I have been experiencing several severe symptoms over the past three to four years. Recurring chest infections, UTIs, heart racing, severe breathlessness, excruciating pain down centre of back and side of back around hips. Pins and needles down limbs and ‘under scalp’. Feeling cold all the time. All of these reported to Doc over several calls with responses that ‘they could find nothing wrong with me’! I thought I was going mad or turning into a hypochondriac. But most recently I ended up eventually getting to see a doctor with a swollen abdomen and pain with 7 trips to toilet a night and having to wear incontinence pad during day in case I was caught short. I felt so poorly and weak I could hardly get up the stairs.
I asked for a B12 test as my brother had recently been told he was B12 deficient. I had no idea what the deficiency actually meant but he had been tripping and falling and I presumed it was just a vitamin thing.
My results came back B12 serum 110 ng/L and Serum folate 3.0 uh/L.
My doctor has given me six loading doses a month ago and told me I won’t get another until the end of July. I rang this week to ask for more as the pain in my back and hips is so bad and he told me I was ‘overly impatient’ . I think I might have nerve pain issues but I don’t know how to describe neurological symptoms or what nerve damage in my back might feel like. I would be grateful for help. I have not been referred to anyone yet my brother has now lost sensation and movement in his left leg. He is with another doctor.
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Skimmingstone226
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1. Insist on more frequent injections. If you're in the UK here are the recommendations. bnf.nice.org.uk/drug/hydrox... If you're in the USA you just have to keep yelling at the doc.
2. Insist on a referral to a neurologist. The docs can find nothing wrong because they don't know what to look for,
Thank you for getting back to me. I am in the UK and it was when I quoted the NICE guidance which I had read about on here, that he patronisingly called me overly impatient. He said he is going to do another blood test in two weeks. I don’t know if what I am experiencing count as neurological symptoms?
Thank you all so much. Dealing with the illness is hard enough without having to deal with doctors who don’t seem to care. I’m so angry that this has been going on for years. I even asked this GP to check my immune system two years ago! He told me my bloods were normal. Now I wonder what he even tested. You are all such an amazing support. Thank you
Hmmm.....reminds me of when I mentioned the PA society to the clinical technician who was trying to stop my injections, she says 'who is the PA society a group of your friends' .....as a by the way....she did stop my injections...... 😏
ditch the waste of space! I cld be a doctor like him/her. Look for the specialist.my surgery is wonderful. 3 docs, consult with eachother.good for them, good for a patient. But INSIST ON SEEING A NEURO SPECIALIST...IF A STATE GP doesn't wanna refer you, seeek private help.You go nuts with pain.
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Vital to get adequate treatment. Untreated or under treated b12 deficiency increases the chance of permanent neurological damage including damage to spinal cord.
Has your GP got a list of all your symptoms with any neuro symptoms highlighted?
Referrals
With neuro symptoms present, has your GP referred you to
1) a neurologist?
2) a haematologist?
NICE CKS link in this reply suggests that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.
If GP won't refer you to a haematologist perhaps you could ask them to write a letter to a local haematologist asking for advice.
If gut symptoms present
3) a gastro enterologist
Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori infection etc.
A warning....
There are far too many UK GPs and specialists whose knowledge of B12 deficiency is lacking. My advice is to be well prepared for any appointment and to do some B12 homework as from personal experience, some doctors don't appear to do theirs.
To my mind your GP should be trying to find out why your B12 is so low.
Do any of the risk factors listed below seem likely?
If you eat plenty of B12 rich foods (meat, fish, shellfish, eggs, dairy, foods fortified with B12), diet as a cause is less likely and more likely that there is an absorption problem in the gut eg PA/Coeliac disease/H Pylori infection and other possibilities such as Crohn's disease, SIBO (small intestinal bacterial overgrowth), damage to terminal ileum (part of gut where B12 is absorbed), infection with fish tapeworm and some other internal parasites, some drugs and medicines ( egs metformin, a diabetes drug), exposure to nitrous oxide etc.......
Have you been tested for PA (Pernicious Anaemia) and Coeliac disease, two auto- immune conditions that can lead to B12 deficiency?
Has your brother got a PA diagnosis?
