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Thread: Vitamin B12 deficiency, what is going on?

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    Default Vitamin B12 deficiency, what is going on?

    I apologise for failing to write a proper, coherent message about this, as this is such a huge topic and I would not be able to do it justice, but I would urge everyone to look into B12 for a number of reasons:

    - A B12 deficiency can be the root cause of a wide variety of debilitating diseases and disorders (which I'll never manage to fully list here if I want to get round to posting this general message to get the ball rolling!)

    - Not everyone is able to absorb it from food or oral supplements, and this ability decreases with age. (Some types of gastric surgery affect this as well.)

    - The B12 store in the body can be depleted by stress, alcohol, and certain medications, including nitrous oxide, the 'laughing gas' often used as a sedative in dentistry.

    - B12 deficiency often is not tested for at all, but if it is, the blood tests are not 100% reliable. A lack of B12 can be masked by abundant folate or the synthetic folic acid that is added to many foods and multivitamins, or by a shortage of iron.

    - Therefore the symptoms are important to be aware of. See Dr Chandy's self-test to get an idea of possible clues.

    - Injectable B12 is cheap to make and safe to use.

    - Many doctors aren't interested or in complete denial of its importance.

    - Patients have been denied this essential treatment, or have had it greatly reduced, more so during the so-called pandemic.

    - People have had to form support networks to help each other with advice on symptoms, self-treatment, and finding suppliers that don't charge the earth. There is currently a petition (informational links at bottom of that page) to have injectable B12 made available in the UK without a prescription. (In Germany it is readily and cheaply available online. In the UK some pharmacies will do them via a scheme, but at a minimal of £27 per shot they're expensive and limited to one per month, which is no good when loading doses are required.)

    I cannot help but wonder if something fishy is going on with this situation unnecessarily hurting and killing people. I also have a feeling, though I could be wrong, that some cases of vaccine damage (not just the gene therapy shots) may be caused by the body's B12 stores being depleted in an attempt to deal with the toxins.

    I read that B12 has helped in cases of Bell's Palsy, which has been mentioned as a Covid 'vaccine' side effect, which made me wonder if it is especially those who are low in B12 that are most affected by the jabs. And it made me wonder if B12 could play a large part in the treatment of those side effects. It is speculation on my part, but it seems worth looking into.

    Recommended film about Sally Pacholok, author of 'Could It Be B12?'. This is a very informative watch, as it shows many of the symptoms through the different characters, and it gives an insight in the faults of the system.



    Vernon Coleman wrote this article about patients, including his wife, being denied this cheap treatment, with detrimental consequences. (There was a video too, but I cannot find it anymore.)


    There is so much more to this, with genetics, different types of B12, and co-factors coming into it, and experts contradicting each other over folate and folic acid, so it's like opening Pandora's Box, but it's one that needs looking into.
    Last edited by Anna70; 4th July 2021 at 14:04.

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    Default Re: Vitamin B12 deficiency, what is going on?

    Hope that means you've found an answer to your question Anna

    I'd only add that if you've found you've a B12 deficit, or a different one for that matter, it's a good idea to also ask 'why'? Of course it could be related to deficiencies in diet or the aging process, but it could also be a symptom of something else, like Coeliac or other conditions.

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    Default Re: Vitamin B12 deficiency, what is going on?

    Thank you so much Journeyman. Oh, how I wish I had a straightforward answer to that!

    I don't remember ever having had much energy, even as a child. I became a vegetarian in 1992, but have been supplementing (a bit on and off to begin with I confess, but more consistently over the past number of years). Was diagnosed with CFS/ME in 2015, after what I thought was my third burnout, brought on by excessive work related stress (including organising legal proceedings on behalf of 20 colleagues, at the same time as I was doing the intensive training for a new job, which in the end proved to be too stressful in its own right), but this time it never lifted.

