I have just come off the phone to my GP in tears. I have been having palpitations and weird vibrations/juddering/pins and needles throughout my body for a couple of months now. Yesterday it felt almost like a panic attack because it was definitely caused by a stressful event. I couldn't get through to the GP until this morning.
In 2016 I was contacted by the surgery saying I needed urgent B12 injections and I was given four that week. I was told I'd have the injections for life by the nurse who gave them. I felt great afterwards but when I started to feel tired and low I went back to the GP and said I think I needed more. He refused to give me any, saying that the "number" was normal, I'm sorry that I can't give you the figure but I think it was 216 (range 190-950. I am prescribed daily 50 microgram of Cyanocobalamin.
In the intervening years I have asked several times but told the figure wasn't low enough. So I have resorted to buying B12 patches and sprays and even timed release Methycolbalamin tablets (I get get when I visit my son in Canada). With Covid I haven't been able to get these. She told me that the latest figure which was over a year ago it was 266, so definitely not low enough and normal. However, she is sending me for an ECG and blood tests. I am also Hypothyroid.
I'm frustrated because during my conversation she repeated several times that my B12 levels are not low. She also said curiously that tablets were not useful to boost B12 and only injections can do that and didn't answer when I said that they were prescribed for me. She ignored the fact that I have used sprays and patches at times.
I am so tired and depressed, there are times when I feel that someone has pulled out a plug and I feel so weak. I am 75 and have a normal diet, I don’t drink alcohol very often. I had Bells Palsy in January which with the help of 10 days of steroids cleared up pretty quickly, although I can't say I've felt 100% since then. She did say that there's no connection with Bells Palsy and B12 although I have read that Bells P is sometimes treated with B12. The trouble is, I've never been 75 before and I don't know how I'm supposed to feel but I can't believe that this is right.
I have to contact the doctor again when the results of the tests come through but I would welcome some advice as to where I can go from here if she still continues to refuse the injections that I feel instinctively that I need. Also, I have read about neurological systems of low B12 and wonder if the palpitations and vibrations I am experiencing are examples of that.
Sorry for going on so long, but I feel so frustrated and need some help from people who know about B12 because I seriously doubt that our GPs do!
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RoniB
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I'm so sorry to hear what you are going through and at the same time frustrated as it's a story that forum members hear again and again.
I have copied the following info from another thread so apologies in advance for any info that is not relevant.
I suggest you take a few days to digest all the info and maybe have someone supportive to help you go through it.
PAS can offer support and pass on useful info so if you have a PA diagnosis or suspect you have PA, worth joining and talking to them.
"In 2016 I was contacted by the surgery saying I needed urgent B12 injections and I was given four that week. I was told I'd have the injections for life by the nurse who gave them."
I suggest you get hold of your medical records/test results from that time and see what you were diagnosed with. I suspect there may be a PA diagnosis in your records somewhere as PA requires life long treatment. At very least there should be a blood test result from that time showing low B12 or other test results indicating B12 deficiency.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case you need it in the future.
"she repeated several times that my B12 levels are not low"
I had severe B12 deficiency symptoms including with most serum B12 results between 300 - 500 ng/L, well within normal range.
Some forum members, including myself, have found that after being told everything was normal/no action that there were abnormal and borderline results.
These days I don't accept being told everything is normal unless I have a copy of results in my hand or on my screen.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency.
I recommend you get hold of the local B12 deficiency guidelines for your CCG/Health Board and compare them with BNF, BSH and NICE CKS links if you have time.
Some of these local guidelines are not very helpful so it's good to know what you are up against locally. I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum.
Some local guidelines have been posted on this forum so may be worth searching forum posts.
Coeliac disease
Just curious as to whether you have been tested in past. Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.
Link has letter templates that people can base own letters to GP on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
Keep copies of any letters sent or received.
It may help to concentrate GPs mind if you mention any concerns you have about possibility of suffering permanent neurological damage including damage to spinal cord if not given recommended level of treatment (see BNF link) in letters to and conversations with GP.
Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
Some people on this forum have resorted to treating themselves which I feel is a last resort.
I was forced to do this at one point when all options for NHS treatment ended and I knew I was headed for dementia and spinal damage if I didn't get B12 treatment. I already had dementia type symptoms and symptoms affecting my spine.
Misconceptions
GPs and specialists may have misconceptions about B12 deficiency.
Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
There may be some details in the links that could be upsetting.
