Powdered Methylcobalamin : I have seen... - Pernicious Anaemi...

Pernicious Anaemia Society
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Powdered Methylcobalamin

EiCa
EiCa

I have seen ads for powdered Methylcobalamin twice this week. It claims one just adds saline to use. The advantage seems that it extends the expiration date. I inject very small amounts and end up having to trash expired B12 serum.

Does anyone know about the efficacy of this powdered form?

Thank you.

78 Replies
oldestnewest

First problem, getting hold of saline for injections. Which is prescription-only in the UK.

EiCa
EiCa in reply to helvella

It never occurred to me this would be a problem. Can I make my own saline using sterile precautions?

EiCa
EiCa in reply to EiCa

Sterile saline seems to be available on Amazon. Didn’t check who they ship to...

helvella
helvella in reply to EiCa

Sterile saline is NOT necessarily suitable for injection.

deniseinmilden
deniseinmilden in reply to EiCa

Only use it if it specifically says it is medical grade suitable for injection and comes in individual dose ampoules.

EiCa
EiCa in reply to deniseinmilden

Thank you Denise.

helvella
helvella in reply to EiCa

A somewhat odd source but NASA have a paper on what they could do to make water for injections (the precursor of saline for injections) during a space mission.

ntrs.nasa.gov/archive/nasa/...

The certainty about the water quality and the purity of sodium chloride could be issues.

EiCa
EiCa in reply to helvella

I agree that this is probably not a good idea. That is why I ran it by this group.

fbirder
fbirder in reply to EiCa

Do you have a clean room? Not a room that is clean, but a room that has microbial filters on the only air intakes. And a space suit for you to wear when preparing your sterile saline?

The stuff from amazon is for cleaning your contact lenses. It is not as bug-free as the stuff you wou,d want to inject into yourself.

EiCa
EiCa in reply to fbirder

Gotcha, though the sarcasm was not necessary. Thank you. This is why I am afraid to ask questions here....

Everyone here seems to tolerate the sarcasm better than I do. It must be my B12 deficiency...

deniseinmilden
deniseinmilden in reply to EiCa

Being kind, friendly and helpful costs nothing... And nothing else should be acceptable, regardless of B12 status or anything else!

Only perpetrators condone abuse.

Please, try not to be afraid - if those of us who don't deal in abuse stick together and continue to contribute here, it waters down the unnecessary unpleasantness of the odd one who is allowed to continue with only minimal censorship.

I hope you can find a good "solution" to your problem... and for your injections 😜

I'm taking that you have tried hydroxocobalamin and don't get on with it?

All the best! x

Foggyme
FoggymeAdministrator in reply to deniseinmilden

Deniseinmilden...

You may or may not be aware but you appear to be implying (or explicitly stating) that the administrators on this site deliver minimum censorship and as such condone abuse (because we are abusers)!

This may not be what you intended...but that is how it can be read (it’s how I read it). This shows how difficult it is to moderate tone, meaning, humour etc....and demonstrates just how difficult it is to ''moderate' the written word to accommodate the way in which a reader may interpret and receive meaning (whether this was intended or not)!

Where personal abuse occurs (or criticism aimed at a specific individual) this is most certainly not condoned and is dealt with swiftly.

You also appear to be unhappy about the way the forum is moderated, so please can I draw your attention to the following...

All administrators in this forum are volunteers and, as such, have outside work/commitments and their own health issue to manage. Whilst we endeavour to read everything posted in the forum, there are times when this may not be possible. However, we always respond to reports that are submitted very quickly and work hard to ensure appropriate safeguarding in the forum, in particular that dangerous or inappropriate advice is challenged.

Please can I ask that if you have any concerns about any posts or replies, you express this via the report function (rather than in the open forum) so that administrators can deal with any concerns appropriately.

ALL...if any of you have any concerns about any posts or replies you spot or receive in the forum please report this by tapping the report tab displayed at the bottom of each post/reply. These are always deal with swiftly by the admin team. Names of those who submit reports will never be disclosed and any issues raised will be followed up through personal message via the chat function, rather than addressed openly in the public forum (thus any censorship or words of advice take place in private).

It goes without saying, but I'll say it anyway...this forum does not 'belong' to we administrators...its 'belongs' to forum members. Members make this forum what it is. So...