    When I finally got some specialist care, I learned about to managing energy in order to prevent 'pay back time' afterwards. The emphasis was on adrenalin and cortisol, although these were never measured, and vitamin B12 hardly even got a look in.

    I had tested a bit below normal, back then, but some sub-lingual drops apparently brought my level to normal, and that was that. They made me feel somewhat better but not very much, but I did feel some (false?) sense of security that my B12 was ok.

    Then I found what I thought were the perfect multivitamin capsules online. They contained an enormous amount of B12, as well as lots of other things, and I stopped taking the drops.

    Early 2020 I had a dental implant done (never trust a fruit biscuit!), and two to three weeks afterwards I started getting a most awful bitter taste in my mouth. Went back to get it checked twice, only to be told it was healing well, and maybe an adjacent crown had been knocked during the procedure, but for that I would have to see my own dentist. Finally got an appointment with her two months ago, but she too could not find evidence of a dental cause. She did however urge me to get my GP to have my blood checked for all types of anaemia, as well as diabetes, thyroid, the usual suspects.

    During the days I had to wait for my phone appointment with my GP, I started reading up on the various types of anaemia, and I started recognising a large number of symptoms that fitted the B12 deficiency. Many of these had seemed quaint little issues to me, and unrelated to each other: pins and needles in mainly my lower legs, and a burning sensation, similar to how it feels when you're sitting just a bit too close to a fire, not unpleasant, I thought.... I also had this odd buzzing/humming noise in my head/ears, a bit like the sound of the wind and sometimes changing as if going through cycles like a washing machine. Sore and dry eyes. Random muscle twitches. Heart palpitations. Worsened fatigue, clumsiness and brain fog, which I'd pre-pigeonholed under typical CFS/ME. I learned that some of these symptoms could be indications of neuropathy, as the protective myelin sheath is broken down, and if this is left untreated, permanent nerve damage may occur.

    But how could this be when I'd been taking these capsules? Then I learned that not everyone can absorb B12 properly via the stomach. Could that be why those drops seemed to do something, but the capsules with their huge amount of B12 weren't doing anything at all? Worse still, the capsules contained a generous amount of folic acid, which not only can mask a B12 deficiency, but some say that this could actually increase the risk of nerve damage if taken when B12 is low. (There is a lot of debate on whether or not this is true, and then there is the thing about natural folate vs synthetic folic acid. What a minefield!!) Anyway, I immediately ordered some good quality drops.

    When I spoke with my GP, I put all this to her, and she agreed to let me have a B12 test. I asked her if I would be ok to supplement before the test, as my symptoms were so bad, and she said yes, and that I was going to be tested for Intrinsic Factor (the enzyme that helps you absorb B12 in the stomach) as well anyway. I had to wait several days for a letter with blood forms and the number to ring for the appointment, and when I rang, the best date they could give me was two months away!!!! At that point I was barely able to stand on my legs.

    From what I read over the following days, I got so worried about the drops not being sufficient to stave off permanent damage, that I started wondering about getting a B12 injection through a scheme that a pharmacist not too far from me was taking part in. Above all, I did not want to skew the test. But with that being so very far away, perhaps I could have one B12 jab now to help my body. Besides, the GP had said I was ok to supplement, and there was the I.F. test as well...?

    Feeling desparate, I decided I to have my first ever B12 jab. The day after that I had to go to the surgery for an unrelated screening appointment. As I chatted with the nurse, and mentioned the blood test being two months away, she offered to see if she could arrange for me to have it sooner, and she could! Realising that the recent injection was going to skew the B12 result made me hesitate, but then I thought that the I.F. test would tell me what I needed to know: can I absorb B12 properly via the stomach? So I agreed to the sooner date.

    Two days after that (three days after the B12 shot), I experienced the best day I've had in years. It was a sample of what 'normal' might be like, and even though this did not last for much longer than one day, I felt hopeful. The brain fog improved and the tingling and burning in my legs vanished completely, as well as the strange noise in my ears. But over the past few weeks, these things have all come back again, one by one. So that confirmed to me that B12 is definitely a factor!

