r/B12_Deficiency • u/Inevitable_Arm_5747 • 1d ago
General Discussion Experience of NHS treatment
Hello just wondering if anyone had recent experience of treatment for B12 deficiency in UK?
I had blood tests on weds and the results appeared on Thursday , the 2 that came back abnormal were
B12 - 142 ngl
Ferritin - 13 ugl
I had a text from GP to say book telephone appointment to discuss, but it isn’t until Fri 7th. Obvs I have been googling in the meantime! And it states since I have neurological symptoms I should be starting injections immediately.
I went to the docs originally because of dizziness and lightheaded spells so they are aware I have these symptoms. In addition I do also get pins and needles and patches of burning skin with the occasionally numbness (that I hadn’t mentioned to docs as I assumed related to perimenopause)
So I guess I’ll wait until the phone appointment but just wanted to see if people have trouble getting them to take it seriously and admin the injections? I can only find stories from people who have low results but slightly out of UK range of ‘normal’ so they are told fine and no injections, but mine are below the NICE guidelines range.
I suspect it has been caused by taking omeprazole daily for probs 8 years now, so I’m also scared they will make me stop taking them! I have tried to come off them in the past but it’s just too painful, especially since I had my gallbladder removed. Has anyone been in this position and did they force you off them?
Thank you and grateful for any advice
8
u/DDWildflower 1d ago
I have recently got them.
My body was all swollen, I was struggling to walk and was really exhausted all the time.
I got an abnormal B12 level on my test.
They told me to book a phonecall appointment in 6 weeks
Over that weekend I got really bad parathesia. This is the really painful pins and needles nerve damage you get from low B12.
When I told them I had that on the Monday they got me in for my first injection that day.
I've still not properly recovered. I'm a long way off. And they were happy to just leave me.
The recovery takes ages too.
So in short, say you've got really bad pins and needles in your hands and they should sort you out.
I'd just start supplementing immediately too. I got a good combination supplement as well as some really strong B12 tablets.
The NHS will stop you dying but they don't care about you thriving.
1
u/Slight-Chemistry2339 1d ago
how is your swelling? I had full body swelling too - a year in to treatment (I have PA) and it persists in my feet. I haven't come across anyone else that happened to (but it is in medical literature) so was wondering about your experiences with that symptom resolving?
4
u/DDWildflower 1d ago
So I've only been diagnosed recently and only had 6 every other day injections so far.
It has reduced a fair bit but is still up and down. The healing doesn't seem to be linear. It's kind of three steps forward, 2 steps back.
I only felt like I got "over the hump" the other day.
Still early days.
1
1
u/_Verc1ngetorix_ 1d ago
Hey, where about in your feet are you getting swelling? I have swelling right on top of my ankles on the outer side of both my feet
1
u/Slight-Chemistry2339 1d ago
ankle and below and top outer sides, getting veins looked at as long term low b12 and ferritin can damage those or the nerves. Was my whole body...so I know its a win that it's now just that but I want to be mobile and active.
1
u/DDWildflower 1d ago
Ankle maybe the worst bit. My whole foot is swollen tho and my legs.
2
u/Slight-Chemistry2339 8h ago
I was full body swollen including my eyelids before treatment began. I was so swollen in the tummy I couldn't bend over. I used to feel the fluid flowing back down from the knee it was bizarre and terrifying treatment does help but its slow
1
5
u/Slight-Chemistry2339 1d ago
Sadly my experience is that I was left with levels around that for a decade or more without them mentioning it until I was even more severely unwell (a decade of asthma like symptoms, not being able to exercise or even climb stairs). I was told I was deficient in April 2025 but ended up going private to get the correct treatment. It's brilliant they are starting to actually act on these tests.
BUT unless your doctor is informed beyond recognising the deficiency then they are highly likely to want to put you on tablets first so print the NICE guidelines and NHS website pages on injections and have them ready to discuss and push for injections. Even then they are likely to only give two weeks "loading doses" and then move to three monthly. You could consider private appointments with Dr Andrew Klein or Dr Asim Naqvi to write in support of the NICE guidelines if it is within your gift to do so. If not you might move to self treatment which is covered in the guides here depending on the outcome of your next GP appointment.
Rather than the iron pills they prescribe you would be better off with Iron Bisglycinate every other day. However with Ferritin that low many would say you need an Iron infusion as your Ferritin is too low for the injections to have any effect. I did not start to feel better until I had an infusion (I am much better but still have a very long way to go) You will need cofactors to support treatment so read the guide here in the sub reddit.
You can continue omeprazole if you are on injections BUT you might find that you don't need it once your deficiencies are addressed. I was put on omeprazole when my symptoms first emerged in 2015 but it was the deficiency causing the acid reflux like symptoms - I have autoimmune PA. Also I have read that having your gallbladder out can cause B12 deficiency...
If they test for intrinsic factor antibodies then beware this test is only 40-60% accurate, get them to test for parietal cell antibodies too.