Please help us to keep you safe and happy by reporting any concerns directly to the admin team, either via the report tab or, if there is a general concern, by personal message via the chat function.

Thanks all 👍

Gosh, no, that was never my intention at all and am surprised that you took it that way - I think you administrators are brilliant and I'm indebted to you for all your work. I am an administrator on a small group and know what it can be like.

I have never thought that you condone abuse and know that you aren't abusers. I know, from your replies over the years, that you are all lovely, kind and sensitive people. You, individually and collectively, have only wondered if my comments were directed at you because you are so caring: this shows you that cannot have the arrogance to be an abuser which is why I have always known none of you are. Unfortunately in this case, I have so taken it for granted that you aren't, I have overlooked the possibility that my comments could have been taken that way! I'm mortified that I might have upset, or even unsettled any of you and apologise completely. I am sorry.

My comments have always been about publicly and openly backing you up, rather than just dumping the problems at your "door" to deal with by reporting, knowing that you are busy and have a lot to deal with.

It can be helpful to those with less confidence and problems with anxiety, to know that there are members, as well as administrators, on here who are like minded, kind and friendly - flock security - so I have been supportive where I can be and have received numerous messages of appreciation of this.

I know that you do censor and change texts from contributors, sometimes even before they are released - in most cases to make sure they make sense at least: we've all had a giggle at our typos and auto corrections at times!

I am aware that you know some contributors are more likely to cause upset than others and know you are consequently careful to thoroughly check their replies: I feel that this is definitely the way forward (unless you block them) as once a harsh comment has been received, no amount of retraction or amendment takes away the pain inflicted by it - and hence why some people are worried about posting on here.

I also know that, just as with our body's requirements for treatment, there is no "one size fits all" and different people take comments on fora differently but I guess I am just extra aware from past experience that it is possible, when at a low ebb due to deficiency that even simple, blunt comments can be hard to take and can be very - devastatingly - upsetting.

Under those circumstances it is also very difficult to have the confidence - and self belief - to actually hit the "report" button. It was hard enough to write anything in the first place and if challenged my reaction was to crumple and allow the comment to back up my self doubt, rather than realise it was wrong and I was OK.

As we who care know, it is vital that we help those who are most vulnerable and make sure this portal is available to everyone by making sure they are supported and not upset or frightened off by unwittingly harsh or emphatic comments - mine included.

It is easy for those who are sensitive (a good trait for others), to see the comments from people with characters robust enough to not self-sensor or tread carefully, as bullying or, if repeated in their direction, as trolling and I know that you definitely don't want that in any way and I thank you for all your help and hard work which ensures this doesn't happen.

If reporting issues rather than publicly confronting them/openly supporting those on the receiving end, helps you - maybe by giving you a tally of "reports" to support your actions - then I am very happy to do this and will encourage others to do the same: I can now see that if problems are brought to your attention it is easier for you than having to look for them all the time by carefully checking all the wording of everything posted.

Thank you very much for all your input and care!

Dustpan
Dustpan in reply to EiCa

I’m sure birder didn’t mean to come across as sarcastic, I thought the comment was amusing and if it had been sent to me I would have a giggle.

Gambit62
Gambit62Administrator in reply to EiCa

EiCa, please use the report functionality by a response whenever you feel it is inappropriate eg because it is sarcastic.

Adminstrators on this forum are volunteers and we also have jobs and other conditions and life factors that at times restrict the amount of time we can devote to the forum so we are rarely, if ever in a position to read and moderate every single response and rely upon reports to highlight issues.

In this particular instance the intention was to highlight the dangers/risks resulting from preparing something sterile in an unsterile environment. I hope that fbirder is able to take on board your comments about the tone of response as made during the exchange on this post and understand that harsh responses can act as a disinsentive to posting and asking questions.

EiCa
EiCa in reply to Gambit62

Thank you Gambit. I do understand the ins and outs of moderating these forums. I moderated a Yahoo forum myself for several years and it nearly consumed my life (because I let it). I actually was asked to take over the site completely but I had to turn it down. I found the work to be very gratifying but I also let it go too far...I am kind of like that.