PA can run in families...so can coeliac disease.
Is there a family history of auto immune conditions?
Best advice I ever got was to always get copies of or access to all blood test results. Some forum members also get copies of/access to complete set of medical records.
I learnt to do this after being told everything was normal/no action and then finding abnormal and borderline results when I got copies/access.
Have you got test results for folate, ferritin or other iron tests and full blood count as well?
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.
See section for patients with "neurological involvement" in above link if neuro symptoms present. Sadly some GPs and specialists may be unaware that there is a different pattern of treatment for B12 deficiency if neuro symptoms present.
Link above has letter templates that people can base their own letters on.
Point 1 is about under treatment of B12 deficiency with neurological symptoms.
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.
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.
Local MP may be worth talking to if struggling to get adequate treatment.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in book is out of date. See BNF HYdroxycobalamin link in this reply.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
I will add more to this reply so check back later.
Here's some more...sorry to fire off so much info at you but there is a lot of ignorance among health professionals and you may need to arm yourself with useful info to refute some of their misconceptions.
Each CCG/Health Board/NHS Hospital Trust will have their own local guidelines on treatment/diagnosis of B12 deficiency. I recommend you track down the local guidelines for your area of UK and compare them with BSH/BNF and NICE CKS links.
Some of these local guidelines are not helpful and I think it's a good idea to know what you are up against.
There is a helpline number that PAS members can ring.
PAS website has lots of useful articles/leaflets that PAS members can print out. Some pass them onto GPs. Some articles can be accessed by non members.
The guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease and anyone with a first degree relative with coeliac disease.
Worth reading these guidelines as GPs
1) Sometimes don't order all the recommended tests
2) Don't tell patients to eat plenty of gluten for several weeks before blood is tested.
A patient with coeliac disease may get a negative result in usual tests if
1) they were not eating enough gluten before tests
Nitrous oxide is a gas that is sometimes used as pain relief or anaesthesia during operations and medical/dental procedures. It is in gas and air mix used as pain relief during labour.
Some internal parasitic infections can lead to severe B12 deficiency.
Fish tapeworm infection and infection with Giardia Lamblia are two I can think of.
Do you ever eat raw or uncooked fish eg sushi, smoked salmon?
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil results can be found in Full Blood Count results.
Have you ever lived or stayed in an area where internal parasites are common?
I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites etc in threads below.
"doctor has given me six loading doses a month ago and told me I won’t get another until the end of July"
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
There is no set time limit for how long the every other day loading jabs can continue for those with neuro symptoms. It could be weeks even months as long as symptoms continue to improve.... more than six loading injections though.
You appear to have been put on the first pattern when my understanding (I'm not medically trained) is that you should be on second pattern as you have neurological symptoms.
"my brother has now lost sensation and movement in his left leg. "
Please pass on any info you think might be useful to your brother.
Has your brother been referred to neurologist?
As I said before there is a risk of damage to the spinal cord if B12 deficiency is under treated.
See info on SACD in other reply.
Some forum members cannot manage on the treatment they get from NHS and some resort to self treatment with B12 ampoules sourced from European online pharmacies. I feel self treatment is an absolute last resort but I was forced to when NHS refused to treat me.
I got to the point of dementia type symptoms eg memory issues, couldn't find the right word(nominal aphasia), mental blanks, lost ability to do mental arithmetic, strange behaviour eg car keys in the fridge, boiling kettle without any water, forgetting I had left iron on.
I also has spinal symptoms such as insect crawling sensation (formication), sensation of water trickling down spine, pins and needles, tingling and numb spots in spine , balance issues, problems with position sense (also known as proprioception sense), back pain, pain in coccyx (at end of spine),
I count myself lucky to have avoided SACD, sub acute combined degeneration of the spinal cord and dementia although I have some permanent symptoms which I think is due to the length of time I was left untreated.
Might be worth drawing GPs attention to possibility of SACD in patients with B12 deficiency with neuro symptoms.
I am not saying you have this , I am not medically trained but I am saying your GP should be aware of the possibility .
Neuro symptoms can include...
tingling, numbness, pins and needles, electric shock sensations, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, migraine, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space).
