Am I getting the correct injections. - Pernicious Anaemi...

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Am I getting the correct injections.

markhobson profile image
5 Replies

Hi, I was diagnosed as low vit B12 a couple of years ago, I had initial 5 or 6 injections then went onto one every 12 weeks. I was still feeling very tired amongst a lot of other symptoms, memory problems, tingling feet. etc, etc. Then having persuaded my doc he then changed to every ten weeks.

After all this time, I still feel tired, I get a good nights sleep but wake and from early morning im constantly yawning throughout the day. I also recently had another test, my B12 was 400 and also i found out im low D3, so im also ontablets to sort that out.

I have only just realised that he has been giving me cyanocobalamin, and im sure ive read somewhere that it should be given monthly. Whereas Hydroxocobalamin is the one for 3 monthly injections.

Im going to be moving from Yorkshire to Fort William, scotland in a few weeks and will be registering at a new practice for my next injection due in November. Should I be asking about this or is what im getting ok anyway.

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markhobson
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Poppet11 profile image
Poppet11

I didn't even know they still gave cyano injections. Yep, they are supposed to be monthly.

By the way - doctors have been getting it wrong. They have been treating b12 deficiency as if it is a blood condition rather than neurological.

You get the neuro symptoms first and the serum b12 test doesn't pick those up just the haematological.

So the treatment you are getting is to keep your blood problems at bay but is doing little to resolve the neuro problems.

Gambit62 profile image
Gambit62Administrator

Make sure that you get a copy of the blood test where your B12 deficiency was first diagnosed - as may help with trying to get new doctor to listen.

cyanocobalamin is generally administered monthly and I also wasn't aware that it was still being used in the UK - where the recommendation is hydroxocobalamin.

You appear to have neuro symptoms so regime should be hydroxocobalamin every 2 months

This is link to NICE guidelines

cks.nice.org.uk/anaemia-b12...

Having said that a lot of people still find that 2 months isn't enough for them and symptoms return well before that. Nobody seems to have been able to come up with a genuine scientific explanation for why hydroxocobalamin is administered less frequently than cyanocobalamin though there was a study in that showed that hydroxocobalamin is, on average retained twice as long as cyanocobalamin - however the study also highlighted that there was a huge variation in the studied population and that on-average is very far from in all cases.

hydroxocobalamin is closer to the active form of B12 your body uses which is a definite advantage. However, methylcobalamin is even closer and a lot of people find that this works better for them ... though I don't think it is available on NHS.

engels profile image
engels

Your doctor should not be prescribing cyano. Hydroxo replaced cyano as the recommended treatment in the UK a long time ago (at least 20 years I believe). Refer your doctor to section 9.1.2 of the British National Formulary.

markhobson profile image
markhobson in reply toengels

Is it still used by some then, I'm only assuming it is cyano as that's what's written on my prescription so maybe it is the other. Will be asking my new gp once I get registered.

Hi,

I'd definitely ask to see what kind of B12 you have been given/ prescribed and yes cyanocobalamin standard maintenance is once a month not 3 monthly. There are more GPs that make that mistake, best make sure you get better treatment this time!

Kind regards,

Marre.

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