Pernicious Anaemia Society
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Too much b12 possible?

Hi. I’ve only just started self injecting b12 (once so far) and plan to do it every 2 days until I feel human again.

I just wanted to know if it’s possible to get too much b12 in your system and if that could cause any harm?

Thanks x

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there is no known toxicity from B12.

hydroxocobolamin is used as the treatment of choice for cyanide poisoning because of the lack of toxicity. This involves administering 5000x the amount you are using in a single dose, intravenously over 15 minutes.

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Thankyou.

Just still a bit scared after too long with a gp who tells me I should be fine with three monthly injections as if I am imagining my symptoms. Just want to stop dragging myself through life every day. I don’t even like driving my car far anymore as my head swims from tiredness and I panic. Lack of b12 has definitely greatly increased what we’re once “mild” anxiety symptoms because i’m trying to hold everything in my life together whilst feeling exhausted, tingly and often confused/uncoordinated. How soon after an injection should you notice any difference?

Sorry for long reply. I’m just desperate to feel well and I’m sick of my kids having a mum who is exhausted all the time 😟

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Hey julie, sorry to hear your hving hard times.We all differ but i think Many on here will know or will have had a simlar experince to this.

I myself was on 1 every 2 months l with gp saying all in my mind... i had phyciatrist for 2 years and antiphycotics for those 2 years then phyc said clearly b12 and mentally fine....she did me a note which gp ignored (gp also ignored many gp notes from and about ny PA in youth)

Then got to scary stages on 1 every 2 months were i could not walk had wheelchair, kane , shook and tremored had sevre chest heart pain and so on ... burning bones couldnt open doors due to weakness.... welll anywat the list continues but no point in reitterating it all

Ny point is even at that stage my gp saud must be spmthing else... had cancer checks forke dout for chest specialists and in the end when they all found nothing gpoGP claimed warped rib from birth after many other geusses and GPs in my area

I went abroad to see one doctor to get there opinion...he saw my PA and thought it was ridiculous it was allowed to get to this point ... long story short he gave me larger dose of b12 and i started picking it up in framce and using in uk started to improve now i can walk and im in a job (well its a sit down job but still)

And even with all this the uk gp still says she was right amd PA has no effects and its mental.... ive litterally left UK over this as its created a distrust of my GP who was very quick to perscribr quietiapine and other antiphcs which did nothing.... a few months of 2 euro a week b12 amd im sooo much better and even though seems to be dlower now im a little better each day and fetting life back slowly....

Im not a doctor im just saying my experince and definitlt dont want ithers going through the very avoidible horror i did and am still recovering from....

Its your life your choice, but id say if you need it do it, if it doesmt help you then fair enoigh but if it does improve things then dont let it get you as ill as i became because 9t seems to take ages to recover (so much better than before as i said i cam walk and breathe! But not old me yet) i however will not trust my Windsor GP ls again over this and have gone to new docs abroad

If you do decide to do more regularly just ensure you have folate and other vitmans for it to bomd woth and keep your pther levels up

If gambit corrects me on anything, gambit is definitley more a fountin of knolledge than i on this... im just recovering and angry this keeps happening to people

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Thanks so much for sharing that with me. Feel a bit more hopeful now. I'm not even living half a life at the moment but I'm really glad I decided to take some positive action myself. GP's are heartless and pretty damn ignorant when it comes to this stuff. I hope you keep improving and get the old you back soon 🙂

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Hi Fudgemanjim . Sorry to hear your story, but as you said others will have had similar experiences - me included!. Am I right in thinking that you are going to France to see your Dr's and get treatment?? I live in France and would be interested to hear how you find the Dr's attitudes to B12 problems there.

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Hi Julie2408

Have a read on the link below "Treatment with high dose vitamin B12 shown to be safe for more than 50 years" second item down in the left hand column.

stichtingb12tekort.nl/our-e...

Any excess of B12 is excreted via your urine.

However, be aware that it is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are injecting starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

As others have said if you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

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Thankyou clivealive. That's encouraging, especially the bit about feeling worse before you get better because that's what's happening with me and I started thinking I'm going slightly mad. I take folic acid 5mg everyday on prescription so I think that's enough? They seem to be very happy to put me on folic acid whilst behaving like the b12 has no real point!

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Julie, just as with everything else with NHS/GP beware of their prescriptions.

Folic Acid (I think is artificial /definitely cheaper and why prescribed)

Folate is what you need. Folate as in foliage - we get from green plants or from eating the meat of animals that graze on green plants (note: not fed grain/soy common practice. Nothing green about that)

I think it is Chris Kresser but other Functional Nutritional Doctors will speak on also. Google the difference between Folate v Folic Acid

If I remember correctly many cannot convert Folic Acid to Folate. Folic Acid has to be converted by the body to be useable. If you can't convert then it is not useable and builds up and is harmful.

Read Chris Kressers article. How many pregnant women are prescribed Folic Acid or Folic Acid in cheap multi vitamins - shocking

I believe Science has now proved (I have recently read articles) that all artificial vitamins actually block absorption of natural vitamins. So not only are artificial vitamins (as opposed to food based supplements or vitamins in your food) harmful but prevent healthy function as devoid of natural vitamin function

So google foods high in folate. Check out the ones you like and stuff yourself with :)

And make sure they are organic.