There are many other possible neuro symptoms that can be associated with B12 deficiency.
Thank you so so much. My brother has been referred to NHS Neurologist ...he was seen at a Falls Clinic but we are having to go private because the WL is years here. My daughter 29 has just been diagnosed last week because I told her to get checked and her doctor in England has referred her to a haematologist immediately. I now know that I have 10 cousins with B12 deficiency and my mother has it. Your symptoms sound so similar. I’m terrified of ending up like my brother.
Have any of your relatives got a PA diagnosis,Coeliac diagnosis or other condition known to cause B12 deficiency?
Does your GP know that you have at least 13 relatives with B12 deficiency?
If GP does not know this, I suggest you include this info in any letter to GP.
If GP does know about the sheer number of relatives you have with B12 deficiency, I don't know why you have not at least been tested for PA and Coeliac disease.
I often suggest to people that it's more effective to put queries about treatment/diagnosis into a letter as harder for GPs to ignore.
Does your GP think your low B12 is due to diet?
You could write out a typical weekly diet, food and drinks to show or send to GP.
If your diet is B12 rich then your GP will hopefully consider the possibility that you have an absorption problem in gut and make suitable referrals.
I used to ask in a polite letter to GP for referrals to specialists along with evidence that supported my request eg symptoms, extracts from UK B12 documents/articles.
Link about writing a letter to GP if under treated for B12 deficiency with neuro symptoms
You could ask GP in any letter to be tested for PA and remind GP of large number of relatives suffering B12 deficiency along with useful quotes from BSH , BNF and NICE CKS links. Keep letters short as more chance of them being read by a busy GP.
If GP refuses to test you for PA (Intrinsic Factor Antibody test), it is possible to get this test privately in UK and also tests for coeliac (tTG IgA test and Total IgA test).
If they refuse to test for PA, you could ask them why they think you don't have PA.
As I said before, a negative result in IFA test is possible in people who have PA.
Martyn Hooper, chair of PAS, was tested more than once before he got a positive IFA result.
Perhaps your other relatives would find this forum useful?
GP/patient relationship
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.
Do you keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received? This could be useful evidence to show GP/specialist of any deterioration or improvement in symptoms.
Folate
"Serum folate 3.0 uh/L."
Do you have a ref range for folate result?
I don't recognise the units being used. Did you mean ng/ml or perhaps ug/L?
3.0 ug/L would be at the lower end of the normal range in most UK areas, might even be below range in some areas.
What has your GP said about your folate result?
Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
Folate deficiency - article aimed at health professionals
B12d.org were holding online support meetings during pandemic.
Not sure if these are still happening.
I am still improving years after finally starting treatment and I had multiple neurological symptoms and many others (over 40 different symptoms).
I hope your GP can be persuaded to consider more frequent B12 injections as you have neuro symptoms.
Sometimes GPs will say they have to stick to the guidelines.
If you get this response, you could point out in letter or conversation that BNF
suggests every other day loading injections for as long as symptoms continue to get better then injections every 2 months where there is neurological involvement.
GP can find this info in BNF Chapter 9 Section 1.2. BNF info also available online.
GPs are allowed to prescribe off licence if they feel it is in patient's best interests.
This is so helpful. I did have a second lot of bloods taken but no one said anything about the results to me I thought it was just to confirm diagnosis of B12 . I will now ask what was tested for. I have not been given a diagnosis though they do know about all my cousins and my direct family. I’m going to write letter over weekend with my questions and leave up on Monday and see what happens. Many thanks to you for your help. I’ll try to be non confrontational in letter but I could quite happily scream at the moment with the pins and needles and pain in my back.
The letter is a great idea and ask for it to be put on your medical record. I would address it to the Practise Manager -that way the whole team will have to address it. I say this because your GP sounds ignorant and frankly negiigent. He is also ignoring you. With your presentation and history he should be far more proactive!! Write a very factual letter to include your family history, your signs and symptoms AND also what you seek eg b12 injections every other day, referral to haemotologist and neurologist. Its important you get the injections asap to minimise any potential damage. State this.
