Vial of 30 ml versus single ampoules - Pernicious Anaemi...

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Vial of 30 ml versus single ampoules

EiCa profile image
EiCa
25 Replies

It is quite common here in the US to be given vials of 30 ml (for me this is 30 injections). From what I have read here in the last few days, this is not safe and I should be using single ampoules because of sterility issues? Single ampoules of methylcobalamin are very expensive here. Methyl is what my doctors insist I use. Advice?

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EiCa profile image
EiCa
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25 Replies
deniseinmilden profile image
deniseinmilden

"If it ain't broke, don't fix it"!!

fbirder profile image
fbirder

Ask for cyanocobalamin. Just as effective, more stable and cheaper.

mcg-woo profile image
mcg-woo

I use the 30ml vials hydroxo but they are supposed to be discarded after 28 days. I wrap mine in aluminum foil and store in the refrigerator after opened and even before opening. The only problem I ever had was a relapse with symptoms when I was using the vial too long (for months) storing at room temperature after opening—yikes! I didn’t know better and since the vial is used in the doctor’s office/clinic setting, there are no instructions for individual use. Didn’t think about asking my GP. I know seems foolish looking back. Couldn’t figure out what was wrong with me since I was taking injections until a pharmacist questioned why I wasn’t refilling Rx every month. I’m curious about the methyl injections. I have only seen those available at a private lab in the US during a shortage of hydroxo. I would be curious as to where methyl injectable would be obtained in the US with Rx?

EiCa profile image
EiCa in reply tomcg-woo

My methyl injectable is ordered by my doctor from a compounding pharmacist. I have had 3 different doctors prescribe it this way.

mcg-woo profile image
mcg-woo in reply toEiCa

Wow, interesting. What is the cost? Do you notice a difference in the different forms—cyano , hydroxo—-or have you always used methyl? Does the methyl work well for you? I have only taken sublingual methy and it was useless for me because I could not absorb it.

EiCa profile image
EiCa in reply tomcg-woo

No, methyl does not really work well for me as I have horrendous side effects that do not seem to be abating. Because of the side effects, I cannot take a full dose. I asked for hydroxy but was told with my genetic mutations, I need methyl. The 30 ml. vials, which contain 30 doses have cost about $70/each. I am unclear if you are in the US or not. The most difficult thing for me is to find a functional medicine doctor who will actually use a compounding pharmacies. These pharmacies are amazing as they can "customize" just about anything to your needs.

mcg-woo profile image
mcg-woo in reply toEiCa

I’m sorry to hear that you’re having a hard time tolerating the methyl. I have done well on both cyano and hydroxo. Yes, I am in the US and use the 30ml hydroxo—insurance copay is $10, but cash price shows amount not covered by insurance $38, so cash price of $48. However the 30ml vial must be discarded after 28 days, so if you’re injecting weekly, that only amounts to 4 doses before the vial has to be tossed. My mom is a type 1 diabetic and injects monthly, so only 1 shot per 30ml vial. She orders through mail order and pays $10 for three, 30ml vials. Still, very cheap even at one dose per vial. It is difficult to toss a vial practically used, but I learned the hard way and used for too long and my symptoms returned. I paid about $17 with insurance for four single vials of cyano at the pharmacy, so hydroxo is still cheaper for me even tossing the 30ml vial after 28 days. I like the hydroxo because it doesn’t contain a cyanide molecule.

fbirder profile image
fbirder in reply tomcg-woo

"I like the hydroxo because it doesn’t contain a cyanide molecule."