You are not going to do yourself any good with herbicide and insecticide sprayed food. Weed Killer /herbicide Glyphosate (the makers of are Monsanto were taken to a Tribunal for Crimes Against Humanity in March 2017 - says it all) known also as Roundup is sprayed liberally

For supplements, Website: Amrita, go to brand - Seeking Health. You will find Folate (NOT folic acid) supplements. Also you can supplement with B12 in addition to injections if you cannot get sufficient injections

You want B12 in supplementation form that does not need converting by the body so that is Methylcobalamin and Adenosyl. The body needs both forms. There is 5000mcg tiny tiny tablet that disolves in your mouth that contains I think 3000mcg of methyl and 2000mcg adenosyl by seeking health.

Tastes of raspberry or something like

Hope I am correct in saying that your body will use methyl and convert to adenosyl it's requirement. Adenosyl is required by your mitochondria in your cells.

Mitochondria = produce the energy force in cells. Eg 100's of mitochondria in heart/brain cells as these cells need to produce lots of energy. Some other cells in other organs will have less mitochondria dependant on that organs role.

But obviously essential and so it seems sensible, if struggling to give a helping hand to your mitochondria and take the adenosyl form of B12 as well as the methyl.

The brand Seeking Health is owned by Methylation (B12/folate cycle) expert Dr Ben Lynch. Should experts take advantage of their expertise by producing a brand of supplements - it's questionable. However I would rather take a supplement regulated by the knowledge of an expert who found there were no valuable supplements for his patients/patient audience, than some mega group.

Seventh Wave website also renowned for food based natural supplementation with no additives/fillers produce a liquid Bvits supplement called Zell Oxygen. B vits all work together so best to take in addition to the high dose methyl/adenosyl B12 so all bases covered, if not well. It's what I do.

Also ask your GP if can have a homocysteine test (NHS) It doesn't matter what B12 blood test shows - it may not be active and getting into and working in cells

Homocysteine is produced by the body when breaking down proteins. Homocysteine is broken down in the metylation cycle.

Your homocysteine blood level will show you whether B12 is sufficiently actively working in cells or not.

Your homcysteine blood level needs to be between 6 - 8 no higher. (ignore normal range, normal just means average - you don't want average, that means many ill patients included - you want optimal) If it is higher you need to be proactive to get it down. (see Food for the Brain website - google and add homocysteine - should get you to the right page)

Homocysteine levels are not just important for the brain but all major organs including the heart. High homocysteine is a major contributor /indicator for heart disease. Not that your GP will have any knowledge of/or necessarily even know of the test

It is NHS and it does indicate whether B12 is working in cells. The only NHS test that I am aware of that does indicate.

The test: must be fasting, must not be taken at the GP surgery as your blood needs to at the lab within half hr to an hour of taking. Not go on a merry trip around your area. So you need to ring your local hospital to see if their labs do homocysteine test. We have 2 hospitals in our city, one does the other doesn't.

Ask your GP to request on the computer system as all blood tests are, and just go to the phlebotomy dept of your hospital - no appointment needed. Give your health no or hosp no and the person drawing your blood will just tap into the system and see your GP's request. Just mention that to the nurse drawing blood that as homocysteine it needs to get to the lab straightaway or within half an hour. They usually know this, but I have had a nurse say to me, 'oh thanks for reminding me'

When test/s are back ask receptionist for a print out of result/s to refer to / compare in the future.

Just a note: UK are far behind with B12 blood level normal range. All countries are different. Normal range is not a magic number. It is just made up from an average no. of people. In Japan the normal range for B12 blood level is 500 - 1300. Everyone is considered deficient if below 500. Dr Daniel Amen (psychiatrist) states: everyone needs to be top of the range when it comes to B12 - so thats 1300 according to Japan. Japan has the lowest heart disease and alzheimers of any population.

Take Care

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Hello. I have been wondering why chest pains are a symptom of B12 deficiency. I mean, the exact mechanism? But I think your post may have answered that question: high Homocysteine levels? Or have I got hold of the wrong end of the stick? All I know is that when I take high sublingual B12 supplements the chest pain (left side) disappears and it would be nice to know exactly why. Like many people on this site I have seen a cardiologist and he has found nothing wrong with my heart. By the way is this Homocysteine level test the same as a B12 active test? Thanks!

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Id love to know this too, all my understanding so far is a very basic, not enough b12, PA naff blood heart struggles making chest and heart pain OR PA eventually untreated or undertreated causes organs to start to fail ) ...of course thats very basic anyone with a concrete reason and why? Being a chocolatier by proffession (least i used to be before getting wprse) dont evem knkw about homocystine levels... i just know more reg b12 changed the chest pain to disconfort (like worms in chest then eventually over weeks and months got rid of it neary entirley but does return sometimes..its laughable and nothing compared to before though :)

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Please see my reply post to Frank below , if you wish. :)

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Hi Frank, Homocysteine is completely different test to the privately obtained Holo or Active test.

NHS serum B12 test measures Total B12 in blood.

Only about 20-30% of B12 in blood that is measured in this test is useable by the body/gets into your cells to work.

The Active B12 test will measure Total B12 and specify the Active B12 portion of the Total. The % amount of Active B12 should be 20-30% of Total. BUT anyones could may be zero or any amount inbetween or higher.

So the NHS Total B12 test shows you zilch! Unless your Total B12 is lower than the accceptable range by the NHS. Because then it is really LOW and so the conclusion has to be Active % of low is gonna be too low no matter how rubbish the test is. And so it is obvious you will not have enough active B12 getting into cells.

If you have a normal measurement or high registering in the NHS Total B12 test it does NOT mean that any is getting into your cells.

