Vitamin B12 deficiency, what is going on?

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Posted by Myristyl

This is an important thread. Literally everybody I have ever spoken to on the subject of B12 has no idea how serious it can be. Many years ago I heard an interview with a specialist on the subject who claimed B12 deficiency and related illness is one of the biggest scandals in the NHS. Unfortunately I can't recall his name.

My own story regarding B12 started following a burst appendix; a few years of total misery, tests and implications that I was making it up. Removing gluten from my diet made, and continues to do so, a huge difference. Initially I thought that by avoiding gluten I had found the answer so dramatic was the difference but after the elation passed I realized things were still not right. Incidentally, the number of doctors who told me diet was unlikely to be responsible was surprising.

Eventually one doctor decided to test for, amongst other things, B12. The results came back critically low which is pretty bad considering the NHS lower limits are already low by international standards. I went on supplements for a couple of months and retook the test only to find the results had dropped further. After this I had the loading doses and began to immediately feel better.

My symptoms included (there are some omissions but I can't remember everything):
Fatigue, worsening of vision, pins and needles in the feet and lower legs, itching, headaches, poor balance, excruciating stabbing pains in the muscle about five inches below the knees, fizzy feet (a kind of numbness), difficulty maintaining concentration, irritability (hard on one's family) and lethargy.

One of the things that concerns me most is B12 and dementia. I can't help but wonder how many people have suffered terribly and so unnecessarily. A good friend of mines elderly mother had slipped into the early stages of dementia and she was told that it was just old age. In relating the story to me, fresh from my own experience with B12 deficiency I suggested she get her mother tested, especially in light of the fact that she had been taking proton pump inhibitors for reflux. It turned out she had critically low B12. She did show some improvement once the injections started but, unfortunately the long term damage had been done.

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Yesterday 01:35Link to Post #33
Myristyl, OMG you too. I am so sorry you too have this B12 def, but so relieved for you that you had a doctor who diagnosed you correctly. There are so few of them. The majority of people on the B12 forum I mentioned in my other post were also misdiagnosed. To think of the large number of demented people who need B12, and who could potentially recover from at least beginning dementia, is terrifying. That dementia began happening to me and what it felt like was not being sure of the difference between being asleep or awake. Others in the B12 forum have described this as becoming "Dreamy". The terror and disorientation it produces is abysmal and to think it could be prevented... and that B12 deficiency has been known about for maybe a century and the shots used to be easy to get. I could go on and on...
Thanks for describing your symptoms. It helps me to hear others stories.
To know that I am just 4 days away from dementia if I don't get my B12 shot is uncomfortable, but it's nothing compared to slipping into permanent dementia,
like my mother, grandmother and great grandfather did. Who knows, maybe one of (up there) them sent me that doctor that diagnosed me!!

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Posted by Harmony

Thanks Running Dear for the information above. :rose: The Global Healing Vitamin B12 linked above really looks like a good quality and formulation to try :shooting star:

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Hi Harmony, https://i.imgur.com/LAk0Fum.gif I’m listening to this and thought of you. The take away is when the vitamin B12 is a methylated B12, the vitamin is received better. And as pointed out in the earlier post, Organic Vitamin B12 Liquid is methylated.

The topic of methylation is a little past the 1:50:00 mark. BTW: I enjoyed the whole video.

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Source: https://youtube.com/watch?v=EkjEdB0Or8w

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Oh wow....... I've been absent from this so very precious forum for far too long (I honestly don't understand why :unsure:), and the sheer number of new and most interesting posts in this thread has blown me away! Going by many of the messages posted here, it is evident how the, often unsuspecting, B12 deficient are being let down on a huge scale by health services in many countries. I see, too, that there are more who suspect that there is more to this, possibly even beyond profits for the pharmaceutical industry.

I hope to reply to some of the posts individually soon, as well as share some of my more recent experiences, but I'm still a bit slow at the moment. So for now I want to say a massive thank you to everyone for sharing so much good information, which will go on to inform and help others.

