Any good science on problems taking Vitamin B12?

Sasha

Sasha

Senior Member (Voting Rights)
A blood test has shown that I'm deficient in B12. The possible cause is being investigated but meanwhile, my doctor wants me to go on high-dose B12 for 3 months.

I started on pure cyanocobalamin drops (no additives, just in water) and worked up to the dose of 1,000mg/day gradually over a week. After about 3 weeks on that dose, I gradually became even more dog-tired than I already was and so I stopped.

I stopped because I've tried supplementing with B12/folate before, on various versions of Rich Van Konyenberg's (sp?) protocol, and all three times, gradually got very debilitated, which gradually reversed when I came off them. I did those tests at a time when my symptoms were otherwise stable.

I'm aware that feeling worse after starting B12 may be a coincidence, or may be due to the underlying cause of the deficiency. I've alerted my doctor to the problem and am waiting for a response.

But is there anything I should know about B12 to inform the conversation? There seems to have been a lot of hype and confusion around the MTHFR issue on this but as someone without a background in biology, I don't understand it, and I don't want to present a load of rubbish to my doctor (or possibly be on the receiving end of a load of rubbish if this is something that they might not be up to date on, or unaware that some people might have problems).
 
I'm not familiar with fatigue following B12 supplementation. I don't think I would have asked a GP or dietitian about MTHFR, you're likely to either be preceived as someone believing in rubbish or be told a lot of rubbish.

What type of B12 did you take following Rich van Konyenberg protocol? By a quick google search it is a methylation protocol so I doubt it was cyanocobalamin which is considered to be less bioavailable than others. Could be worth mentioning to the GP if it has happened previously with other types of B12, and if you were deficient or not when it happened.
 
InitialConditions said:
This article debunks a lot of the MTHFR/detox stuff. May or may not be useful in your case!

https://sciencebasedmedicine.org/dubious-mthfr-genetic-mutation-testing/
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Thanks! Hard for me to gauge that info and the organisation that's putting it out. The author of that article says that leaky gut is a problem 'fabricated by naturopaths' but Harvard Medical School, for instance, says otherwise, and I had thought that the concept was now accepted. There seems to be a lot of arguing by authority.

I'd be very happy to not have to think about MTHFR but I'm not sure that that site is authoritative and I can't understand enough of the bioscience myself in order to judge.
 
Midnattsol said:
I'm not familiar with fatigue following B12 supplementation. I don't think I would have asked a GP or dietitian about MTHFR, you're likely to either be preceived as someone believing in rubbish or be told a lot of rubbish.
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That's my fear, but I simply don't know what to believe and am not equipped to make a judgement.

FWIW, I was invited to take part in Dr Nancy Klimas's trial of folate (?) or B12 (?) on the basis of my MTHFR mutation but was uninvited when I said I was in the UK. I don't know what Dr Klimas's thinking is on this now.

What type of B12 did you take following Rich van Konyenberg protocol? By a quick google search it is a methylation protocol so I doubt it was cyanocobalamin which is considered to be less bioavailable than others. Could be worth mentioning to the GP if it has happened previously with other types of B12, and if you were deficient or not when it happened.
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I don't have my notes but IIRC, cyano and hydroxy were considered less available and adeno and methyl were the ones to go for, so it would have been one of the latter.
 
I have B12 deficiency and self-inject adenosylcobalamin about every eight or 10 weeks, and also take a folate tablet a couple of times a week as insurance. I've been doing it for a good few years, and at checkups my levels now test within normal range.

I noticed soon after starting that I always feel very tired the next day, but there's no ongoing effect beyond that. I don't know anyone else with a deficiency, though, so I can't compare notes.
 
Sasha said:
Thanks! Hard for me to gauge that info and the organisation that's putting it out. The author of that article says that leaky gut is a problem 'fabricated by naturopaths' but Harvard Medical School, for instance, says otherwise, and I had thought that the concept was now accepted. There seems to be a lot of arguing by authority.

I'd be very happy to not have to think about MTHFR but I'm not sure that that site is authoritative and I can't understand enough of the bioscience myself in order to judge.
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I agree. It takes a very skeptical line, and science moves on, but I think much of it is probably correct.
 
InitialConditions said:
I agree. It takes a very skeptical line, and science moves on, but I think much of it is probably correct.
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I think the problem with people presenting themselves as 'skeptics' is that they can get locked into an opposing stance on controversial claims and become incapable themselves of assessing evidence objectively when agreeing with the claim would threaten their 'skeptic' identity. Science does indeed move on but as evidence accumulates it tends to move from unclear evidence to clear evidence, rather than from evidence against to evidence for. I'd rather hear from people who can tolerate ambiguity until there's enough evidence to see what's really going on.
 