Im afraid Ive long come to the conclusion that GPs are poor with chronic conditions so its important you become an expert patient that is you read up on b12 deficency or PA the symptoms and effective treatment. As well as the PA Society have a look at the B12d.org site -they have a detailed online assessment. I was quite shocked when I did it as it picked up on symptoms that I was experiencing that I did not realise were associated with b12 deficiency. Ive found it very useful. I also bought Dr Chandrys book -GP who felt it was being grossley under diagnosed.
Lastly you will have to be persistant but always polite. If you are refused more injections buy your own and self inject. Thats what I did until I got them on the nhs. I have daily jabs and have now had them for two years which my gp practise agreed to me self administering. If I lower frequency residual symptoms increase so I insist I need to continue. B12 vials and needles/stringes cost them very little. Its a cheap treatment. There is NO need to ration them!!
Im only allowed the injections because the neurologist recommended them. As for si Id been doing it for over 8 months, self funded, taught myself and GP practise preferred it cos it makes the cost of treatment pennies. The nurse had to ok my technique before theyd prescribe. costs are a central feature for GP practises as they are run as a business.......one of the reasons why they avoid prescriptions.
Your GP should try reading the guidelines which says no further testing of b12 should be done once on injections.......so he is wasting his practises money!! Like most he is very ignorant of b12 deficiancy. However they get nervous when you put matters in writing because of litigation. Sorry Im a cynic. I didnt arrive on si injections by coincidence - am afraid you have to fight for what you need these days......& be very polite but persistent.
I find it so hard to argue with him. I just end up feeling belittled and like someone who ‘spends too much time on the internet’. How did you manage to find a neuro who agreed with injecting every day and can we all have his name and contact details so he could support us?!
I didnt find him.......my GP referred me to him. I had to beg to get the b12 injections on the nhs as he argued I could buy them cheaper than the nhs could. Wasnt pleasant grovelling but focused on the outcome. He had an entourage of students with him so am guessing thats why he was soooooo arrogant! He didnt examine me apart from telling me to stand up to show the students my tremors. And in the end he said well all right like he was doing me a big favour!! Unbelievable but I smiled sweetly......feeling like Id sold my soul to the devil!! He even had the audacity to say other patients with tremors found b12 injections helped them & he would like to research it......like it was some big new discovery!!! Arggggh!!!
You just have to be polite but pig headed & persistant......dont let them get away with it. You are the one who carries the consequences of poor treatment not them......there in lies the problem!!
I’ve had a tremor in my thumb recently. It goes with enough b12.
In fact I read a study on ALS (MND) in Japan where they recommended daily injections. Honestly I dread to think how many diseases actually have a b12 component. I try and tell people but I think most think I’m very odd.
This can be overwhelming, but if I were you, I'd start by reading Sleepybunny's link to Symptoms of peripheral Neuropathy in her first response to you.
The reasons I say this are
1) - it has been compiled by the NHS, which means your GP might be more inclined to follow it or read it
2) - it is simply worded- helps a lot if you have cognitive/memory issues
3) - it lists many of your symptoms as neurological
This should help you to get a referral to a neurologist as soon as possible (long waiting-list already pre-covid, so will take a while) and onto the correct B12 frequency while waiting for the appointment. Nerves take a long time to repair, and nerve damage can become permanent if untreated/ undertreated.
Sadly, what Sleepybunny said about a general lack of knowledge/ interest in B12 deficiency within the medical profession is true. Don't allow yourself to believe you are either going mad or becoming a hypochondriac: many of us have been made to feel like this at early stages. The symptoms are very wide-ranging and can vary even in an individual, largely remaining unrecognised by GPs (or nurses) as belonging to a vitamin deficiency, and can lead to many years of misdiagnosis and endless disappointing consultant appointments in the belief that these must be an indication of "something more serious" going on.
Reading the information and research is the best and earliest chance for you to get what you need. It is there in black and white, and it can also help you to recognise yourself there.
Sick people should never have to make a case for the medical treatment and frequency advised for their particular condition, but for B12 deficiency it seems it is now the norm.
