My evaluation of which form of B12 is... - Pernicious Anaemi...

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My evaluation of which form of B12 is best.

WIZARD6787 profile image
14 Replies

The best form of B12 is not known. What is in fashion is different in different countries. Supply, what has been used before, difficulty storing, profit, etc. It is also the newest and that is often seen as better.

Hydroxocobalamin is often touted as the best. The only justification is that blood tests show it releases better in the body.

Cyanocobalamin is seen as 'bad". Perhaps as it has been shown that oral Cyanocobalamin is not as effective as injections in general.

Methylcobalamin is touted as being more bioactive and what is in the body naturally.

Adenosylcobalamin is the forgotten one as it is not available to inject.

I go with the only way to discover "what works for me" is to do a trial. I have no idea what someone is experiencing when they write what works for me. It is not knowable. Good enough does not interest me.

I experienced lifelong B12 deficiency so there is no measure compared to before.

So I have done many trials and four major ones. I have experienced improvement with each one including only oral Cynocabalamin and only sublingual.

I did not experience much improvement with injecting Methylcobalamin I did with injecting Methylcobalamin and SL Adenosylcobalamin.

I accept that some people experience improvement for years, up to 8. I do not except this has to be the only way just because no one has tried any thing different. My choice.

I am leaning towards seeing supplementation as nutrition/eating. I do not have to nor can be perfect I only need to come close enough so my body can adjust.

I am thinking of two things in my future. One is to increase injections to 4 a day and the other is to inject the three forms available and to take Adenosylcobalamin SL.

I do not expect any medical personal to bless my methods nor accept my results unless they are negative.

Feel free to point out any flaws in my evaluation. I would really appreciate that.

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14 Replies
jade_s profile image
jade_s

I see no major flaws in thinking except that cyano is equally effective for many, it just may need to be injected more frequently i.e, it doesn't stay in the body as long. We might be saying the same thing but quibbling over the word 'effective' lol.

There are other who alternate all 2 or 3. And others who do 3 to 5 mg per day.

Have you tried increasing folate or tried different forms? Sometimes the problem isn't b12 but folate.

Whatever you decide, keep doing the symptoms log :)

good luck!

WIZARD6787 profile image
WIZARD6787 in reply tojade_s

Thanks for that. I had forgotten about the Cyno. I'm also toying with the idea of days off to give my body a break from healing from more supplements.

Rexz profile image
Rexz

Wizard... Love your approach approach! My first year I was on Cyanocobalamin as I am in the US and that is the, you are correct, "cheaply" produced synthetic form of B12. That Cyano did not seem to work too well for me so around year one, ~Jan 2021, I switched to Methylcobalamin. I saw a huge difference after that switch. Methyl B12 is not as readily available here in US but can be ordered with a prescription from some compounding pharmacies.

Methyl also comes with some additional care and storage requirements and has a shorter shelf life. It must be stored in complete darkness and is more sensitive to heat so must be refrigerated.

Rexz

WIZARD6787 profile image
WIZARD6787 in reply toRexz

To be clear I did not indicate ""cheaply" produced synthetic form of B12 was inferior." Rather the best form is not known.

Rexz profile image
Rexz in reply toWIZARD6787

Agree that you did not indicate that and it is true, "cheaply" produced does not in all cases mean inferior. In this instance, however, the reason Cyano is prevalent in the US is cheapness. For sure if the medical industry in US found that Methylcobalamin was less expensive then that would be the prevalent B12 form in use. Cyano purports to do the job and it will, just that your body has to go through some extra steps to convert Cyano to Methyl. This does a couple of things, it produces a Cyanide molecule that your body must get rid of, and secondly it uses up a valuable methyl group that your body could use elsewhere, particularly in the Methionine Synthase reaction. So with Cyano your body is expending extra energy to convert to Methyl whereas Methyl is a natural bioavailable form of B12 ready to use. Also, when the Methyl group is eventually cleaved from the Cobalamin it produces something useful for your body, another available methyl group. I have papers indicating that Methyl is better for neurological healing than Cyano which is why I switch to Methyl. I will try and dig those out and post.

