B12/Folic Acid and D3/K2 Supplementation

I have looked through that blog piece @Arnie Pye and I really don't find any of those statistical quibbles very relevant. The main grouse seems to be against the hype a press release or cover article. One gets used to that.The fact remains that an association with bad outcome is a red flag whether or not there is any evidence of causality.

 

Yes, but from the way it is written that looks like a researcher touting for business rather than a balanced review. Anyone can write a review and say that.

 

Association and causation aren't the same, as you obviously know. If someone gets liver cancer and their liver can no longer store B12 they may have a high level in the blood. There is no evidence to suggest that the high level of B12 caused the liver cancer. Instead the high level of vitamin B12 is a symptom of the patient's liver cancer.

I am not disputing that high levels of B12 can be a symptom of a serious problem. But it isn't evidence that high levels of B12 actually cause a serious problem.

 

I disagree. An association is evidence that there might be causation and for adverse events that is enough to advise against anything that might feed in to that.

It is exactly the same as for GET in ME. I have written to say that I think the evidence for GET being harmful is sufficient to withdraw it - on the basis of association, because in this context that is enough. I think we need to have a level playing field when it comes to CBT, GET and supplements. There is a lot of hype and bad research relain to all these things. I don't personally see any reason why the people funding the original paper here should have a vested interest in showing that high B12 is harmful. But the people selling B12 to people for all sorts of illnesses, including ME, for which as far as we know it is of no value, certainly do.

 

That makes sense but the author of the review seemed to be advocating more than that.

 

Sorry I have not read the study, but I would have thought that if high B12 was being looked at then homocysteine levels would have been checked and potentially mthfr/ mtr/ mtrr expression ?

Edit spelling

 

Yes, I was thinking of functional deficiency. I know one pwME in her early 20s who has had ME since 9, suffered horrendously in paediatrics and had neurological issues such as ataxia which were not fully explored by neurology, I suspect due to the CFS label.

With CFS diagnosis she has been gaslit for as long as she can remember. Her mum delved into 23andme and found that she is homozygous for one of the mthfr Gene's which cast new light on B12 status which was high. GP seemed to not be up to.much.

I don't know what dietary/ supplemental path they chose to follow bit there had been some improvements. It may be limited, but any improvement is welcome.

My daughter is compound heterozygous , but also has SNPs on mtr and mtrr which seem to be a counter feedback which keep homocysteine low.

Havnt really delved into this as not knowledgable enough ( did very limited DNA for dietary input which did make a lot of sense) .


I don't subscribe to B12 being harmless .
My aunt, who also has ME has never been able to supplement B12. It is as if her body is bring poisoned.

Last time she attempted this was under Optimum Clinic, so I suspect she had some testing indicating deficiency.

I don't know which version of B12 they recommended but she nearly fainted and went blind for 20mins after taking it - very , very scary .
In her youth she either vomited or had to run to the loo after taking it.

 

I've never heard of someone suffering from hugely severe reactions to B12 before, but then there is a first time for everything. There are four different kinds of B12 that people can supplement with. [Cyanocobalamin, Hydroxocobalamin, Methylcobalamin and Adenosylcobalmin] Your aunt might not be sensitive to them all. In order to allow the body to make use of vitamin B12 people need sufficient folate.

Anecdotal info : I have also read about people whose potassium levels drop significantly and suddenly when they take B12 in any form, but if they keep their potassium levels up before taking B12 they can cope with it with no problems or fewer problems. Apparently the problem is related to someone with low B12 who supplements will start a burst of red blood cell creation going, and this uses up potassium. When red blood cell count is normalised the extra requirement for potassium disappears. BUT I've also read that potassium and B12 don't mix for other reasons, but I'm not familiar with what should be done about it. I haven't researched potassium/B12 to work out what the connection is.