So I get it. It is volunteer work, done by people who have lives, and families and their own illness to manage. I am very grateful for the work anyone does (even the posters) on these sites. I do believe that these forums have kept me alive at times, and so I aim to contribute as much as I can when I can, and try not to be a nuisance with unnecessary questions that I can google.

I believe f birder and I are fine now. I am been a victim of abuse which has made me extra sensitive. I do appreciate a good laugh. In fact, I love a good laugh but not when/if it is at the expense of others. This forum is way too valuable for me at this critical juncture of my life to stay away because I am intimidated. I hope I smoothed things over with fbirder adequately. As stated, I do appreciate his/her expertise and knowledge; I just think we all need to consider how our words might be received. People are not inside our heads as we write them.

I would press the "report" button if I needed to, but honestly, I prefer to deal with people directly first.

Thank you for your kind and clarifying remark. I will likely be around for a while as I think I have a long hard journey ahead of me with this B12 thing...

Many thanks,

Eileen

deniseinmilden
deniseinmilden in reply to EiCa

Abuse stays with us forever, doesn't it - no matter how well we cope with it and move on from it, the scars remain.

Looking forward to your future contributions.

EiCa
EiCa in reply to deniseinmilden

Thank you, Denise. It has taken me a lot of years to acknowledge what has happened to me, and how it has made me who I am. Unfortunately the stress of trauma probably contributed to my B12 deficiency.

Very kind and thoughtful words again.

Be well.

Eileen

Abuse does stay with us, as I have had it aimed at me from school upwards and sometimes it comes back twofold with agoraphobia which is starting to raise its ugly head again-so I try not to find the negative and that comment made me laugh out loud, as I said if it was aimed at me I thought I would banter back. With what’s going on in the world at the moment a bit of light relief is needed. I try not to take things too seriously. Have a good day.

Seth12345
Seth12345 in reply to fbirder

I know I probably shouldn't laugh but I do find this response extremely comical... 🤪

EiCa
EiCa in reply to Seth12345

Guess it just hit me the wrong way. This poster is extremely confident. Somehow I feel I know the intent of the words.

Maybe a "LOL" or something would soften any chance of it landing a bit harshly....if that were a concern, that is.

We can just chalk it up to the myelin sheath on my nerves being destroyed.

Ernest2
Ernest2 in reply to EiCa

Hi EiCa,

I'm a bit of a third party here (just taken my B12. I don't think I have thyroid)

I didn't take Birders reply as personal at all.

My take is there is a really serious safety point here. 3rd party dummies like me may read this stuff. Injecting a bit of humour catches people's attention so they remember the safety.

I hope you may go on and explain this to others and perhaps reuse the humour to help do that.

All that said I really understand the point about being frazzled and the effect of that on clear thinking. I really struggle with all that.

Wishing you well,

Ernest

EiCa
EiCa in reply to Ernest2

Thank you Ernest. Honestly, the only way I manage to get through life is with a sense of humor. As they say, laughter is the best medicine.

Have a good day.

Eileen

I did try it 2-3 years ago , and it’s effect on me was no better than Hydroxocobalamin. In fact ,it had disadvantages . It is more unstable than Hydroxocobalamin, and must be refrigerated, Keeping a large quantity of ready made up injection material can lead to contamination . Easily done in a domestic situation . It’s always better to use single - use 1mg x 1ml ampoules. I get mine from German online pharmacies ( Hydroxocobalamin) in packs of 10 ampoules . They have a use by date of about 30 months , so no problem with them running out of date .

EiCa
EiCa in reply to wedgewood

Thank you.

EiCa
EiCa in reply to wedgewood

Do these "single use vials" have to be used just once, or can I use one for a few days. I need to start with a smaller dose than 1 ml. I admit I am afraid to say that here, but the side effects of these shots are huge for me, but I have to keep trying...I am dangerously deficient.

Please, if anyone wants to mock me, refrain. I get enough of that from my doctor and others.

deniseinmilden
deniseinmilden in reply to EiCa

Unfortunately they should only be used as soon as they are broached - they are only sterile enough for injection purposes then because there are too many bugs in our natural air and surroundings which may get into the solution and it's not worth the risk.

If it doesn't sound too bonkers, you could use what you need from the ampoule for injection and then put the rest in the fridge to "drink" another day or later. If you put a few drips under your tongue, or swill it around your mouth, you may well absorb a bit through the membranes of your mouth and it won't waste it. Your mouth is designed to cope much better with bugs from the environment than the tissues under your skin and has a range of defenses which render normal food, drink and air safe to ingest.