    Weeks later I got my blood results. Of course the B12 was high, but worse, the more important Intrinsic Factor test had not been done because of the high B12, as apparently it does not work then!! Well, if I had known that, I would never have had the test brought forward!

    To be fair, I was offered to have the test done again, but I wouldn't be able to have any more B12 injections until then, and preferably no drops either.

    I joined several support groups on Facebook, and learned from other people's horror stories that even those with low test results aren't getting the treatment they need, and some who have been on treatment for years have suddenly been denied it, or had their treatment limited. And these are not odd cases, this is going on everywhere!!!

    Having experienced the effects of that one B12 shot, I concluded that if I was to stay away from B12 for twelve weeks, for the sake of a test which might not even result in my being awarded proper treatment, I would not be doing myself any favours. So I decided to 'go rogue', as one member put it, and order my own things. The support I received to during this process was amazing, and today I've done my second self-injection. I'm starting with loading doses every other day, so hopefully tomorrow I should feel an effect from the first one. Keeping everything crossed!!!

    I'll still need to see about folate and folic acid. (A very knowledgeable friend told me that she did end up with neuropathy due to using folic acid while B12 deficient, as her doctor was not aware of that risk, so even though there are some loud voices in the support groups saying this is not possible, I'm keeping my mind open, considering myself warned.)

    There are other things to check out as well. Potassium, magnesium, iron possibly..... And to make matters more complicated, I've been digging into my DNA and found out I have a fairly common MTHFR mutation, and an uncommon biotinidase issue, so my biotin (aka B7/B8/vit H) absorbtion is poor too, and apparently this works hand in hand with B12 in the mitochondria, the cells' powerstations!!! And I wonder why I've never had much energy..... (Oh, and this makes one more susceptible to candida too!!)

    Anyway, this is just about all I know right now. It's possible some of this info is not entirely correct, coming from a foggy brain that's trying to make sense of something even experts don't agree on, so I'll put that disclaimer here!

    I just hope that this thread may reach somebody who unknowingly suffers from a B12 deficiency, or who knows someone else who does, and recognises symptoms, so they may be alerted to this possibility.

    Sorry for this long-winded story, I didn't know how to shorten it!

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    Default Re: Vitamin B12 deficiency, what is going on?

    Quote Posted by Anna70 (here)
    Thank you so much Journeyman. Oh, how I wish I had a straightforward answer to that!

    I don't remember ever having had much energy, even as a child. I became a vegetarian in 1992, but have been supplementing (a bit on and off to begin with I confess, but more consistently over the past number of years). Was diagnosed with CFS/ME in 2015, after what I thought was my third burnout, brought on by excessive work related stress (including organising legal proceedings on behalf of 20 colleagues, at the same time as I was doing the intensive training for a new job, which in the end proved to be too stressful in its own right), but this time it never lifted.

    When I finally got some specialist care, I learned about to managing energy in order to prevent 'pay back time' afterwards. The emphasis was on adrenalin and cortisol, although these were never measured, and vitamin B12 hardly even got a look in.

    I had tested a bit below normal, back then, but some sub-lingual drops apparently brought my level to normal, and that was that. They made me feel somewhat better but not very much, but I did feel some (false?) sense of security that my B12 was ok.

    Then I found what I thought were the perfect multivitamin capsules online. They contained an enormous amount of B12, as well as lots of other things, and I stopped taking the drops.

    Early 2020 I had a dental implant done (never trust a fruit biscuit!), and two to three weeks afterwards I started getting a most awful bitter taste in my mouth. Went back to get it checked twice, only to be told it was healing well, and maybe an adjacent crown had been knocked during the procedure, but for that I would have to see my own dentist. Finally got an appointment with her two months ago, but she too could not find evidence of a dental cause. She did however urge me to get my GP to have my blood checked for all types of anaemia, as well as diabetes, thyroid, the usual suspects.

