high-profit margins on their products."
from: katanamrp.com/blog/manufact...
Now here's an older case study of a small vitamin company in 1987:
"Two of Southern California’s major private-label vitamin makers have agreed to merge to form a $100-million-a-year vitamin and nutritional supplements company with nationwide distribution.
In a deal expected to be completed later this month, P. Leiner Nutritional Products in Torrance will buy Vita-Fresh Vitamin Co. of Garden Grove from the firm’s privately owned parent, Vital Industries."
"P. Leiner’s manufacturing and distribution outlet in Torrance employs 500. The company, which reported $65 million in sales and a $3.5-million net profit for 1987"
from katanamrp.com/blog/manufact...
$3.5 million dollars might sound like chump change profits to todays multinationals but for a 500 person company in 1987, that sounds like pretty decent earnings.
But lets pivot to the modern day manufacturer of vitamins, China being one of the biggest players.
"China started production of vitamins in the 1950s, and grew steadily to become the largest producer and exporter of vitamins worldwide by the early 21st century. With some Chinese companies owning global vitamin market shares of 50% or more, the development of China’s industry plays a key role in the worldwide market.
China mainly exports low-priced vitamins such as vitamin active pharmaceutical ingredients (API). Most of the products are exported to the USA, Malaysia, Germany, Japan, the Netherlands, and Vietnam for further processing"
"Market intelligence firm CCM revealed a list of China’s top 500 enterprises in December 2017. In this list were 33 pharmaceutical enterprises, with two vitamin manufacturers among them. The two most successful vitamin enterprises are CSPC Pharmaceutical and Zhejiang NHU."
from : chemicalsknowledgehub.com/a...
So lets take a look at the balance sheet of this huge company, Zhejiang NHU. Here is their 2020 annual report:
cnhu.com/nhu/upload/2022/04...
Some relevant introductory info:
"Vitamin, the main business of NHU, has a high market share, a prominent industrial position and an obvious brand advantage over others, making NHU in a leading stage in China and also a well-known position worldwide. The main products include Vitamin E, Vitamin A, Vitamin C, DL-Methionine, Vitamin D3, D-Biotin, Coenzyme Q10, Carotenoids, etc"
Lets take a look at their financials:
Looking at the table in "3. Selected Financial Data, (1) Key accounting data and financial ratios for the past three years " we see under the 2020 column:
Operating Income : 10,314,084,354.21.
Obviously this is in the chinese currency, Yuan, so converted to GBP we get an Operating Income (*gulp*) of : £1,146,693,547.80
Thats roughly 1 billion, 146 million british pounds. I'd say they're turning over quite a bit of business.
OK but hows profit? Aren't vitamin margins super-thin according to our tremendously knowledgeable vitamin financials expert, Malcolm Kendrick?
Looking at the tables we see:
2020 : Profit Attributable to shareholders : 3,563,759,939.48 Yuan or £396,209,725.3 GBP
So their 2020 Profits were over 396 million. OK but maybe the rest of the company sales are subsidizing their ailing vitamin business which, if we are to believe Kendrick, has razor thin margins?
Lets see.
The two products contributing substantial amounts of their revenue are "Nutritional Products" and "Aroma Chemicals". The gross profit margin on aroma chemicals was 55.47% while the gross profit margin on nutritional products was 57.78%.
Well, I'm not a financial expert but a 57.78% gross profit margin sounds pretty decent to me.
The 2020 profit from nutritional products alone was 4,132,789,171.83 Yuan or £459,472,941.60 GBP
Kendrick claims that pharmaceutical companies cannot make money out of vitamins and that the "profit margin is too puny to be of interest to them".
Well, I find it hard to believe that a nearly 60% gross profit margin and £459 million GBP is "too puny to be of interest to them".