Hydroxocobalamin is usually (although I do appreciate not always) much better tolerated than methylcobalamin, while Clivealive and some others have to have cyanocobalamin - but that too is not a panacea (for instance it seems to do nothing to help me).

There is no "one size fits all" so it's quite often a matter of safe trial and hopefully not too much error!

Well done for trying - I promise that in time, with enough B12 and supporting supplements you will feel a lot better - and with that you will be much more able to cope with everything.

When I was bad I used to end up crying if someone just spoke to me, whether what they said was nice or nasty! 5 years of daily SI on, it's hard to ruffle my feathers at all, despite being a long way from being properly well due to a range of problems!

Good luck with your return to feeling well again! x

EiCa
EiCa in reply to deniseinmilden

Denise,

Thank you for so kindly answering my questions. I have not tried hydroxy; I was told I needed methyl.

The large vials are so expensive and I end up throwing most of it away. Tablets or oral are out of the question.

I have felt between a rock and a har place for a long time. I got so sick from my trial and error of doses and methods I decided the cure was worse than the fix. Admittedly I gave up. My doctor told me I will die if I don’t get the B12 in me so it’s back to more trial and error. I don’t care what ANYONE says...it’s not in my head. Why on earth would I choose to be so sick?

Thank you for your gentility. My nervous system is a wreck. That said, I have never thought it necessary to put someone down for asking a question.

Until I get better, I am afraid my skin isn’t getting thicker any time soon.

All I need is some advice/opinions. And I am quite grateful for any help I can get as doctors just want to over-dose me with Cyanocobalamin and I ended up with anaphylaxis. That was 15 years ago.

Thank you again Denise. You are very kind. I will not buy the individual ampules. Is the expiration on the vials I get from the compounding pharmacy an absolute? The last vial gave me 3 months but I threw most of it away.

deniseinmilden
deniseinmilden in reply to EiCa

It sounds like you might live in the USA or somewhere outside the UK. It can make sourcing hydroxocobalamin ampoules more tricky but worth trying.

Your post says "I will not buy the individual ampules." but wonder if you actually meant you would try them?

If you do want to and cannot readily buy from Germany, it might be worth starting another post entitled something like "hydroxocobalamin ampoules in the USA, please" and then asking for the specific help you need. There are plenty of people from all around the world on here and although they don't always respond to our UK based chatter, they are happy to jump in if their country gets a titled post.

Hydroxocobalamin (and similarly cyanocobalamin) ampoules are very stable and I am happy to use them if they are beyond their date as they are sealed until opened.

I would be much more cautious with methylcobalamin and would definitely use up anything that had had its seal broken within the suggested time.

KBird01
KBird01 in reply to EiCa

I'm in the same situation with having smaller doses due to side effects if I take the full 1mg. I take 0.5mg each week, which seems to be doing the trick so far.

Buying the hydroxycobalamin ampules are so cheap, I don't worry about wasting the other half.

And you're not alone in how you feel. I'm a normally confident person, but being disbelieved from GP's and a couple of other comments about my health issues really knocked me, so just concentrate on the kind, positive folk on here who will be supportive and understanding and keep you on track.

Good luck! 😊

MoKayD
MoKayD in reply to EiCa

I understand the side effect issue you are having. During the six weeks I was receiving my loading doses my blood pressure started rising at an alarming rate. I started with normal blood pressure numbers but by the time I was on my 4th shot my doctor was so concerned about my blood pressure he wanted to stop my loading doses. I talked him into continuing them because I could feel they were working. Right after each shot, for the first few months, I would also get an extremely bad headache which would last for a day or two. I had various side effects for the first 6 to 8 months of B12 shots. I think I was just healing and because I am very sensitive to any changes in my body I felt them more strongly than someone else might. I am now 2 years into receiving shots every 3 weeks and I don't have any side effects. I feel SO MUCH BETTER than I did 2 years ago. I hope and pray you feel better soon.

