B12 jabs - doctors trying to withdraw

[LaidBackLettuce]

Hi, just wondering if others are having forced reviews of their longterm B12 jabs. Brief history with me is, decades long symptoms, worst of which were severe stomach/IBS issues amongst others. 12 years ago I had extensive investigations including an Endoscopy & tests on my private medical health insurance and was diagnosed with a B12 absorption issue and pernicious anaemia is very common in my family. As soon as I started the jabs, all symptoms improved hugely and i’ve been so much better. All through covid no problem with getting normal jabs at doctors as usual.

So i’ve fairly recently moved and new doctors now want to review my jabs, they’re keen for people to take B12 oral supplements or vitamins instead. I related the above to my doctor but private medical records, especially from ages ago, rarely tie up to NHS records. I’ve found this with other procedures I’ve had done. Seeing as I’ve just had a thyroidectomy and now have a fairly severe vocal cord injury due to surgery, I said I didn’t want to start having to go through all new tests to keep my B12 jab. He agreed but has put a note to review in the new year. Just wondering if others have had the same? And if so can you get them privately? He mentioned it cuts down nurse appointments so guessing it’s due to NHS cutbacks. 😕

What a pain. I’ve only got a sec as going out but I started doing my own as they wouldn’t do them often enough and it’s been so easy I stopped ever going to get them done at the nurse. Hopefully you’ll get other replies shortly but if you can any advice on going DIY I’m happy to help. Loads of GPS stopped doing them in lockdown so I know a lot of people who started DIY at home and carried on.

Can you buy the B12 injections or do they need to be prescribed?

Since the reason for the injections is that I can't absorb B12 taken orally, that would be stupid.

This is what I’m not sure about. I was in such a state before having them I’m really keen not to upset everything and obviously there can be serious medical consequences. Just don’t need that hassle as I’ve just been on an 18 month rollercoaster with my thyroid that finally seems semi-sorted (except for the vocal cord injury! 🙄). This time a 10cm retrosternal thyroid growth completely blocking my neck & airways and totally dismissed by my GP as a saliva infection and just handed antibiotics! Luckily private medical through husbands job gave me all the appropriate scans, found & removed it and checked for malignancy. Not feeling the love for my new GP practice atm!

Can't you get copies of the original tests to give to new GP? That's what I did in similar circumstances.

Failing that Superdrug do it for £29 but you'll need to take evidence with you.

Possibly, but I’m already juggling emails/admin with ongoing vocal cord treatment/insurance which is going to need injecting and is quite painful and stressful, it’s incredibly hard for me to even talk due to the injury, and my thyroid ‘s been all over the place until recently! To be fair, that’s why he’s decided to keep me on them in the short term. I told them it was all done at the Chichester Nuffield hospital 12 years ago, but I can’t remember the consultants name, he was a fairly old fellow so maybe retired now as I can’t see him on their website. The doctor was going on about during covid they realised many didn’t need injecting as it stopped, but at the time I was living in Wales and my GP had no problem doing it, even during the lockdowns. First I’ve heard that some were moved to oral B12 during the pandemic

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4993789/?sfns=mo This is interesting

I’d be open to this as it’s a faff having to go and get the injections.

But as I don’t have a restricted diet, why am I not absorbing the B12 that way? Is it just the sheer amount of B12 they are proposing that makes the difference?

You can pay for them privately if you can't get this sorted.
I have one very month, you dont need evidence as you pee any excess out so no danger in having too much. Cost is £30 in East Midlands.

I had three monthly injections for many years due to absorption issues (same, runs in family) up until Covid. They were withdrawn then and our surgery issued a letter to say they were now reviewing and would not be providing in the future. Advised oral supplements, which obviously misses the point. I buy patches from Amazon now. Not as good but I get by on them. I'd pay for injections if I felt the worst of symptoms return (numb feet, exhaustion and absolute brain fog)

The point is, though, that we shouldn't have to pay to do it privately, or even do it ourselves.

I thought I was dying before they worked out what was wrong. Death would have been a blessed relief at some points.

A friend had theirs removed too, apparently results were ok… low side of ‘normal’ and despite her saying that’s with the regular jabs i will be deficient without them as she doesn’t absorb oral doses either.

They wouldn’t listen and would review a few months down the line and now she feel likes shit again.

I work in the NHS and it frustrates me because so many doctors want to wait and treat the problem rather than early symptoms/ preventative care

I agree I am getting rather frustrated. It’s worked so well after my diagnosis and fixed very debilitating symptoms so why change it? In the long run, it means I’ll probably be back and forwards to the doctors, clogging up their appointments etc, when I start feeling ill again. Plus the jabs themselves are meant to be cheap. I feel I’ve already saved the NHS many thousands by having so much done on my husband’s work private medical insurance over the years (hysterectomy, breast lumps removed, B12 investigations, thyroidectomy/scans, vocal cord treatment) and I feel a bit peeved that the one thing they do provide is now being withdrawn. It’s like they’ve given up completely! Plus I’m getting really annoyed at having to repeatedly tell them I can’t do telephone appointments because I can’t speak!! Sorry for the rant, just feeling a bit frazzled by continuous medical stuff which has now been added to by this nonsense.

You can get the B12 injections privately. Also a drip which is supposed to be amazing.

It will be down to your GP’s budget. They don’t want to pay for the injections when tablets will be cheaper.

Do you need a prescription for this? Is it with a private GP or clinic? I’ll definitely try to do this if possible if they withdraw my jabs. So wrong that people are being forced into paying for everything like this now, not everybody has that option.

I would be happy to have it orally if it actually worked. No sign of them being withdrawn for me, I get them every six weeks at my GP’s surgery.

@LaidBackLettuce
Many clinics offer it, just google B12 injection's near me.
You don't need a prescription, as I said, you can't have too much as you pee excess out so it's not dangerous.
Obviously you should be able to get them though the NHS but maybe an option to save your stress short term

Yes, he basically said as much when he mentioned nurse appointments needed. It’s really quite appalling this is making medical decisions.

Thanks, I’ll have a search. This will definitely be my back up plan.

What is the point in giving someone with pernicious anemia oral b12? That's ridiculous you may aswell chuck the tablets down the toilet. It pisses me off that something like this pretty cheap and simple is being reduced for some - it makes such a difference to someones life, I honestly thought I had ms before I was diagnosed and put on the injections.

But tablets won't work for someone who cant digest and absorb b12 orally, so it's just a waste of money giving them tablets and therefore extra cost!

I wonder what the cost to the national purse will be when those of us who can't absorb oral B12 all have to have time off work because we're unable to function.

Have you asked if you can have the prescription and do your own jabs? That would save the cost of nurse appointments.
Plenty of people do their own injections of various meds. My local council collects and delivers sharps boxes. It is ridiculous that a GP appears to have forgotten that injections are essential for people who can't absorb oral meds.

Exactly! I'd be at the doctors every month with tingling hands and feet brain fog and awful headaches

If you could get an appointment!