    During the days I had to wait for my phone appointment with my GP, I started reading up on the various types of anaemia, and I started recognising a large number of symptoms that fitted the B12 deficiency. Many of these had seemed quaint little issues to me, and unrelated to each other: pins and needles in mainly my lower legs, and a burning sensation, similar to how it feels when you're sitting just a bit too close to a fire, not unpleasant, I thought.... I also had this odd buzzing/humming noise in my head/ears, a bit like the sound of the wind and sometimes changing as if going through cycles like a washing machine. Sore and dry eyes. Random muscle twitches. Heart palpitations. Worsened fatigue, clumsiness and brain fog, which I'd pre-pigeonholed under typical CFS/ME. I learned that some of these symptoms could be indications of neuropathy, as the protective myelin sheath is broken down, and if this is left untreated, permanent nerve damage may occur.

    But how could this be when I'd been taking these capsules? Then I learned that not everyone can absorb B12 properly via the stomach. Could that be why those drops seemed to do something, but the capsules with their huge amount of B12 weren't doing anything at all? Worse still, the capsules contained a generous amount of folic acid, which not only can mask a B12 deficiency, but some say that this could actually increase the risk of nerve damage if taken when B12 is low. (There is a lot of debate on whether or not this is true, and then there is the thing about natural folate vs synthetic folic acid. What a minefield!!) Anyway, I immediately ordered some good quality drops.

    When I spoke with my GP, I put all this to her, and she agreed to let me have a B12 test. I asked her if I would be ok to supplement before the test, as my symptoms were so bad, and she said yes, and that I was going to be tested for Intrinsic Factor (the enzyme that helps you absorb B12 in the stomach) as well anyway. I had to wait several days for a letter with blood forms and the number to ring for the appointment, and when I rang, the best date they could give me was two months away!!!! At that point I was barely able to stand on my legs.

    From what I read over the following days, I got so worried about the drops not being sufficient to stave off permanent damage, that I started wondering about getting a B12 injection through a scheme that a pharmacist not too far from me was taking part in. Above all, I did not want to skew the test. But with that being so very far away, perhaps I could have one B12 jab now to help my body. Besides, the GP had said I was ok to supplement, and there was the I.F. test as well...?

    Feeling desparate, I decided I to have my first ever B12 jab. The day after that I had to go to the surgery for an unrelated screening appointment. As I chatted with the nurse, and mentioned the blood test being two months away, she offered to see if she could arrange for me to have it sooner, and she could! Realising that the recent injection was going to skew the B12 result made me hesitate, but then I thought that the I.F. test would tell me what I needed to know: can I absorb B12 properly via the stomach? So I agreed to the sooner date.

    Two days after that (three days after the B12 shot), I experienced the best day I've had in years. It was a sample of what 'normal' might be like, and even though this did not last for much longer than one day, I felt hopeful. The brain fog improved and the tingling and burning in my legs vanished completely, as well as the strange noise in my ears. But over the past few weeks, these things have all come back again, one by one. So that confirmed to me that B12 is definitely a factor!

    Weeks later I got my blood results. Of course the B12 was high, but worse, the more important Intrinsic Factor test had not been done because of the high B12, as apparently it does not work then!! Well, if I had known that, I would never have had the test brought forward!

    To be fair, I was offered to have the test done again, but I wouldn't be able to have any more B12 injections until then, and preferably no drops either.

    I joined several support groups on Facebook, and learned from other people's horror stories that even those with low test results aren't getting the treatment they need, and some who have been on treatment for years have suddenly been denied it, or had their treatment limited. And these are not odd cases, this is going on everywhere!!!

