Query re forms and brands of B12 - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

Query re forms and brands of B12

MrsTuft profile image
8 Replies

Can someone talk me through the pros and cons of SI with different forms of B12 and also the different brands of a particular form please? I’m currently using Hydroxocolbalamin in the Pascoe brand. I am so unwell with neurological symptoms I want to make sure I’m doing whatever is optimal. Thank you.

Written by
MrsTuft profile image
MrsTuft
To view profiles and participate in discussions please or .
Read more about...
8 Replies
wedgewood profile image
wedgewood

I would say that you are very well served with Pascoe Hydroxocobalamin. You have to be patient though . Neurological symptoms can take a while to go completely and if they are of long-standing , may not clear completely.( no it’s impossible to be more precise ! Everyone is different ) Do take a daily modest 400mcg folic acid tablet , as B9 works together with B12 .

You know that you cannot overdose on B12 , so you can inject as often as you like .

Bast wishes .

.

MrsTuft profile image
MrsTuft in reply towedgewood

Thank you. Yesterday my arms and legs felt more normal and today numb again so it must be up and down.

Pickle500 profile image
Pickle500

Hydroxocobalamin is a depot form of injection which means it stays in your system longer. Generally, this means you can do every other day injections and sustain high levels for longer that will push your body to heal.

This is also more convenient since every day injections risk 'using up' injection sites quicker and also involve a process of injecting every day which can be inconvenient.

Daily injections are usually in tue cyanocobalamin form.

Pascoe and Panpharma depot/ hydroxo are the best ones. Hervert works but is a 2ml injection saline solution. And that is alot (too much) liquid to be injecting every other day. Once or twice a week is OK dor Hervert.

Rotate your sites regularly. I do deltoids (upper arms) and legs. So you can work in a clockwise motion and try not to hit the same spot. You can draw a pen mark or write down which area you've injected into.

Keep going with the same brand when you fins one that works. It can take months or years to heal. Dont give up, just keep on going.

MrsTuft profile image
MrsTuft in reply toPickle500

Thank you so much for taking the time to reply to me! That’s super helpful. I’ve only been injecting outer thighs - can you inject your own upper arm? I’m terrified of hitting bone…. I’ve been SI EOD for 8 weeks and now my arms have gone numb as well as my legs?! What is your opinion on cofactors please?

Pickle500 profile image
Pickle500 in reply toMrsTuft

My pleasure.

If you have long arms, as I do, you can use your right hand to inject into your left deltoid muscle, three fingers down from the acromion process (boney bit at the top). Its the same place as getting a vaccine. I find it's easier to focus on arms and I don't worry if Im injecting in the right place (like the legs which can be uncomfortable and also painful).

You shouldn't hit any bones. The needle shouldn't be long enough to penetrate into the bones.

"Arms have gone numb as well as the legs?" Do you mean like a pins and needles sort of numbness, where it goes numb but can come back quite quickly? Or is it a localiser numbness in one area?

Co-factors can usually be addressed with an OTC multivitamin containing all the B vitamins and 400mcg folate (b9). Masses of folate doesn't make sense to me and can also harm you if you take it for too long.

If you have a folate deficiency and the Dr prescribed pills then take those. But otherwise a general multimineral or multivitamin should be enough to support you.

Your body needs to find a groove with recovery. For me that was EOD injections into deltoids and thighs, a Wellman multivitamin, and sublingual b12 on the days I wasn't injecting.

It does take a long time to get improvements. And each phase of recovery is quite subtle. But eventually, I believe, you will get back what you lost. Maybe not 100% but enough to live a good life.

MrsTuft profile image
MrsTuft in reply toPickle500

I so grateful for your reply!

Can I get it wrong injecting into my deltoid? I’d like to have a go.

My arms and legs went totally numb so I was moving like Herman Monster. Terrifying. It’s slightly less numb now. Numb and weak. This was after surgery with anaesthetics and antibiotics which deactivate B12. I think I was barely surviving in 6 weekly injections from my GP before.

Hopefully too many b vits don’t harm you as water soluble (except B6!). I’m doing what you said as my folate is high. I have read that it can be high as you previously didn’t have enough b12 to activate/use it so I think I’ll keep an eye on it. Shame medichecks multivitamin test us about £700!!!

I used to do a sublingual on my days off before but stopped that. I wonder if that might help again? Which form do you use?

Good I hope you’re right. I’m a 46 year old self employed furness teacher and not being able to walk properly has been devastating.

Pickle500 profile image
Pickle500 in reply toMrsTuft

You cannot really get it wrong in your deltoid. But obviously if you're not comfortable then stick to the thighs. And rotate the spots. The thighs can be a more sensitive area but the arms are more used to it/robust. That's what I found anyway.

B9 (folate) in high doses can exacerbate nervous system problems and neuropathy. So if you take alot you can make things worse. And yes it is water soluble but that doesn't preclude overdose.

B12 cannot be overdosed. And if you have high folate already then there's little to worry about. B12 is the concern, not folate. You dont need to take folate and b12 'in equal measure' for b12 to work, but you do need folate stores. Which you already have. So a small amount is sufficient, regardless of what the facebook groups talk about.

Drs do not prescribe folate when someone only has a b12 deficiency.

High doses of b12 can restore the numbness. And if youre a fitness teacher, need huge amounts of b12!

Get an Hydroxocobalamin and Adenosylcobalamin sublingual mix at around 3,000mcg per day. And you can take multiple doses.

MrsTuft profile image
MrsTuft in reply toPickle500

I’m going to look for a YouTube video of deltoid SI as I’d like to give my legs a break!

Do you know why folate would be overdose-able and not B12? I did get nervous sutra problems from too much B6 once years ago.

I really hope I can get full use of my legs back. It’s been a shocker! And yes I realise now that in my job I must need loads. It explains why I’d go hill waking and then be unable to move due days. I thought I had CFS!

Isn’t it usually methylcobalamin and adenosylcobalamin that come as a pair? Which brand do you use? I think I might go back to doing my sublinguajs on my days off injections as that’s how I gut we’ll the first time this happened to me (I only had fatigue and foot drop that time). I need to learn not to listen to idiots who asked me why I was taking sublinguals as well as injections - I was because it worked!!

Thank you for your kind replies. Out if interest how bad were you and how long did it take to get better??

Not what you're looking for?

You may also like...

Bioavailablity of different forms of B12

Hi, Came across this article about comparing bioavailability of different forms of B12 and thought...
Sleepybunny profile image

B12 injection query

I went for my 8 weekly B12 injection today, a few days early due to holiday when next one was due....
Polly879 profile image

Query on changing brands and types

Hello all, I am desperately waiting for my usual Panpharma hydroxycobalamin acetate to come back...
Rosydawn profile image

Do different brands of B12 affect people differently.......?

I have always used Rotexmedica/Panpharma (from GP and from Germany). Due to the recent shortage of...
BeachArt profile image

Six months off all forms of b12

Hi I’ve been off all forms of b12 for six months now and got a serum b12 of 241pmol/l and an active...
Steap profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.