What type of B12 is best to use - Pernicious Anaemi...

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What type of B12 is best to use

Antstarr profile image
18 Replies

Can someone clear this up for me please I’ve been told methlycolbamine is the best form of B12 to take especially for nerve neuropathy but my doctor has told me to take hydroxocolbamine

Thanks

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Antstarr profile image
Antstarr
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18 Replies
wedgewood profile image
wedgewood

I agree with your doctor . I have used both Hydroxocobalamin and Methylcobalamin. I found no difference at all , except that the Methyl was much more expensive , more difficult to store and more difficult to obtain.

Out scientist on this forum , fbirder , can give you an explanation as to why Methyl is no better , except for possibly in a very small minority of cases .

Antstarr profile image
Antstarr

Thank you so much for getting back to me I really appreciate that can I ask to you get nerve pain? And did hydroxocobalamin help with your symptoms?

wedgewood profile image
wedgewood in reply toAntstarr

Yes , in my feet , but that has gone now . I only use Hydroxocobalamin. Once a week . I had completely numb feet , but they are better now . I just get very hot feet - they only seem hot to me , they don’t feel hot. But I can cope with that . Hydroxocobalamin has been great . I feel well again . But I could only get one injection every 3months from the GP . So I now self -inject weekly .

Antstarr profile image
Antstarr in reply towedgewood

Did you struggle with breathing issues or palpations? Do you know how long you defiancey was Un treated for Thanks

wedgewood profile image
wedgewood in reply toAntstarr

I can only guess how long I was deficient before treatment 3-4 years I think . I was very tired always , for a long time — thought it was age -related . When my feet went numb I went to GP . He tested B12 -it was 150, and was considered normal . Couldn’t find an explanation for my numb feet . . Went to a private GP , who tested for Intrinsic Factor Antibodies . Hey presto -positive . Back to GP , who was then forced to give me B12 loading doses . 5 in 2weeks ( Gloucestershire dosage ) Result — Huge improvement , but only allowed one injection every 3 months , which was nowhere near enough for me to keep well. . He maintained my numb feet had nothing to do with PA . Anyhow I found this site and how to get hold of B12 ampoules from German online pharmacies . Etc. I now S.I.

Yes I used to have palpitations -now completely gone . I do have breathing problems when climbing a steep hill . but that could be age-related ! Hope that this bit of information helps . Trouble is we are all different and need different amount of treatments . But GPs don’t see it like that unfortunately. We have to find our own salvation . That said , one injection in 3 months is sufficient for some. Maybe it depends on how long one’s been deficient - who knows ?

Antstarr profile image
Antstarr in reply towedgewood

So glad that the numbness went away. Gp’s are clueless when it comes to B12

I had a B12 defiency in February of last year I got a phone call after my blood test results came in saying my B12 was low and that I should take a B12 complex so I did exactly that and have been supplementing for almost a year. Fast forward to now I have everything from numbness to palpations and eye issues. My gp lost my blood results re tested my B12 it’s 820 he says that’s to high so I cannot be deficient, and because they cannot find my blood test that said I was he cannot treat me. I had to go private and contact a B12 charity and then I started taking injections and my eye issue have reduced dramatically. The doctors don’t realise that even tho your supplementing with vitamins or because you blood test comes back normal you can still be deficient. I was told to pay private by my gp for an test to check my Intrinsic factor its cost like £200 👀 so glad we have forums like this

wedgewood profile image
wedgewood in reply toAntstarr

If you have Pernicious Anaemia , no amount of tablets will help . You have to have injections . You cannot absorb B12 in your stomach . Yes , there is a huge amount of ignorance in the medical profession regarding P.A.

Antstarr profile image
Antstarr in reply towedgewood

I cannot even get tested for pernicious anemia because my gp said my B12 levels are normal now he won’t even do a simple blood test so I think again I’ll have to pay privately thanks again for your information I really so appreciate that

wedgewood profile image
wedgewood in reply toAntstarr

Yes , I’m afraid that ‘Ignorance Rules ‘

Kish2929 profile image
Kish2929 in reply towedgewood

Hi, I have very similar nerve symptoms as yours. I have numbness in feet, hands, tremors and muscle twitching from 2 years. But, I have only been diagnosed with low B12 6 months as doctors I have met last year did not test me for b12. My B12 was 76 in June, 2018. I was prescribed methyl injections, one per day for 2 weeks, then one per week for 3 months, then one per month. So, after weekly injections my B12 was 650 in September 2018 when I met another neurologist who prescribed daily methyl tablets and asked me to stop injections. So after 3 months of taking supplements my B12 is now 1250. As for the symptoms, I could see a bit of improvement with tremors completely gone and twitching has almost gone. But I still experience nerve pain in my feet and sometimes hands. What I observed is there's no difference in the improvement of symptoms with injections compared to tablets. So I believe I have no absorption issues and will continue with tablets. Can you please let me know how long did it take for you for nerve pain and numbness to go.

wedgewood profile image
wedgewood in reply toKish2929

I would say that it took about 6 months for the numbness and pain to disappear, after correct treatment was started ( 1injection of Hydroxocobalamin weekly ) Three years on, I still have “burning” feet, so I am resigned to the fact that they will not improve . I use Hydroxocobalamin injections one a week . This keeps all the symptoms of PA at bay ( exhaustion , confusion, brain fog, breathlessness dizziness anxiety etc ) I did try Methylcobalamin injections for a few months , but could feel no advantage , so I’ve returned to Hydroxocobalamin. I was diagnosed with Pernicious Anaemia. 3 1/2 years ago , so tablets, sprays and patches do not help me .

