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Self injecting b12 - ampoules changed from red to yellow?

18 replies

FfeminyddCymraeg · 11/03/2023 21:56

I self inject B12 due to the NHS regime and recently purchased some amps with folate included.

When they arrived they were the typical red colour (although 2ml instead of 1ml due to folate). However, some of the amps have changed colour, despite being stored in a cool, dark colour.

Are they OK to use? This hasn’t happened with straight B12 before so I’m unsure 🤷🏼‍♀️.

Any ideas? Pic below. Both strips are from the same box and stored in the same way.

Self injecting b12 - ampoules changed from red to yellow?
OP posts:
Bumblbeestungmyknee · 11/03/2023 22:36

You’ve got cynocobalomin.
the stuff the nhs inject patients with (& I buy from Germany to self inject) is hydroxocobalamin but no, I would not inject myself with that if it was red to begin with.

Skulldrudgery · 11/03/2023 22:40

Is one colour ampoule the b12 and the other the folate?

UnfinishedBusiness · 12/03/2023 07:29

The bottles aren’t very clear for me to read, but it looks like I can see vitamin B12 on one in the red strip, and one saying folsaure (German for folic acid) on one of the yellow ones (which is usually a yellow colour).

workbasedquestion · 12/03/2023 07:44

HCP here. This is lunacy.

FfeminyddCymraeg · 12/03/2023 10:41

UnfinishedBusiness · 12/03/2023 07:29

The bottles aren’t very clear for me to read, but it looks like I can see vitamin B12 on one in the red strip, and one saying folsaure (German for folic acid) on one of the yellow ones (which is usually a yellow colour).

🙈🙈 that’s exactly what it is. I assumed because it was a larger amount that it was combined but in the cold light of day I can see that they are separate. Oops

@workbasedquestion Agreed but the NHS regime for B12 sufferers is woeful. One injection every 8 weeks simply isn’t enough for me. And they stopped them completely during Covid. My neurological symptoms get so bad I’ve little choice but to self inject. This is is really a life saver for me.

OP posts:
FfeminyddCymraeg · 12/03/2023 10:45

@Skulldrudgery yes, you’re right. I’d obviously just picked up the b12 a couple of times previously and it wasn’t until the box fell open that I’ve realised 🙈

OP posts:
UnfinishedBusiness · 12/03/2023 10:47

FfeminyddCymraeg · 12/03/2023 10:41

🙈🙈 that’s exactly what it is. I assumed because it was a larger amount that it was combined but in the cold light of day I can see that they are separate. Oops

@workbasedquestion Agreed but the NHS regime for B12 sufferers is woeful. One injection every 8 weeks simply isn’t enough for me. And they stopped them completely during Covid. My neurological symptoms get so bad I’ve little choice but to self inject. This is is really a life saver for me.

I know. I’m on it myself and I’m really flagging by month 2😔 Hadn’t realised you could buy it online, if you wouldn’t mind @FfeminyddCymraeg could you pm me a link to where you buy it from. Many thanks.

FfeminyddCymraeg · 12/03/2023 11:11

UnfinishedBusiness · 12/03/2023 10:47

I know. I’m on it myself and I’m really flagging by month 2😔 Hadn’t realised you could buy it online, if you wouldn’t mind @FfeminyddCymraeg could you pm me a link to where you buy it from. Many thanks.

It’s dreadful, isn’t it? My GP knows I self inject and whilst they can’t overtly endorse it, they have said they recognise the NHS regime way below how other countries treat B12.

I get mine from Amazon.de and it only takes a
few days to come. I don’t speak German but you can login using your UK details and the buttons are in the same places as Amazon.co.uk so it’s easy enough.

I buy 100 subcutaneous needles at a time and a sharps bin. They last ages as - I inject once a week 😊

OP posts:
FfeminyddCymraeg · 12/03/2023 11:15

I bought these previously and they worked out very good value. I only purchased these new ones as I thought it works save me taking oral folic acid 🙈

Self injecting b12 - ampoules changed from red to yellow?
OP posts:
loudbatperson · 12/03/2023 11:20

I can understand the frustration at the regime provided by the NHS, however doesn't the misunderstanding here, regarding what is in the vials, show how dangerous it can be to be injecting yourself with medication bought online?

In this case it hasn't caused harm, however how easy would be for a more serious mistake to occur, due to not being able to read the packets correctly.

kingsleysbootlicker · 12/03/2023 11:25

loudbatperson · 12/03/2023 11:20

I can understand the frustration at the regime provided by the NHS, however doesn't the misunderstanding here, regarding what is in the vials, show how dangerous it can be to be injecting yourself with medication bought online?

In this case it hasn't caused harm, however how easy would be for a more serious mistake to occur, due to not being able to read the packets correctly.