Some random links on the B12/potassium connection :

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

https://healthyeating.sfgate.com/vitamin-b12-potassium-7551.html

https://www.b12patch.com/blog/why-vitamin-b12-and-potassium-supplements-dont-mix/

https://healthunlocked.com/pasoc/posts/829795/newbie-with-b12-deficiency-and-potassium-problems

https://forums.phoenixrising.me/threads/b-12-induced-potassium-depletion.11180/#post-193790

https://www.doctorshealthpress.com/...ould-be-careful-with-vitamin-b12-supplements/

That last link mentions a condition called Leber's Disease (which I can't recall reading about before) and it can make people go blind :

 

Thanks @Arnie Pye , I will delve into these.
I suspect the potassium issue may be at the heart of it as she seems to have been deficient most of her adult life but unable to supplement.
I did initially think that she may not have been able to tolerate methylated b12 , though she cant remember the type of B12 involved. Many can't do methylcobalamin and have to work up from tiny doses.
Other b vits in multivitamins seem to be ok.

 

Thanks @Midnattsol .
Given her experience and complete lack of alternatives for severely affected my aunt is " stuck". She can't do phone/ screens much at all , and access to those knowledgable is difficult - not many practitioners here.
Having seen dietician input locally for other family members with cancer and diabetes , it is dire.

Our limited DNA was useful. Not too many Gene's tested, but some key ones and the results made a lot of sense re symptoms .
We use a nutritionist ( now too far away to travel but does phone consult) , whose background is a biochemist so she kind of " gets it". Gut is currently wrecked after recurrent ringworm treatment, so back to square 1 ...

I do think B12 availability is part of the mix, to maintain status as you say, many other cofactors and pathways are involved. Nothing is simple or we would have made far more progress than we have.

 

Late in this discussion because a “top University heamatologist” ’s eye (i went for immune deficiency tests) was recently drawn to my high B12 levels.
Emailed me several questions.
And no, I don’t supplement with b12 because years ago I noticed high levels where gp’s & specialists never looked at.
I thought: “don’t seem to absorb it” so never took it again.

For years, I found it ‘odd’ this high b12 but wasn’t aware of possible long term (neuro & other) damage and possible causes (if not supplementing).

Been reading/researching a bit.

Could there be a link with high MCV (bigger red blood cells)?

And a link with (high) albumin / (low) globulin ratio? (Time & time again).
“Rare“ it seems?
Dehydration / low blood volume is all I come up with till now.

doctor Edwards, you never ever encountered something similar in ME patients or others?
(Leukocytosis was - once again -confirmed too).

causes of high cobalamin could be a few things (auto-immune, liver, kidney, cancer ...) but also infectious or inflammatory disease. if I understand correctly?

awaiting further tests but was curious when you said you never encountered sth similar.

 

High B12 can suggest low glutathione - which was part of Dr. Richard A. Van Konynenburg's theory for ME/CFS which had a number of very long threads on PR

 

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The NICE committee looked at the evidence for drugs for ME and found nothing justifying recommendation. I would question how a consultant recommending these things can be 'reputable' to be honest.

In general terms:
I see no point in taking B12 if levels are normal.
Naltrexone may do no great harm but as far as we know it is just as likely to do harm as good.
Aciclovir, I would not prescribe without solid reason because it can produce serious adverse events. From what I can remember the evidence on antivirals for ME is pretty convincingly negative. If there was a useful effect it would have been demonstrated in an adequate trial by now.

There isn't a theory that holds water.

 

Anyone who wants to inject themselves with vitamin B12 can find out how and where to buy the necessary ampoules, syringes, needles etc from the Pernicious Anaemia Society forum which can be found here :

https://healthunlocked.com/pasoc

You have to join Healthunlocked to read their many forums. It's free.

You can't buy ampoules of Vitamin B12 in the UK, because anything which must be injected is prescription only, even vitamins. But there are no laws preventing people from importing it from France and Germany.

I had levels of B12 which were within the reference range. And my level wasn't even low in range. But I had a lot of symptoms which seemed to tie in with B12 deficiency. I started supplementing methylcobalamin (not cyanocobalamin) and the "teenage" spots I'd had for decades disappeared, and the eczema I'd had since I was about 10 improved by about 90%. Both the spots and the eczema got worse for a few weeks before getting better than they had been since before the conditions developed in the first place. My B12 level is now well over the range, and if I allow it to drop I get the spots and the eczema back.

I have tried to find the research that must have been done at one time to set the reference ranges for B12 and other nutrients but I've never been able to find it.

 

Spots don't seem to have much to do with ME though.

 

What do you mean by teenage spots? Is it a British slang?