Much love to all here!!! :heart: :heart: :heart:

Welcome back Anna70, missed you and hoping you are well:heart:

Thank you so much for the warm welcome back words, Harmony! :heart: I have missed being here, so I'm puzzled as to how I've managed to leave it so long. I couldn't find an emoticon that looks as embarrassed as I feel about that!!

I'm not too bad, thank you, but still quite tired from a period of overdoing things, which still does not take much, unfortunately. Having said that, the B12 (hydroxo) injections, which I'm still taking (I try to have one every other day), are definitely making a big difference to how I was before I started, and when sometimes I leave it too long in between, I'll know about it. So it seems that even after all this time I'm still on 'loading doses'! (To be honest, I really don't know how people are expected to cope with only two weeks' worth of loading doses, to then be moved on to a monthly or so top up, if they are even offered any treatment at all!)

That reminds me, there is a link I want to share to this webpage by Dr Sarah Myhill, who specialises in ME/Chronic Fatigue Syndrome. It is fascinating how many different mechanisms B12 plays a part in, not to mention the minefield of co-factors, which opens up yet another rabbit hole!

Getting these right is still an ongoing process. I know that the synthetic folic acid form of folate is no good for me, as I have one of those genetic blips (Methylenetetrahydrofolate reductase/MTHFR), so I have been trying methyl folate and folinic acid instead, but from sessions with a kinesiologist it seems that my body does not like these either. I asked her if I should instead eat more folate rich food, as the B12 support groups seem to insist on the need for this when on B12 injections, but it seemed I was missing the point my body was trying to make, as the folate rich food samples she tested on me were also rejected by my body's response!! Thankfully the current B complex supplements I'm taking were fine, and they contain some folate as well (I only take 1 a day though. Incidentally, I wish they would not use the word 'folic acid' on the label when they mean a different form of folate!), so perhaps it was a matter of still having too much in my system from the previous ones I was on, which contained a ridiculously large amount, or my body has some unusual aversion to something that is supposed to be good for most people.

Speaking of the kinesiologist, I am reminded of Journeyman's very good point regarding Coeliac Disease. I confess that I've not had that tested officially, as I don't think I have got that. However, a Bioresonance test I had done years ago pointed out an issue with gliadin (ordinary gluten came up ok), and the kinesiologist found that my body rejected all three different types of wheat she tested me for, but that - luckily for a bread lover! - spelt and rye, which also contain gluten, albeit of a less problematic structure, were fine! So I now make my own spelt bread (thank heavens for my good old Panasonic breadmaker, which has several 'Speciality' (spelt) programmes), and that seems to be fine, although I can't say I ever consciously experienced the issues my body seems to have been having with wheat, so if the spelt should cause an issue, I might not be aware of that either. Anyway it seems wheat may well have been a contributing factor to the development of my B12 absorption issues, so that was a good shout, Journeyman!

I hope to reply to more posts soon. :heart:

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Posted by Antagenet

Wonderful thread Anna!
I wish I had found this before I became severely B12 deficient. I believe mine is caused by genetic mutations
and runs in my family. I was beginning to experience dementia and the B12 shots completely reversed it.
I would be glad to share my experience if anyone is interested.

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I am so glad you are finding the thread of value! And I have been reading your posts with much interest. Genes definitely come into it, the not at all uncommon heterozygous MTHFR C667T in my case, and I can't help but wonder if my parents, who both ended up with Alzheimer's, might have been spared that horrendous disease, had they been treated with B12. It is so good to hear that you managed to completely reverse your symptoms!!!!!

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Posted by Tintin

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Posted by Antagenet

Wonderful thread Anna!
I wish I had found this before I became severely B12 deficient. I believe mine is caused by genetic mutations
and runs in my family. I was beginning to experience dementia and the B12 shots completely reversed it.
I would be glad to share my experience if anyone is interested.

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Yes, it is :heart: :muscle:

I recently had blood tests done (April) and my B12 count was a shocker. I'd more than pleased if you'd share some of your experience too, when you feel comfortable doing it.