So moving down the supply chain, how does retail look? There is an informative blog on this:
"One profitability measure in retail is the gross margin, which, for the dietary supplement industry, is typically around 30-50%. This means if you sell a supplement product for $50, after accounting for the cost of goods sold (COGS), which includes manufacturing, packaging, and shipping, your gross profit could be between $15 to $25."
supliful.com/blog/are-suppl...
Again, very reasonable and profitable margins here too.
I don't know where Malcolm Kendrick is getting this idea that there is no money to be made from manufacturing or selling vitamins because after even a little research you can see it is clearly a VERY profitable business indeed, EVEN without patent royalties.
Perhaps it just better suits his particular narrative about big pharma trying to keep us all sick because its not profitable to sell us the things that would make us well enough that we wouldn't need them.
There's just one problem. The facts don't line up with the story.
But that's never been a hindrance to any good conspiracy theory.
I'm sure the good ship Malcolm will sail merrily on despite any headwinds of pesky contradictory facts that might stand in the way.
They've never stopped him before.
I am not sure what that is all about, . . . . . I dont think you grasp how the pharma research and marketing works. . . . . You cannot simply appear with a product and say it prevents dementia. . . . . . . . The High St vitamin market has nothing in common with this and the size of their profits have nothing to do with this. . . . . . . For B12 to be prescribed for use in the prevention of dementia would cost millions of not billions. . . Oral B12 is a food supplement and in many places injectable is not much different. . . . ..That is why few GP's prescribe injectable B12 beyond PA use. . . .It is not really approved beyond PA use and extensive research has not been conducted beyond that.. . . . .Once research concluded that PA could be treated by administrating cobalamin and then cyanocobalamin arrived the research was over .. . . . . No one one supposed anything about B12D or neuro problems and any licencing rights have long expired on Cobalamins. . . . . .Hydroxocobalamin then happened and we were all told about how much better it was so much so much of europe adopted it . . . . . . . Drug companies will not invest in research into the use of a simple vitamin to prevent something like dementia because they cannot patent it and cannot protect it. . . . . . Indeed prevention is not high on their list of anything. . . . . To prove that B12 might prevent Dementia or any disease no odds how serious as if dementia is not serious enough would take years and cost a fortune. . . . . . Without that research and many 1000s of double blind and god knows what else programmes it just wont happen . . . . . . How many years would it not take to prove beyond doubt that a vitamin might prevent any disease let alone a slow insidious thing like dementia. . . . . . That would take decades.. . . . . . There is no money in it for them. . . . They have nothing to sell to pay for the research required therefore there is space for conspiracy theories on such in the same way as many people think that cancer should have had a cure long since were it not that there are maga fortunes to be made year on year off of peoples suffering. . . . . . Drug companies have long since been shown to be merciless and def not charitable. . . They prefer cures rather than preventions. . . . Cures are quicker to research. . . . . . The patient dies it doesnt work. . . . The patient survives even for a few months it can be called success. . . . . .
Hi again, just wondered if you'd thought of doing any lymph moving exercises to see if it can keep things under control better? The ones I do are no longer findable online but if you search Kelly Kennedy lymph pumping or Perry Nickelston you should find something. I do a short set first thing every morning, some thymus tapping during the day (especially if chesty) and a short set at night. Cheers
You have put a lot of time and effort into this and I know from previous messages that Dr Kendrick gets under your skin, so I apologise for mentioning him in your 'hearing'. No, he doesn't like the fact that simple *possible* self-help or treatments are not being included in the bigger picture of support for many chronic conditions and he can be vocal - somebody has to be, in my opinion only of course. You have selected a very small part of his overall issue to investigate, and that is your choice. I have found his support hugely helpful and his information worthy of thought. We make our own calls here. The fact that I don't agree with everything that you post does not mean that I don't take on board what you say and consider it along with other sources and my own experience. Best wishes
this article is awesome! Thanks!!!!
I believe my aunt who was diagnosed with and "died of" Alzheimer's was really just a misdiagnosis and that she really had untreated b12 deficiency.
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