The amount of cyanide from 1000 mcg of cyanocobalamin is about the same as you'd get from 7 apple seeds.

b12science.com/B12Science/D...

mcg-woo profile image
mcg-woo in reply tofbirder

Any amount of cyanide is concerning to me. It’s a poison and I don’t eat apple seeds-they’re not good for you. It’s really the fact that the body has to eliminate the cyanide before being able to convert to the body’s useable form. I didn’t know there was any difference in the forms and I was taking cyano until I read the book, “Could it be B12,” which promotes hydroxo as a superior active form versus cyano with a cyanide molecule that must be eliminated. The author is a nurse and she states that she injects hydroxo every other week and a daily liquid B12 form. Since she’s a medical professional and certainly more enlightened than myself—no medical background—I feel confident in choosing the same form that a nurse would choose for her own treatment. Studies also indicate hydroxo is better absorbed by the tissues and could require less frequent injections. Fbirder, you seem to favor cyano over hydroxo—and I am wondering why that is? Would you mind elaborating on this?

fbirder profile image
fbirder in reply tomcg-woo

"It’s really the fact that the body has to eliminate the cyanide before being able to convert to the body’s useable form."

The author is a nurse, not a biochemist.

No, the body doesn't need to eliminate the cyanide before converting the cyanocobalamin to anything. The cyanide is removed as soon as it enters the cell, just as the hydroxo group is removed from hydroxocobalamin. Just as the adenosyl group is removed from adenosylcobalamin. Just as the methyl group is removed from methylcobalamin - forming the poisonous methanol.

No, I do not favour cyano over hydroxo - the opposite (because cyano is eliminated more quickly). I do favour cyano over methyl. But I always respond to the 'cyanocobalamin is bad because it makes cyanide' meme.

If you're going to avoid cyanocobalamin because it makes tiny amounts of cyanide then you need to avoid apple seeds, prune juice, lima beans, bamboo shoots, soy, spinach, and a load more foods. Then there are the hundreds of drugs that contain a cyano group - citalopram, virapamil, anastrazole, and, the one you might well have taken, cimetidine (sold OTC as Tagamet).

mcg-woo profile image
mcg-woo in reply tofbirder

Thanks for your reply. You say that the cyanide is removed, but isn’t it true that the body has to work to rid itself of it? It doesn’t just magically disappear. How does this process occur? Correct, the author is a nurse and the book was co-written with a doctor. It is a well-researched book and studies indicate hydroxo is better absorbed by the tissues and could require less frequent injections—indicating superiority over cyano. We could go back and forth over which form of B12 we think is better, but it really is up to the individual to seek treatment that he/she feels is best for their situation. If there’s a hydroxo shortage in the US, I wouldn’t hesitate to go back on cyano because I need B12 injections to remain healthy and functional—and I have done that before—but when hydroxo is available, I go back to that form because it works best for me. By the way, I used a private lab to obtain injections a few years ago when I wasn’t receiving adequate treatment and they were injecting hydroxo and switched to methyl during a hydroxo shortage( I called them when I couldn’t access hydroxo to find out if they could). The lab owner told me she would pay more for the methyl than switch to cyano and that she would never inject others with that “trash.” I think there’s definitely a sense in the US, that cyano is not the best form and hydroxo is better. Perhaps, Americans have a different outlook on this than those in the UK? Interesting....

FlipperTD profile image
FlipperTD in reply tofbirder

Another scientist's answer: Table salt typically contains Sodium ferroCYANIDE as an anti-caking agent. It's widely acknowledged that the stuff isn't toxic. The 'cyanide' might worry folks but it's perfectly safe. The Sodium Chloride in the salt shaker is far more dangerous.

Anything made from fruit stones [such as Kirsch] is likely to contain a small amount of cyanide too. Moderation in all things is wise!

fbirder profile image
fbirder in reply toFlipperTD

E535 is the additive to look out for if you want to be sure that the only cyanide you consume is natural cyanide.

FlipperTD profile image
FlipperTD in reply tofbirder

I suspect that if cartons of salt in the supermarket, containing the anti-caking agent had 'Contains Sodium Ferrocyanide' in large lettering across the front of the pack, they'd sell less. The subtle, perhaps more sinister 'E535' is probably widely [and wisely] ignored.

helvella profile image
helvella in reply toFlipperTD

Perhaps they should put the whole EU evaluation (from 2018) on the packaging?

efsa.onlinelibrary.wiley.co...