KBird01
KBird01 in reply to MoKayD

Yes, high blood pressure was one of my main side effects too. It was quite worrying at the time.

wedgewood
wedgewood in reply to EiCa

No one should mock you for any reason . We are all different , and we all have to find a way to treat ourselves . There are 3 kinds of injectable B12 all available in single use ampoules . Namely — Cynocobalamin, Hydroxocobalamin, and Methylcobalamin. Maybe one of them would suit you best . I know that one member , (clivealive ) can’t tolerate Hydroxocobalamin, and uses Cynocobalamin, which was the original cobalamin to be developed and used by the NHS : way back . He could not tolerate the new form that was used later , and had to return to using Cynocobalamin. This form is widely used in the USA , It can also be purchased from the German online pharmacies that also sell the more modern form , called Hydroxocobalamin. . Single use Methylcobalamin ampoules are more difficult to obtain , but can be purchased from the manufacturer in Munich Germany. I can send you details if you like .

I really would not advise you to partly use small quantities from an ampoule . But if you don’t mind running the risk , it’s a possibility , and most certainly preferable to using from a large quantity that you make up using Methlycobalamin powder . What type of B12 have you reacted to so far ? Have you tried Cynocobalamin? If you have received B12 from your GP , it will have been Hydroxocobalamin, as it is the cobalamin of choice in the NHS . To start off , I advise you to try a different form of b12 to the one that causes you to have a bad reaction . If that’s the same , then you would be forced to try what you suggest . You will find a way around this , I have to rush off now , but I can send you details of how to obtain all the different kinds of B12 , if you would like that , Very best wishes . I want you to get well.

P.S . Have you tried using sub- lingual Methylcobalamin lozenges ? . Some PA patients can absorb very small quantities from this preparation, because the skin under the tongue is able to absorb very small quantities. ,Obtainable from Amazon . I tried them and they didn’t work for me ,but apparently they do work for some P.A. patients who need a little boost between injections . . Can’t remember the name of the manufacturer at the moment .. They are not the same as the usual Oral B12 tablets used by vegans etc . A very small amount of B12 can be absorbed by way of the ilium .even by P.A. patients I read .

Marz
Marz in reply to wedgewood

Could it be Jarrow Methylcobalamin lozenges from Amazon - for under the tongue ?

wedgewood
wedgewood in reply to Marz

Yes that’s right ! Thank you !

Pascha1
Pascha1 in reply to Marz

they never worked for me but for others it may work

wedgewood
wedgewood in reply to EiCa

Also meant to say that a Hydroxocobalamin single use ampoule costs about 60 pence and a Cynocobalamin about the same . So it wouldn’t be horribly expensive to just take a small amount for injection , and ditch what you don’t use .

Pascha1
Pascha1 in reply to wedgewood

The NHS iHydro cosst from £8.50-£ !2.60 for 5 ampoules where in UK can you buy it for 60p please or is this germany it cost that amount

wedgewood
wedgewood in reply to Pascha1

I buy my b12 Hydroxocobalamin ampoules in packs of 10 from German online pharmacies . They cost between 5-6 Euros . So counting in the cost of the courier, which is about €9.00, (no matter how many you buy ) and I buy 10 packs at a time, one ampoule costs about 60 pence .

Pascha1
Pascha1 in reply to wedgewood

Thank you i buy mine at times in Germany as well :) Do you know if we will still be able to buy from Germany when we Brexit? I have been checking out other sources just incase :) looks like the NHS get ripped off for B12 as well,, they really need to sort the person who agrees prices for NHS out !

wedgewood
wedgewood in reply to Pascha1

Yes if we can buy the ampoules as private people ,so cheaply , the NHS should be able to get then even cheaper with their purchasing power .

I think that we should be OK to buy them after we have totally left the EU. The sellers will have to fill out a customs form and declare the contents and their value . So we might be charged customs duty . We can only wait and see . If needs be I will fly to Germany and smuggle some wicked vitamin B12 . My health is worth it .

wedgewood
wedgewood in reply to Pascha1

Trouble with “ other sources “ is that they will come from abroad as well .The good thing about being in the EU was that we were in the single market and anything we bought there wasn’t subject to scrutiny .

HiddenThis reply has been deleted
kcbrecks
kcbrecks in reply to Hidden

Our daughter used to get her injections at the surgery and didn't have to pay but now she self injects she has a prescription for a back of 5 ampoules for which she pays the normal prescription fee. The surgery will also provide syringes and needles which she doesn't pay for.

