Buy your supplies more frequently, 3 months max.

[Oneash]

Where are we with being able to talk honestly about self injecting? So I've been self injecting every other day since September 2023, buying supplies in 6 months worth batches. I've realised (don't you just hate the fact this disease makes you so thick at times!) having had a really crappy January that the efficacy of my ampoules had waned. Looking back, I was pretty low last summer, and dreadful the previous January & February. One fresh shot, and I'm a changed woman.

So, hey ho, I now have enough ampoules to inject every day and intend to only get 3 months' supply at a time, max.

Part of the reason I bought the maximum amount I could, was worry over being able to access supplies. It just makes me so angry I can't just walk into a pharmacy and get this and I can't talk to my 🤬🤬🤬 Doctor about it.

I keep remembering times I'd forgotten, about how my lousey memory and tiredness screwed things up in the past. And I'm very angry about a missed chance to give me loading doses that my then GP missed, in 2013. An ENT specialist spotted my B12 was low, gave me a shot and told me to tell my GP I needed 2 weeks more. I went to my GP he looked blankly at me, of course did another blood test, that of course showed I was fine! 10 long years of downward spiral, career decline, marmite and Floradix addiction, not coping with my mother, who, guess what, didn't have dementia, she had a vitamin B12 deficiency treated with pills. And now I still can't get the GP to give me a clear diagnosis, because I tested negative for antibodies. 🤬🤬🤬

Rant over!!

I suppose I have to be positive, you need to have energy to be angry 🤣 😡 😆 😴

[Sleepybunny]

Hi,

I'm sure many UK members and those in other countries will empathise with you.

Tracey Witty of B12info.com has been campaigning for years to get injectable B12 available over the counter from UK pharmacies.

b12info.com/a-decade-of-cam...

You might be interested in this recent thread about someone contacting their MP about getting B12 over the counter in UK.

healthunlocked.com/pasoc/po...

I wish everyone in UK would contact their MPs on this issue.

I'd like to see a group of MPs start an APPG, All Party Parliamentary Group on B12 deficiency.

Link about APPG

parliament.uk/about/mps-and...

[Oneash in reply to Sleepybunny]

Yes I do intend to talk to my MP. But as ever I need energy and sanity to do it. I'm a bit incoherent at times, loosing my train of thought. Looking pinker again today at least.

[Cherylclaire Forum Support]

It was a senior ENT consultant who helped me.

I'd honestly got to the stage where I thought that I was wasting my time, that I'd surely have got better than this by now, that it must be something else (not the diagnosed functional B12 deficiency) and they just hadn't found it yet or else they'd missed it. Totally disheartened.

It was clear during this appointment that he'd read my GP's detailed report to him with interest, and was able to quote from it. He also wanted to see a few photos that I'd brought with me. He looked at my throat too.

He told me that I obviously had B12 deficiency, to continue with the EOD injections - that I was doing the right thing but that it would take me a long time to get better and to be persistent, not to give up.

Some years later, I happened to be referred to him again - and so got a chance to thank him in person. There are still a few people out there who do know how severely this condition impacts on your life - and can recognise the symptoms on sight, without needing a barrage of blood tests. Who use their experience to listen, observe, advise.

These people are lifesavers.

[Hockey_player]

I am so happy to be in Canada! We can buy injectable B12 here from a pharmacy with no prescription. I hope things change in the UK so you can do that too some day. Maybe the Pernicious Anemia Society can advocate for that?

[Oneash in reply to Hockey_player]

They are. I was thinking it might be worth going the other direction and pointing out to Boots the Chemist, they are missing out on vitamin sales and customers in their shop.

[Hockey_player in reply to Oneash]

It is worth a try. But it's probably not a big profit item. The last vial of 10 doses I bought cost less than $5 Canadian so less that 3 GBP.

[Oneash in reply to Hockey_player]

Well that's much cheaper than getting them from Germany.

[wedgewood in reply to Oneash]

Yes , but the Canadian B12 is Cynocobalamin, not Hydroxocobalamin.

[Oneash in reply to wedgewood]

Ah.

[wedgewood in reply to wedgewood]

Also , I’ve just thought the Canadian Cynocobalamin mentioned was sold in a 10 dose vial , not in individual single dose ampoules , which are safer and more expensive to produce than the Canadian 10 dose vials . I think I’d rather have Hydroxy in ampoules .For €10.00 for 10 ( but then we do have delivery charges on top . )

[MorningMist]

I have experienced exactly the same. Previously I ordered 100 Pascoe and they expired before I’d managed to finish them, the irony being that I really need to inject more frequently than the monthly I try to keep to. This I do because my levels were sky high and my gp ( who had refused any treatment) took a grim view of my obvious self injecting. I have vowed to refuse any further b12 tests as I don’t want to confront this subject again.

8 years ago my b12 was low but in range and I tested negative for antibodies. So that was an open and shut case as far as they and the local haematology department were concerned. Refused to take account of private test results showing raised homocysteine - said they had no knowledge of such a test or how to interpret it. 🤯🤯🤯

It makes no sense that few gps will prescribe on the basis of symptoms and that the whole thing is made unnecessarily complicated and stressful. I read that in the 1950’s b12 was often given for fatigue and depression, without extensive testing. If that were the case now I wonder how many people could be saved from further complications later on?

When I was in France last year it such a relief to be able to buy ampoules in a pharmacy, no questions asked. No matter that I couldn’t find hydroxycobalamin, I’ll keep the cyano as emergency supplies. 😄