    Having experienced the effects of that one B12 shot, I concluded that if I was to stay away from B12 for twelve weeks, for the sake of a test which might not even result in my being awarded proper treatment, I would not be doing myself any favours. So I decided to 'go rogue', as one member put it, and order my own things. The support I received to during this process was amazing, and today I've done my second self-injection. I'm starting with loading doses every other day, so hopefully tomorrow I should feel an effect from the first one. Keeping everything crossed!!!

    I'll still need to see about folate and folic acid. (A very knowledgeable friend told me that she did end up with neuropathy due to using folic acid while B12 deficient, as her doctor was not aware of that risk, so even though there are some loud voices in the support groups saying this is not possible, I'm keeping my mind open, considering myself warned.)

    There are other things to check out as well. Potassium, magnesium, iron possibly..... And to make matters more complicated, I've been digging into my DNA and found out I have a fairly common MTHFR mutation, and an uncommon biotinidase issue, so my biotin (aka B7/B8/vit H) absorbtion is poor too, and apparently this works hand in hand with B12 in the mitochondria, the cells' powerstations!!! And I wonder why I've never had much energy..... (Oh, and this makes one more susceptible to candida too!!)

    Anyway, this is just about all I know right now. It's possible some of this info is not entirely correct, coming from a foggy brain that's trying to make sense of something even experts don't agree on, so I'll put that disclaimer here!

    I just hope that this thread may reach somebody who unknowingly suffers from a B12 deficiency, or who knows someone else who does, and recognises symptoms, so they may be alerted to this possibility.

    Sorry for this long-winded story, I didn't know how to shorten it!
    Not at all!

    I recalled your previous thread: https://projectavalon.net/forum4/sho...=1#post1428346

    did you get the coeliac bloods done?

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    Default Re: Vitamin B12 deficiency, what is going on?

    Oh my word, this is what my brain is like... I felt sure I'd mentioned some of this before, but couldn't find the conversation when I did a search for 'B12'. That is so embarrassing...

    Sadly, I did not get tested for gluten intolerance. The conversation with the doctor did not go exactly to plan, as she did not ring at the time I was expecting the call, and after spending the entire morning in 'alert mode', I'd dozed off, completely exhausted. And when she did ring, early in the afternoon, my computer with the checklist I'd made of all the things I wanted to mention to her had put itself in the type of sleep mode where I have to depress the on button for ages for it to wake up again. So I never mentioned all the things that were on it, and felt such an idiot afterwards. Edit: Mercury was retrograde!!!

    Thank you ever so much for reminding me, as it deserves checking out, especially with all the other tests coming back 'normal', when I'm feeling quite abnormal!

    On a positive note, one of the things that's been hijacking my three or so functioning brain cells lately, has been the decision to go ahead and order a Spooky2, which is now on its way. I've been watching quite a few videos on how to get started with these.
    Last edited by Anna70; 5th July 2021 at 00:53.

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    Default Re: Vitamin B12 deficiency, what is going on?

    Been so far away from nature, grown up inside cemented cities, with so much fear about everything nowadays, especially bacteria, we wash our fruits and vegetables so much, we let any kind of soil dirt which is so rich in B12, anywhere near our system, no wonder the deficiency.
    Just eat some dirt here and there. That's all.

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    Default Re: Vitamin B12 deficiency, what is going on?

    Thanks for this interesting thread on a very important subject. I would only add one detail, which is that most B supplements contain B12 in the (cheaper) form of cyanocobalamin, which actually contains a small amount of cyanide (yes, THAT cyanide) which some nutritionists say offsets the benefit of the B12 itself. Much better (but more expensive) is B12 in the form of methylcobalamin. Check the small print on your vitamin bottles! I sometimes explain this to shop assistants in Holland & Barrett; have never met one who knew about this before... See this link for a good explanation:

    https://www.healthline.com/nutrition...cyanocobalamin

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    Default Re: Vitamin B12 deficiency, what is going on?

