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. 😕

This advice is for regular low B12 levels, not PA.

https://pernicious-anaemia-society.org

Have template letters you can send to your GP. They will also give you lots of advice.

Yes I sadly didn’t find most GPs helpful before my diagnosis and was really unwell for years. Thought once I was finally diagnosed that would be it, such a relief to feel better. But GP was blabbing last week about how covid had showed them most people were fine without jabs and mentioned pills and multivitamins. Sounded like a bit of a sales pitch although to be fair his enthusiasm died somewhat when he heard I’d actually been diagnosed via my private medical insurance and had an endoscopy etc as well as family history of PA. Maybe I’m panicking for nothing and I might not get recalled for another review. But he did make me a bit cross when he said I couldn’t expect to have B12 jabs for life! To be honest, I’m missing my old GP practice, this lot were in the local papers last month being criticised, I don’t think they’re the A team.

I lived in Wales during the pandemic and taking pills or not having my jabs as usual wasn’t mentioned once, they were great. But from what my GP here in Hampshire indicated, i think it was a different story at this practice.

@LaidBackLettuce
I wonder if it's just your new GP surgery trying to cut back on the jabs?
Could you switch to a different surgery?
Have to check the NICE guidelines for treating PA.

I am due a boood test next week. They now test to see if you are able to absorb it orally. My nurse had to read the notes another nurse had written as she said this was new. Worth looking into.

Parietal cell autoantibodies
Test date
8 July 2024
Healthcare professional's comment

• the resultof this will determine if ashe will ned tohave and continue on b12 every 3 months by injection or can manage with oral B12

@Pearl97 my view is even if something has changed with pernicious anaemia treatment, it seems ridiculous to risk destabilising this condition which has been stable since jabs, whilst juggling my thyroid issues 3 months after a thyroidectomy. I won’t know what symptoms are caused by what, and that’s without the vocal cord injury and treatment I’m going to have to have. He also didn’t mention change in treatment as such, just covid and freeing up nurse appointments. He did agree it wasn’t the right time after our conversation

Good. You know your body. I just thought maybe that was their thinking. Keep pushing for what you known cost cutting often costs more in the long run!

@Pearl97 I think it does. They sent an email regarding lack of appointments due to action they are taking, then forced me in for a review, knowing I’ve just had a thyroidectomy and then reluctantly agreed now’s not the right time to withdraw jabs. I did fight my case as well as I can with my squeaky non existent voice! 😂

No. I was referring to the report linked above. It was about PA.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4993789/?sfns=mo

Bad sleep yes, hot flashes I don't think so. I've never heard of hot flashes as a symptom for b12 - even though there are many! I've been having the injections for 15 years now so watching this thread to see what happens. My own Dr's haven't said anything to me - yet.

During covid they gave it me on prescription - and I got a nurse I know to inject to it.

I definetly need those injections. I'm on the floor if they are done later than once every 3 months. I would - obviously rather take a tablet every day but I'm not quite convinced.

I'd be willing to try it if it was offered just to see what happens. If it doesn't work it doesn't work - I'd know pretty quickly and I'd be trying to find a different gp who offered the injections.

I definetly need those injections. I'm on the floor if they are done later than once every 3 months. I would - obviously rather take a tablet every day but I'm not quite convinced.

I'd be willing to try it if it was offered just to see what happens. If it doesn't work it doesn't work - I'd know pretty quickly and I'd be trying to find a different gp who offered the injections.

This is how I feel. If a daily tablet would genuinely do the trick, then fine - but I’m not prepared to go back to numb feet, tingling legs and poor balance when I know it’s unnecessary. But no issues with my surgery yet

Why can't you expect to have b12 jabs for life? That's exactly the treatment for pa. Honestly makes me so mad they dish out other drugs like they are candy and yet are trying to stop a 3 monthly cheap injection for quite a debilitating and dangerous condition.

