I have been receiving B12 injections since 2018. I’m still unwell, but thanks to PAS and this forum, I’m aware this is probably due to the fact that my injections are only every 8 weeks, and I need them a lot more regularly. I have bought some ampules from Germany and have decided to self inject … but there is a new GP at my surgery, and I just wanted to give him a try first, with a view to requesting a lesson in how to self inject - I don’t know anyone medically trained that can show me.
My appointment with him was unlike anything I have experienced in the NHS before. I was with him for half an hour, he listened to everything I said, did a through examination, and said he wanted to run some more blood tests…
“We’ll check your B12 as well because that hasn’t been looked at since you started your treatment in 2018”
… my heart just sank… my understanding is that there is zero point in checking B12 levels for those who are already receiving treatment? My concern is that, even though he seemed wonderful, he might now say he is going to stop treatment of B12 altogether?!
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2) Another possibility is that the GP surgery is under pressure from management and/or CCG /Health Board to cut costs and review those on B12 injections.
B12 ampoules for injections are relatively cheap (below £2 each) but nurses' time to give injections is expensive.
There are moves across UK to put more people onto high dose oral B12 as an alternative to B12 injections. This is often promoted as easier for patients but cynical me suspects it's a cost cutting measure. Some on forum do manage on high dose oral B12 but many report it is ineffective.
3) I suggest that you track down the local guidelines on management of B12 deficiency for your CCG/Health Board. It's possible that the local guidance has changed recently.
Search posts on this forum with term "local guidelines" as some have already been posted.
Try an internet search with "name of CCG/Health board B12 deficiency guidelines".
Submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a link to or copy of local B12 deficiency guidelines.
Some forum members with high B12 levels have had their B12 injections stopped unexpectedly and that includes people with a confirmed diagnosis of PA.
PA requires treatment for life and there are other causes of b12 deficiency besides PA that require life long treatment.
If you have a PA diagnosis or suspect you have PA then worth joining PAS and talking to them before you have the blood tests. They can offer support and pass on useful info.
Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg causes and symptoms of B12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
Thanks so much for all this really helpful information Sleepybunny! I will have a read through all of the links to get myself prepared for next doc appointment on 24th Nov.
I went to have my (8 weekly) B12 injection today - the nurse told me that my blood results were back and that my “B12 levels are through the roof at 1200” but that if I’m still experiencing symptoms to ask the doctor to move me to 6 weekly injections. Will see what doc says on 24th!
“B12 levels are through the roof at 1200” but that if I’m still experiencing symptoms to ask the doctor to move me to 6 weekly injections"
Wow...what an enlightened nurse to suggest asking for more frequent injections.Hopefully the nurse will be a good influence on the GP.
Some forum members have had unhelpful comments from their practice nurses.
There have been UK people on here whose serum B12 level is above 2000 ng/L.
Some people seem to need a really high B12 level in the blood to keep deficiency symptoms at bay.
There are also UK forum members who inject themselves because NHS levels of treatment are not enough for them or in some cases they cannot get any treatment.
There have been people who said they needed daily injections.
Personally I feel that treating yourself is a last resort but I had to when NHS refused to treat me.
I’m really sorry to hear that, that’s awful! It does seem to be a postcode lottery, unfortunately 😔
I live in Cardiff, UK, and my surgery are actually pretty good - albeit having to work within the NHS guidance, but I moved from 12 weekly to 8 weekly injections as a result of simply asking if I could due to ongoing symptoms. I realise I’m very lucky they agreed to it. Hopefully I’ll have the same outcome when requesting 6 weekly injections, but my fear is that the doctor will see my “through the roof” blood results and take the injections off me all together. But Sleepybunny’s reply above contains so much useful information that I can go back to him with if that is the case - forewarned is forearmed!
I usually suggest that people put queries about treatment into a short, polite letter to GP and maybe copied to practice manager. See letter writing link in my other reply.
Always keep a paper trail and copies, screenshots etc of communication in case needed in the future.
May also be worth asking to record appointments. GPs and specialists are likely to be reluctant but possible to argue to be allowed to on disability grounds especially if you have memory, concentration or fatigue issues. See link below.