    Quote Been so far away from nature, grown up inside cemented cities, with so much fear about everything nowadays, especially bacteria, we wash our fruits and vegetables so much, we let any kind of soil dirt which is so rich in B12, anywhere near our system, no wonder the deficiency.
    Just eat some dirt here and there. That's all.

    There is a lot to be said for that! Only thing is it would still need to go through the digestive tract. Or would the bacteria in the dirt help with the absorbtion? (Genuine question )
    Last edited by Anna70; 5th July 2021 at 10:31. Reason: Clarifying which message I was responding to.

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    Default Re: Vitamin B12 deficiency, what is going on?

    Quote Posted by Anna70 (here)
    Oh my word, this is what my brain is like... I felt sure I'd mentioned some of this before, but couldn't find the conversation when I did a search for 'B12'. That is so embarrassing...

    Sadly, I did not get tested for gluten intolerance. The conversation with the doctor did not go exactly to plan, as she did not ring at the time I was expecting the call, and after spending the entire morning in 'alert mode', I'd dozed off, completely exhausted. And when she did ring, early in the afternoon, my computer with the checklist I'd made of all the things I wanted to mention to her had put itself in the type of sleep mode where I have to depress the on button for ages for it to wake up again. So I never mentioned all the things that were on it, and felt such an idiot afterwards. Edit: Mercury was retrograde!!!

    Thank you ever so much for reminding me, as it deserves checking out, especially with all the other tests coming back 'normal', when I'm feeling quite abnormal!

    On a positive note, one of the things that's been hijacking my three or so functioning brain cells lately, has been the decision to go ahead and order a Spooky2, which is now on its way. I've been watching quite a few videos on how to get started with these.

    It's a struggle when you're wrestling the effects of something which hits your cognitive capacity. With the brain fog I found a notepad better than keeping notes on my phone or elsewhere. At doctor's appt I tried to boil down all my many concerns to a top 3 (they switch off or label you hypochondriac if you try for too much) and just focussed on getting some kind of answer to those.

    On celiac/gluten sensitivity - it could be the cause, a quick look here will show there's correlation aplenty, but of course correlation is not causation. If I were you I'd stay eating my normal diet until you can get a blood test done. If it's positive then great (honestly) you get your explanation, there's an easy fix which doesn't require medication, just some care with the diet and you'd probably find yourself feeling better than you thought possible.

    If negative the doctors would probably discard celiac as a potential cause, but that would be the time I'd strongly recommend going ahead with an elimination diet and seeing if you detect an improvement. The tests don't pick up on every case and there are people that aren't coeliac but do benefit from a gf diet.


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    Default Re: Vitamin B12 deficiency, what is going on?

    Thanks for the interesting and valuable thread! Yes, B12 deficiency is far more common than many think.

    Here's a recommendation. I take this as a supplement:



    The drops are sublingual (under the tongue), so it's absorbed that way (much better!), not via the digestive tract. I don't know if I have any kind of potential deficiency, but I take it just once a week as routine and my B12 levels, which I had tested, are all fine. But once a day is 100% okay if there does seem to be a deficiency issue.


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    Default Re: Vitamin B12 deficiency, what is going on?

    Quote Posted by Cognitive Dissident (here)
    Thanks for this interesting thread on a very important subject. I would only add one detail, which is that most B supplements contain B12 in the (cheaper) form of cyanocobalamin, which actually contains a small amount of cyanide (yes, THAT cyanide) which some nutritionists say offsets the benefit of the B12 itself. Much better (but more expensive) is B12 in the form of methylcobalamin. Check the small print on your vitamin bottles! I sometimes explain this to shop assistants in Holland & Barrett; have never met one who knew about this before... See this link for a good explanation:

    https://www.healthline.com/nutrition...cyanocobalamin
    Thank you so much for adding this vital piece of information, Cognitive Dissident!!! I'd forgotten to put that in. Yes, the cheap cyano type can be found in oral supplements and in injectable form as well. Some people reckon it is safe, and argue there is more cyanide in almonds and prune juice, but personally I don't think it sounds like a great idea.