You are correct, it could be dangerous.
But not as dangerous as being left without proper B12 treatment, which is what the NHS regularly does

I also import B12 vials from the EU (where they are available over-the-counter in many countries), there are thousands of us doing so, because it is the only way to have a functioning life

FfeminyddCymraeg · 12/03/2023 11:28

loudbatperson · 12/03/2023 11:20

I can understand the frustration at the regime provided by the NHS, however doesn't the misunderstanding here, regarding what is in the vials, show how dangerous it can be to be injecting yourself with medication bought online?

In this case it hasn't caused harm, however how easy would be for a more serious mistake to occur, due to not being able to read the packets correctly.

I agree to an extent but B12 is water-soluble and so there’s no tolerable upper limit, which is why I’m happy to SI. I’ve always known this and I would be doing it with anything else where toxicity was a serious risk.

As I said, I’ve SI successfully for a few years and it was only buying new ones that prompted this post. I hadn’t realised that the B12 and folate were separate as the ampule is twice the size of my previous ones so (wrongly) thought they were a combined vial. I’ll be going back to my previous ones as these don’t work out as such good value given the above.

Saying all this, doesn’t the fact that it is freely available to buy for personal use in other EU countries (on Amazon no less) demonstrate how widely it is used elsewhere. You can buy it easily OTC in other countries - which my friends do when on holiday.

OP posts:
FfeminyddCymraeg · 12/03/2023 11:31

Cross posted witj @kingsleysbootlicker so said the same but far more succinctly than I did.

My lowest B12 reading was in the 90s, which if left untreated can cause irreparable cognitive deficits, especially if it went any lower. The NHS reference range is 200 something. In some Asian countries, treatment starts at a reading less 500.

The NHS woefully under-treat B12 deficiency.

OP posts:
loudbatperson · 12/03/2023 11:34

I don't mean specifically to these injections, but more generally. If there is any issue leading to the wrong thing being in the packet then it is much less likely you will notice if you cannot read the language the packet is printed in.

Couldn't a private prescription here fill the gaps left by the NHS in a much safer way?

In regards to them being available OTC that is fair enough in the case of B12, but as a general rule just because you can freely buy medication abroad doesn't mean you should be able to here. In many countries you can buy antibiotics and heavy duty painkillers as easily as sweets, it doesn't make it a good idea.

Bumblbeestungmyknee · 12/03/2023 11:37

The reference range for my lab is 150-850 something. Nice guidelines say it can be given from 8 weeks, but rarely is.

Nice guidelines also say injections for a loading dose should be every other day until the patient is no longer symptomatic but that never happens. A loading dose is 6 injections over a couple of weeks, given every other day, and that’s it! Awful.

I order from a pharmacy in Germany. It’s about £14 for 10 ampoules.

FfeminyddCymraeg · 12/03/2023 11:40

@loudbatperson Agreed. However, it’s a balance of risk for me. I cannot function without it - I can barely string a sentence together if my levels get too low and I feel like I’m losing my mind.

No, my GP can’t provide a private prescription for this unfortunately. I’m on most frequent dose they’ll permit in my area and to deliver it any more frequent would require a referral to a haematologist, which it doesn’t warrant sadly.

There are whole Facebook groups dedicated to this issue - with thousands having to SI to keep their heads above water, especially during Covid when my own practice suspended injections for 9 months as they were ‘non-essential’ albeit latterly in the pandemic they did recognise that they are essential 🤨🤨

OP posts:
NeverDropYourMooncup · 12/03/2023 12:12

FfeminyddCymraeg · 12/03/2023 11:11

It’s dreadful, isn’t it? My GP knows I self inject and whilst they can’t overtly endorse it, they have said they recognise the NHS regime way below how other countries treat B12.

I get mine from Amazon.de and it only takes a
few days to come. I don’t speak German but you can login using your UK details and the buttons are in the same places as Amazon.co.uk so it’s easy enough.

I buy 100 subcutaneous needles at a time and a sharps bin. They last ages as - I inject once a week 😊

It's a hell of a lot safer to select the translation option rather than guessing.

Self injecting b12 - ampoules changed from red to yellow?
NeverDropYourMooncup · 12/03/2023 12:23

Oh, and this is from the leaflet provided by the manufacturer (we'll ignore that they flog homeopathy)

For initial treatment 2 times a week 20 mg folic acid and
Inject 1500 μg of vitamin B12 intramuscularly or intravenously.
After the tissue stores have been replenished, in the case of intestinal absorption disorders, an intramuscular administration of 20 mg is recommended
folic acid and 1500 μg vitamin B12 at intervals of 4 weeks
to do. Between injections, folic acid is oral daily.

Don't order medications in a language you don't speak and haven't thought to translate.

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