HiddenThis reply has been deleted
kcbrecks
kcbrecks in reply to Hidden

As a pensioner I don't usually think about the prescription charge but it would be cheaper to get a pack of ten, just about, with the courier charge as they have an expiry date of over two years.

I get a pack of 5 every year on prescription. This year, in May, though they were old stock which had a use by date of November 20. So did our daughters. The ones from Germany are 2022.

mycare.de

online germay

link

mycare.de/en/online-kaufen/...

WASSER F INJEKTIONSZWECKE, 100 ml

Write a review & collect bonus hearts

WASSER f. Injektionszwecke

Dosage:Lösung

Content:100 ml

PIP code:00626544

Manufacturer:Serumwerk Bernburg AG

Translated into ENGLISH

WATER F INJECTION PURPOSES, 100 ml

Write a review & collect bonus hearts

WATER f. Injections

Dosage: solution

Content: 100 ml

PIP code: 00626544

Manufacturer: Serumwerk Bernburg AG

I have tried powdered form In a bottle but the problem is that as you open the bottle you need to dissolve the whole amount at once (at least that was in my case) - and then keep it in the bottle and use it for injections. I worried that it wasn’t as sterile as ampules - and probably used it 3-4 times before throwIng it away.

If you can get the powder individually packed for each injection, then you can go for it. However, if all powder is in one bottle, I would be very careful.

You can order saline and lidocaine in ampules from Germany.

Dear EiCa

Sorry to hear you're feeling unwell.

I have many allergies, and absorption issues due to having Hashimoto's.

I find Bioactive B12 organic Methylcobalamin 66 1/3 %, and Adenosylcobalamin 33 1/3 % and reverse osmosis water by Nature provides (Amazon). Good and with the pipette can administer up to 10 drops daily (it does say it's comparable with injections).

I also have Super B Complex by Igennus (Amazon) , as we all know we need a good B complex when taking B12.

Magnesium spray is good for relaxation. Better You Sensitive magnesium spray from Amazon.

We all need optimal doses of Selenium (unless can eat Brazil nuts daily). I have Cytoplan Selenium elemental (pure formula).

Acerola Powder by Nature Gold is an excellent source of Vitamin C with added bonus of containing Vit A and E.

VitD3 and VitK2-MK7 very necessary.

Vitabay organic K2-MK7 is good.

Just mentioning Vits and Minerals as with PA body can't truly absorb nutrients from food etc.

Have you had your Folate Ferritin and Iron checked recently. (Really important with PA). Also, adrenals/cortisol.

I just hope you can find something to make you feel well love.

Keeping vitamins/minerals at the top of optimal levels may help.

Take care x :-)

HiddenThis reply has been deleted
Thyb
Thyb in reply to Hidden

A full thyroid blood test including TSH FT4 FT3 TPO (THYROID PERIDOXASE ANTIBODIES) And Tgab. If TPO And Tgab are High - Hashimoto"s especially if TPO ARE high. I don''t take iron meds

I wouldn't bother with Methylcobalamin which is not stable after reconstitution. Hydroxocobalamin would be my choice.

Thyb
Thyb in reply to garretttimson

That's your opinion garretttimson but Individual differences for each of us. The type I take under tongue is both organic añd natural

fbirder
fbirder in reply to Thyb

The methylcobalamin and adenosylcobalamin are not natural. They are both synthesised chemically.

The methylcobalamin is methylated using methyl iodide which is a particularly nasty chemical.

For most people with Pernicious Anaemia oral B12 (of any type) is totally useless.

Thyb
Thyb in reply to fbirder

What research do you base that on ???????? I know the Meth/aden is Good!!!!!!!!!!

fbirder
fbirder in reply to Thyb

You know that it's good. Do you now that it's better than hydroxocobalamin?

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

Thyb
Thyb in reply to fbirder

Methylcobalamin combined with adenosylcobalamin is good....??

fbirder
fbirder in reply to Thyb

Cobalamin coenzyme forms are not likely to be superior to cyano- and hydroxyl-cobalamin in prevention or treatment of cobalamin deficiency

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

garretttimson
garretttimson in reply to Thyb

Of course it's my opinion, that's what this website is: opinions. Maybe it should be considered food for thought.