Thank you so much Sleepybunny. I will take my time as you suggest and read as much as I can. I found my last year’s blood test results which showed MCHC hb results as low. I don’t know if that is connected. GP didn’t mention that. Thank you again, it’s good to know you’re not alone. I like the idea of a letter template because I’m not very dynamic when faced with a doctor who insists that you’re normal when I know that I’m not at the moment.
"I found my last year’s blood test results which showed MCHC hb results as low"
Have you got recent results for B12, folate, ferritin or other iron tests and full blood count (FBC)?
May be helpful to post them on the forum , taking care to avoid posting any details that might identify you or a health professional.
"I like the idea of a letter template "
More about letter writing
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
Proof a letter was received may be important if there is a need for a formal complaint in future.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
"In 2016 I was contacted by the surgery saying I needed urgent B12 injections and I was given four that week"
I think it would really help to see if you can track down your medical records from 2016.
If for some reason some records are not online, you can request access to paper records. Keep copies of any such request.
Your GP surgery website should have details of how to access records online.
GPs are only allowed to refuse access if they feel it could cause harm to someone.
Look for evidence of a PA diagnosis...this is likely to be a positive result in an IFAb test (Intrinsic Factor Antibody test) and get a copy of anything helpful.
It could be that you had a low B12 result and the doctors at the surgery assumed it was PA without testing IFAb.
Some results on FBC (Full Blood Count) may give clues as to whether B12, folate or iron deficiencies are possibilities.
In 2016, were you eating a diet with plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs and foods fortified with B12?
If yes to a B12 rich diet in 2016 then diet as a cause of the original B12 deficiency is unlikely and more likely that there was/is an absorption problem in the gut eg PA, Coeliac disease, H Pylori infection or other gut issue.
"am prescribed daily 50 microgram of Cyanocobalamin"
It appears that your GP has assumed your diet is the cause of B12 deficiency issues as low dose cyanocobalamin tablets are only recommended for dietary B12 deficiency.
My understanding of UK guidelines (see BSH Cobalamin and Folate Guidelines) is that any cause of B12 deficiency where there are neuro symptoms, should be treated with B12 injections even if the cause is diet ( see BNF hydroxycobalamin link for details of treatment).
If you have multiple deficiencies then the picture can become quite complicated.
GP might be looking for signs of macrocytosis, enlarged red blood cells.
Macrocytosis can be associated with both B12 deficiency and folate deficiency.
Iron deficiency can lead to microcytosis, smaller red blood cells.
A person with both iron deficiency and B12 deficiency (or folate deficiency) may have normal range results on Full Blood Count as effects of iron deficiency may mask the effects of the B12 or folate deficiency.
A person with undiagnosed B12 deficiency may have that deficiency missed if they are receiving treatment for folate deficiency as the folate treatment may mean that the red blood cells appear to be normal size on FBC.
I suggest you put any thyroid results on Thyroid UK forum on HU.
"I like the idea of a letter template because I’m not very dynamic when faced with a doctor who insists that you’re normal when I know that I’m not at the moment."
It's very hard to be assertive when your head feels like it is stuffed with cotton wool and face to face with a GP who is unhelpful but your health may depend on it.
I learnt a very hard life lesson that sometimes the only person who is going to help you is yourself.
Have you considered having someone with you at face to face appointments when pandemic constraints allow? Take someone who is supportive and even better if they have read about B12 deficiency and are willing to speak upon your behalf.
If the appointment is online, perhaps someone supportive and well informed could be in the same room as you.
You could ask permission to record any appointments. GPs and specialists are likely to be very reluctant to agree. You should be able to argue that this is necessary under equality legislation if you have brain fog and/or other cognitive issues.
It is my impression that GPs are kinder if there is a witness present.
If a doctor denied me treatment due to having a normal B12 range result when I had symptoms consistent with B12 deficiency, I would quote this point from the summary of BSH guidelines in a letter to and in any conversation with GP.
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
Has your GP got a list of all your symptoms especially any neurological symptoms including any affecting spinal area?
IF yes to neuro symptoms, perhaps you could politely request a referral to
1) a neurologist
2) a haematologist
(see link below which suggests that GP should urgently seek advice from a haematologist for patients with B12 deficiency with neuro symptoms)
There is always a chance that a specialist has a better understanding of B12 deficiency than GPs but don't expect wonders...there is ignorance about B12 deficiency among some specialists as well as some GPs.
Any chance of internal parasites eg fish tapeworm?