There are other forum members who live in Wales but can't remember their names. If you search posts using term "Wales" it should show some forum members in Wales.
Thing is the medical profession are obsessed with blood tests these days. They let the levels of these, or more to the point the ranges of these, rule their decisions completely no matter how the patient presents. My doctor sneaked in a b12 test without even asking me -done amongst a batch of everything else. It was very high at 2000 but then as I have to inject twice daily I would hope it eould be! Unfortunately as tests are organised electronically these days I cant see what is being tested but can get a copy of the results afterwards.In your shoes yes be prepared for polite battle but on the other hand line up your own resources because you know what if you still have symptoms you dont want to leave them -the nhs dont care if they cause damage by delayed treatment or by giving insufficient frequency of treatment.
I wish I had your tolerance of injection to inject two times a day. I have no idea how you guys can inject with that frequency. How long it took you to buildup that much of frequency. Did you start with less than that? How long it took you to increase that much? Thanks
Ive never had a problem with B12 jabs. Mine are Hydrox. Dont know if that makes a differnce. I started with alternate days due to neurological symptoms, then daily to stop a drop back and in last year twice daily. It might be worth switching your type of b12 BUT because you have had a bad reaction this would need to be medically supervised.
Am so sorry cant help you more but havent come across this before.
Thank you for your kind guide. But I don't think my reaction is unique. Many people complaining with severe muscle symptoms and it's really hard to manage since injection worsening it and I have to carefully buildup tolerance otherwise I can't even walk after injection. Three months ago I managed to reach everyday but severe weakness and unbearable pain started. No painkillers helped then I started to take iron since my feritin fluctuating and I thought may it be helpful and after taking that right away helped and stopped pain and in seven days my pain stopped since then I'm taking iron pills but my feritin is not that much low . First it was 23 then jumped to 34 and now is 39 or probably 40 and I'm trying to cut it. I think when muscles got lots of symptoms then these reaction are normal. Since I was so physically active then muscles are involved a lot. I have vision problem too but it's getting improved to somehow. Previously it was so bad blurry and double vision but a little bit is better. I hope hydroxy helps but I'm a little bit scared and I can't even ask my doctor to inject because my b12 serum was over 1400 recently. I live in Canada and doctors over here are terribly ignorant in pernicious anaemia and B12 deficiency since there is no guideline. I hit megaloblastic anemia last year but no one even couldn't find out what's wrong and by trial and error I found it's related to B12 . But in 2014 I was diagnosed with B12 deficiency and I was supposed to have monthly shot but doctor ignorance ruined my life. I have no idea where to inject my hydroxycobal amin but I have to start on my own. Can I ask what was your symptoms? In the meantime I didn't have muscle symptoms last year and after starting injection and laying on bed for long time my muscles started to show symptoms except my abdomen since the beginning was aching badly and losing strength and ended in umbilical hernia on it's own. I live alone and these problems affected me mentally so badly and I think I gave to join my family but it can cost me lots of things and losing many things.
I meant the reaction to the b12 jab which sounds like an allergy reaction....lips and throat swelling. The cause needs to be established.
B12 symptoms are very wide but mine were: tingling in arms legs, numbness in toes/,feet, creepy crawling sensation on legs/arms, weak muscles, postural tremors which spread gradually over whole body, no stamina, loosing coordination, blurred vision, incontinence, digestive upset, slow thinking/,poor memory, exhaustion.
Three years later most of these symptoms have gone or reduced a lot. Still have a mild left arm and legs tremor, partial incontinence and still tire but am hugely better.
A good place to checknout symptoms is on B12d.org. Thry have an excellant checker. I hadn't realised some of my symptoms were due to b12 deficiency. Also Dr Chandy book is v good. You can download for free on the B12d site or buy on Amazon.
