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Original poster

Substituting B12 injections with spray

52 replies

betwelve · 08/12/2023 09:50

I'm having lots of trouble accessing the injections I need. I've become very unwell but cannot pay privately.

I'm going to try a massive dose of the sublingual spray, although I don't think it will work as I have pernicious anaemia it is worth a try because I can't go on like this.

Don't say to contact the doctor, they are only offering the end of January and even then there's no guarantee they'll switch me to monthly. Even if they did there's usually at least month before they can fit you in.

I have thought about walking into A&E because I'm so fed up of the whole thing and desperate. If I were obese or a smoker or a drinker I'd get help. I've had nothing from the NHS except my birth but now that I need something they are a slow, inefficient, beaurocratic nightmare!

Any idea on how much I should try?

OP posts:
Original poster
betwelve · 08/12/2023 09:57

Also, I see Holland and Barrett's spray is methyl cobalamin, whereas the Betteryou is cyanocobalamin, which should I go for?

OP posts:
NotManyDaysTilChristmas · 09/12/2023 22:29

If you need B12 injections at presumably 12 week intervals, you should be having them, no questions asked by the GP surgery. I’d complain to the practice manager and absolutely insist you need these and expect to have them at the required interval. Have a look at the NICE guidelines and quote those. Can you change to a different practice, first making sure that they do let you access what you need.

HelloVeritas · 09/12/2023 22:32

Can you source your own and self inject? I order mine from Germany and inject weekly?

DoIOrNot · 09/12/2023 22:38

You wouldn’t get them monthly in any case, nice guidelines are, iirc, only 8 weekly at the earliest. Your body just excretes the excess in urine anyhow.

Methylcobalamin is probably better. But as pp suggests, you could self inject. They come from Germany with no custom issues. I will find you a link.

Original poster
betwelve · 09/12/2023 23:39

NotManyDaysTilChristmas · 09/12/2023 22:29

If you need B12 injections at presumably 12 week intervals, you should be having them, no questions asked by the GP surgery. I’d complain to the practice manager and absolutely insist you need these and expect to have them at the required interval. Have a look at the NICE guidelines and quote those. Can you change to a different practice, first making sure that they do let you access what you need.

Thanks, I have every two months but it's far from enough. I'm at the end of the term right now and I'm terrible, forgetting things in an almost dementia like state, cannot think straight, irritable, and most of all breathlessness. There's a hill I run up a few times a week and I can see the effects clearly as it wanes. Suddenly from being a regular 10k runner I'm huffing and puffing and struggling. Which miraculously is resolved about a week after the shot.

I have already had three appointments with various locums, each months apart and got nowhere. When you add it up six months have passed.and I'm worsening. A few weeks waiting here and a few weeks there and suddenly I can't bring to mind certain words, I can't formulate coherent thoughts sometimes.

I should be getting them but I'm not, and I'm not in any state to sort it out.

The NHS sucks.

OP posts:
Original poster
betwelve · 09/12/2023 23:40

I was diagnosed with this just before the pandemic and only started treatment this year, I was likely severely deficient for years before diagnosis, end result is serious damage. Probably irreversible.

OP posts:
headache · 09/12/2023 23:45

I have this week just ordered B12 for Amazon Germany, ordered it on Wednesday, it was here Friday. The site has an English translation option so was really easy. I will inject 2 x per week, I ordered 3 packs of 10 do this will do me 15 weeks, it came to £57.16

Injecting is really easy and doesn’t hurt at all, the needles are tiny, I get alcohol wipes and the needles ordered separately and a sharps bin.

Original poster
betwelve · 09/12/2023 23:50

Thanks, I can't afford that at the moment. That's why I am trying substituting the spray.

OP posts:
DoIOrNot · 10/12/2023 00:07

If you are already having them every 8 weeks then your B12 levels are not the problem.
Have you had recent tests for thyroid, vitamin D, folate and Ferritin?

Original poster
betwelve · 10/12/2023 06:27

I disagree, NICE guidelines recommend frequent injections until symptoms cease when there is neurological involvement.

