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Original poster

Has anyone successfully challenged the withdrawal of their B12 injections?

88 replies

airforsharon · 16/07/2021 11:11

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.

OP posts:
IvorHughJarrs · 16/07/2021 20:26

In our area people were switched from jabs to tablets due to the pandemic and the risks of coming in to the doctors or not enough staff to do them.
Most have now switched back

MaryBoBary · 16/07/2021 22:01

I also had to fight to get the injections so bought them online and inject myself now too. It's very safe when you look into it as it's injected in to muscles not veins, and you can't "overdose".

dontgobaconmyheart · 16/07/2021 22:56

I am off for mine next week and had them as normal during the entire pandemic who no cancellations or delay. I have them every 3 months, I have pernicious anaemia.

I would challenge this OP and do hope you get somewhere. It is beside the point but it can be done privately or even self injected at home via purchase privately online. In an 'emergency' I would use b12 drops that absorb under the tongue over supplements as there is more chance of some absorption.

Hope you are able to get it aoe

Interested in this thread?

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General health
AntonMeyersNo1Fan · 27/07/2021 20:27

UPDATE @airforsharon - I had a F2F GP appointment today about something unrelated and asked about B12. She was lovely and said it was extremely unlikely that my deficiency was dietary given other autoimmune issues I have.

She wouldn’t do a blood test as the oral tablets would throw out a false result. I asked about a friend injecting me and she said no, they’ll restart my injections and she’ll book me in for that next week when we speak again (about other stuff).

She did laugh when I said dh had told me to pretend I was intervening on behalf of one of our dc having muttered after this thread…

CCSS15 · 27/07/2021 21:15

My GP continued throughout covid giving injections but I stopped going myself as didnt want to go in the surgery - think the last one I had was November. I do self inject though and get my B12 from amazon Germany - there's not as much choice as there was pre brexit but it looks like you can just about get some to ship to UK. Its quite cheap and less than £20 for 10 ampoules including shipping - you can get needles and sharps bins online too and control your dosage yourself

AlbusSeverusMalfoy · 27/07/2021 21:18

I just had my b12 injection the other day and there was no mention of it stopping. Even calculated when my next appointment was due.

Dentistlakes · 27/07/2021 21:21

I had this too. I was changed onto tablets last March and haven’t felt great since. I did have my levels checked and apparently they were ok but they wouldn’t give me the actual result so I don’t know what my levels actually are. I’ve recently had another blood test and will be requesting my results. Considering how damaging B12 deficiency can be, I find it disturbing how many people have had a similar experience.

Ghosttile · 27/07/2021 21:21

They’ve done this in my area too. I didn’t know you could buy the injections.

DownWhichOfLate · 27/07/2021 21:23

What were all your B12 levels before injections please?

mumwon · 27/07/2021 21:33

you need to check local health areas advice on treatment & drugs prescription
but it looks like NICE may be your way to fight this

sparemonitor · 27/07/2021 21:36

It's not a national decision, will be your CCG. Health care decisions in England are made at CCG level for this sort of thing. You only need a fraction of that due to be sorted so it's fine even for those with pernicious anaemia.

sparemonitor · 27/07/2021 21:36

Absorbed not sorted!

Tomnooktoldmeto · 27/07/2021 21:43

PASOC are absolutely challenging this and the prescriptive 3 monthly injections when some of us need much more frequently if we have altered copies of the MTHFR gene

Ultimately I took control back 10 years ago, I import 100 ampules at a time from Germany and inject weekly, I’ve never looked back and funnily enough my GP practice has never asked

stilldumdedumming · 27/07/2021 21:47

@Tomnooktoldmeto same with my dp. He imports- though in the pandemic they surgery prescribed him everything he needed to self administer. It's ridiculously cheap as medicines go. In more litigatious countries like the States, you can get it easily apparently. It's a disgrace. Dp has not been diagnosed with PA but was told by his GP that no supplement can help him as he has no IF so can't absorb supplements.