Essentially I've eschewed injections but am taking methylcobalamin supplements (5000mcg once per day). I've also reintroduced liver into my diet although perhaps the one food that contains extraordinary high natural levels of B12, clams, are a little tricky to come by here. And I've always got Marmite on hand as well. The issue I have almost exactly mirrors Anna's in that this is an absorption issue.

I'd agreed with my GP, who is most excellent by the way, that we'd experiment in a dietary way initially, get some more tests done, perhaps nearing that time in a month or so, and see if there's any improvement. None of us can be certain when, or if this has always been an issue but has reared its head as I get a little older.

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Good to have an understanding GP on your side! :thumbsup: I really hope that you will manage to obtain sufficient B12 orally, but if not, don't be put off by the idea of injections if they should turn out to be the way to go. I'll always be a bit of a wuss when it comes to needles, but I've self-injected into my thigh muscles hundreds of times now, using this gadget to help me with the tricky bit!

Wow, Antagenet, so much of what you wrote resonates with me!!! Well done you, to find that doctor! :clapping:

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Posted by Antagenet

https://vimeo.com/891099138/4150efa06b

Another good video about B12

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Just WOW!! This video should be compulsory viewing for all GPs!!! I am so grateful that you shared this, and I've forwarded it to two friends, who have similar conditions!!!!! :highfive:

Interestingly, Cytoplan happens to be the very company that my kinesiologist recommends, so that was a good sign right away! And while watching it, there were several moments where I was nodding my head in agreement with points that I rarely see addressed elsewhere. For instance, to make sure your B12 is treated before you start taking folate, to prevent (potentially irreversible) damage to the spinal cord (from around 37:30 into the video).
And what he said about the spike proteins affecting B12 is something that I have suspected for a long time, as Bell's Palsy, which became associated with the jabs, also features on the list of potential B12 deficiency consequences.

So many thanks to you, Antagenet, for sharing, and to Harmony and Tintin, for ensuring that this video is now safely stored in the archive!!! :heart:

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Posted by Harmony

Thank you Antagenet for sharing your experience. I somehow missed your last post on July 5th and I found it very interesting to read. I will certainly by listening to the video you linked above.:bearhug:I am so pleased your health has turned around and you are on the mend now :heart:


For a while now, maybe 9 months or so that I know of anyway, I was diagnosed with anemia, which I did not use to have. I have been taking a liquid B multi vitamin that is suppose to be easily absorbable. When I went for my last test to check my blood count it was actually worse even after taking good iron supplents and I have been wonderig what is going on. This week after being on discord with Bill he mentioned maybe trying B12 injections.


I found the chemist does carry the ampules of the Hydroxocobalamin and also syringes. At first the chemist was hesitant to all them to be given without a perscription, but then they checked and it is ok, but they said it is recommended to check with your practitioner. (This is in Australia). It's all pretty easy to do, but it is advised to have another person present the first time incase you might be allergic to the formulation, or you could get the first one by a nurse if you are worried.


I think I am already feeling a difference and I will be hoping my next blood test will show that there is an improvement in my red blood cell count.


I have been thinking about strange things happening to people I know that are not vaccinated, but have had covid or think they had covid a few years ago. Some of the symptoms that seem to start up are more leg cramps, dry eye syndrome and other non diagnosed body symptoms. I do wonder if there are side affects for certain groups or blood groups after having covid, that are now sped up or something. I just thought I would mention that in case it helps any one else. Are we not absorbing our nutrients as well as we were before, and why?

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So pleased to read that you seem to be feeling an improvement from your B12 injections. Well done on persevering and getting hold of them!! :highfive:

Something you probably already know, but which I felt compelled to mention when I read that you are in Australia, is that the hydroxocobalamin vials need to be stored below 25°C (not refrigerated though). I once inadvertantly ordered a batch just before a heatwave occurred :facepalm:, and I did not feel that was working anywhere near as well for me as it had done before. I asked the kinesiologist if she could test a vial from that batch and one that I had ordered later, during cooler weather, and the difference in the body's response was clear: the heat affected one had gone off!

Thank you for the reminder on iodine, Ernie! :thumbsup: I'm taking this kelp to hopefully cover that requirement.