Sorry this is something of a tangent, but we do need good information on the relationship between ME and vitamin B12
  • confirmation that the incidence of B12 deficiency is higher in ME than in the general population
  • if B12 deficiency is associated with ME, what is the causal relationship: is it incidental such as ME is linked to poorer diet which causes B12 issues, is it indirect such as ME causes gut issues (IBS type symptoms, or food intolerances or leaky gut) which then impacts on B12 levels or is it that the presumed underlying ME disease process impacts on the absorption or metabolism of B12?
  • does B12 deficiency in ME behave in the same way as idiopathic B12 deficiency in the general population necessitating life long supplementation or does it fluctuate with the ME?
  • establishing what level of supplementation is appropriate, asking is supplementation just to compensate for any observed deficiency, so any ongoing supplementation is only to prevent return to deficiency, or is supplementation treating more than just the symptoms arising for the deficiency and relevant even in people with ME that are not B12 deficient?
  • establishing what is the best delivery method (methods) (is there any general research on B12 deficiency unrelated to ME specific issues on the best ways to treat ongoing B12 issues).
  • do the drug/medication intolerances some people with ME experience impact on vitamin B12 supplementation?
Personally I think it is likely that the incidence of B12 deficiency is higher in ME and it is more than just people with ME at greater risk because of poor diet. Consequently I argue that everyone with ME should have their vitamin levels test every year or so. At present there is no evidence to support B12 supplementation in ME other than to correct an existing deficiency or to prevent return to deficiency.

With my own deficiency I found once that had been treated, a six monthly injection via my GP was sufficient maintenance dose, but as my health deteriorated this fell apart as I have not managed to get the injections provided in my home. For me the injections effectively reduced the symptoms of the deficiency without any side effects, [added - improvement was almost instantaneous, certainly within 24 to 48 hours,] and as long as the maintenance doses were soon enough they resulted in no change in my observed symptoms. Currently I take over the counter oral supplements but have no idea of the relevant dosage or whether this helps or not. It is now five or six years since my vitamin levels have been tested.

It does seem at present, as experienced by @Sasha, that though identifying and treating B12 deficiencies ought to be very straight forward, there has been little done to address any specific ME issues.
 
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Sasha said:
Thanks! Hard for me to gauge that info and the organisation that's putting it out. The author of that article says that leaky gut is a problem 'fabricated by naturopaths' but Harvard Medical School, for instance, says otherwise, and I had thought that the concept was now accepted. There seems to be a lot of arguing by authority.
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I read the post about leaky gut and when the author went on to talk about culture-bound syndromes and apparently sees those as real compared to leaky gut and gluten sensitivity I'm not inclined to take the text written at the blog at face value. At least there is a heavy bias towards psych explanations.

Anecdotal, my B12 levels are high, sometimes measured at twice the highest reference range of the lab that did the analysis. At the start of my ME symptoms B12 was checked frequently, it would go down to the high ranges of normal when I felt better and increase when I had PEM. That particular pattern has disappeared and B12 has just been continously above normal the last years.
 
Peter Trewhitt said:
Sorry this is something of a tangent, but we do need good information on the relationship between ME and vitamin B12
  • confirmation that the incidence of B12 deficiency is higher in ME than in the general population
  • if B12 deficiency is associated with ME, what is the causal relationship: is it incidental such as ME is linked to poorer diet which causes B12 issues, is it indirect such as ME causes gut issues (IBS type symptoms, or food intolerances or leaky gut) which then impacts on B12 levels or is it that the presumed underlying ME disease process impacts on the absorption or metabolism of B12?
  • does B12 deficiency in ME behave in the same way as idiopathic B12 deficiency in the general population necessitating life long supplementation or does it fluctuate with the ME?
  • establishing what level of supplementation is appropriate, asking is supplementation just to compensate for any observed deficiency, so any ongoing supplementation is only to prevent return to deficiency, or is supplementation treating more than just the symptoms arising for the deficiency and relevant even in people with ME that are not B12 deficient?
  • establishing what is the best delivery method (methods) (is there any general research on B12 deficiency unrelated to ME specific issues on the best ways to treat ongoing B12 issues).
  • do the drug/medication intolerances some people with ME experience impact on vitamin B12 supplementation?
Personally I think it is likely that the incidence of B12 deficiency is higher in ME and it is more than just people with ME at greater risk because of poor diet. Consequently I argue that everyone with ME should have their vitamin levels test every year or so. At present there is no evidence to support B12 supplementation in ME other than to correct an existing deficiency or to prevent return to deficiency.

With my own deficiency I found once that had been treated, a six monthly injection via my GP was sufficient maintenance dose, but as my health deteriorated this fell apart as I have not managed to get the injections provided in my home. For me the injections effectively reduced the symptoms of the deficiency without any side effects, [added - improvement was almost instantaneous, certainly within 24 to 48 hours,] and as long as the maintenance doses were soon enough they resulted in no change in my observed symptoms. Currently I take over the counter oral supplements but have no idea of the relevant dosage or whether this helps or not. It is now five or six years since my vitamin levels have been tested.

It does seem at present, as experienced by @Sasha, that though identifying and treating B12 deficiencies ought to be very straight forward, there has been little done to address any specific ME issues.
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I imagine that we should be aware of B12 deficiency in ME/CFS by now if it were a problem. However, given that it can cause anemia and thus profound fatigue, it may not be surprising to see people with B12 deficiency misdiagnosed with ME/CFS if they have not been tested for it.

