B12 frequently

Hi everyone happy new year to you all.

Does anyone else go downhill really quickly if they go a bit longer in between B12 jabs than they normally do? I’ve been doing really well and thought I had it sussed have felt so well lately, but due to Xmas and new year away I went 2 weeks longer than usual, this week I have felt so bad, migraine, complete lack of energy, stomach upset, so tired! I’ve managed to get a B12 tomorrow but I’m assuming it will take a while before it kicks in! So fed up with feeling rubbish, it’s making my anxiety worse as well!

Sorry for moaning I know a lot of you have it much worse but really fed up! 😞

[Nackapan]

Sorry that's happened to you. A horrid reminder you can't go longer without an injection.

2 weeks is quite a lot.

What is your usual frequency?

I'm hoping s blip for you .

I also had a ? Vestibular migraine wiping out 2xdays to remind me not to try and walk too far or talk too much!!

Glad to hear you've been doing well.

You will probably be on 'catch up. '

No-one needs these reminders .

Hope you pick up soon

[Hidden in reply to Nackapan]

Hi NackapanThanks for replying, when I first started on my B12 jabs I had them every 2 weeks and then went to Monthly, it’s working out how often to have them to keep yourself-symptom free isn’t it! and I suppose it’s different for everyone!

Wiping out two days with a migraine is very frustrating, and always seems to happen when life is busy!!

Take care x

[Boo222 in reply to Nackapan]

My mother is now 3 weeks overdue "due to a shortage of district nurses". I've emailed the practice manager asking her to forward my plea to the GP....... nothing! I don't know what to do next.

[Sleepybunny in reply to Boo222]

Hi,

Have you talked to PAS about this?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

The person who runs B12 deficiency info may also be interested.

B12 Deficiency Info website

b12deficiency.info/

"I've emailed the practice manager "

Keep copies/screenshots etc of communication in case there is a need for formal complaint in future.

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MP or devolved representative may be able to help.

A few people go to the Press/other media. I think of this as the nuclear option as likely to permanently affect relationship between patient and health professional but can be effective.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

PAS news item about contacting NHS England about treatment problems during pandemic.

pernicious-anaemia-society....

I am not medically trained.

[wedgewood in reply to Boo222]

You could try B12 nasal spray ( Amazon) to tide your Mum over . It seems to work for some members ( It doesn’t for me) I had to take to self-injecting . It’s wonderfully liberating .

[Nackapan in reply to Boo222]

Ask to have it done at the surgery if tih can get her there HCA can do them in the community .

J have yo chase my mum every time ringing the surgery pharmacy to make sure bqe in the house

[Boo222 in reply to Nackapan]

She's 95 and in a care home. I was forced to write to the practice manager in spring 2020 because everything went pear-shaped. The GP actually phoned me to say the records they'd received for her weren't complete (true) and a nurse would call ASAP (which she did). But this time my pleas seem to be falling on deaf ears. The care home haven't got a clue what pernicious anaemia is all about. To make matters worse, they've recently had a huge turnover of staff due to the vaccination debacle.

[wedgewood]

If there’s one thing that i’ve learned since joining this forum 7 years ago , it’s the fact that we are all so different in the regularity of our requirements of B12 injections. You’ve obviously left it too long and symptoms are starting to return . Don’t let it happen again ! Also stress can have effect . It’s a huge comfort to know that one cannot overdose on B12 Dony worry if you find that you need injections more often If you have to rely on surgery injections that are not often enough to keep symptoms at bay , and you cannot get extra , remember that you can get information here about self-injections , and how to get everything that you need . Best Wishes

[Hidden in reply to wedgewood]

Hi Wedgwood thanks for replying!Yes I guess as I’m fairly new to B12 I have to try and work out how often I really do need them by listening to my body! I think I’m still a bit in denial that B12 deficiency can cause such an array of symptoms and flaw you so badly! Having a doctor that tells you it’s not that because your levels are just over doesn’t help! It makes you constantly wonder if it’s something else! I suppose over time I will continue to see a pattern and trust I’m on the right track!

Have a good day 😀

[Vitb12___]

Hi.. yes. Definitely.. I inject every 3 weeks and if I go a day or two over symptoms come back with vengeance even stronger so I don’t even try to extend it now. If I have had more stomach issues in them 3 weeks I generally have to inject more frequently.. hope this helps and please don’t say sorry, I think we all understand how hard this can be as it can definitely get you down.. good luck xx

[Hidden in reply to Vitb12___]

Hi Vitb12Thanks for replying and your kind words. Can I ask how long it takes after your injection for you to start feeling the benefit if you have started getting symptoms?

Thanks

[Vitb12___ in reply to Hidden]

Normally about 12-24 hours to take effect depending on how bad I have let myself get!! Good luck xx

[Hidden in reply to Vitb12___]

Thanks, had mine this morning so hoping to feel better in next few days. Have a good weekend x

[Mandlou]

I did the same over Xmas didn’t keep regular injections. Normally twice a week and think once a week but long stretch in between .

I’ve just had terrible sinus pressure and feeling dizzy sick .. thought was a sinus infection but had my b12 after feeling awful all morning and it stopped gradually after that .. so that must be a symptom for me x

[Hidden in reply to Mandlou]

Hi Mandlou hope it didn’t affect your Xmas too much, honestly there are so many different symptoms aren’t there! So you have to inject twice a week? Do you do this yourself ? X