From Anna70 here

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Something you probably already know, but which I felt compelled to mention when I read that you are in Australia, is that the hydroxocobalamin vials need to be stored below 25°C (not refrigerated though). I once inadvertantly ordered a batch just before a heatwave occurred :facepalm:, and I did not feel that was working anywhere near as well for me as it had done before. I asked the kinesiologist if she could test a vial from that batch and one that I had ordered later, during cooler weather, and the difference in the body's response was clear: the heat affected one had gone off!

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Thank you Anna70, and yes that is what I am using, hydroxocobalamin vials, and I checked and on the back of the box it does say store below 25C, so thank you for letting myself and others know as summer time will be arriving before we know it here in Aus. I will be sure to take my esky with ice into town this summer to keep the temp. moderate :stars:

Just updating as I have had another blood test result today. :sun: I have been on B12 injections, 2 ml of B12 per week for the past 2 months and I have noticed improvements in my energy and the way I feel.


My results today showed that my red blood cell count is no longer in the anemic range, but now in a normal lower range, so I am very pleased with that result. My iron levels are still low, but up just a bit, so I still have to keep going to get that up, and the B12 should help with that over time, but will need to focus on getting things balanced for a while.


Hoping everyone else is doing fine, thank you for all the good information everyone has posted in this thread. :heart:

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Posted by Harmony

Thank you Antagenet for sharing your experience. I somehow missed your last post on July 5th and I found it very interesting to read. I will certainly by listening to the video you linked above.:bearhug:I am so pleased your health has turned around and you are on the mend now :heart:


For a while now, maybe 9 months or so that I know of anyway, I was diagnosed with anemia, which I did not use to have. I have been taking a liquid B multi vitamin that is suppose to be easily absorbable. When I went for my last test to check my blood count it was actually worse even after taking good iron supplents and I have been wonderig what is going on. This week after being on discord with Bill he mentioned maybe trying B12 injections.


I found the chemist does carry the ampules of the Hydroxocobalamin and also syringes. At first the chemist was hesitant to all them to be given without a perscription, but then they checked and it is ok, but they said it is recommended to check with your practitioner. (This is in Australia). It's all pretty easy to do, but it is advised to have another person present the first time incase you might be allergic to the formulation, or you could get the first one by a nurse if you are worried.


I think I am already feeling a difference and I will be hoping my next blood test will show that there is an improvement in my red blood cell count.


I have been thinking about strange things happening to people I know that are not vaccinated, but have had covid or think they had covid a few years ago. Some of the symptoms that seem to start up are more leg cramps, dry eye syndrome and other non diagnosed body symptoms. I do wonder if there are side affects for certain groups or blood groups after having covid, that are now sped up or something. I just thought I would mention that in case it helps any one else. Are we not absorbing our nutrients as well as we were before, and why?

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Posted by Harmony

Just updating as I have had another blood test result today. :sun: I have been on B12 injections, 2 ml of B12 per week for the past 2 months and I have noticed improvements in my energy and the way I feel.


My results today showed that my red blood cell count is no longer in the anemic range, but now in a normal lower range, so I am very pleased with that result. My iron levels are still low, but up just a bit, so I still have to keep going to get that up, and the B12 should help with that over time, but will need to focus on getting things balanced for a while.

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https://i.imgur.com/u2d5YI1.gif Oh yay, Harmony!
Congrats and continued health. https://i.imgur.com/hLSasO3.gif

Thank you so much Paula :bearhug:I will also be paying attention to Dr. Jack Kruse's video you kindly posted here about the importance of the sunlight, limiting exposure to blue light, and your daily protocol to make the most of the information on a daily basis. :rose:

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Posted by RunningDeer

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Posted by Harmony

Just updating as I have had another blood test result today. :sun: I have been on B12 injections, 2 ml of B12 per week for the past 2 months and I have noticed improvements in my energy and the way I feel.


My results today showed that my red blood cell count is no longer in the anemic range, but now in a normal lower range, so I am very pleased with that result. My iron levels are still low, but up just a bit, so I still have to keep going to get that up, and the B12 should help with that over time, but will need to focus on getting things balanced for a while.