Additionally, I have often heard that vitamin B12 blood tests are unreliable and methylmalonic acid and homocysteine levels should be tested instead. I do not know whether any of this is accurate.

Rather strangely, my vitamin B12 blood level has always been at the upper end of the normal range but my folate level is at or below the threshold, such that I have been diagnosed with minimal folate deficiency on one occasion. Supplementing with either folate, vitamin B12 or both (all in methylated form) did not yield any change, whether positive or negative.
 
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cassava7 said:
Additionally, I have often heard that vitamin B12 blood tests are unreliable and methylmalonic acid and homocysteine levels should be tested instead. I do not know whether any of this is accurate.
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Homecysteine is non specific. It increases when there is deficiency in either vitamin B12 or folate, but can also stay in the normal range if one is sufficient in only one of the nutrients (so that a sufficiency in folate could mask a B12 deficiency, or the other way around, if one only looks at homocysteine). Methylmalonic acid is specific for B12.

Definitely worth checking out if one has deficiency symptoms and are in the lower end of normal (it can also be a problem at higher levels). Not sure how it is in other countries, in Norway it depends a bit on the health care worker if they are aware of this, despite that we have guidelines to check homocysteine and/or MMA when deficiency is a possibility.
 
Sasha said:
I started on pure cyanocobalamin drops (no additives, just in water) and worked up to the dose of 1,000mg/day gradually over a week. After about 3 weeks on that dose, I gradually became even more dog-tired than I already was and so I stopped.
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Sasha, if I remember correctly, Rich Van K didn't recommend Cyanocobalamin. I think it was Methylcobalamin and Hydroxocobalamin that he recommended.
 
Peter Trewhitt said:
Personally I think it is likely that the incidence of B12 deficiency is higher in ME and it is more than just people with ME at greater risk because of poor diet.
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I was at the high end of the range when my B12 was tested. Rich Van K believed that people with ME tended to have high levels of serum B12, but that our bodies did not use B12 normally, therefore, leaving us with symptoms of B12 deficiency.
 
A blood test has shown that I'm deficient in B12.
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Vitamin B12 is required to make red blood cells (RBCs). If you are deficient and then you supplement your body will start making a lot of red blood cells to make up for lost time.

Vitamin B12 is not the only ingredient of RBCs, obviously. I wish I knew what the full ingredient list was - I've looked but never found one. One thing that can run low in the initial catch-up in making RBCs is potassium. Low potassium makes people feel awful. Once the body has caught up with making the necessary RBCs the requirement for extra potassium disappears. I think the B12 and potassium connection was discussed (by Freddd?) on Phoenix Rising. A couple of links on the subject :

https://health-boundaries.com/what-is-a-healthy-b12-level/potassium-vitamin-b12-connection/

Vitamin B12 deficiency - Refers to low potassium

Sasha said:
I started on pure cyanocobalamin drops (no additives, just in water) and worked up to the dose of 1,000mg/day gradually over a week. After about 3 weeks on that dose, I gradually became even more dog-tired than I already was and so I stopped.
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I take methylcobalamin tablets, and occasionally buy some adenosylcobalamin tablets. I find them far less likely to make me feel awful than cyanocobalamin. (I've never tried hydroxocobalamin.)

Cyano vs Methyl vs Adenosyl vs Hydroxo

http://www.frankhollis.com/temp/Me Cn or HO Cobalamin.pdf

I recently wrote in a post that I don't have B12 deficiency or Pernicious Anaemia, which is true. But I do have Functional B12 Deficiency i.e. I need very high levels of B12 - way over the reference range - for it to actually do me any good. I absorb B12 from tablets with no problems. Functional B12 Deficiency may also be referred to as Paradoxical B12 Deficiency. (I'm not sure whether these are exactly the same condition or not.)

Functional Vitamin B12 deficiency in Chronic Fatigue Syndrome

Note the following quote in the Abstract of the above paper :

Maintenance of vitamin B12 functional activity is critically dependent upon functional B2 sufficiency, and hence resolution of CFS there must first be resolution of functional B2 deficiency before treatment with vitamin B12 can be effective.
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Vitamin B2 is also known as riboflavin.

I have never supplemented with vitamin B2 other than as part of a low-dose B Complex, so I don't know what a higher dose of B2 would do for me, if anything.

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I developed eczema a couple of years before puberty. I started developing spots at puberty. I continued to have both problems for 40 years, although they did vary in severity. It was embarrassing and disfiguring. When I raised my B12 very high for the first time (with methylcobalamin), I ended up with worse spots than usual (and more of them) and worse eczema on my hands and wrists for 2 - 3 weeks then both conditions went away completely for the first time in my adult life and they (mostly) stayed away. I do still get spots and eczema if I stop taking my B12 for a while or allow my levels to drop.

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Another thing that helped my overall health was taking methylfolate rather than folic acid.

Folate vs. folic acid: it pays to know the difference

https://en.wikipedia.org/wiki/Levomefolic_acid

...

Hope something here is of interest to somebody.

Edit : Added the links on B12 and potassium.
 
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