And it is why many pay for the private Active B12 test

However

Homocysteine blood levels indicate whether B12 is working in your cells. Because Homocysteine is reduced during the Methylation cycle. B12 when functioning in your body converts it. (I can't quite remember but I think it is B12 without which the methylation cycle cannot function properly converts Homocysteine into Methionine, so your Homocysteine level will go down as it should.

Our bodies create Homocysteine as part of our normal function - we also have the methylation cycle that ensures that too high a level of Homocysteine which would be toxic to us is not a problem as it is reduced in this cycle which is dependant on B12.

Our problem occurs when we do not have enough B12 absorbed or getting into cells to make sure the methylation cycle works efficiently.

Re heart issues, I had the chest pain (a symptom of B12 deficiency) seems to have gone now since I have been taking 5000mcg of B12 supplement consistently for 12 months. (still have other symptoms tho)

NHS won't give me injections - because:

When I started with symptoms burning mouth I researched and I asked GP for B12 test as all googling pointed to B12 deficiency. She told me it was normal - level was 191 (I now ask receptionist for a print out of any blood test I have) Obviously I wasn't told my level, just go on your merry way. So i started supplementing anyway and the symptoms went. But not wanting to over react and as the GP hadn't seemed unduly concerned, I was not consistent with supplementing. Last yr, 6 yrs later I started with massive symptoms but my Total B12 test showed low but normal range because I was supplementing.

'B12 deficiency' website has tons of info and a chart of many symptoms across many pathways in the body. Many pathways are affected when deficiency becomes prevalent because B12 is so critical to major function of the body.

i was told that if damage has occurred eg symptoms noticeable that it takes a Total B12 level of over 1000 - 2000 before the body can start to heal (and that's if the active is at normal level of 20-30%)

GP not interested despite family history. My father had to have B12 injections from age 50 (when discovered) and my grandma, his mum, had P Anaemia.

So yes, re heart. I have not learned what function B12 plays in the heart and so can't comment. Presumeably to do with haemoglobin content of cells. B12 is integral in the formation of haemoglobin (along with iron) Lack of B12 can cause red blood cells to enlarge/maybe this would alter flow or heart function. Also smaller weaker cells not rich in heamoglobin (which can happen with B12 deficiency with other underlying issues) must similarly alter heart function?

I know from listening to US Dr Tom O'Bryan. He spoke of how his father died far too early of a heart attack with no known heart issues/history. On postmortem no reason could be found for the heart attack. Being a doctor and knowing the pathologist - Dr O'Bryan pushed and pushed for further investigation. It was eventually found that his father's heart function was compromised due to a previously unknown vitamin B12 deficiency.

Dr O'Bryan bitterly explained that his Father died because of a vitamin defiency that cost pennies to reform. Dr O'Bryan related this info in interview as one of the reasons why he now put all his efforts into providing us out here with the cutting edge health information we need to be proactive and not be reliant on tunnel vision/ beind the times medical practice.

But if you want further info, I know British GP Dr Malcolm Kendrick has listed homocysteine levels as a major contributor to heart disease. He has a blog post, which is now at 48 posts, 'What causes heart disease' Dr Kendrick is not just a practising GP but was on the board of the European Board of Cardiology and advisor to NICE. also the author of 2 books 2007, 'The Great Cholesterol Con' and 2016, 'Doctoring Data' Doctoring Data being a real eyeopener and laugh out loud book. You'll never look at the NHS system quite the same again if read. So not your average GP then.

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Hello LynneG. Many thanks for that most comprehensive answer. I will need time to digest all of this, but my first reaction is: how can you tell what percentage of the 'active B12 test' is 'Total"? As I wrote in the new post I placed on this site today my active B12 test result was: 256.0 (25 - 165). So a very high figure. But how can one tell from this what the percentages are? Do you know if a high active result can result from taking high doses of oral B12? Many thanks again for your help.

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Hi Frank, Usually when you have a private serum Active B12 test they also test your serum Total B12. So you can work out the percentage.

When I had my Active test. Please note that the measurement in the private lab is in pmol/L

Whereas my NHS results are in a different measurement ng/L

However that is not important unless comparing different lab results

My Private Active B12 test result was 209.6 pmol/L (25.1 - 165) so recorded as high

My Total B12 included in the test was 392 pmol/L

My Folate also included was 24.88 nmol/L

20 - 30% is the normal percentage ratio of Active to Total B12

As you can see from my results 209.6 active as a percentage of 393 total is far greater than 30% (normal)

30% of 392 would be 117

So my Active is really high at approx 50% +

The question is Why! How!

Is this the reason why I have B12 deficiency symptoms?

I haven't been able to get an answer to my questions

If you do, Please let me know Frank - thanks

But from what I can ascertain from some research / commonsense guess work/ and a couple of others on this site who have the same issue

Is that there is no problem with B12 absorption but that there could be a problem with transport of Active B12 into cells. which I believe is called the TC 11 transport function

The measurement of B12 Total and the differentiation of what is Active B12 from within the Total test is just a snapshot in time measuring what is in your blood at that single moment.

It could mean that Active B12, which is the functioning B12 cannot get into cells and so is building up in the blood. Obviously if this is the case then this is not good.

I haven't had another Active private test since, as it threw up more questions than it answered. Others on here with a similar issue state that they seem to think that it is best to take high suplementation of B12 and hope that some is forced into cells

I asked my GP/s who state that I have more understanding of B12 than they do!

One GP agreed to refer me to haemotology so that I could ask questions from hopefully more expertise. However, Haemotology refused my referral because my B12 was in range

It would be brilliant if you are under a haemotologist, if you could ask what could be happening if you have a higher than expected/build up of Active that is useable B12 in your blood.