Heavy drinking can affect B12 levels .
"The trouble is, I've never been 75 before"
I do feel that sometimes older people may be at a disadvantage. I sometimes think that too much is put down to old age when there may be a treatable cause of symptoms.
I have read that sometimes levels of stomach acidity may decrease in older people and this may affect B12 absorption.
Good luck with getting treatment that is right for you.
Thank you again Sleepybunny. You have given me so much help and so much to read and consider. I can't get a blood test until 20th September because of the blood test tube shortage so I have a lot of time to consider the best approach. I'm having the ECG tomorrow. I do eat a normal diet - mostly cooked from scratch which includes meat, fish, eggs and dairy as well as home grown vegetables and I was definitely eating the same diet in 2016 when I was given the injections.
I will post again when I have something new to add but thank you again for your help and concern.
"I do eat a normal diet - mostly cooked from scratch which includes meat, fish, eggs and dairy"
I suggest that in any letter to GP you could point out as briefly and politely as possible....
1) your diet is B12 rich (include list of B12 rich foods you eat), a dietary cause of B12 deficiency is unlikely and ask why you have been prescribed low dose oral b12 tablets recommended for dietary B12 deficiency
2) you were told B12 injections would be for life in 2016, you were eating a B12 rich diet in 2016 so original cause of deficiency likely to be absorption problem rather than diet.
If you find a PA diagnosis in your medical records from 2016 include that fact in any letter along with date of diagnosis and doctor's name and that PA requires life long treatment.
You could include a copy of PAS leaflet "Treatment is for Life"
3) list your neuro symptoms, especially any affecting spinal area, and ask to be treated according to BNF (British National Formulary) for those with B12 deficiency with "neuro involvement"
GP can find the treatment info in BNF book Chapter 9 Section 1.2 or you could include a copy of info from BNF Hydroxycobalamin link below.
For those with neuro involvement it's a loading injection every other day for a
as long as symptoms continue to improve then a maintenance injection every 2 months.
Examples of neurological symptoms that can be associated with B12 deficiency.
tingling
numbness
pins and needles
electric shock sensations
burning sensations
insect crawling sensation (formication)
I used to get the sensation of water trickling down my spine.
tinnitus
muscle twitches,
muscle fasciculations (looks like muscles are rippling under the skin)
flickering eyelids
restless legs syndrome RLS
periodic limb movements (jerks that often affect legs/arms,can affect fingers, toes, head)
vertigo
migraine
clumsiness
dropping things
bumping into things
strange gait (unusual way of walking)
foot drop
word finding problems, (nominal aphasia)
balance issues
brainfog
confusion
proprioception problems (problems with awareness of body in space)
memory problems
strange behaviour eg putting car keys in the fridge, boiling the kettle without any water in it
Check symptoms lists in my other reply for examples of other neuro symptoms.
4) you wish to avoid permanent neurological damage including SACD, sub acute combined degeneration of the spinal cord
You could be in for a fight to get appropriate treatment so enlist some support from friends, family and PAS (Pernicious Anaemia Society).
After so long with only low dose oral treatment, worth asking GP to consider giving loading doses again.
I am deeply cynical after very difficult experiences with doctors....I feel I lost over 15 years of my life to unrecognised B12 deficiency and probably have some permanent damage.
Prescribing a 50 mcg tablet is much cheaper than giving B12 injections. A b12 ampoule for injection is cheap (less than £2) but nurses' time to give injections is expensive so I wonder about pressure to save money in some GP practices.
There are moves across UK to put more patients onto high dose oral cyanocobalamin tablets 1mg (1000 mcg) as an alternative to injections.
Some forum members manage on high dose oral tablets but they do very little for me and other forum members report that high dose oral tablets are ineffective.
High dose oral tablets are sometimes promoted as easier for patients but I suspect a financial incentive.
"However, she is sending me for an ECG and blood tests."
What blood tests has she ordered?
Apologies for firing so much info at you. I just want others to avoid what I went through.
I don’t have PA, but I care for my wife who does. However, I am 75, so I can tell you what that’s like for me.
Inside, I feel as young as I ever did, and I have to keep reminding myself I am not 25 any more, or my body will do that for me!
I take a few tablets every night - Warfarin to stop blood clots, Levo for hypothyroidism, Atorvastatin for high cholesterol, and I am borderline late onset diabetes, which is diet controlled.