Sorry asking you again, you inject subcutaneous or intramuscular? And what was your begining frequency? Since the first day you started to inject every other day? You didn't get any worsening if symptoms specially on muscles? Unfortunately my muscles have too much symptoms and I can't tolerate injection with proper frequency band that worries me. I'm trying first on cyanocobalamin to buildup tolerance and then switch to hydroxycobal amin but I have problem with broken health care system which completely ignores B12 injection if reading numbers go off the limit. This broken health care system caused all of my health problem since doctors ignorance left me with b12 deficiency for couple of years and now I'm suffering.
Am so sorry to hear how you are suffering Hamayeshguy. I self inject subcut and always have done - tummy and thighs. I started on alternates days. I also take Thornes Basic B as well as the b vitamins work together. Initially I ate bananas regularly to ensure potassium levels were good. I did not have any allergy side effects like swollen lips or tongue or throat that you describe. You need those symptoms checking. It maybe a different b12 will not have that effect or a different brand of b12.
Do not expect immediate effects. Some of my symptoms eased within a few weeks other have taken a very long time to dissipate.
Also make sure they check your thyroid & vit D levels & get the results and post on here.
I don't have allergies and I also ate bananas and take thornes b vitamin. But my muscles are tormented specially in my stomach and feel so weak. I didn't that much bad I don't know why symptoms developed. I can't tolerate injection frequently so I inject every ten days. If I inject more completely paralyze for two days. Now I'm trying to travel on a long flight and join my family since I can't live alone if I want to inject more frequently. But takes also time to raise my tolerance. In the meantime I need to switch to hydroxycobal amin to see dies it work better for me. I think it should work better as all scientific articles verified that. I hope all of your symptoms go away and completely be free if any symptoms of this painful illness. And thank nyou for guiding me
Awww yes I would try the hydrox version. Dont be too focused on frequency. Everyone is different. Lots of people feel worse before they start to feel better which does feel scary. I had a lot of stomach digestive issues going gluten free helped me but am not suggesting you do that.
I have injected 41 times in the last 8 months and before that used to take just B12 pills. Now I take B12 pills methylcobalamine timed release, iron pills on and off vitamin d, thornes b complex and Omega 3. But I can stay at home I have to go out everyday. But my weakness in muscles and pain really mentally affected me so deeply. But I think my symptoms a little improved. I try to raise frequency of cyanocobalamin injection but it's really hard for to tolerate. I have no clue why my muscles are so weak just by a more frequent injection stops me walking. Last two months I had problem with my iron but it wasn't detectable in bloodwork and by trial and error I found iron is working to help me muscle extreme pain and extreme fatigue. It works right away after taking that and I couldn't find any information why it works so fast. Just half an hour after taking working! I started to take whey protein shake after each walk and I think a cup of it's diluted form helps a little bit. Cyanocobalamin is not reliable form and it's retention is not satisfactory that's why I'm trying to switch to hydroxycobal amin but I asked two pharmacy in Germany they don't know when can I get in Canada. I'm so afraid not be able to move and get paralyzed so planning to join my family in far far away from Canada which will be a long flight but I'm not sure when plan to travel since I lose many things if you move from here
Thanks nackapan, I eat picked stuff everyday which is full of salt and eat banana and orange juice which I think help with sugar. But I think my muscles symptoms are more than any other one due to high physical activity during deficiency but getting better. I can't tolerate injection since execerbate my symptoms and I get paralyzed temporarily so trying to increase injection frequency gradually and also taking methylcobalamine timed release but I'm so scared because I live alone and I need to have someone to help me if my symptoms got worsened after injection at the same time I'm so worried to increase my injection faster in order to not let it becomes permanent nerve damage but I need to switch to hydroxycobal amin as soon as possible and with current broken medical system in Canada it's impossible to ask doctor to jab my hydroxycobalamin since my b12 recent reading was over 1400. I couldn't refuse because hospital internist was asked and their other medical links could be stripped if I was refused. I have no clue how to fix my agonizing situation
"My doctor sneaked in a b12 test without even asking me"
I've not had any blood tests for a while but when I do, I always ask the nurse to read out what is being tested. If it ever says serum B12, I will refuse the test.
If I suspected a GP was going to test B12 without telling me I would have a written letter on me refusing the B12 test which included info from UK documents supporting view that testing after treatment has started is not needed and including a request to file letter with my medical records.