Hope this is helpful, Rexz

helvella profile image
helvella

I find it curious that it is rare to see anyone mention Leber’s in relation to cyanocobalamin.

Strikes me that, although its actual impact might be low in terms of case numbers, the severity can be such that every effort should be made to avoid these potential consequences.

Leber congenital amaurosis

Leber congenital amaurosis (LCA) is an inherited retinal condition. It's a rare eye disease that usually first becomes apparent in young adult life (10-30 years old) or rarely, earlier. It's the leading reason for inherited vision loss in children.

Leber congenital amaurosis can cause sudden painless loss of vision in one or both eyes. It can be difficult to learn that your child may have a visual impairment. However, with practical and emotional support, your family can adapt and help your child reach their potential.

guidedogs.org.uk/getting-su...

In the USA, this warning is prevalent:

WARNINGS:

Patients with early Leber's disease (hereditary optic nerve atrophy) who were treated with cyanocobalamin suffered severe and swift optic atrophy

accessdata.fda.gov/drugsatf...

WIZARD6787 profile image
WIZARD6787 in reply tohelvella

Interesting. As it is rare, it might be an issue with other forms of B12 and nobody knows.

helvella profile image
helvella in reply toWIZARD6787

Possibly. But I found out about Leber's expressly in conjunction with cyanocobalamin - and I'm fairly sure that the other forms do not carry warnings.

WIZARD6787 profile image
WIZARD6787 in reply tohelvella

The pharmaceutical scientists tend to keep on top of things but they depend on physicians to report. Most physicians would not put it together.

jade_s profile image
jade_s in reply toWIZARD6787

It seems to be specific to the cyanide molecule found in cyano-b12 and cigarettes/tobacco - and from what is hypothesized here, the inability to metabolize it.

journals.sagepub.com/doi/ep...

tandfonline.com/doi/abs/10....

helvella "I find it curious that it is rare to see anyone mention Leber’s in relation to cyanocobalamin." - do you mean on this forum or in general? It is periodically mentioned here, and I do think it's mentioned on all the cyanob12 leaflets at least in the US (though I haven't checked lately).

helvella profile image
helvella in reply tojade_s

Yes - I quote below from a 1988 paper which says that it is cyanide-specific.

I was particularly thinking of places like the NHS website and the MHRA documentation for cyanocobalamin products:

products.mhra.gov.uk/search...

This forum manages to cover some extremely wide-ranging cobalamin issues!

My thinking is very much that if there is any possibility of tobacco amblyopia or Leber's, however slight, then avoidance of cyanocobalamin seems simply a prudent approach!

Optic neuropathy and chronic cyanide intoxication: a review

A G Freeman mD FRCP Honorary Consultant Physician, Princess Margaret Hospital, Swindon

Leber's hereditary optic atrophy

There is still considerable controversy concerning the precise role of cyanide toxicity in the pathogenesis of this disorder, a condition almost solely confined to young males. Its cause is unknown but one hypothesis is that these patients have a defect in cyanide detoxification due to an inborn error of metabolism, resulting in an inability to convert cyanide to thiocyanate by the enzyme thiosulphate sulphur- transferase (rhodanese), which is present in high concentration in the liver. Recent work supports this hypothesis in that this enzyme was found to be considerably reduced in the rectal mucosa of subjects with Leber's optic atrophy as compared with healthy controls.

europepmc.org/backend/ptpmc...

jade_s profile image
jade_s in reply tohelvella

"I was particularly thinking of places like the NHS website and the MHRA documentation for cyanocobalamin products" I think you already determined that many of these leaflets are not quite correct / up to date !

Ok let's stop hijacking wizard's thread

WIZARD6787 profile image
WIZARD6787 in reply tojade_s

I can't open the articles but I wonder if it's not about using it to treats smoke inhalation with massive amounts of cyanocobalamin. And I would wonder if the damage is known to be caused by cyanocobalamin and not a result of the smoke inhalation or other cause.

WIZARD6787 profile image
WIZARD6787 in reply tojade_s

That would be like saying it's not prudent to not eat anything with peanuts in it. Ashley, peanuts allergies are probably worse.

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