But me being cynical, I think he/she would just blame it on your supplementation without thinking further.

However it maybe that you don't have a higher than normal percentage?

It could be that your Total B12 is higher than normal range because you are supplementing with B12. So it could be that your measurement of 256.0 Active is only 30% of your Total serum B12.

If your Total serum B12 is 850 then 256.0 would be 30% Active

You would then show higher than normal range Active because your Total serum B12 is higher than normal range. Which is not a bad thing. As said before Japan has a normal range of Total B12 of 500 - 1300. Dr Daniel Amen (psychiatrist) states we should all be up high /top of the range. That when it comes to B12 we should all be 'Top of the Class'

Please post your Total B12 measurement :)

As for whether supplementing / or injections can affect the percentage of Active B12 in the Total, in our Blood stream. I really don't know. I think that is something only an expert/ haemotologist can answer.

I know folks on here state that supplementing will skew results. But as the measurement is just a snapshot in time, I would not think that this can affect the percentage of active to total. Surely supplementing would just raise the total amount of B12 in blood. Which is why folks advise stopping supplementing for 6 months if can, in order to get a recording of a more normal level that the individuals serum B12 would be without supplementation. Because otherwise Total B12 would test higher because of supplementation and the patient would not qualify for NHS intervention/injections. None of that should affect Active percentage tho I presume.

What possibly could affect perhaps. And I am just making this conclusion up, is that when supplementing, many of us take a methyl form of B12 which does not need conversion by the body. Perhaps that could be the cause of the higher than average percentage of active to Total ratio? But in reply to Julie's question on here Gambit states that all forms of B12 have to be converted - which is at variance with methyl B12 supplement manufacturers, but I am sure Gambit is to be relied upon rather than manufacturers - so that rules that supposition out

Frank, have you got a headache yet, with all this LOL I have ;)

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Well... so much to digest here don't quite know what to say. No, I don't have a headache yet, but the night is young... On total (or sarum) B12: my result was:

2132 pg/ml (in Russian) (160 - 800)

Active B13 was:

256 pmol/l

But not sure what this pg/ml refers to.

Anyway, this active figure is about 12% of the serum B12. Way below what you say is normal (20 - 30%) . But perhaps the serum figure is not pmol/l so not comparing like with like?

I am advised by other very wise people on this site that my problem is 'functional B12 deficiency'. So lots of B12 in blood but not going anywhere or doing any good in my cells. Possibly 1% of the sublingual I take is actually doing me some good. This is why I am now planning to have injections - as soon as I check out a few videos on how to do this as I haven't a clue. The bigger picture - why do I (or you) have this problem - is even more mysterious. Do you have any ideas on what tests I might now have done? Thanks again for your most comprehensive reply.

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Hi Frank, I have just looked up a conversion chart, it seems 256pmol/l equates to 346.97 pg/ml. But that still puts you below 20% Active ratio

pg/ml converts at a ratio of 1:1 to ng/L - so the same

I mention ng/L because that is the lab measurement I understand re my NHS total B12 serum test and I know that the normal range is 197 - 750ng/L I believe that is right. Not that I think that 750 is high enough but it gives me a bearing on your

Total serum measurement of 2132. So that would be high total B12 serum level with a percentage of active B12 (useable) that is low.

Of the people who have advised you on this site that have said you have high B12 but is not functionally active, have they given you any advice as to what you can do about this may be? How we can improve Active B12 levels?

Good Probiotic supplementation at a guess. You have to have a good balanced microbiome for beneficial bacteria to produce B12 and other vitamins/nutrients

Try liquid probiotic: microbz Bio Live Dark

Gluten/grain free diet

I would test homocysteine blood levels. A marker to denote whether B12 is functionally active along with sufficient other B vits. With the added bonus of determining brain and heart health

MMA test - there is a blood and urine test.

Intrinsic Factor antibody blood test

There is a peripherral blood cell test (I will look up the details)

Full Blood Count:

MCV size of red blood cell (RBC) B12 deficiency can cause larger than normal red

cell

but not definitive dependant on iron status. Low serum iron (not ferritin which

is storage) can cause small red blood cells/so the low iron, low B12 effect on

RBC size can cancel one another out)

MCH quantity of haemoglobin in RBC (B12 significant in haemoglobin production)

MCHC quality of or concentration of haemoglobin in RBC

Serum Iron level tests

Here is a quote from an article:

"More Accurate Testing Than Blood Level B12 Tests

Dr. Chandy’s dilemma points to the basic flaw of blood level testing for B12. Despite “normal” readings, he gave his patients serious B12 supplementation by injection and they thrived.

The blood serum test indiscriminately includes both types of B12: human-inactive and human-active. Only human-active B12 should be counted as it is the only B12 that is metabolized throughout the body’s cells and even DNA.

If your blood serum test is normal or better, 150 to 200, and you are still experiencing symptoms of low energy, neurological issues, or generally bad health, indirect testing should be tried.

Testing urine for high amounts of Methylmalonic Acid (MMA) is more accurate. MMA is high when B12 metabolism is low. Another indirect indicator is a high homocysteine. Without sufficient human-active B12 and other B vitamins, homeocysteine doesn’t get broken down enough.

High homocysteine levels are considered better cardiac risk markers than LDL cholesterol counts by up-to-date medical practitioners. Both MMA and homocysteine have inverse relationships to B12 levels and serve as accurate indirect tests for human-active B12 levels.

But What If You Can’t Get Those Tests?