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https://i.imgur.com/u2d5YI1.gif Oh yay, Harmony!
Congrats and continued health. https://i.imgur.com/hLSasO3.gif

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The thread title is suddenly perfect for me. :) (What is going on?!)

I treated myself to a blood test a few days ago, very cheap and easy in Ecuador. (Just walk into a lab and ask them to please test X, Y and Z.)

To my astonishment, my B12 levels were very low – just under 86 pg/ml. They should be in the 500-700 range, as mine were when I last tested them in 2021.

I was glad I'd tested them again! I'm assuming it's easy to fix, and now I'm taking 3 different kinds of B12 supplements every day. I'll go for another test next month.

The problem is that I have no idea why this happened. I didn't have any symptoms that I was aware of. My diet includes lots of eggs, cheese and raw milk. That diet's not changed, and my B12 levels were high before. So it must be some kind of absorption issue.

:worried:

Moral of the story: never assume one's levels of anything are fine. And do check them regularly if it's easy and inexpensive to do so.

(And I have a parallel story about Vitamin D, shared on this different thread)

Growing MUSCLES Over 50 Years of Age
https://youtube.com/watch?v=vWrzH...=Dr.EricBergDC (8:01)
Coincidentally I watched this today (I watch as many of Dr Eric Berg's videos as he posts and have to say his advice has turned my life around).

He mentions malabsorption of B12 at around 6:05 where he suggests taking Betaine Hydrochloride, and there are many brands on Amazon. 👍

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Posted by grapevine

Growing MUSCLES Over 50 Years of Age
https://youtube.com/watch?v=vWrzH4IBs-Q&ab_channel=Dr.EricBergDC (8:01)
Coincidentally I watched this today (I watch as many of Dr Eric Berg's videos as he posts and have to say his advice has turned my life around).

He mentions malabsorption of B12 at around 6:05 where he suggests taking Betaine Hydrochloride, and there are many brands on Amazon. 👍

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Thanks, and that's really very useful. I do quite often take Betaine Hydrochloride, but only 1 capsule per protein meal and no more than 1 a day, while Dr Berg recommends 4 or 5. So maybe that's something for me to change very easily. :thumbsup:

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Posted by Bill Ryan

I treated myself to a blood test a few days ago, very cheap and easy in Ecuador. (Just walk into a lab and ask them to please test X, Y and Z.)

To my astonishment, my B12 levels were very low – just under 86 pg/ml. They should be in the 500-700 range, as mine were when I last tested them in 2021.

I was glad I'd tested them again! I'm assuming it's easy to fix, and now I'm taking 3 different kinds of B12 supplements every day. I'll go for another test next month.
[ ... ]
(And I have a parallel story about Vitamin D, shared on this different thread)

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This morning I checked it once again — this time going to a different lab, one that I'd consulted quite a few years ago. I'd only changed to another one because the first was physically a lot more of a hassle to drive to in the busy center of town.

Lo and behold, my results came back as "over 2000". (That's off-the-scale high. :muscle::facepalm:)

Believing it was low, I'd been supplementing myself for weeks with 5000 mcg/day. But without knowing, I was actually pushing myself into overdose. :P

So the mystery is finally solved. The lab I was going to before was simply producing false low results.*

* And exactly the same for my Vitamin D, which had also come back mysteriously low at the previous lab I was using. I've posted about that separately on the Vitamin D thread, because I do feel it's quite important to share the info.

~~~

The smoking gun! :)

https://avalonlibrary.net/Bill/Bill_..._June_2025.jpg

My Dr endocrinologist told me to stop D3 after taking 10,000iu’s daily for many years. Stating kidney stones, kidney failure. On recent scan no stones at all, anywhere. I had many operations for kidney stones until 45 years ago, nothing since. Who does one believe? Back on 5,000 iu’s D3 daily, as no flu, no colds for many years. Awaiting major test results for cortisol now, as he thinks I have Cushings Syndrome! They are always testing for stuff, now I have leukaemia, atrial fibrillation, as well as COPD. Ah well….