FlipperTD profile image
FlipperTD in reply tohelvella

Your point is well made! The number and complexity of additives is bewildering. With my scientific background I prefer to see what's in it rather than have to look stuff up.

Granted, the font sizes used for labels is small enough already, without needing my microscope to decode them.

was918 profile image
was918 in reply tomcg-woo

Can I ask where you got hydroxycobalamin in theUSA? I've had a hard time finding that form. Thanks!

EiCa profile image
EiCa in reply towas918

It is easily obtainable through a compounding pharmacy though requires a doctor's prescription.

mcg-woo profile image
mcg-woo in reply towas918

Sure, no problem. I used to have my Rx filled at CVS, but its ordering process requires the pharmacist to call the warehouse to find out whether it’s available to order. If they look it up in the computer, will show it’s not available—very frustrating! I found this a hassle and I had problems consistently being able to access a steady supply. I recently changed my Rx to Walgreens after moving an hour south and it’s way better. I have it on automatic order and have had no problems filling it monthly for the past 5 months. The first fill will require additional verification from your doctor since the 30ml vial is packaged for doctor’s offices and clinics. Pharmacist will just call your doctor. There have been times when there’s a shortage—Actavis produces its product only in Portugal facility and there are at least two times over the past four years that it has been on back order for months. Perhaps, those issues have been resolved. If you work for the federal govt and have that insurance, you can obtain 90 day supply (3-30ml vial) through your mail order pharmacy. Just make sure you refrigerate after opening and toss vial after 28 days to ensure potency. Hope this helps!

was918 profile image
was918 in reply tomcg-woo

Thanks so much for the information!

fbirder profile image
fbirder in reply toEiCa

" I asked for hydroxy but was told with my genetic mutations, I need methyl. "

Whoever told you that was talking out of their bottom.

I presume they were talking about the MTHFR gene. Lots of places on the interwebs spread the nonsense that a MTHFR mutation means you need to take methylfolate. Leaving aside that almost everybody on the planet has at least one MTHFR mutation, taking methylcobalamin in preference to any other type cannot possibly make any difference. See this for a scientific explanation.

b12science.com/B12Science/D...

tl:dr Methylcobalamin is incapable of binding to the enzyme that converts homocysteine to methionine.

EiCa profile image
EiCa in reply tofbirder

Fbirder. I have a lot of respect for your opinion and experience as a scientist. I am not a scientist. I have read this link several times in an attempt to understand. It is awfully technical for someone with no chemistry background. I stopped right here, though, (early on in the article)

"In fact, all forms of B12, once they enter the cell, are equivalent." I have been told for a very long time now that the B12, and other nutrients, are not getting into my cells. Does that matter here, as far as the form of B12 trying to get in?

Thank you for your thoughts.

fbirder profile image
fbirder in reply toEiCa

If B12 is not getting into your cells then you are dead.

Who told you that B12 and other nutrients are not getting into your cells? Either you misunderstood them, or they were lying.

ellj profile image
ellj in reply toEiCa

Dr Gina Honeyman Lowe is really helpful but only works out of Boulder Colorado ,

EiCa profile image
EiCa

Point taken, fbirder. This is not an uncommon claim though. A doctor had my blood sent to a lab in Texas, US called Spectracell labs. (7 years ago). Their expertise (so they claim) is to measure what nutrients get into the cells. At the time my B12 blood serum level was sky high. That said, their study (valid or not?) showed a gross B12 deficiency in my cells. I never really acted on this as I was not sure what to make of it. I was showing signs of B12 deficiency then, that I did not take seriously. 7 years later I have a serious problem. I often hear the statement about "nutrients not getting into the cells". Not sure what to make of it really. What do you think about active B12 versus serum B12? My, perhaps, (mis)understanding was that "active B12" is what gets into the cells. Obviously I am not dead, so I am getting some B12 into my cells, but something is amiss as I am a meat eater and am eating what should be an adequate amount. I have not been diagnosed PA but have very high homocysteine, MMA and very low B12.

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