In my opinion, it won’t hurt to “self medicate” with B12 if all that testing is beyond your financial means or you don’t have access to cooperative medical practitioners. I once did this in Mexico for a few months using disposable OTC syringes. Probably the worst that could happen is – nothing happens! Which means your symptoms of low energy and neurological distress are based on other factors or are part of an actual autoimmune disease that should be given attention.

There are three types of B12 used as supplements: cyanocobalamin, hydroxocobalamin, and methylcobalamin. Of these three, most experts agree that methylcobalamin is the most beneficial.

Unfortunately, the most commonly used B12 for OTC supplements and doctors’ injections is considered the worst – cyanocobalamin. It’s been observed to be counterproductive by diminishing the body’s methyl groups necessary for assimilating B12. I have no idea what Dr. Chandy was using.

Look or ask for methylcobalamin to supplement vitamin B12. It can be injected or applied with a body patch or sublingual tablet for direct absorption into the blood to avoid digestive issues that impede B12 assimilation. It’s also wise to maintain a decent level of the rest of the B complex while going heavy with B12.

Considering the ignorance surrounding B12’s overall importance and supplementation, we need to take responsibility for it ourselves."

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Hello Lynne. Thanks as ever for such a detailed response.

A brief answer to your questions:

1) I have not been given any specific advice yet to the problem of functional deficiency, but I have read on this site and others if the reason is low stomach acid (not PA as such) then this problem has to be addressed directly. For several weeks I have been taking kefir every morning - it is the local (Russian) preferred probiotic and is very good - certainly better than yoghurt. I certainly advise you to get hold of kefir in the UK - nowadays it can be bought at any Polish food shop and will certainly be much cheaper and fresher than any probiotic bought on the internet. In addition I take a large spoonful of apple cider vinegar each evening before supper. I hope that these measures will help to increase stomach acid.

2) I have already had an IFA test. It was negative.

3) This business of the percentage of active to total B12 is still quite puzzling for me. As you say my active level is an unusually low percentage of total (about 12% I think). But the active figure as such is very high: 256 pmol. Do you think that this fact and the negative IFA test rules out PA as such? I mean that presumably if I have high active B12 then the intrinsic factor is working, but that the complex process of converting food into B12 is failing at some later point in the process?

I will try to get these MMA and Homocysteine tests done if you think this is the next logical step in this journey. I suppose i should also check other possible causes - gluten, thyroid etc. Though i don't appear to have any symptoms of any of these problems. Meanwhile I have bought cyanocobalamin already so I think I should try that first, though I was disappointed that you find it can be'counterproductive'. It is at least easy to buy here in Moscow - without prescription and incredibly cheap! Will let you know how the injections go when I finally get round to watching some IM videos! Thanks again!

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Hi Frank, thank you for your information and insight, it is really much appreciated :)

The probiotic formula that I use at the moment is a brewed liquid as explained by the manufacturers. It is brown sugar with many other minerals/nutrients for example pomegranate, noni, lemon and many herbs and spices, minerals eg. sulphur from MSM - a host of stuff which the added strains of bactera feed on and ferment. So a little like an expensive manufactured form of Kefir.

I have been wanting to use a fermented drink for a while now and have almost ordered/even bought a couple of organic Kombuchas (fermented green tea base) but then read an article by Donna Gates (Body Ecology) who I respect (has massive experience for over 30yrs with gut bacteria - her focus with pregnant mums and newborns specifically)

She never recommends Kombucha as the strains of bacteria mix is wild and so not controlled/as in you do not know what you are growing in your ferment as wild)

Which put me off

Kefir - we have a brilliant company called Chuckling Goat in Wales UK which make Kefir obviously from goats milk. Brilliant reviews re health issue reversals. Goats milk is far better than our dairy which is antibiotic/hormone ridden.

However I am dairy free (apart from butter from grass fed herds) as I have autoimmune. So I really haven't taken the leap of faith re goats milk yet - still on the fence. I have thought about coconut water kefir but still have concerns re ingredients as I am gluten/grain free

But I totally agree with you - Kefir has got to be better than standard probiotics. Sorry I don't seem to have got rid of the bold type.

Yes I too use loads of cider vinegar containing the mother. When I first started using it was difficult to get in the UK but now most supermarkets sell organic unfiltered - so progress. I mix cider vinegar with dried mint and put liberally on most meals. If doesn't go with the meal, I use lemon juice - quite often both. And Jacket potatoes are great with a chunk of butter, Himalayan salt and cider vinegar poured over

I would think like me, that you probably don't have an absorption problem.

So probably stomach acid isn't the issue in your case/ however the cider vinegar effort you go to is going to provide optimal healthy digestion :)

I will post an article explaining Absorption Process of B12

I would think that the normal range of active B12 is determined upon from a much lower Total serum B12 than you have. So it will appear high when in reality it is a lower than expected percentage of the whole.

But this should still mean that there is that good /effective amount readily available to be transported into your cells.

Possibly you may not produce as much active B12 as would be expected but because you have been proactive and increased your total B12 far above normal range then you still have a really good amount of useable B12.

Which seems to endorse the theory that we should get our Total blood level of B12 up high way above normal range, especially if have symptoms in order to overide any anomalies we personally may have in the cycle.

I would suggest that if your Total B12 was within the normal range/possibly low normal then the amount of active B12 as a percentage if only 12% would create a deficiency and eventually over many years - noticeable symptoms when deficiency has made things critical.

Being deficient in B12 does not create symptoms overnight - but years of defiency creating damage. When damage is severe enough to alter function, we notice. So it stands to reason that increasing the amount of active B12 /in otherwords getting sufficient in to cells will stop you being deficient and normal function can resume.