OP posts:
DoIOrNot · 10/12/2023 07:14

You said 6 months had passed and about wanting them switching to monthly so apologies, I assumed you had already had a loading dose and were then put on 12 weekly then 8 weekly.
You still need other things ruling out though, as lots of other things seem to go hand in hand, maybe an early morning cortisol test too.

Unabletomitigate · 10/12/2023 08:40

Have you tried eating beef liver?
It is delicious sauteed with onions and mushrooms and an excellent source of B12 and iron. Cooked in butter, a fat source, the body can easily absorb the nutrients.
And it is cheap.

Madamlulu · 10/12/2023 09:02

HelloVeritas · 09/12/2023 22:32

Can you source your own and self inject? I order mine from Germany and inject weekly?

Hi Hello are you able to share where you buy these from please? I'm interested x

Original poster
betwelve · 10/12/2023 11:45

Unabletomitigate · 10/12/2023 08:40

Have you tried eating beef liver?
It is delicious sauteed with onions and mushrooms and an excellent source of B12 and iron. Cooked in butter, a fat source, the body can easily absorb the nutrients.
And it is cheap.

I've got pernicious anaemia so I cannot absorb B12 from diet, but thanks for the suggestion. Also, I'm not iron deficient.

OP posts:
Original poster
betwelve · 10/12/2023 11:54

Just answering myself to say I've found this document which would seem to suggest 1- 2 mg would be appropriate:

https://southstaffordshirejointformulary.nhs.uk/docs/cov19/UKMIQA_Oral-Vitamin-B12-preparations_May-2020.pdf

https://southstaffordshirejointformulary.nhs.uk/docs/cov19/UKMI_QA_Oral-Vitamin-B12-preparations_May-2020.pdf

OP posts:
ToughTitty · 10/12/2023 12:08

I've found the Holland and Barrett Sublingual B complex the best one for increasing my vitb12 levels

MaloneMeadow · 10/12/2023 12:08

My daughter also has pernicious anaemia. You need the injections as there is no other way that your body can absorb it. Sprays or anything taken orally won’t work

In what way do you mean that you’re in unwell? How long has it been since your last injection?

Booking an emergency GP appointment is an option or else you can pay to have the injection done privately at most beauty clinics for £30/£40

MaloneMeadow · 10/12/2023 12:10

@ToughTitty These are good for most people but not for someone with pernicious anaemia as they are unable to absorb it through dietary sources. Only an injection will work

hashbrownsandwich · 10/12/2023 12:15

As a HCP who administers B12 I really do find it alarming that people are telling you to self medicate by buying online.

Anything taken orally won't work for you so the spray isn't an option.

I think you need further investigations because it sounds like there is more going on than just lacking the B12.

ToughTitty · 10/12/2023 12:20

@MaloneMeadow I know - that's why I recommended the sublingual one (it means under the tongue). I have malabsorption so have to either get injections or take it this way. I'm not as severely affected as pernicious anaemia.

Lizziegaskellrocks · 10/12/2023 12:21

I've had b12 for about 14 years now. No way would I inject myself. I go every 12 weeks for my injection. Sub lingual sprays would absolutley not work. I would seriously think about changing Dr's to get the help you need. If I had to go every 8 weeks pretty sure my Dr's wouldn't bat an eyelid.

Original poster
betwelve · 10/12/2023 12:22

I go every 8 weeks; sadly it is not enough.

OP posts:
Lizziegaskellrocks · 10/12/2023 12:24

My nurse books my next apt when I'm there at my injection apt. Are you able to get this done for you? Tbf this is a recent development and for a long time I had to ring up 2 weeks before I was due an injection and couldn't always get an apt on time ☹️

MaloneMeadow · 10/12/2023 13:59

OP, if you’re going every 8 weeks then I’d be pretty certain that your B12 levels aren’t the issue and it’s a different problem. Make an emergency GP appointment in the morning or go to an out of hours service today if you feel that unwell.