There are some situations where a B12 test might be justified eg if GP suspects liver or kidney issues, possible cancer but I would discuss reasons with GP first.
Thanks Sleepybunny. Nothing was discussed either before or after. I have no idea what she was thinking or her conclusions. However you'd think if she wanted to check my b12 levels she would ask me to refrain from injecting that day?Tbh I have no faith in the GP - she thought I was on 3 anticoagulants! I had to explain what each heart meds does She didn't even know Ramiprimil was to lower blood pressure. After these tests came back I was ill (been poorly for nearly 4 weeks with a chest virus) and she did finally see me and promptly admitted me to hospital claiming low SATS. Hospital found no evidence despite repeat checks and discharged 24hrs later. No follow up from the GP at all.
I also have no choice in who will phone me if I manage to get phone call slot....since the pandemic they've removed all choice.
Mine was 1400 but my symptoms are horrible. I'm on cyanocobalamin injection every 10 days and trying to inject more frequently until reach everyday but I need to buildup tolerance and then switch to hydroxycobal amin as I trying to order it. At the same time I'm taking timed release methylcobalamine and it's so helpful but I think methyl folate b complex also so helpful. My muscles are terribly weak and I was kind of a person to go out from dawn to dusk so it affected me mentally so badly. But I feel my vision improved. I have no idea how just pills and cyanocobalamin injection can help but in my case since I depleted my b12 almost completely until I hit megaloblastic anemia that's why I think If I inject hydroxycobal amin with highest possible frequency like everyday may I can reverse most of my symptoms like two to three years if not exceeded three years. But building up tolerance looks like so hard for person like me who has severe muscle neuropathy. So painful and debilitating even sometimes I can't stand on my feet and be able to walk.
These responses are very interesting. It makes me think I am very lucky with my current medical situation. My doctor did include a B12 test during my yearly physical. When we went over the results at my next visit he told me my B12 was at 500 and he didn't like that. With his patients who need B12 injections he likes to see B12 levels at 1,000 or more.
My current GP nurse practitioner in the US also tests my B12 annually and it always comes back >2000 (highest the test goes) and she just calls that "stable." She stopped prescribing me B12 but she never mentions my high level from self injecting; we just don't talk about it. That's fine by me.
B12 assay methods are almost certainly run using a commercial kit. When you see a high result reported and it's got two zeroes on the end; 1200, 1400, 2000 or such, then it's very, very likely that the analyser has found it's >1200, or >1400, or >2000. Each manufacturer as a dynamic range for the kit, and the only wat to get the 'true' result [whatever that means] is to dilute the sample and rerun it. [That's not quite as simple as it sounds either.] But an over-range sample for B12 is laregely irrelevant; it just shows there's enough. With ferritin, however, it's usual to dilute the sample to get an actual numeric result, but that's another story. It's likely that the lab system, or the GP system, can't handle '>' or '<' as they aren't numeric characters, so they've been edited out of the data string somewhere. I might be wrong here, as it's not always the case, but I suspect that's what's happening.
oops! I overlooked the question! Sorry. It may well be justified to retest occasionally, if there's any possibility that there may be compliance issues. If a patient is allegedly 'self-injecting' then it might be worth repeats in case they aren't complying with the treatment, although I realise I might have just insulted some folks, and that was never the intention. In general, it's of little or no point, and likely to be misleading.
Just an update on my original post Gutted to report that my new doctor has turned out to be like all the rest! 🙄He just called and said that my B12 levels are “higher than the lab can measure”, and that “we know there are links to serious health conditions with long term frequent use of B12 injections” (- do we?!?!) and that he thinks my long list of physical symptoms are “psychosomatic and that we should increase the sertraline to 100mg” I’m so frustrated I could cry!! I managed to persuade him that we try beta blockers first (to try and help calm my palpitations)… and he said “yes, we can try them with a view to also upping your sertraline” 🙄 So I’ll try them for a few weeks, and see if they help with the heart symptoms, and then he’s calling again on 15th December. So disappointed. 😔
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