A negative test for P.A. does not necessarily mean that you do not have it

. We are all different , so we all have different treatment needs and rates of recovery . This makes B12 deficiency , for what ever reason , difficult to assess as to how long recovery will take . We are very much on our own , as the medical profession is really ignorant about treatment . I feel I have to acknowledge that my feet will not recover 100%.. But as I have regained my health in all other respects , I can live with that. I do hope that you will also be able to get rid of your nerve problems . But generally , the longer one has had the problems without having treatment , the longer it will take to recover . But do not give up hope . Keep taking the tablets . As they are a natural treatment , it can do you no harm , and you cannot overdose . But also remember to supplement with vitamin B 9 ( folic acid )as well It acts with B12 and is very important .

Best wishes .

fbirder profile image
fbirder

This quote -

We conclude that supplementing MeCbl or AdoCbl is unlikely to be advantageous compared to CNCbl. On the other hand, there are obvious advantages of high parenteral doses (1-2 mg) of HOCbl in treating inborn errors of Cbl metabolism.

From this paper ncbi.nlm.nih.gov/pubmed/258...

Summarises the science.

When any type of B12 (methylcobalamin, cyanocobalamin, hydroxocobalamin or adenosylcobalamin) enters the cell the very first thing that happens is that the top bit (the methyl, cyano, hydroxo or adenosyl group) is removed to leave cob(II)alamin. It is this that is then transported through the cell to where it is needed, where it will undergo further transformations.

So it makes no difference at all what flavour B12 you stick inside yourself. As soon as it gets into the cell one form becomes indistinguishable from any other form.

Hydroxocobalamin is cheaper, more stable and easier to source than methylcobalamin. Also, methylcobalamin has been known to cause some unpleasant side effects in a few people.

Fred3 profile image
Fred3 in reply tofbirder

Hi fbirder,

I also read this article looking for information, but I also read your book (What you need to know about PA & Vitamin B12 deficiency) in which we can see on p. 155 that "some patients respond better to treatment with one particular form of B12 injection than others" and on the same page that "it is methylcobalamin that is the preferred type of B12 injection where it is available". Earlier in your book, you are also claiming that you are using methylcobalamin.

I also found this post from Regev Elya (regevelya.com/vitamin-b12-f... comparing the different forms and methylcobalamin seems as well the most recommendable form (multiple references provided). I know that this was treated/discussed multiple times, but it seems that the treatment (B12 form and frequency) is case dependant and that some people are more prone to use methylcobalamin alone or a mix of methylcobalamin and adenosylcobalamin.

clivealive profile image
clivealiveForum Support

Hi Antstarr it may simply be that if you are in the U.K. your doctor can only prescribe hydroxocobamalin injections - hence his recommendation.

Jackiekay profile image
Jackiekay

Actually in my case and from what I have read and had gone to a bone specialist after my fall and the bone specialist finding that I had pernicious anemia I truly believe methylcobalamin works the best and is NOT more expensive. I was diagnosed almost 4 years ago and had all the terrible symptoms everyone else has. My problem is I cannot take 99% of all pills because my stomach is lacking the enzyme to absorb properly and I have severe reactions or side effects. My B12 was 109. Thus I need name brand prescriptions if I ever use any or liquid oral medication. My bone specialist told me to go to Harves Health and buy Garden of Life B12 mouth spray which contains the methylcobalamin, which is more like what your body produces, the others are synthetic. I started with one spray daily because I was scared of a reaction anyways but had none. In 5 days ALL my symptoms were gone! In less than 6 months my B12 went from 109 too 800 plus! It costs, on sale around $11 and otherwise $16 and lasts forever! Hope this helps. I did not have any injections as my body would have reacted badly. I still just use one spray a day. You can order it through Harvest Health or maybe Amazon or other Health food stores have it also. So worth a try. Hope this helps. I am a whimp with medication so 2 or more sprays as directed may work better for you.

Antstarr profile image
Antstarr in reply toJackiekay

Thank you so much for getting back to me can I ask did you get any eye problems with your PA Thanks

Jackiekay profile image
Jackiekay

Blurry vision, fog brain that all disappeared after my B12 got better and better. In the US they want your B12 in the 350 to 400 range. In Japan the minimum is 550, so I strived for Japans statistics and I did it. I really researched this and had genetic and DNA testing so I really have covered my bases on this subject. MOST PA's and doctors will just say the synthetic form of B12 is fine but it is not! For some people it may work but why not go with what is more natural to your body and works. I see people who struggle with this for years on synthetics. I was just extremely lucky to get this specialist and ONE PA who agreed.

Polaris profile image
Polaris

ncbi.nlm.nih.gov/pmc/articl...

" Compared with other analogs, MeCbl is the most effective one in being uptaken by subcellular organelles of neurons. Therefore, MeCbl may provide better treatments for nervous disorders through effective systemic or local delivery."

" MeCbl also has neuronal protection including promoting injured nerve and axonal regeneration [9, 10] and confronting against glutamate-induced neurotoxicity [9,"

.........................

ncbi.nlm.nih.gov/pmc/articl...

" All but one (93%) of the Good responders were treated with methylcobalamin, while a significantly high proportion (43%) of Mild responders were using hydroxocobalamin (p<0.03). Moreover, Good responders had on average been treated with injections more frequently (interval 3.8±1.9 days) than Mild responders (interval 5.8±1.7 days). This difference was significant (p<0.03)."

"In summary, Good responders had significantly more often made use of the highly concentrated methylcobalamin preparation, which was used with yet more frequent injections, and in combination with higher daily doses of oral folic acid. Moreover, they were more often on treatment with thyroid hormones. Furthermore, none in this group was using prescribed strong analgesics, while a majority of Mild responders were using such analgesics on a daily basis."

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