I have an under active thyroid, so I will take thyroid tablets for life. But thankfully no one ever questions this, or tries to stop/change the treatment. I wish this thinking applied to B12. But I’m sure it’s all down to the time/cost of nurse appointments. I would be quite happy to have B12 injections with the pharmacist

This is interesting, My Dad was diagnosed with PA 25 years ago and has been having injections ever since. It’s been life changing for him. Six months ago his GP said he ‘doesn’t need them anymore’ as his B12 levels are fine. This is Ireland, so not NHS.

My Dad has argued the case that his levels were ‘fine’ because he was having the injections, but the doctor seems adamant he no longer needs the injections.

It’s all very odd. Has something changed in the guidance on treatment for PA?

If absorption is impared and B12 needs can't be met by diet alone and requires supplementary oral B12, the dose has to be the higher 1mg (1000 microgram) strength to have a hope of being effective. Some people still don't absorb enough and require injections.

Most likely he'll have documented that he had the chat with you, you didn't want to switch to oral and because no changes were made, you'll be offered a switch each year at your annual review. It's unlikely they will actually force the switch but will be trying to reduce the number of appointments across the practice by asking everyone to consider it.

Each time they ask just confirm that you have tried tablets but they didn't work, injections are effective and you don't wish to come off them. If necessary, mention NICE guidelines say the injections remain an option https://www.nice.org.uk/guidance/ng239/chapter/Recommendations#managing-vitamin-b12-deficiency

Ask about being taught to self administer if it's the appointment time rather than the drug cost that is the issue.

I know it can feel like a personal attack, try not to take it that way or let it sour your relationship with the practice. The NHS is desperately trying to manage costs, and GPs are under increasing pressure not to prescribe certain meds or for some self limiting conditions. https://www.england.nhs.uk/medicines-2/items-which-should-not-be-routinely-prescribed/ and https://www.england.nhs.uk/medicines-2/conditions-for-which-over-the-counter-items-should-not-routinely-be-prescribed/

I do agree with them dishing out other drugs like candy sometimes which is why I find this baffling. I’ve been offered antidepressants on at least 3 occasions over the years. Once when I had immediate PTSD over a job incident many moons ago (someone seriously threatened me). Also when I was stressed because a sibling had serious addiction issues we were dealing with, then when they thought I had Fibro (I don’t believe I do, my joint discomfort in my opinion is probably linked to my hypermobility and not that bad and easily self-managed.)

All occasions I absolutely refused and was a little taken aback. I’m definitely not depressed and I’m very fortunate, I have never had a single hint of depression and these drugs have serious side effects and not the answer to any of the issues above. I’ve coped with them all successfully without any meds apart from ibuprofen for the joint discomfort sometimes. I have family members with depression and know these drugs, although vital to their well being, shouldn’t be popped like smarties by those not needing them. This is what makes the B12 thing a little confusing, obviously NHS is focusing on it particularly to cut costs.

Unless you've got a medical reason to be on the injections there is a drive for people to swap to oral medications because there is no reason not to, plus it's more cost effective and convenient for the patient. If you have ever had neurological symptoms you will be allowed to stay on the injections.

OP has pernicious anaemia so of course there is a medical need for her to be on injections!

Then she needs to decline any offer to withdraw her injections.

The way I understand it, and confirmed by the study linked by PP which discusses oral B12 specifically for PA:
The healthy body way of absorbing oral B12 via intrinsic factor is the 'active' absorption, but 1% of that can be absorbed 'passively' through the lining of the stomach. Any impairment of intrinsic factor, such as in PA, means you can only absorb 1% of the B12 you eat/take as a supplement/tablet.
Hence in order to get enough B12 to sustain levels, you need to take about 500x the recommended daily dosage that you would normally get through food or supplements.
This is precisely for people with PA and others who cannot absorb oral B12.

If you tried oral initially (at high doses eg 1000micrograms) when symptomatic, and things didn't improve, then that means oral was not enough to bring levels up. But it might still be enough to maintain levels.

There may still be reasons for staying on IM injections. Permanent, or temporary reasons. But simply 'I have PA and tablets therefore cannot work for me' is not thought to be true anymore.

I say this as someone who is non-medical, but did a deep dive into the topic recently. My mum is on monthly injections, my DS is on daily tablets.