But I don’t feel any aches and pains, or anything from those meds, except maybe I notice what the Levo is for, as time rushes by for me, and my wife says I’m slow, which is what that looks like from outside of me.
We’ve been having tradesmen in to do jobs in our new house, and I have been doing some too. They can go all day, but I can only do a few hours. That’s new. They can lift things I can’t even keep one end of up; but then I’m pretty sure that’s always been the case.
I’m still quite smart, perhaps not as smart as I once was, but still programming professionally. The odd word or place name sometimes eludes me for a bit, but then it always did, I think. Maybe more than before, though.
I can still drive a car, ride a bike, play guitar, work today’s technology….
This isn’t what I imagined being 75 was going to be like; but in a (very) good way.
Thank you for your reply. It was good to read and gives me hope that I will be able to get back to my many hobbies. I too am good with technology, I was a graphic designer and still use the packages I have for friends (or should I say I DID until I started to feel so awful). I also have a large kiln and make pretty things with fused glass - again I should say that I DID. I drive, but have felt a bit too light headed and wobbly to do that recently, but just watch me now.
You may be wondering what has happened to promote all this positivity, maybe my last post will explain. I'm very happy - 75? - I'm just a youngster. Thank you Midnight_Voice x
I'm so sorry to hear what you are going through. It saddens me to think that GP's can not learn about B12 deficiency, and why in the UK we cannot buy it over the counter. My nurse taught me to Self inject and I buy my own supplies too. I don't every want to be low again.
Re: Bells Palsy, a few people I know had it directly after their covid vaccine, my friend went on to get Guilliain barre too, so not sure if it may be linked to that rather than B12. Glad to hear you are recovered.
Thank you. My Bells Palsy was actually before I had my first vaccination but I had read that some people had it afterwards. Mine was curious as I'd been isolating with my husband who had Shingles two weeks before my BP appeared. Apparently the same virus could be responsible for both. I guess we'll never know.
As to the injections, I'm hoping that I have now secured a regular supple. See my last post. Thank you again.
Thank you beginner1. That’s really interesting. I feel I have a battle ahead but feeling as good as I can be is worth fighting for. I have a while to wait for blood tests due to the shortage of test tubes but I will use that time usefully - arming myself with lots of information. If it doesn’t work, I know there are other ways to get what I feel instinctively that I need!
I can't begin to tell you how happy I feel tonight. I went for my ECG and you couldn't make it up but the machine wasn't working properly. However, it gave me loads of time to talk to the nurse, telling her all the things I had learnt from you wonderful people, especially Sleepybunny who has been amazing with her support and advice. I was able to explain exactly how I felt and that I was sure that depleted B12 was my problem. Eventually the nurse took the 4 paper readouts with error messages through to the doctor who read them and I think felt that my heart wasn't the problem but came into the room and physically took my pulse. My heartbeat was obviously going crazy (a combination of stress at the machine failure and the build up stress of how ill I'd been feeling. He said "you're very anxious so I'm giving you Beta Blockers to calm you" and then added "and will you administer a B12 injection nurse" Furthermore, I have a date for a second one. I just can't believe it, I really thought I would have a very long battle if I was ever to achieve what I knew I needed. Now I know it can't have started to work within 3 hours but I feel ecstatic - I'm sure my heartbeat has lowered considerably and I haven't even collected the drugs yet. I'm grateful for them, but I think that the B12 boost could be all I need to feel great again so I will be very cautious with the Propranolol the doctor has described.
Thank you everyone, your advice was invaluable and I will never forget it. I hope I don't need to use it but I have made so many notes and will keep them all. I just can't believe that after four years of practically begging for an injection, there is one circulating my body right now. Good luck to you all xxx
In three months. When I was given the loading doses it was four in a week but they said that would be adequate. I have to admit that I’m not feeling so upbeat today as I was yesterday and feel a bit washed out but I think I was just a bit euphoric when I managed to get an injection.
I'm assuming the ECG and injection happened at a hospital.
Might be worth accessing your hospital records when you have time as I assume there will be confirmation that you discussed B12 deficiency with hospital doctor. Hospital may also send a letter to GP with treatment recommendations so worth seeing what any letter says about further B12 injections.
"In three months"
BNF indicates maintenance jabs every 2 months for those with neuro symptoms
and every 2 or 3 months for those without neuro symptoms
The ECG and injection was done at my GP surgery and the Beta Blockers prescribed by my GP. I have to see him again in a week. It’s the lowest dose and the label says 1 to 3 tablets a day. He said it was to help with my anxiety although I know it’s prescribed for other health issues. It does mean I will be able to discuss everything again so I’m happy about that.
