Anyone have b12 deficiency?

[Shiningout]

OK so a few months back I was diagnosed with b12 deficiency, my dad had pernicious anemia and I've been told ill be on the injection for life, okay, fine. I was just happy to be getting some relief from. The pins and needles and bone crushing tiredness. I had 4 loading injections weekly and then I've now got a 12 week wait to have my next injection, it will then be every 12 weeks.

The problem is, after 4 weeks of no injections my symptoms came back, pins and needles constantly, constant headache, fatigue, anxiety, brain fog. I've still got another 8 weeks to go and I am just feeling so shit that I'm having to go this long inebtween. I remember my dad having them every 3 weeks I think so not sure why nice guidelines are now 12.

Do you think there is any scope to ask for more frequent? I don't really have spare cash but I'm considering getting a private top up injection half way Inbetween my NHS ones as I am feeling so rough.

Google the Nice guidelines -although I’m aware there were some changes recently that I haven’t read.
It used to say injections every other day until no longer symptomatic, in reality it is generally only 6 injections over a couple of weeks then 12 weekly… so a lot of people order it from Germany where it’s sold over the counter and self inject.

4 injections for a loading dose seems really low.

Nice guidelines have always been 8-12 weeks so I don’t understand how your dad had them every 3 weeks, could he have been having injections for other things in between & misremembering?

Definitely speak to someone again if you are still symptomatic.

Let me know if you want a link to order from Germany. It’s around £18 for a box of 10 & you can buy injection kits (needles /syringes) on Amazon or eBay (&other places).

I've today had my second of six loading doses I hope they make a difference

They can agree to more frequent injections, but I would suggest you get your blood level checked after say 4 weeks if this is when you start to feel rough, to see what the level actually is. My daughter has 12 weekly, and at around week 10 she starts to struggle.

GPs do generally not know enough.. Even NICE guidelines are useless.
I went private.. now l SI every week.
You cannot overdose on B12 .. anything your body doesn't need comes out in your wee.
Its been a life changer for me.
Helped with my Fibromyalgia.. l used to get up to 20 mouth ulcer a week ( no more) had BV every month.. no more..
There is FB groups.. they are so helpful.
We send for our b12 and needles from Germany .. works out a £1 per shot.. all legal.

I only had 4 loading doses and mine was really low apparantly, it seems to depend on area on what you get. I've asked for a telephone appointment about it next week as I can't go on another 6 weeks like this. I just feel why should I have to pay for private injections when I don't have the money and also I have a condition that needs treating! It doesn't seem fair to me but I guess a lot of things arent. I also have a few autoimmune conditions so I get tired anyway and this is just making things so much worse living day to day life. Thanks for the responses :)

no point testing levels if injecting, they will be artificially high

I also SI now, my GP stopped my injections that I been on for 14 years during Covid and will not re-start. I felt like I was dying after 9 months off them, so I order from Germany now and do every 8 weeks, any longer and I start getting dizzy again and forgetting the words to things

How come everyone is ordering them from Germany? Is it just the price that's a lot cheaper?

because they are prescription only in the UK. I get a box of 10 which are not expensive and order my syringes from a UK site for around 30p each plus P&P

No point in testing once you have had does, you will be deemed "cured" as the levels will be high.

GP's mostly do not know anything about pernicious anaemia and are under the impression you can overdose on B12, that is not true.

I too buy mine from Germany and self inject.

I buy mine in France . Around £4 for six vials

Thanks guys. I have an appointment with GP for next week but if I don't get any joy think ill have to go down the self injecting route. Only question does it hurt to self inject?? I find it quite painful having the injections more so than others I've had and I don't know whether I'd wimp out doing it myself

I have Pernicious Anemia and have been prescribed monthly injections. That seems pretty standard here in the US.

Never had any symptoms either prior to diagnosis or after I started getting injections.🤔

question does it hurt to self inject??

I self inject in the outer thigh muscle and honestly don't feel a thing.

A consultant told me these are good

https://www.abhealthandwellbeing.com/product/b-12-energy-patch-5000/

Should have been 6 loading doses. And if you’ve neurological issues they should continued injecting until the neurological symtoms disappear.

you can always buy the b12 and needles and inject yourself. Lots of people in the U.K. have to do this because the nhs undertreat b12.

I had 6 loading doses and then 12 weekly. I now get every 8 weeks 1ml at the GP but self inject b12 at home. 4ml in one go once a month. This is making a big difference to the quality of my life.

Joine some b12 groups on FB and they can direct you to buying from reputable sites.

I pay £27 for 6 months supple and get needles and syringes from medisave.

GP is aware I self inject and has checked what I purchased

I have pernicious anaemia and I found I had to have a few injections before I felt the full benefit. I go a good 2 months now before symptoms return.

Could you post the link where you buy from or PM me of that’s ok? I’d also appreciate a link to the Fb page if you don’t mind.

I was getting it every 3 months for donkey's years. It would wear off much earlier than that.

Last year my GP changed it to every 2 months after I asked him about it. I can really feel the difference.

This is really interesting- DH has these every 10 weeks- he has UC and he had to fight for 10 weeks as they argued 12. One snippy nurse said he had to wait for 14 at one point as he had an 'early' dose due to being non functional- he works a full time job and basically had to have a docs appt and say- you give me this jab or give me a sicknote for a month as I can't carry on- what a load of crap!
To be fair the GP said you know when you need it so you can have it whenever. Doesn't stop the nurse trying to delay it but he just repeats he needs it or a GP appt to get signed off work and they agree. I'll look into home injections as well now- there is a def decline after 8 weeks he is so tired and stumbles through 2 weeks.
I've also had to intervene in my poor old 80yrs old mum with COPD- same docs were limiting her Ventolin inhaler so she ended up lying down all day so she didn't need it. They have thankfully doubled her prescription- the amount was initially agreed 10 yrs ago and she is far worse - consultant at hospital upped recommendation of dose but GP never did anything.