Wrong b12 😞 : I ordered 100 1mil... - Pernicious Anaemi...

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Wrong b12 😞

scorpiojo profile image
scorpiojo
β€’22 Replies

I ordered 100 1mil ampoules of the C b12 not the H b12... What's going to be the issue with this? I had the Hydro at the GPs and I had bought 10 from mycare and used... I clearly didn't order right:(((

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scorpiojo profile image
scorpiojo
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22 Replies
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Gambit62 profile image
Gambit62Administrator

It may not make any difference - some people even find that cyano works better for them than hydroxo.

If it's any consolation I did the same with my last order - still working through the cyano - certainly not doing me any harm.

scorpiojo profile image
scorpiojoβ€’ in reply toGambit62

I feel a nit... So are there any reports it's not the same etc? Should I actually notice anything different? 😊 Thanks

Gambit62 profile image
Gambit62Administratorβ€’ in reply toscorpiojo

until you try you won't know. As far as I am aware there are no tests available that will predict how any one person is going to respond to each form of B12 - all you can do is try. I can't say that I've really noticed much difference between the hydroxo and the cyano - haven't kept a detailed list of symptoms and as I have so much other supplementation going on difficult to really draw conclusions but I do think I retain cyano a bit better than hydrox

scorpiojo profile image
scorpiojoβ€’ in reply toGambit62

Thanks... I'll have to just try it.. πŸ˜‚ hoping you carry on doing well... Yes, I have a little cry sometimes thinking about all the vits I am on wondering and hoping they are the trick to the fatigue x

Lisahelen profile image
Lisahelen

Have you actually recieved it yet?

If not, it might be worth you contacting them to alter your order.

We might not know german as a language but i would think that someone at the other end can talk english.

scorpiojo profile image
scorpiojoβ€’ in reply toLisahelen

Yes, I received it this morning.... On with the new... :/

Foggyme profile image
FoggymeAdministrator

Hi Scorpiojo. Just to let you know...seemed to recall that the maintenance dose for cyanocobalamin is given more often than the maintenance dose for Hydroxocobalamin.

So just looked up the patient information leaflet (listed under trade name, Cytamen) and it states that the maintenance dose should be given every month (as opposed to the three monthly regime for Hydroxocobalamin).

I guess if you were injecting more regularly than the three monthly for Hydroxocobalamin, then if follows that you would have to inject even more regularly than than one monthly for the cyanocobalamin. If you know what I mean...

I think that clivealive uses cyanocobalamin, so,perhaps he will advise if he sees your post and this reply?

Would be interested to see how it goes....was thinking of giving it a go (Iseem to be becoming a little sensitive to the Hydroxocobalamin injections).

Good luck with it.

scorpiojo profile image
scorpiojoβ€’ in reply toFoggyme

oh I was going to do maybe once a week as 100 will last a year ... The stuff lasts until 2019... Yes all experiences and thoughts more than welcome... It's a life saver x

fbirder profile image
fbirderβ€’ in reply toscorpiojo

As with all these things - experiment.

The best course is to decide on a frequency and keep a diary of symptoms. If you find they start getting worse before the next jab, then decrease the gap between them until it's OK most of the time.

scorpiojo profile image
scorpiojoβ€’ in reply tofbirder

Thanks fb x... With me I have the d and b12 thing ferritin and folate thing and thyroid.. It's so hard to know what causes bloody what... Add I feel the adrenal's are not in good shape, how do you even start to guess... If there were tests you got that you would then go on to be treated for it would be helpful... This taking mountains of vits t3 and having to space them out is stressing me out... Vicious circle 😊

clivealive profile image
clivealiveForum Support

Hi scorpiojo I've been on Cyanocobalamin 1000mcg every four weeks since 1972 as that was what I was "put on" when diagnosed with P.A.

I was "tried" on Hydroxocobalamin at some time during the 80s but had some side effects and I couldn't last the three months so was put back on cyano.

The perceived difference is that the cyano doesn't "remain in the system" as long as the hydroxo which is borne out by the difference between the injection intervals - four weeks as opposed to 12 weeks.

As far as I'm aware the effects are the same just that cyano is needed more frequently.

I hope this helps.

scorpiojo profile image
scorpiojoβ€’ in reply toclivealive

Ouch... More pricks and needles then... Thanks Clive... When you say side effects what may I ask were they... Thanks for reply 😊

clivealive profile image
clivealiveForum Supportβ€’ in reply toscorpiojo

I recall having headache, dizziness and a rash but as no two people in the world are the same I cannot be taken as the norm.

As fbirder says "As with all these things - experiment." and find out what's best for you

scorpiojo profile image
scorpiojoβ€’ in reply toclivealive

Of course... What a shame you had that to deal with... Glad you could eliminate it to the ampoule's... Thanks for your help I appreciate it x

Ktululady profile image
Ktululady

I did the same thing and yours is the third message I have seen like this lately, I think they are sending out the wrong one.

scorpiojo profile image
scorpiojoβ€’ in reply toKtululady

I might look actually then.. Same boxes nearly.... X😊

Galixie profile image
Galixie

Before you start taking the cyano, do you have any family history of Leber's optic disease? If you do, you should not take cyano. Also, if you happen to be a heavy smoker or have high occupational exposure to cyanide, it is a good idea to avoid taking cyano. Otherwise, it is a perfectly safe and widely used version of B12. I took it for years before recently switching to methyl for price point reasons.

scorpiojo profile image
scorpiojoβ€’ in reply toGalixie

Would a Glaucoma link be a concern

Galixie profile image
Galixieβ€’ in reply toscorpiojo

Probably not, but I am not informed enough to know. Here is a description of Leber's: ifond.org/lhon.php3

scorpiojo profile image
scorpiojoβ€’ in reply toGalixie

Thanks I did Google it and think I will be ok... IOP is responsible for Glaucoma and destroys the optic nerve.. This is something else... Thanks I very grateful for the heads up as I will ask before taking

ndodge profile image
ndodge

Hi, I have secondary glaucoma from using corticosteroid drops in the eyes for a chronic autoimmune eye disease. I used Cyano for a year with no problem to eyes, also told my ophthalmologist and he was okay with it.

scorpiojo profile image
scorpiojoβ€’ in reply tondodge

Thanks xx I have a link to put up watch this space

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