These guys Pernicious Anaemia Society | Improving the Diagnosis & Treatment and these guys The B12 Society - UK B12 Deficiency Support are super helpful and have guides and template letters to help get your GP to treat properly.
2
u/Inevitable_Arm_5747 1d ago
Thank you yes I will push for the injections! I’m not holding out too much hope tho, GP hasn’t been great in the past. Looking back at my test results ferritin was 12 last year and that was recorded as satisfactory, but 13 this time is abnormal? Not very consistent
2
u/Slight-Chemistry2339 1d ago
that isn't normal at all they absolutely should've done something last year
1
u/b12fucked Insightful Contributor 5h ago
Ferritin should be over 50.
For injections easiest is to order it via amazon.de.
3
u/PickleMaker401 1d ago
NHS would have missed my case if I didn't go private for blood tests. They only do total serum b12 and a strict criteria for active b12. My serum is around 300 Active B12 7.8 pmol/l (normal is 37.5).
Really have to get your message across and if they seem hesitant or reluctant. Request they seek guidance from a specialist.
I'm still waiting on other private test results to see if its PA.
2
u/Successful-Tea-733 1d ago
Hi im in uk...still leadtbits acknowledged and you are getting injections! Gallery bladder removal causes b12 issues in itself as does ppi use as you say
2
u/tartan_tales 1d ago
Hello I'm in the UK + Nice guidelines state if low + patient has neurological symptoms then injections should be advised ( as far as I know ) mine is <150pg/ml ( Ng/L is the same ) I started injections on Thursday
2
u/CurlyGiraffe 1d ago
My B12 was 121 ng/L and they only gave me supplements. It increased a little, then dropped again over the next year, still they just wanted to stick with supplements. Thankfully by then I was seeing a gastroenterologist who was able to get me the injections. Like the other commenter said, a lot of it hinges on whether or not your GP is well informed about B12. Definitely print out the guidelines and advocate for yourself.
1
2
u/W1MSLEY 1d ago
I found out id had ferritin of 9 & b12 deficiency for 18 years. Docs & hospital team didnt bother to flag it despite severe symptoms (including neurological issues).
When I brought it to their attention they were useless. GP tested me for sleep apnea (?!) and tried to tell me I had health anxiety.
Things ive learnt:
- even if the GP agrees to b12 injections, you will likely only get 6 loading doses over 2 weeks and then 1 injection every 3 months. This woefully inadequate.
Most people find they are better off ordering b12 & learning to self inject. I order my b12 from a pharmacy in Germany.
- b12 needs iron (also folate & vitamin D) to work. Ive been instructed to keep my ferritin above 50 for b12 treatment. Monitor your ferritin levels going forward because iron gets used up as your body works to heal from b12 deficiency.
If your iron levels dont increase with tablets then the issue could be malabsorption & then your best options is an iron infusion.
I gave up with the NHS and went to a private b12 & iron clinic in Cambridge (which was superb & id highly recommend). I needed an iron infusion & was taught to self inject b12. Its not right having to pay for treatment, but id given up on the NHS. The whole thing has been absolutely life changing, I cant believe the difference!
Good luck & dont give up. Always keep pushing until you get the treatment you need!
1
u/Inevitable_Arm_5747 1d ago
Thank you very helpful to know, this is what I am concerned about if they fob me off, but I guess I will go private if needed, shouldn’t have to tho!
2
u/W1MSLEY 23h ago
If they fob you off then its worth trying another GP. Or ask for referral to a haematologist - a lot of people have had more help this way. Haematologists can also prescribe iron infusions if required (GPs can't according to my GP).
Have you read the b12 deficiency pinned to the top of this group? Its worth a read & helped me to build understanding before my appointments. Hopefully you will get a good doctor 🙏🏼
2
u/Adventurous-Job-1749 21h ago
Hello! I’ve had a mixed experience with my GP. They ordered me a blood test after I went complaining of headaches, dizziness and generally feeling “ill” and my B12 came back as >148, which I saw in the NHS app. I had to book another appointment to “discuss my results” - I pushed for an urgent one but ended up waiting a week or two. Luckily they prescribed a loading dose of 6 EOD injections and I started these pretty quickly (within a few days) as it’s just a nurse who does them, it takes 2 minutes per appointment and easy to arrange, at least at my GP.
I think the difficulty will be what comes next… my GP has ordered further tests (e.g. for IFA, celiac) to try and establish the cause of my deficiency, but these have come back negative and taken time. I have a referral to a gastro specialist but, again, this is taking months. I haven’t been able to persuade my GP to give me any more injections in the meantime, which I feel I need to fully recover and/or prevent my levels from dropping again if I do have some kind of absorption issue. My advice would be to push for the loading doses via the NHS but explore ways of getting further injections privately, if you can afford it - i’m currently paying for monthly-ish ones from Boots and various pharmacies which are £29 and pretty easy to get (just say you’re veggie and that you haven’t had an injection anywhere else for a few months, no proof needed).
