Hydroxocobalamin injection frequency - Pernicious Anaemi...

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Hydroxocobalamin injection frequency

Lettie_WP profile image
8 Replies

Hi,

I've messed up and forgotten to book my B12 Jab (8 weekly) and now they can't do it until three weeks after my due date. I will be on my knees by then! (Why i never twig at around 6 weeks I don't know as i get symptoms from at least then :dizzy: ).

Anyway, I have found a private means of getting a hydroxocobalamin injection, but, it will mean the NHS on is only 3 weeks on. Will I be OK, or do I need to try to move the NHS one? I've a feeling they won't be happy if I tell them why, but if I don't tell them why they might try to increase my gap between injections.

Any advice?

Thanks,

Michelle

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Lettie_WP profile image
Lettie_WP
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8 Replies
SallyRees profile image
SallyRees

Hi, Michelle

I’m sure others will come and advise you soon but if it were me I’d leave the appointment as it is. The only risk imo is you’ll feel even better and will realise you need them more frequently 😀

wedgewood profile image
wedgewood

I would just get the private injection , say nothing to your surgery ,and then get the NHS one .If you feel that you need your B12 injection more regularly, do ask for that . If you fail , think about self -injecting like so many of us have been forced to do. It is cheap and easy . You can get information here .

Lurcher-lady profile image
Lurcher-lady in reply towedgewood

Agree, you can’t overdose and the GP will never know😉

Lettie_WP profile image
Lettie_WP

Thank you both - I will keep the two appointments. It will be interesting to see how I feel after a much shorter gap. I will report back :)

Sleepybunny profile image
Sleepybunny

Hi,

I often forget to book my NHS B12 injections which I get every 3 months. I should get them every 2 months as I have neurological symptoms but don't have the energy to fight them.

I do tell the nurse each time that I should get them every 2 months.

BNF hydroxocobalamin

bnf.nice.org.uk/drugs/hydro...

If I was in a similar situation, my instinct would be to keep both appointments but you should do what's right for you.

I actually need injections every week or possibly more often as symptoms start to return very soon after an injection but there's no way NHS would agree to that so I treat myself.

"Why i never twig at around 6 weeks"

Have you considered keeping a daily or weekly symptoms diary which scores severity of several symptoms and maybe keep a brief note of other symptoms present ?

If symptoms return, worsen or new symptoms appear before next injection that to me suggests injections should be more frequent.

Link about writing to GP about B12 deficiency

b12deficiency.info/writing-...

Point 1 is about being under treated for B12 deficiency with neurological symptoms.

nmayow profile image
nmayow in reply toSleepybunny

I have an injection every 2 months and by the 5th week I’m so bad my mood swings are vile everyone says but I can’t recall that I’ve said anything. the nurses have so many times said go back to the dr to ask for a monthly that’s been probably 8 months or more as dates and times I can’t register and they say no . I have now given up . I’m still waiting for the neurologist as I have a enlarged white space which showed up on the the mri . Everyone looks at me as if I’m a hardcore druggie as I’m so pale in the face with big black eyes. If I say anything about self injecting they have a go at me so go figure I can’t work this out

cloudspotting profile image
cloudspotting

Some good advice here. I was also in a similar situation to you and eventually decided to self-inject and this has made a huge difference. I've been battling with GP for more frequent treatment and have managed to finally persuade my surgery to offer a trial 8 weekly injections because of my increasing neuro symptoms.

I've not discussed self treatment with my GP as I feel it may prejudice my current prescription. The PA society has been a big help and support and this forum gave me confidence to self treat. I'm self administering a 4 day - weekly injection of Hydroxo and keeping a symptoms diary is really helpful.

Lettie_WP profile image
Lettie_WP

Just thought I'd update. I have continued with the 4 weekly injections: every 8 weeks with my NHS GP and and every 8 weeks privately). I am convinced I have more energy and don't feel like I'm flagging before my jab is due. It cost me around £47 every 8 weeks, and is so worth it.

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