I am in the US. I will start a thread as suggested and see what comes up. The prices are either really cheap or really expensive so I am afraid to over or under pay for inferior quality. I don’t know how anyone determines the purity and quality.

Yes, I can afford to pay 6 pence/day and throw the rest away. I just need to find a reliable source. Sounds like I need to experiment with hydroxy. Every doctor/practitioner I have seen has told me I need methyl or adenosyl. I need injections. My digestive system does not handle vitamins; even sublingual.

I am very very grateful to the kind and generous suggestions I received above. I am so unwell, I do not have the stamina to thank you each individually but please know I appreciate your responses.

Eileen

fbirder
fbirder in reply to EiCa

Why methylcobalamin and cyanocobalamin are not better than, and may be worse than, cyanocobalamin and hydroxocobalamin. ncbi.nlm.nih.gov/pmc/articl...

The gist of that paper is -

All forms of B12 enter the cell and are immediately converted to cob(II)alamin. From that point onwards they are identical. It makes no difference what form enters the body, they all end up as cob(II)alamin when they get to the places where they work.

EiCa
EiCa in reply to fbirder

My understanding (from a ton of reading) is that some people don’t “convert” efficiently and thus the need for the various forms. Having had anaphylaxis to pure cobolamin (in an IV) I am afraid to try it. So, does using hydroxy have any benefit or is this conversion thing just to sell more expensive product.

Added synthetic chemicals to the methyl and adenosyl (tried that sublingually) could be one of the problems for me. I react to all synthetic chemicals very adversely and quickly.

Thank you.

fbirder
fbirder in reply to EiCa

I'm guessing that the stuff you have read says that methylcobalamin is essential for the conversion of homocysteine (hcYS) to methionine (met). Which is about 1% true.

That conversion is carried out by an enzyme called Methionine Synthase (MeS). The first stages in the conversion are the production of coc(II)alamin from B12 (any sort of B12). This is then converted to cob(I)alamin which binds to the MeS enzyme. Only cob(I)alamin can bind to the enzyme - nothing else. Specifically, not methylcobalamin.

Once the cob(I)alamin binds to the enzyme a molecule of methylfolate can also bind to it. The methyl transfers from the methylfolate to the cob(I)alamin to form enzyme-bound methylcobalamin. A molecule of hCys can then bind to the enzyme and the methyl group is passed to that, forming met.

The enzyme-bound methylcobalamin only exists for a fraction of a second.

The reaction needs cob(I)alamin, which it can get from any type of B12.

Here's the same explanation with more science (and references to the original science) b12science.com/B12Science/D...

EiCa
EiCa in reply to fbirder

Thank you for this succinct explanation. Can I ask how you became so well-versed in B12 and the complexity of how it all works?

fbirder
fbirder in reply to EiCa

I was a scientist working in pharmacology, drug metabolism and pharmacokinetics, and mass spectrometry, for over 30 years. So understanding most of the chemistry, some of the biochemistry and a teeny bit of the biology wasn't a massive problem.

When I was diagnosed with PA five years ago I started looking at the scientific literature about PA, B12, folate, etc.

I found that there was a load of BS on the interwebs, almost all from people running clickbait websites (a site that provides little real information, with a substantial percentage of the content being advertising, books and courses for sale and 'special supplements'). Some of them are really well put together and even have pictures of people in white coats - so I shouldn't be too surprised that so many people fall for their nonsense.

I developed quite a selection of real scientific articles, but many of them are really difficult to understand. So I've tried very hard to make them understandable. It helps that I spent 13 years as an associate lecturer for the Open University, so I had a lot of experience of trying to make science understandable. I'm working on putting these articles together in a web site (with a picture of me in a white coat to make it believable).

EiCa
EiCa in reply to fbirder

Aah...pretty impressive credentials.

I very much agree that it is hard to sort out fact from fiction on the internet. I appreciate having you as a “leveling” influence.

I was an early childhood educator for 30 years. I think that might explain the difference in our personalities!

I believe teaching kindergarten destroyed my myelin sheath!!! No kidding; 28 kids at a time, trying to teach them to read...an impossible job!! I still have nightmares. Once upon a time, I loved what I did though.