    My drops contain the methyl and adenosyl types, and the shots are hydroxocobalamin.

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    Default Re: Vitamin B12 deficiency, what is going on?

    Quote Posted by Journeyman (here)
    It's a struggle when you're wrestling the effects of something which hits your cognitive capacity. With the brain fog I found a notepad better than keeping notes on my phone or elsewhere. At doctor's appt I tried to boil down all my many concerns to a top 3 (they switch off or label you hypochondriac if you try for too much) and just focussed on getting some kind of answer to those.

    On celiac/gluten sensitivity - it could be the cause, a quick look here will show there's correlation aplenty, but of course correlation is not causation. If I were you I'd stay eating my normal diet until you can get a blood test done. If it's positive then great (honestly) you get your explanation, there's an easy fix which doesn't require medication, just some care with the diet and you'd probably find yourself feeling better than you thought possible.

    If negative the doctors would probably discard celiac as a potential cause, but that would be the time I'd strongly recommend going ahead with an elimination diet and seeing if you detect an improvement. The tests don't pick up on every case and there are people that aren't coeliac but do benefit from a gf diet.

    That is so true about the cognitive thing. It leads to a lot of frustration and embarrassment. (My brain's internal spell checker is still broken!) I generally prefer paper too, but had prepared the whole thing in a wordpad document, as it made it easier to edit it for clarity...

    To be fair, they did get me tested for quite a lot of things, and took nine tubes of blood altogether. But you have definitely planted a seed, and I will look into the gluten thing more thoroughly. I have tried going without wheat before, but at the time did not feel a difference. Perhaps it takes a while. Anyway, if I've learned anything from the recent test blunder, I'd better stay on it until I get tested!

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    Default Re: Vitamin B12 deficiency, what is going on?

    my understanding is that only vegans have to worry about B12. And even they don't worry about it much because it's added to vegan milk products like Silk.

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    Default Re: Vitamin B12 deficiency, what is going on?

    Quote Posted by Bill Ryan (here)
    Thanks for the interesting and valuable thread! Yes, B12 deficiency is far more common than many think.

    Here's a recommendation. I take this as a supplement:



    The drops are sublingual (under the tongue), so it's absorbed that way (much better!), not via the digestive tract. I don't know if I have any kind of potential deficiency, but I take it just once a week as routine and my B12 levels, which I had tested, are all fine. But once a day is 100% okay if there does seem to be a deficiency issue.

    Thank you ever so much for your lovely words and your recommendation, Bill! Yes, sublingual drops are by far the best way to supplement if injections are unnecessary or not an option.

    The drops I'm now taking are similar, with adenosylcobalamin as well as methylcobalamin. Apparently the methyl B12 form is especially good for nerve repair (including Bell's Palsy!), and the adenosyl one for energy. Most people can convert one type into another other, depending on what function is required, but some have problems with that, and being a mutant, I thought I'd try these.

    This page
    shows how all forms compare.

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    Default Re: Vitamin B12 deficiency, what is going on?

    Quote Posted by Anna70 (here)
    Quote Posted by Journeyman (here)
    It's a struggle when you're wrestling the effects of something which hits your cognitive capacity. With the brain fog I found a notepad better than keeping notes on my phone or elsewhere. At doctor's appt I tried to boil down all my many concerns to a top 3 (they switch off or label you hypochondriac if you try for too much) and just focussed on getting some kind of answer to those.

    On celiac/gluten sensitivity - it could be the cause, a quick look here will show there's correlation aplenty, but of course correlation is not causation. If I were you I'd stay eating my normal diet until you can get a blood test done. If it's positive then great (honestly) you get your explanation, there's an easy fix which doesn't require medication, just some care with the diet and you'd probably find yourself feeling better than you thought possible.