BUT if you are just getting a normal supply into cells for once that is great but it is used up on a second to second ongoing basis for normal activity requirements. So if damage has occurred (noticeable symptoms) then your body needs more than a day to day supply to start healing the damage. And lots of time to heal the damage as well. How long did it take us to get into this mess so how long will it take to heal - maybe years.

My situation appears to be different because I have a much higher than average Active to Total ratio. Which may indicate that something is stopping the useable B12 being transported into cells :(

I am not medically trained but I just try to look at things logically. So please realise that I am just looking at things from a certain perspective without medical training.

Because of developing Rheumatoid Arthritis 22yrs ago and not wanting to take mainstream Disease Modifying drugs that are shoved at you, I have had to learn how I can support my own health. So I have learned so much from a nutritional perspective, particularly in recent years since the emergence of Functional Nutritional Medicine/doctors/practitioners and access to their lectures on the internet

active-b12.com/vitamin-b12-...

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Hello Lynne. All very interesting. I think you summed up the problem of getting enough B12 on a daily basis very well. My own impressions, based entirely on my personal experience and not on what I have read here, is that if one has B12 symptoms then the normal reserve of B12 in the liver is long gone. This means that one is completely dependent on daily intake of B12 to survive. It is possible in theory to do this with sublingual B12 as I do, but since our daily lives change from minute to minute, with certain environmental and other factors taking a toll on our B12 total (air pollution, stress, alcohol - and no doubt many other things) then one is continually on the edge and the minimum acceptable level is likely to fall at certain times, producing symptoms. In other words if one depends on sublingual alone there will be 'good B12 days" and 'bad b12 days'. The solution presumably is to again build up a reserve of B12 to protect against these daily fluctuations, which is where injections come in. I think that the body has its own mysterious way of regulating B12 when the supply is limited: the first symptom of mine to disappear when I first started taking supplements was pain in the left chest. I had had this pain for over a year and had seen cardiologists who could find nothing wrong with my heart. Within two weeks of starting the B12 the pain disappeared and has never returned. Presumably my brain, in its infinite wisdom, decided that my heart/chest should be the first recipient of B12 when it finally appeared in the limited sublingual form that I chose to take. The body truly is a complex and most wondrous thing...

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It certainly is :) And the more we humans learn, the more we realise how little we do know and understand. As with the Human Genome Project - once cracked we humans were going to have a grasp on everything , chuckle. When completed in 2007 was it? They recorded we had was it? 22,000 genes almost the same number as an earthworm! Something we don't understand there then.

i am so pleased that taking B12 oral supplements resolved your chest pain and hope you get on well with injections.

I take 5000 mcg of methyl/adenosyl sublingual form of B12. I appreciate your point about building up a necessary reserve and why you think it will be easier to do this with injections.

I wish you the best of luck and please keep us posted as to whether you do have a marked health improvement with the injections and of course the picture your homocysteine and MMA test may reveal. I haven't had an MMA test as yet but pleaseremember the homocysteine ideally should be around 6 -7 I think the normal range in UK labs goes up to 15. That may be average but it certainly isn't ideal. A low homocysteine blood level is important for particularly brain and heart health, so irrespective of B12 issues, it is a very valuable test and monitoring value.

Good Luck with the injections :)

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Hello Lynne. A quick update, and more questions I am afraid... Yesterday I had my first injection. It was 1 mg of cyanocobalomin sine that is all I can get hold of here in Moscow. Self injected since I could not get any help from local doctors. It was easy - just followed the instructions on a couple of Youtube videos. No pain at all. On the other hand I can feel no improvement. I was intending to follow the loading regime I have read about on this site - 1 injection every other day for about 12 days, so 6 injections in total. But the instructions that come with these ampules suggest one injection of 1mg each day for "1 - 2 weeks". I am now minded to do that - which means a second injection today. Do you have any thoughts on that?

On the tests you suggest: I have made inquiries at the usual private hospitals I use here in Moscow and they do not do the MMA test. I may be able to have it done back in Ireland, where I partly live, in mid April. The homocysteine test is possible though, so I will have it done tomorrow I think. Can you just give me an idea of what a high result might mean and what I can do about it?

In general, and please forgive my continued ignorance of even the basics of B12 problems: why do think I don't have absorption problems? Is it because of my high active B12 level? This suggests high B12 in blood but not cells, is that correct? What then could be the cause of high B12 in blood not getting in to cells?

By the way I look forward to seeing your article on the B12 absorption process!

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Hi Frank just seen your last post - will check later

But this free Summit is a must to watch. Playing now I think Episode 1 & 2 may have stopped which are essential viewing re mitochondria and microbiome and health. But always have a replay at the end of the summit to listen again or catch episodes missed. The next episodes will no doubt be excellent. Some to notch cutting edge practitioners /scientists/researchers involved. You just register your email and links to episodes come through everyday. A chance to learn a great deal. Sorry if you know this stuff humanlongevityfilm.com/epis...

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Hi Frank, sorry late getting back to you. The article on the B12 absorption process is the link highlighted in blue on my post below the inexplicable bold type :)

The Homocysteine test - here is a link for an excellent article. I will post another from the same site that explains how to go about lowering the level if too high. ideally should be 6-8 foodforthebrain.org/alzheim...

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Hello Lynne. Many thanks - have just read it. Very interesting and well argued article. I will have the Homocysteine test done on Monday I hope, even though I have been on high B12 doses for some time . I am afraid I couldn't find your article on B12 absorption...