You have to be firm with your doctor you shouldn't have to suffer. I was on every 12 weeks. Symptoms where still around. Slight improvents so went back got it down to 10 weeks not as tired but could still feel at around 4 weeks things where not right went back said was in agony with my hands and muscles got it to 8 weeks so I between I self inject so it's realy every 4 weeks. Doctors said guidelines are every 8 which I struggled to improve on. But it is a slow process I'm improving now. But symptoms of nerve damage are still around
Hallo, if you have neuro symptoms you have to self inject 3 times a week. At the end of 2016 i was walking with a stick, pins and needles, great tiredness. My b12 was 50 pmol/l. It was peripheral neuropathy. Till now i have more than 700 self shots and i am much better and playing tennis on court. Be patient and believe in yourself and nature. Good luck !
dear oh dear where to start. right rehhydrate after visits in the bathroom. as it maybe a virosis, I wldn't even dare to suggest. Is the pain there ALL THE TIME or moving, walking.Plus a gender important if a woman"going through natural change" in life.I am NOT A DOC, NOT MEDICALLY TRAINED. generalizing much any neuro problems shld be addressed by high doses of vit b, vit b3, 6, 12...b12 injections rightly so at least for 2 weeks.NOT ENGLISH,don't know enough how it allworks here...who inject where and the injections.Perniciousanemia. My late husband suffered. He suffered from a reflux, he used to tsake daily maintensnce dose, ONLY THAT BLOCKS ANY VIT. B.how I know that, after 40 yrs of taking anta-acids had issues with his blood...so no idea if you personally have acid eflux, nor if you take a maintenanc dose, address that 1st. I tried to wean him off the meds, aloe vera drink, natural products-herbal remedies- didn't work for him anything. His bones, were affected. Missed parts of his lymphatic cleansing system, throat tonsiles, appendix, 2x a year blocked sinuses...GOOD LUCK! and ask for a 2nd, 3rd opinion.Quite a complex tosay straight.
Thanks. I’m going to ask for all my test results. It is so foreign to me no longer having faith in my GP. But I realise now that I need to look out for myself.
I lost nearly 20 years of my life when I couldn't be a proper mum or wife. I also learnt a hard life lesson and that was that sometimes the only person who is able to help you is yourself.
If you get the opportunity (if pandemic restrictions allow it) it can be useful to take a supportive person with you to appointments. It's my impression that GPs are kinder and more willing to listen if there's a witness. Even better if they've read about B12 deficiency.
Also helpful to have someone to ask questions on your behalf if you're struggling with brainfog.
Might be worth asking if you can record appointments. GPs and specialists are likely to be very reluctant to allow this.
You might be able to argue on disability grounds that you need to record appointments if you have memory issues/brainfog. It can be useful evidence of what doctors have agreed to do.
While some on this forum can manage by just taking oral tablets, the evidence that oral tablets are as good at treating B12 deficiency from absorption issues is of low quality.
I have tried in past to manage on oral tablets but it didn't work for me. For me only injections keep the symptoms at bay and I need injections far more often than suggested in UK guidelines.
Cherylclaire said "Don't allow yourself to believe you are either going mad or becoming a hypochondriac: many of us have been made to feel like this at early stages"
I'd like to echo that...I was diagnosed with hypochondria, psychosomatic symptoms, depression ..strange how the majority of symptoms improved or disappeared when I finally started treatment.....
Misdiagnosis of B12 deficiency as ME/CFS and other conditions
Thank you so much for all this invaluable information. I have found the support on here so so helpful. Thank you particularly for all the work you have put in giving me such fulsome replies. You have such great knowledge and it has empowered me to address my management.
I hope you will update the forum in how you get on and that GP will agree to give you injections more often.
Sometimes when people want to update their story it's best to start a new thread as replies on older threads sometimes get missed.
I hope that your relatives may also benefit from the info you now have and maybe you can pass info on to friends.
I suspect there are thousands, maybe even hundreds of thousands of people in UK suffering from undiagnosed B12 deficiency.
Many on this forum have suffered from ignorance about B12 deficiency among health professionals and they just want to make sure no-one else has to suffer in the way they have.
Hi there I have many of your symptoms and have been backwards and forwards to the gp for approx three years and was made to feel like a hypochondriac. Your post was like a light bulb moment for me and I will make another appointment and mention this.
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