    If negative the doctors would probably discard celiac as a potential cause, but that would be the time I'd strongly recommend going ahead with an elimination diet and seeing if you detect an improvement. The tests don't pick up on every case and there are people that aren't coeliac but do benefit from a gf diet.

    That is so true about the cognitive thing. It leads to a lot of frustration and embarrassment. (My brain's internal spell checker is still broken!) I generally prefer paper too, but had prepared the whole thing in a wordpad document, as it made it easier to edit it for clarity...

    To be fair, they did get me tested for quite a lot of things, and took nine tubes of blood altogether. But you have definitely planted a seed, and I will look into the gluten thing more thoroughly.:
    If you've had a raft of tests then there's a good chance they ran the coeliac screening.

    Quote I have tried going without wheat before, but at the time did not feel a difference. Perhaps it takes a while. Anyway, if I've learned anything from the recent test blunder, I'd better stay on it until I get tested! :wink
    You may have gone without wheat but still had hidden gluten in your diet, or even cross contamination from other foods/drinks/sieves/chopping boards etc.

    Absolutely, don't make any changes till you've got a negative gliadin test. After that, an elimination diet would be the best way and that is super strict, you write everything down when you eat or drink and you write how you're feeling. That's the way you can track and identify any correlations between foods and symptoms, because it can take minutes/hours/or even several days before different things manifest, depending on how your body reacts.

    Course it may not be that, but the rewards if you do identify an intolerance are many and far outweigh the initial pain at losing a favourite bagel or somesuch!

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    Default Re: Vitamin B12 deficiency, what is going on?

    Quote Posted by TomKat (here)
    my understanding is that only vegans have to worry about B12. And even they don't worry about it much because it's added to vegan milk products like Silk.
    TomKat, you have raised an important point, as this is what many people have been led to believe!

    It is true that a vegan diet without supplementation can cause problems due to insufficient B12 intake. But to be able to utilise any B12 we get from our food, whatever our diet, or from supplements in caps or tablet form, we need to have the ability to absorb it in the stomach as well.

    I've been a vegetarian/vegan for nearly thirty years, and thought my super high B12 multivitamin capsules, aimed specifically at those on meat free diets, had me covered. But intake does not do anything without absorbtion.

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    Default Re: Vitamin B12 deficiency, what is going on?

    Journeyman, thank you!!! It's certainly worth knowing about if that is part of the problem!

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    Default Re: Vitamin B12 deficiency, what is going on?

    Anna are you a fan of Marmite? I'm lucky in that I've always been in the 'love it' camp.

    I'm not a vegan, but the NHS recommends it (or any kind of yeast extract I guess) for anyone following a vegan diet, or for whatever reason is deficient in this vitamin, given that vitamin B12 is ordinarily only obtainable from animal sources, such as meat, fish and dairy products.

    The NHS recognises Marmite as a source of the vitamin, because it is "fortified with vitamin B12"

    For non-UK readers, Marmite is a thick, dark paste made from the by-product of beer brewing. Even connoisseurs of this stuff like myself find its flavour difficult to describe, but as a best stab is a salty, acrid soy sauce-like flavour.

    My wife suffers from pernicious anaemia and has regular injections on B12 to enable adequate absorption of iron.
    Last edited by happyuk; 5th July 2021 at 21:10.

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    Default Re: Vitamin B12 deficiency, what is going on?

    happyuk, I must apologise for being so slow with a reply and a proper thank you! There were some distractions this end, and after that Bitdefender stopped me accessing the website for a while, something I've figured out at last!

    I've tried Marmite once in its 'full on' form, and it reminded me of a stock cube disguised as syrup, so that wasn't a great success, but it's great as an ingredient with savoury soya mince for instance.

    I hope your wife has been able to receive all the B12 injections she requires. I've read some terrible stories in the Facebook support groups, of people being taken off injections or seeing them greatly reduced for no good reason, and many in the UK are now given no option but to source it themselves from German online pharmacies.

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