Limitedhelp · 27/07/2021 21:53

Could you look into getting them done privately?

Limitedhelp · 27/07/2021 21:53

I know that a lot of aesthetics and well-being clinics offer them

Happyface120 · 27/07/2021 22:11

Could I jump on to ask some questions please? I have been backwards and forwards to GP for fatigue for the last few months, but told all bloods etc OK, and am I depressed? Have been on antidepressants for years for anxiety around PMS, but want to come off them now. I'm generally pretty happy these days! I phoned the surgery today to make an appointment to speak to GP, and just asked whilst on the phone if I could have a record of my last blood test results. My vitamin B12 is 259 and I have high MCV and MCH levels. Could this be the cause of this bone dragging tiredness I've had for the last year or so? I'm fit and active, but I could sleep all day. I thought I was perimenopausal (only 38 though), but could it be as simple as B12 supplements?

Original poster
airforsharon · 27/07/2021 22:24

Hello again, thank to all of you for your input. I've been drowning under a sea of children this week so have neglected the thread

@AntonMeyersNo1Fan GOOD I'm very pleased your GP was helpful & issue is resolved

@Dentistlakes i'm shocked they refused to give you your blood results, it's your body ffs Put your foot down firmly and insist they tell you next time

@mumwon thank you for those links

@Limitedhelp it does look like that, or injecting myself, could be an option. When my GP said the injections were stopping - not due to Covid - I assumed it was due to cost. I also assumed to was a countrywide decision. Neither of those things seem to be correct. I was really very unwell before i started receiving the injections & still have some nerve damage, i'm baffled that the CCG would remove the - cheap! - treatment that keeps me & many others well & functioning.

@DownWhichOfLate my levels were around the 200 mark

OP posts:
Original poster
airforsharon · 27/07/2021 22:30

Hi @Happyface120 I would consider your B12 level low - the 'ideal' is over 500, although GPs seem to vary on what they consider low enough to need treatment. Symptoms of low B12 are extreme tiredness, dizziness, being clumsy and having balance difficulties, 'brain fog', difficulty with speech and memory, tingling & numbness in hands/feet...the list goes on!
I'm not familiar with MCV/MCH - do high levels indicate anemia?

OP posts:
Athinginitself · 27/07/2021 22:31

I havent got PA but do have other autoimmune issues and my b12 results are always borderline. Found a local beauty aesthetics place and been having monthly injections there, has definitely made a difference but is £40 a month which whilst not outrageous is not insignificant, inject another medication so would be happy to inject myself but struggling to find anywhere I can order from that is both in english but doesn't require a script. Super frustrating.

Tomnooktoldmeto · 27/07/2021 22:52

@airforsharon 500 is the minimum level your B12 should be at, nerve damage starts to occur below this level, sadly the UK is out of step with the entire world on this one which is why we’ve go to such a problem

Also GP’s rarely advise on the fact that your levels of folate need to be optimum of your body cannot utilise the B12

In the Uk we ONLY check circulating B12 levels when we actually need to check the red cell level, many people affected do not methylate adequately and so it just sits in the blood stream but isn’t broken down to cell level where it can be used

There are groups in the UK trying to improve access to treatment, currently some MP’s are looking at trying to get a quick urine dip stick developed that will give red blood cell level reading which should improve care

Original poster
airforsharon · 29/07/2021 23:03

@Tomnooktoldmeto thanks, that's all really useful

When i got my last blood test results the receptionist gave me my folate level too, which had also dropped a bit. Tbh i hadn't paid too much attention to it, so i'm going to find the note i made and check it

OP posts:
Tomnooktoldmeto · 29/07/2021 23:17

@airforsharon happy to help, if you’re going to supplement your folate or B group vitamins make sure to use methylated forms eg methyl folate, methylcobalamin then if you have a problem with methylation which is really common you will be taking in a bio available form that you can actually access, oh and don’t forget vitamin C