Thanks for sharing.

Eileen

fbirder
fbirder in reply to EiCa

Yes, hydroxocobalamin does have advantages over methylcobalamin. It is cheaper. It is more stable.

Why do people buy methylcobalamin? Because they believe the clickbait websites that tell them that they need methylcobalamin.

Look into organic Methyl/aden from Amazon mentioned in earlier reply love

fbirder
fbirder in reply to Thyb

What makes it organic?

If it is methylcobalamin then it is made synthetically using methyl iodide - en.wikipedia.org/wiki/Methy...

"Methylcobalamin can be produced in the laboratory by reducing cyanocobalamin with sodium borohydride in alkaline solution, followed by the addition of methyl iodide"

Methyl iodide is not a pleasant substance - en.wikipedia.org/wiki/Iodom...

EiCa
EiCa in reply to fbirder

Oh my! How do substances like methyl iodide get classified as organic, which we (admittedly, but wrongly) assume are safe.

Yet many seem to tolerate methylcobolamin just fine.

fbirder
fbirder in reply to EiCa

Because the label ‘organic’ is a meaningless marketing tool.

The fact that methyl iodide is used to make methylcobalamin doesn’t make methylcobalamin dangerous. Any more than the fact that hydrogen cyanide is used to make cyanocobalamin makes cyanocobalamin dangerous.

EiCa
EiCa in reply to fbirder

Now I AM confused. You stated “methyl iodide is not a pleasant substance.” The link you provided indicated multiple possibilities of toxicity.

fbirder
fbirder in reply to EiCa

Methyl iodide isn’t pleasant. That doesn’t mean that methylcobalamin is poisonous.

Common salt isn’t very nasty. But to make it you use the metal sodium (that burns in water) and the gas chlorine (used as a poison in WWI). Just because you use two nasty chemicals to make it doesn’t make the product nasty.

Thank you Thyb....I will look into that. I am not sure I will absorb anything oral but I am willing to give anything and everything a try at this point. I am just trying not to make myself too sick while doing so. I know this is going to be a trial-and-error process. There are too many choices, combinations, forms, dosing guides, etc. Not to mention the co-factors and other needed nutrients. People who get it right the first or second or even third time are very lucky. I appreciate your time.

I would strongly recommend against making injectables... This is extremely dangerous. This should be done in a lab as fbirder pointed out...

There was a famous case near Boston where I'm from where a local compounding pharmacy did a bad job compounding injections for... I believe fungus was introduced and tons of people ended up with meningitis. Needless to say over 100 people died as a result and it was horrific... This is not to be taken lightly.

en.m.wikipedia.org/wiki/New...

Oh I gave up on that after reading just the first few responses I got here. Making my own, that is. Are you saying don’t use any injectable even if made by a compounding pharmacist?

Seth12345
Seth12345 in reply to EiCa

No, I'm not saying that.

if it's legitimate compounding pharmacy you should be able to use injection safely would not an issue... I've done it many times. I just would advise against trying to compound them yourself.

Personally the compounded injectables that I was using were done in saline and we're $25 an injection. I prefer using the hydroxo from Germany that's in Depot form because it's cheaper and in an oil which I believe is more of a slower release. My experience with the injections that were in the saline was that they ran through me very quickly. I can't back this up with any scientific data, rather my personal experience...

EiCa
EiCa in reply to Seth12345

Thank you Seth. When I got a vial of methyl from a compounding pharmacy’s, I don’t think it was that expensive but then I suppose if I was 5 mg/ day as I was supposed to, it may have been pretty pricey. The cost of the B12 was included in an outrageously expensive office visit. I will not be returning to that doctor again. He charged me $600/hour and no one had informed me that he was that expensive. I was shocked. He didn’t accept insurance. I went in as a “cash pay” patient as I am out of knowledgeable doctors in my area.

I will not be making that mistake again!

Thanks for your input.

Eileen

HiddenThis reply has been deleted
EiCa
EiCa in reply to Hidden

I just had an ad pop-up on the internet for the powder the other day. After the discussion here, I would not use it though. There are parabens in shots?

If you aren't finding hydroxycobalamin works for you, try cyanocobalamin and don't be scared to take both on alternate doses, since doing this I have seen more improvements.

Lisa

Thank you Lisa.

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