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.

fantastic info, thank you

My B12 level was 60. I suffered neurological issues and my memory is still awful. I've had to fight for injections even though I was dx with pernicious anaemia. My level has gone up to around 260, which although my GP had previously told me was still low, he said they'd changed the parameters and that was now an acceptable level and we should look to reducing or stopping them.

I get them every 12 weeks even though I really struggle from about week 7, they simply refuse to do them any closer together.

It's also taken years to get them to accept my chronically low iron levels are bc I can't absorb it in tablet form, and I've recently been given infusions. Still waiting to see if it's helped.

I'm also deficient in ferritin, vit D, calcium and foliate.

They're not really interested.

I'm UK, BTW so I don't know if that makes any difference as my numbers seem low compared to others here (may be a different unit of measurement or something?).

I’m on B12 every three months due to malabsorption from stomach and bowel surgery. Nobody has tried to stop them. On the contrary I was prescribed a years worth and I self administer them.

@Inthesameboat2 if you have neurological impairment then the protocol is every 8 weeks according to mimms/ bnf

In your case you are showing a profile of malabsorption, has this been investigated? Common reasons are coeliac disease, inflammatory bowel conditions use of proton pump inhibitors or certain drugs for type 2 diabetes

If your folate levels are low and your vitamin C intake inadequate you cannot easily utilise your injected b12 as they are co-factors required to breakdown and methylate Your hydroxycobalamin injection to the more bio available form of methylcobalamin

If you’ve not already looked at PASOC please do, they are a charity who are working in your interests to change current regulations here in the Uk

Pernicious anaemia runs in the family and I had stomach and bowel surgery 10 years ago in which they removed a large portion of my stomach and small intestine so they know I'm unable to absorb things properly, they just don't really care, I think.

Thanks for the info though. I'll look into it, I just don't have the energy to keep fighting them and my memory is so poor that I constantly forget to chase things up.

Agree with PP if you cannot absorb (as GP thinks I can't due to genetic switch off of intrinsic element which allows B12 absorption/then body's access to iron) they are putting you in a dangerous position as you can develop pernicious anaemia - lots of women dies from this in Victorian times.

I have them every 8 weeks as blood tests showed my body uses it up quicker than normal. I go downhill quickly if B12 levels fall. I have CFS so it is a crucial ingredient.

They have diagnosed it as pernicious anaemia over a year ago, but they've said my level of 260ish is fine

@Inthesameboat2 That's shocking they are not interested.

Very poor - low levels or deficiencies can make longer term health outcomes poorer. Its so irritating that women get short changed like this - and so short sighted in terms of things like chronic health conditions.

Time for a new GP?

Check out Dr Myhill's website. She does private practice but lots of info and online shop for micro nutrients. I take Co enzyme which I think also have a significant impact. It's all about supporting our mitochondria to keep firing up and supplying energy.

@Inthesameboat2 i'm really sorry to hear all that. @KisstheTeapot14 is bang on, women ARE short changed when it comes to health care, and the more i've read up on what's going on with the removal of B12 injections for many the more baffled i am. Thousands of us are being put at risk of steady decline into chronic ill health & disability, with all that goes with it, for want of a cheap & freely available injection every few weeks.

I've a phone consultation with my GP this Friday morning to ask if mine can be reinstated. Thanks to everyone who's contributed, all the info is very useful. I'm just so sorry others are suffering because of this.

@airforsharon how did you get on? I’ve just had my injection and only reason next one isn’t booked in is because 1st Nov isn’t visible yet! I really hope this makes a difference!

I had my practice try this last year because some bloody silly report had come out and been taken up by some medics as meaning we could get by using tablets. I cannot absorb b12 from my diet and really need these injections-im up to 8 weekly now. Luckily I follow the Pernicious Anaemia/B12 group on facebook which gave me the heads up and so I was ready for it when the phone call came. Kicked up immense fuss and they backed straight down with the result that I have continued to get my injections all though the pandemic

@Dramalady52 i'm glad you were prepared and able to fight your corner! very pleased for you

@AntonMeyersNo1Fan not brilliantly unfortunately :/ I like my GP hugely and always found her easy to talk to but today was a bit 'brick wall'. The stopping of b12 injections is due to new NICE guidelines - it's up to individual GP practices to adopt them or not. Mine has, along with most others in my county. She said it's nothing to do with cost or time, but then cited the need for a qualified nurse to give the injections....she said several times "you're just thinking about you" ie there are many others who need injections too & all those 'just takes 5 minutes' soon add up. Fair dos, but she then said she was happy for me to have my levels checked every 3 months - which would need a longer appt with the nurse, bloods sending off etc. Bit confused by that - but i guess those who are managing on oral supplements are being 'whittled out', freeing up some GP staff time.

I don't esp fancy having bloods done every 3 months, but hey ho. She also strongly advised against self injection.

I got the feeling i'm not the first she's had this conversation with, she was unusually terse. I said it wasn't my aim to argue the toss to get my own way, i wanted to understand why the injections had stopped. "New guidance" was really the sum of the explanation :/