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. 😕

I’ll definitely ask for this when I get called in to review it again in the new year. I’ll let him know after being diagnosed by a specialist consultant after thorough investigations and severe illness, I have no intention of making myself sick again to save the NHS a few pennies. Terrible though as many people don’t have that option. He was an idiot anyway, when I went in to see him I explained I was struggling to speak due to my vocal cord injury from surgery and he said ‘just ask me to repeat or speak more slowly if you’re struggling to hear me’. I had to then point out there was absolutely nothing wrong with my hearing and he then looked embarrassed! 😂

Yes. I pay about £5,000 per year now for the only treatment that has helped in over 30 years. It’s given me my life back so I can’t do without it.

After my surgery received the private consultants letter, I had an email from the practice manager saying it wouldn’t be prescribed BEFORE I’d even spoken to my gp about it. Just in case there’s any doubt about whether it’s the beauracrats or the clinicians making medical decision!!!

That's disgusting @StormingNorman

It is, but it is absolutely typical in the NHS. I had a trial of treatment some years ago, with excellent results. When I asked if I could have it again the answer was no. I would have to struggle on with the cheaper, ineffective treatment until I became much, much worse. Quality of life is not a priority.

If oral work then it makes sense for gps to switch you. I'm on b12 tablets, really high dose and seems to be effective. I was only taking multi vitamin dose before which wasn't enough for me I was told

It's a big if, though. I'm on injections because oral doesn't work.

I believe liquid under the tongue is, as effective as injections.

If you have pernicious anaemia then you will be unable to absorb the oral supplements - they will simply be pointless. Have you actually directly discussed this with your GP? Surely this should be common knowledge to them!

DD also has PA, we’ve resorted to just getting her injections done privately every 3 months as I couldn’t be bothered fighting for an appointment with the GP nurse anymore.. The NHS GP still prescribes the injections, we just take the vials to a practice nurse at our local private hospital to have them injected (for £40 each time!)

Do you have pernicious anaemia?

But if you’ve been diagnosed with pernicious anaemia or can’t absorb B12 via your stomach it doesn’t make any difference what strength you take, that’s the whole issue. It needs to be an injection into the muscle as my consultant stated 12 years ago. If the pills worked I wouldn’t mind, but they don’t in mine and many other people’s cases. Yet there seems to be a widespread push to withdraw the jabs regardless due to NHS costs.

I'm not sure whether this might help if tablets don't work. Worth a try?

betteryou.com/products/boost-b12-oral-spray

B12 can be absorbed passively via the intestines not just actively so with a high enough oral dose you will absorb enough. Im sure that everyone here will disagree but just want to point it out as I drove myself half crazy desperately trying to get injections and panicking about the tablets, but they worked.

Quality of life is 100% not a consideration at all.

Money is a consideration though and I am earning a quarter now of what I was earning 10 years ago. Because I had to give up my career for something that would accommodate my condition.

So ironically, I would repay the ‘investment’ in my medication multiple times over in income tax.

https://www.bmj.com/content/365/bmj.l1865/rr-1 if you'd like to read about it.

My DP has no problem getting a B12 injection. But his tests were done on the NHS. I think the query has come up because the tests were done privately.

Yes we discussed it and I’ve been diagnosed but via private medical insurance 12 years ago. However private medical notes are not always on NHS records especially from that long ago plus we’ve moved several times including to Wales once, and again NHS Wales and NHS England operate totally separately and don’t seem to talk to each other. That’s another story in itself! So he can’t see the report of my diagnosis and is talking about trying the oral pills or going through the whole diagnostic process again. It all seems very odd as medically, it makes no sense.

I’ve also had a similar issue regarding private medical notes before, as after a hysterectomy 14 years ago on my health insurance, the NHS keeps asking me to have a smear test! I’ve repeatedly told them it’s not there anymore! 🙄

I think going forward, if they try to stop it on the next review, I’ll ask for the prescription and go private as this seems an option according to comments on this thread. I really can’t be going through the whole diagnostic process again especially with NHS waiting lists and having just spent 18 months bouncing around doctors with my thyroidectomy. Just want to recover and get on with life. I wouldn’t be so worried about it except the jabs have made such a difference to my health.

Question - would a b12 injection help with hot flushes and bad sleep

If oral supplements actually worked, none of us would be having injections - the whole thing infuriates me. I tried oral supplements when my symptoms and pins/needles were quite bad, tablets didn’t work but injections did the trick. Fingers crossed no problems at my doctors surgery so far …..

@LaidBackLettuce honestly, you don't need a prescription, I've been to four different clinics and have never been asked. Just saying so you don't waste time on it as it's really not required.

I’m still getting mine 8 weekly but look at the B12 support groups on FB, there’s guidance on there x

Do you have pernicious anaemia OP. Apologies, in your OP I think it says it runs in the family but I wasn’t sure if you’ve got a diagnosis?

A lot of Botox/aesthetic clinics offer B12 injections, normally around £30

My private consultant at the time said it was. Searched to see if I had any paperwork from then but sadly not. We’ve moved 3 times and I probably never thought I’d need it. Also it runs in my family. Granny & sister had/have it too. Sister ok at the moment getting jabs, Granny sadly no longer with us.

Reading that report it seems it was recommended to have injections to get the very low levels up but then the oral route was to maintain that level.

Can't see what the tablet dose strength and how often is being recommended though.

((I'm new to this but have all the symptoms of very low B12 but hoping it's not PA, GP is useless)).

The diagnostic process for PA isn’t complicated or lengthy, nor is there a waiting list - it’s just a blood test to check for anti-parietal antibodies which takes around 2 weeks for the lab to complete. It could easily be done by your NHS GP