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B12 injection frequency

SAM2608 profile image
15 Replies

Hello

I’m just looking for a little advice on behalf of my daughter. She has recently moved areas and so has a new GP (Manchester). She was able to have her B12 injection every 8 weeks previously but has just been told that she will now have to go to 3 months. She becomes symptomatic around 6-8 weeks. I’d like to support her in composing an email to the surgery - is there anything I can include to give the request some gravitas?

Should have said, she’s had a diagnosis for last 5 years of P.A.

thank you x

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SAM2608 profile image
SAM2608
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15 Replies
Nackapan profile image
Nackapan

Ask them for a reason.NICE guidelines state clearly 2-3 monthly and that regime easy to prescribe.

Mention any neurological symptoms as the 8 weekly regime mentioned for thise specifically.

Headaches ect .

I'm weary if hearing from uniformed/not trained medics saying

"Everyone has 3 monthly '

Also mention PAS ( hopefully she us a member)

They offer advice to professionals.

G.ps can prescribe

In the patients best interests

I would suggest seeing another G.p .

I went through all y at my practice.

If you write jeep it short .

Just ask for 8 weekly to be reinstated as symptoms return.

Copy in practice Manager.

Thus will be scanned on her notes.

She does not need b12 to be tested as means little when on injections.

Go by symptoms

SAM2608 profile image
SAM2608 in reply toNackapan

thank you so much- that’s so helpful and I really appreciate x

Misty58 profile image
Misty58

Have her notes not been forwarded from her previous GP, it should be highlighted. If not get back in contact with them to email new GP with the information. Also if she has Patient Access app or NHS app the medication and frequency should be stated

HugoMinney profile image
HugoMinney

You can request a copy of Dr Chandy's book to give to a doctor, for free on b12d.org/book and you can also download it. The chart to refer to is Chart 3-2 (in chapter 3, of course) on page 77 "effect of vitamin B12 recycling efficiency on frequency of injections"

SAM2608 profile image
SAM2608 in reply toHugoMinney

Thank you - really helpful!

Altcrew profile image
Altcrew

Hi there, if you go on to the pernicious society website, I think there is a letter you can download. I battled for years to get mine sooner as I was symptomatic after 8wks, but the best they would offer me was 10wkly injections. The trouble is, is that GP's go off nice guidelines and not the individual. Good luck. I hope she gets sorted. 🙂

SAM2608 profile image
SAM2608 in reply toAltcrew

Thank you very much - I will look for the letter. Really hope you get the treatment you need too - it’s such a difficult journey at times ☹️

Caz00 profile image
Caz00 in reply toSAM2608

This story is so infuriating. I'm 68 and was diagnosed with PA when I was 35! I have moved 3 times over the years and each time have had a fight to get my injection every 10 weeks. Same old line ..... the injection is made to last 12 weeks. Well, for me it doesn't! I have cried to GPs saying how at 9 weeks I actually feel ill. Constant dull headache, exhaustion, foggy brain and generally feel unwell. My life has been ruled by my injection date .... I always check calendar to see if I'll feel well or crap for social events. Have never booked a holiday when injection is due. For past 9 years I have managed to have them 10 weekly, although I know 8 weekly would change my life for the better. Just can't be bothered to fight for it and have someone in the medical profession (who I thought would want me to always feel happy and well) watch ne sobbing .... then tell me no ! It takes (for me) 36 hours fir injection to kick in, then ..... ping ! I'm happy and healthy. FIGHT FOR YOUR DAUGHTERS INJECTION ..... DON'T GIVE UP ! xx

SAM2608 profile image
SAM2608 in reply toCaz00

Thank you 🙏 it makes be so sad and ANGRY to hear your experience. Just awful to be treated that way and feel like continually going to battle…it’s rubbish! Thank you for taking the time to reply- I really appreciate it wish you well xxx

Sleepybunny profile image
Sleepybunny

Hi,

Apologies for short reply...finding typing difficult at moment.

Should be useful info in links below.

Some links I post may have details that could be upsetting. Might be worth checking before passing them to your daughter.

Writing letters to GP about B12 deficiency

There are letter templates in link.

b12info.com/writing-to-your...

Keep copies/screenshots and consider asking for written confirmation that letter has been received.... useful if need for formal complaint.

My personal preference is for writing a short formal letter. I include a request to file letter with my records.

Is your daughter a member of PAS?

pernicious-anaemia-society....

PAS members can access a helpline.

pernicious-anaemia-society....

PAS have lots of useful leaflets eg "Helpsheet for Patient-GP Discussion"

pernicious-anaemia-society....

Has she thought about joining a PAS support group?

I think people can attend some meetings without being a member. I think most meet online.

pernicious-anaemia-society....

I left detailed replies in these threads with useful info for those struggling to get treatment

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

Patient Safety (UK)

healthunlocked.com/pasoc/po...

I'm not medically trained.

Sleepybunny profile image
Sleepybunny

"so has a new GP (Manchester)"

Worth looking up local B12 deficiency guidelines used by trusts and ICBs in her area.

Integrated Care Boards and Trusts in the North West

england.nhs.uk/north-west/c...

I think this is probably the guideline her GP would refer to but check area covered.

panmerseyapc.nhs.uk/media/2...

If you can't find the local B12 deficiency guidelines for her area then best bet is probably to submit a FOI (Freedom of Information) request to her ICB asking which b12 deficiency guidelines they use and for a link to or copy of them. Try to get exact title of the document.

Many local guidelines will be reviewed over next couple of years due to new NICE B12 deficiency guideline published earlier this year (2024).

Search online for "NICE B12 deficiency guideline".

I am not happy with some parts of the new guideline....too much emphasis on oral treatment in my opinion.

There is a pinned forum post about it but I suggest reading the whole document.

SAM2608 profile image
SAM2608 in reply toSleepybunny

Wow, thank you so very much for sharing this

Hockey_player profile image
Hockey_player

It so much easier to learn how to self-inject. Every 8 weeks is not enough if she gets symptomatic at 6 weeks. Once a month would be better. It is important to keep the symptoms at bay to avoid permanent nerve and spinal chord damage. There was an interesting talk posted on here recently by a doctor. He says the every 3 months guideline is based on some bogus math that assumes the person has a functioning reuptake system for B12. Those of us with PA do not. It is likely enough for someone without PA who has it for a dietary reason like being vegan. Probably not often enough for people with PA. Some people need it a lot more often. On this forum we have some who need it daily or even more than once per day. Taking control by self-injecting will allow her to experiment to find her own maintenance dose.

SAM2608 profile image
SAM2608 in reply toHockey_player

Thank you- really tricky as she is very resistant and fearful of this option. I will continue to gently suggest it and maybe, in time, she will consider it. It’s been a lot for her psychologically to get to grips with the condition, so I don’t push it too much about SI- she’s had ‘top up’ injections in between at a local clinic. I’ll try to look up the talk you mentioned- thank you 🙏

Hockey_player profile image
Hockey_player in reply toSAM2608

I hope you convince her! The problem is that the symptoms mean there is damage to the nerves. There can also be spinal chord damage too but that might not be felt until it is too late. It's better to get enough B12 to avoid any permanent damage.

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