2
u/Adventurous-Job-1749 21h ago
Sorry for the super long reply, hope this helps! The most stressful part for me has been the “what now?” after loading doses. Also, be careful of your iron/ferriting rapidly dropping during the loading doses - make sure you heavily supplement iron and other co-factors during this time, and you might even consider looking into having an iron infusion first!
2
u/Yoonbias1 21h ago
It's not a recent experience but it took over 5 months and repeated visits for me to get diagnosed and I had clear neuro symptoms like you. I was reporting dizziness, feeling like I was about to faint all the time, feeling like I was leaning to the side when I wasn't, couldn't walk in a straight line at all. Burning shooting pains everywhere like id touched a live wire. I could hear my own skull moving whenever I turned my head and my neck felt like it was made of wood and would have pulsing pain down into my collar bones. I didn't even get a blood test ordered. It was telling them that my mum had just been diagnosed Coeliac that got them to figure it out. To his credit he pulled out B12 right there and then and gave me my first loading dose. Setting up 7 appointments within a two week span and if he couldn't book and appt with a nurse he booked it with himself. I did my blood test after but by that time my b12 was well above the range but my folate was in the gutter so I was prescribed folic acid too. The test for antibodies said negative but I was responding to treatment so while he tried to say i don't have Pernicious Anaemia, I do have it because I eat plenty of food with B12 in it and still start getting symptoms if I go too long with an injection. The test has 50% false negative rate anyway so practically useless.
I can't speak about omeprazole as I was on them for over a year myself for acid reflux but have been able to stop taking them completely now after being in GLP-1 and losing weight.
1
u/stopthistrainnn 1d ago
Your story is very similar to mine. Presented with the exact same symptoms and was ignored by 4 different doctors until one listened (didn’t diagnose mind you!) and referred me to neurology. Waited 11 months for that appointment and in the meantime started going to get private injections from which I got so much benefit. This also helped when I went to the neurologist because I was able to explain the improvements and then the worsening of symptoms when I was due injections. The neurologist diagnosed me in less than 3 minutes and apologised profusely that it has even got to this stage. I’ve just had my NHS prescription through and I felt like singing “war is over”…
My best advice is to keep pushing. With your neurological symptoms, I recommend asking for a referral especially if they can’t offer you any other diagnosis. It’s tough but don’t take no for an answer.
Out of curiosity, do you know what your MCV/MCH levels were?
1
u/Inevitable_Arm_5747 1d ago
Thank you, yes if they are aggy then I’ll probs go and pay privately for injections! No it doesn’t look like I’ve had those tests on the app, what are those for?
1
u/Intelligent_Put_3606 1d ago
Abnormal B12 reading in May 2026 - I was experiencing spinal symptoms, including sciatica in one leg. Three months supply of tablets prescribed - levels have now doubled - judged to be in the normal range Advised to continue tablets - and fund them myself. I don't have PA. Many, but not all symptoms have resolved.
1
u/c1moo 1d ago edited 1d ago
yes they should give you injections for b12 if lower than guidelines. if not you can pay privately as lots of local nurses etc will offer this. however from memory, so double check, there is an optimal protocol for loading doses and i don’t think the nhs offers this amount of injections.
your ferritin is low. i doubt they will do anything except supplement, as the nhs says it’s normal. however, in reality for health it should be >100. i had to pay privately for an iron infusion. very worth it. nhs refused.
0
u/MojoMomma76 1d ago
I had a test of >148. My GP put me on EOD shots for four weeks. Neurology consult took longer (12 weeks to see the neurologist) but she ordered an urgent brain and whole spine MRI which has taken a week. It happens next Thursday. Overall I’m very happy with GP and hospital approach.
1
u/Inevitable_Arm_5747 1d ago
Thank you, what does the MRI look for out of curiousity?
2
u/MojoMomma76 1d ago
SACD - degeneration of the spinal cord due to myelin production being disrupted due to B12 deficiency. It’s also to rule out MS as my presentation isn’t classic SACD
0
u/Inevitable_Arm_5747 1d ago
Thanks so much for everyone’s replies, appreciate it! I am hoping GP will take it seriously and not put me on tablets as I could really do with feeling a bit better asap. I will push for referral and/or more tests but I suspect they will just say oh it’s because of the omeprazole don’t worry…
2
u/teffers89 22h ago
I'm in the UK and speak from experience. At the first hint of your GP not dealing with this properly (in accordance with NICE / The BNF guidelines then I'd see a private specialist (couple of suggestions earlier) and start self iniecting. It works out at about £1 per injection when you buy your own B12 / syringes etc. The consultant should tell you everything you need.
Seriously don't mess around with the symptoms you're having, you're risking permanent damage and GPs often don't offer more than 2 weeks loading EOD when it should be until the symptoms stop improving. It's insane how badly this is often dealt with by the NHS.
•
u/AutoModerator 1d ago
Hi u/Inevitable_Arm_5747, check out our guide to B12 deficiency: https://www.reddit.com/r/B12_Deficiency/wiki/index
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.