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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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
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"
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. 🙂
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
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
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.
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.
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 🙏
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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