If you're not happy with what happens in your appointments, I suggest following them up with a letter. See letter writing links in my other replies. Putting things in writing makes them harder to ignore.
I think you need to know whether your injections are going to continue past these two.
If you can find evidence of a PA diagnosis in your records from 2016 or other condition that can lead to B12 deficiency or a statement saying you would need B12 injections for life that will be very useful.
If you do find a PA diagnosis in your records or a statement that you should have injections for life from 2016 then you may want to consider making a formal complaint about not having injections for 4 years.
If you had any hospital admissions/appointments in 2016 or afterwards there may be a mention of B12 deficiency/PA etc in those.
I think many of us on here end up having to be our own medical detectives...collecting evidence to prove our case.
Have a look at any prescriptions you get in next few months. They sometimes have a list of recent medicines/drugs etc prescribed to patient and may include evidence that you have received B12 injections recently.
May be worthwhile to keep a daily symptoms diary that tracks changes in symptoms over time and if and when any treatment is received.
This could be useful evidence of improvement or deterioration in symptoms to show GP or other doctors.
You could film any visible neurological symptoms to show GP.
"I have just come off the phone to my GP in tears"
I had many appointments face to face when I was in tears the moment I had got out the door.
I had experiences of being shouted and snapped at by doctors. I don't think they liked the fact I was persistent in trying to get a diagnosis but I was scared and felt I was dying. At this point I already had over 40 symptoms including dementia type symptoms and spinal symptoms.
I was given labels of depression, hypochondria, psychosomatic symptoms, functional neurological disorder, ME/CFS when I desperately needed B12.
This time was rather traumatic for me so you are not alone in finding things difficult.
In the end the GPs put pressure on me to leave...they were very subtle in how they did it and I was forced to treat myself.
Although I feel self treatment is an absolute last resort, I wished I'd done it sooner when symptoms finally started to improve and disappear.
I did eventually get some NHS treatment from a GP who was willing to listen.
I have the NHS app and can’t access my notes but I can access previous prescriptions. The injection I had was already listed with the instructions every three months and 5 ampules so I guess that means I’m ok for at least five more. I think that should mean I have a case to continue after that. I was so lucky that the nurse was hugely supportive and I am convinced that she recommended that I should have injections. She was talking to him for a long time while I waited in a different room.
I can still hardly believe that after so long I have managed to get that precious injection. I had a great day yesterday but may have overdone it as I’m not quite as good today but it’s still less than 48 hours since I had it.
Thank you again for your help Sleepybunny. I have copied and pasted so much information from the websites you recommended into a file that I will keep and the idea of a diary is great - it’s so easy to forget what you feel like day to day.
If you feel every 3 months is not enough because your symptoms are returning or worsening before next jab......
I hope you get your GP surgery to consider another set of loading doses and maintenance injections every 2 months if you have any neuro symptoms....and because you went 4 years without jabs.
For those who don't have neuro symptoms, BNF suggests maintenance jabs every 2 - 3 months.
It's possible your GP surgery is not aware that the BNF suggests maintenance jabs can be every 2 months. You could tell the helpful nurse and GP that this info is in BNF Chapter 9 Section 1.2 and have a copy of the info at hand during appointments.
Have you tracked down the local guidelines on treating B12 deficiency for your CCG (Clinical Commissioning Group)/Health Board?
Try an internet search with "name of your CCG B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG asking for a copy of local B12 deficiency guidelines. Search posts on this forum for "local guidelines" as some have been posted in the past. Local MP may be able to help you track them down if you still can't find them.
When I finally realised that B12 deficiency was the cause of my ill health , I started to wonder about other people I knew who had similar symptoms. I hope you'll be able to pass on any info you have found useful to help others.
“When I finally realised that B12 deficiency was the cause of my ill health , I started to wonder about other people I knew who had similar symptoms. I hope you'll be able to pass on any info you have found useful to help others.”
I have already done this, several of my friends and a family member are, in my opinion showing signs of a vit B12 deficiency and I have advised them to look into it. We definitely need to make more people aware.
I’ve had so much help from you and I’m following your suggestions. In the end, I didn’t need to use it all but I hope that other people will read it and realise they’re certainly not alone. Good luck 😄
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
and I don't know how I'm supposed to feel but I can't believe that this is right. 
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