Has anyone successfully challenged the withdrawal of their B12 injections?

[airforsharon]

Posting here for traffic as i know this affects quite a few people, but happy for it to be moved if MNHQ think it should be.

Early last year i was told the 3 monthly B12 jabs i'd been having for a couple of years would be stopping, and everyone receiving a B12 injection would be 'advised' to take high strength supplements instead. Like many others I can't absorb B12 via my stomach - i had been taking a good B vit complex supplement for a couple of years prior to diagnosis as i'd been feeling so unwell but my levels were still very low. As a result of being B12 deficient for a long period i've been left with some minor neurological damage.

My GP recommended i start taking a 1000ug supplement daily in March, which i am (the Solgar sublingual ones). My B12 levels were tested in the July, and were pretty high as i would have expected (last B12 injection was Dec '19) - they've just been tested again and are falling, although still ok. But definitely heading in the wrong direction :/ Folate has fallen too.

I've made a telephone appt to speak to my GP about it next month, and would like to ask to go back on the injections. Just wondering if anyone else has been in the same boat and been able to continue receiving the injections? Tia.

There is a difference I think between B12 injections for low B12 and B12 injections for Pernicious Anaemia. I have PA so can’t absorb any B12 and mine haven’t stopped. If they did I would become very very ill.

@ihearttc my GP surgery won't do the PA test, apparently it's unreliable, so they're not refusing injections based on that. They seem to be refusing anyone under 65, despite previous treatment.

Check out the member area of www.b12d.org/. Everything and more than you need to know.

My gp just told me that 500 is the absolute bare minimum. She reckons levels should ideally be about 1000. She's just given me 6 injections and told me to take the solgar 1000ug supplements as well, concurrently. She's running a blood test on Monday to see what my levels have come up to and will take it from there as to whether I need more injections, and then she's going to do another blood test in a month after only having the supplements.

But that's private. The NHS is really lacking when it comes to stuff like this. If you have a life threatening issue they are fantastic, they've just saved my mil - and my sister for about the 5th time. But they desperately need the funding, mismanagement and wastage sorted out.

That sounds good @3Britnee
I looked into going private but there's nothing locally.
The symptoms are awful and life altering.

@eccecc

I also have Rheumatoid Arthritis which is another auto immune condition like PA so I really struggle if I can’t have the injections.

You can pay £29 an injection at Superdrug. It’s expensive though as B12 is cheap.
healthclinics.superdrug.com/services/vitamin-b12-injection-service/

@ihearttc That's good you're still getting them but there are people in your position or with other conditions and severe symptoms being refused.

@eccecc try Superdrug
onlinedoctor.superdrug.com/b12-test-kit.html

I realise that. I was trying to help. My point was it’s clearly not a National thing so it must be down to your practice (and other practices) or your LA. I completely understand how debillitating it is so I really do sympathise.

I would be looking at changing doctors if mine told me I couldn't have my b12 injections. I've been on it 10 years, I can't absorb it and I need those injections. The consequences are long term damage with your nervous system collapsing painfully.

I'm in the South west and my GP practice has maintained b12 jabs all the way through the pandemic - they were listed as an essential medication/treatment by the WHO back in the early days when there was discussion over what needed to continue.
In fact they are now licensed for 2-3 monthly injections so some people are having them more frequently. Ive been self injecting anyway for a number of years now, you get used to it and I think without that I'd still be living a kind of half-life.

Join the pa society. Loads of help. B12 ampules are less than a £1.00 each. I’ve self injected sc for years once a month. My life is back to normal before diagnosis I was in bed at 3 in the afternoon. Every time I went to the Drs they said I was tired because of my age, even though they know I’m an active runner and practice yoga. It wasn’t until I had a neurological condition that they finally agreed that I had PA, but even every 3 months isn’t enough for a very active 50+ who also works full time.
Take your health into your own hands and start living the life you deserve.
Good luck.

I have mine every three months. They tried to stop them during the first lockdown. I coped for a month. Then phoned and said that if they don’t give me the injection they would have to sign me off work as I couldn’t walk ( mine effects my feet ) so they have it to me.

Not heard anything about them stopping. If they do I’m on real trouble as my feet are damaged from the lack of b12 before it was diagnosed. And I wouldn’t be able to walk

I’ve just been diagnosed with pernicious anaemia (can’t absorb B12 through the stomach) so have to be on the injections. Currently having 3 per week which will eventually reduce down to one every 3 months or sooner if I feel it’s necessary. I can’t imagine a GP making anyone with PA stop injections as that’s the only way they can absorb it - supplements won’t do anything

@ihearttc

There is a difference I think between B12 injections for low B12 and B12 injections for Pernicious Anaemia. I have PA so can’t absorb any B12 and mine haven’t stopped. If they did I would become very very ill.

That's right, though i don't have PA but still can't absorb it. When i started having the injections regularly i was told by GP it was very important to continue having them regularly - i've also been told that by the nurse (i was told off once for being about 3 weeks late due to school hols)

It's sounding very much like pot luck if you're still receiving the jabs. I appreciate it's good that they are available privately/via Superdrug the cost could be prohibitive for some :/

they were listed as an essential medication/treatment by the WHO back in the early days when there was discussion over what needed to continue Unsurprising, given pre 1930s, when the injections became available, B12 deficiency would generally kill you.

I’m in the south of England and I have them every 3 months, have continued to do so throughout lockdown and have my next one booked for next week.
I can absorb via my stomach due to an operation I had so I really do need them, luckily I haven’t had to fight (yet) for them to continue.
Sorry your going through this OP!

I’ve self injected for a couple of years now and it’s been a life saver during lockdowns as my surgery stopped their services too.

I was on 8 weekly injections but topped up in between. So much easier to do it yourself so you aren’t beholden your surgery. I buy my ampules from Germany. I also take co factors (mainly Folate) as it’s useless without that for me.

OP, can you specify which nation you are referring too please? Health is devolved between the UK nations

I'm in England @MrsW2603

@DragonMamma

I’ve self injected for a couple of years now and it’s been a life saver during lockdowns as my surgery stopped their services too.

I was on 8 weekly injections but topped up in between. So much easier to do it yourself so you aren’t beholden your surgery. I buy my ampules from Germany. I also take co factors (mainly Folate) as it’s useless without that for me.

Can I ask what you do with the needles afterwards? I considered this but it seemed like a faff! Would be worth it to feel better though!

I had undiagnosed coeliac disease for almost 30 years so I can't absorb b12 due to the damage to my gut.

You can buy sharps bins online but admittedly I’m lucky in this respect as my mum is T1 diabetic so I just pop them in hers

I had this with my GP surgery, I had tests for PA and was found negative. However this test is ineffective and in any case you can have trouble absorbing B12 without having PA. I challenged my surgery who really didn't want me to have it. I quoted NICE 2019 guidelines which states that the injections should be continued whilst the patient is experiencing symptoms. I also quoted the NHS Constitution “You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences”. They still tried to tell me that I didn't need them. I eventually had to have more blood tests with the consultant rheumatologist who basically told them that I should be having the injections. You need to keep fighting. I have thought about doing my own injections but I'm a bit of a wuss.

Can I ask what you do with the needles afterwards?

It's different in different areas but here my local council waste services provide sharps bins and collect/replace when they are full. Some people pick them up/drop them off at needle exchanges.

[quote airforsharon]**@eccecc* @blackheartsgirl would you mind saying where you are in the country? Also @Ginger1982* where your Mum is? No problem if you'd rather not.[/quote]
We're in Scotland.