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Have posted 2 articles now from 'food for the brain' The second how to lower.

I am now looking for the omega 3 link/and B12 function.

I didn't think you/I have absorption problems because our total serum B12 is high from oral supplementation, so I am just presuming. That is absorption into blood stream that I mean. Not cells.

here is the link again that explains the B12 absortion process really well I think

active-b12.com/vitamin-b12-...

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As for injections I have no experience of. Apart from on here. Contact this support group for B12 injection info. This is a charity set up by retired British GP Dr Chandy (contraversial B12 use on his patients and was forced by GMC to stop prescribing) They will certainly have lots of info re injections b12d.org/

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Good luck in Ireland, hopefully you will be able to get the MMA test. I must ask again for at my GP. Seemed reluctant when I asked for but as I was having other tests I let it pass. You are braver than me injecting, well done :) Keep in touch :)

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This additional article from 'Food for the Brain' gives specific advice as to what to take to lower homocysteine levels. I appreciate this organisation focuses on healthy brain/Alzheimers/dementia etc. But B12 issues affect the brain. The issues and resolutions are the same. Note the 1st nutritional components of reducing homocysteine are B12 and B vits. Omega 3 fatty acids also are essential - not sure which article explains, will find and post additionally. So this is the second 'Food for the Brain' article foodforthebrain.org/alzheim...

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Thanks Lynne. have read it all - most helpful. Do try to self inject - it is easy and not painful at all if you don't don't blunt the needle when extracting the juice... as I have done several times.

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OOps bet that was fun. Maybe I will in the future :)

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Thank you so much for your response. Incredibly helpful.

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Thank You :) Please see my above reply to Frank.

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P.s in many EU contries b12 is not on perscription for jabs as its literally that harmless and cam be got in most pharmacies... but i understand your worry , i had the same until i relised it was definitley b12 and i got my legs and lungs back :) now the worry is replaced by anger at old doctors but oh well focus on the good :)

Oh and i just saw time frame question on jabs.....personally i noticed diffrences in breathing and heart after first larger dose (stabing pain changed to horrod disconfort and breathing became slightly easyier.... this gradually improved over maybe 3 or 4 months and now i only get doscomfort or pain very rarley im chest and heart)

Walking wothout chair dodnt really start hapoening well fpr maybe a month then it went to a kane and now no walking aids... but i cant give accurate times on that as it was very good day bad day and so on... balamce is much better

Comfusion amd "fog" is still very much there and bad but it is slightly better than it was so it is healing i think.... just very slow...old memories begining to return... kind of

Shakes always improved after injection but returned quick...rigjt now there very rare but a few weeks ago i had a bad day with burning bones and shakes... but again rare and i missed jab

Mood is much better but its one of the first things people notice change near jab time (pherhaps why gp thought bipolar) mood is what my friends use to check if i renmbered to have b12 actually... well that and if i start gasping chest holding or tremors ... but mostly mood

Sorry ive gone on a bit havent i?

Appologies i just renember how i was fine on every 2 month theb suddenly after 20+ years it all changed and how scary and unpleasent all was (especially with gps ignoring you and even lying saying b12 will give cancer and so on) and kind of still is so im trying to be clear and helpful :)

everyone differs though and my experince is not yours, my times i state may be a bit messy as im a confused foggy chap at the best of times , i hope things improve for you as they did for me andi hope you feel better soon

*martin hooper has some good books that helped me with worries* hope i spelt his name right

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This morning was my 4th injection in a row. For the first time ,after many years, i felt human again and good for a man at my age(33 now). I walked 5 miles, but i must admit that now i feel a little tired and my eyes twitched(that's a bad sign) for 30 mins but now stopped again.

B12 is safe. I will do 10 injections in a row and then 1 every week. If i feel tired or my symptoms return i will do more. How many more? Until i feel good. Although i feel good i feel a little sad for all the years i lost feeling tired. Literally i lost my prime years. It was that simple to get well...

Don't accept feeling bad. If really b12 makes you feel good, do as many as you can.

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Thankyou. Is it okay to take every day to start of then? 🙏

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Yes its fine, often people start with loading jabs which is every day or every other day....whats usually recomended i think was loading jabs for 2 weeks or so then as symptoms show....i wound up a actually needing one a day to 2 days anyway... but at first it was less regular.... after the loading jabs... partly as rationed as got from abroad..and probably as i work now so use up energy very fast and so on ..mind you it was needed that much before job so.. and didnt really move much in the healing bad timess... there probably is no real reason ..,ill stop having a vonversation with myself now as it matters not.. just do as symtpoms show really..that note i now really have to make sure im taking my other vitamins regularly (geuss as b12 does its job other stuff is used up)

Id definitlely say keep a dairy so you can track improvment... fpr instance now as changes are more minor (compared to breathing, agony, walking it may be harder to notice slight memory improvments or changes) it definitley helps to look back and see how much better things are :)

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Yes. After my first injection i felt some improvements for 10+ hours but after that, my fatigue, blurry eyes and all other problems came back with a vengeance. I thought that i can not wait 1.5 days to do another injection. So the next morning i did another one. And i felt better. And the next morning i did another one and i felt even better. After my 4th injection i was able to walk for many miles without fainting. Now in 3 hours i will do my 5th injection. The plan is to do 10 in a row and then one every week for 4 weeks. If i feel good, one injection every month. But if i don't feel good and my symptoms return i will do more.

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Hi Julie!

I've been having injections ever M, W and F for 3 and a half months now. I too worried like you at first but the worry faded as soon as I started feeling normal again. I recently tried cutting back to 2 injections per week but after 2 weeks noticed a return of a couple of symptoms so I have a feeling I'll be at 3 for good. I'm perfectly fine with that!

Btw, just be sure to keep an eye on your folate and iron levels. Keep them in range as well. I also found with getting frequent injections I feel better with drinking an Ensure daily. I prefer that to a multi vitamin. Vitamin D was a big part of my lacking energy as mine was low.

Good luck to you:)

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I know this from experience but you need to get tested for B12 deficiency the B12 active test needs to be done you can get it done at St Thomas's Hospital in London or they can post you a pack and they will return it to you within a week with the results the contact is hereGet your b12 ACTIVE level checked first at https: //nutris.viapath.co.uk an NHS LABORATORY 0costs £40?. ?best £40 quid you will ever spend

and you can't overdose on B12 as it is a water soluble vitamin if if your body thinks you have too much you will just go and pee it out

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Thank you for bringing this up toph. I have been emailing ST. Thomas Hospital regarding their Active B12 test as well. I am from the USA and this test is not available to us here. But I am grateful they have agreed to accept my sample.

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It stinks that only the UK AND USA stop this test..... Obviously due to pharmaceutical business. CANADAdo the test as well, most of Europe do it as standard not b12 serum.

STINKS TO HIGH HEAVEN

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It is very frustrating when the GP refuses to consider any other than 12 weekly injection schedules but if your GP does what mine did and looked up the licence for hydroxocobalamin and finds that is the doseage it is licenced for in B12 deficiency treatment it becomes clear what is going on. Even getting them to read the literature mentioned on this site doesn't get them doing anything different. My GP will not change my schedule even though he reckons I am right as the hematologist he consulted wanted me to stop injecting for 6 months to prove I was deficient in the first place. My GP is not in a position to challenge thus and he cannot get the senior partner to allow him to challenge it as that one hasn't had a new thought cross his brain since he graduated.

Sadly they are all frightened of being used which cannot happen if they have followed and official guideline. We are fortunate in being able to ignore all of this as, at the moment, we can get our medication from Gemany.

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No its water soluble do you no harm

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For the record.

All forms of B12 used to treat B12 problems (absorption or metabolism) are artificial.

The process for getting B12 from your blood into cells involves separating off binders (cyano, hydroxo, methyl or adenosyl) to bind with transcobalamin. The methyl/adenosyl compontents are then recombined in the cell depending on what the cell needs to do with the B12. It is true that some people do have problems removing some binders but this is not related to MTHFR but other genetic variants. MTHFR variants affect the processing of folate into methylfolate. I don't know enough about the biochemistry of folate to be able to say whether the binders actually work in the same way as with B12 and there does seem to be some benefit for people with certain variants in using methylated forms of folate. However, MTHFR is only one genetic variant involved in processing folate and B12 and methylated forms can interact badly with other variants, eg some COMT variants mean methyl B12 can cause problems with neurotransmitters and leave people feeling very unwell.

There is a lot about interactions of genes and their effects on the biochemistry of individuals that isn't known. This means that personal responses to different forms of B12 and different forms of folate can vary - as with responses to other medications. This means that any claims that one form is better for everyone should be taken with a huge pinch of salt.

Whilst homocysteine can be raised by lack of B12 - it is also raised by lack of folate and may also be raised by other factors. MMA is another secondary measure of what is happening with B12 in cells but can also be raised by other factors (eg liver and kidney problems). This means that all these tests need to be evaluated in a context that enables other causes to be ruled out.

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Thank you for the info Gambit. I totally agree that we need the bigger picture and that GP's being soley reliant on a Total B12 test taken in conjunction with a serum folate is far from good practice either infact I would consider malpractice. Yet most GP's in the UK haven't even heard of the homocysteine test let alone know how to order it.

I think the homocysteine test is another rung in the ladder/picture to see what may be going on and is available with the NHS. Enables understanding of what may be happening with B12 and if is higher than 8 a very big nudge for the patient to be proactive and to get the level down. And should be seen as a test that can be used to enlighten the patient and doctor to form the bigger picture. Without the patient being compromised and at a loss because they cannot afford to resort to pay for the Holo test privately.

Functional Nutritional Doctors see the Homocysteine test as one of the key tests of preventative and actionable medicine and that, hopefulyl will be recognised to be part of the routine arsenal of all practitioners.

As Folate is crucial to the activity of B12 then high homocysteine would then be an indicator as to a compromised methylation cycle one way or another would you not agree :)

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homocysteine is available on the NHS but not through GPs - it would require referral to a hospital - which I think is to do with the conditions under which the test generally needs to be done.

As holo-T is a different test and is a serum test- also known as active B12.

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Yes Holo is the active test - that's what I clarified: Active or it's otherwise known as Holo

To answer your thoughts on Homocysteine

I asked my GP initially for the Homocysteine test and she requested the test. I go the phlebotomy dept for my blood being drawn as it needs to be in the labs to be tested within the half hour - hour. This for me is convenient because when having blood taken at a hospital you don't need an appointment it is just drop in.

I have the homocysteine test every year through my GP (different GP's)

I think it is a very appropriate test for anyone with B12 issues to have taken to get the 'bigger picture' re B12 function.

And in addition it being a marker for Alzheimers/Dementia risk a very valuable test to recognise whether someone should be proactive, likewise heart disease risk.

I think it very wise and proactive for everyone to request the test

And would hate for anyone being put off from requsting from their GP

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Could ferritin levels play a part ?

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