Recently Diagnosed ‘low B12’ (165) after one year neurological symptoms (and probable 4 years of symptoms put down to old age by me pains/reflux/ tachycardia/weird feelings in arms etc). I was given 6 loading injections and 3monthly prescription(allowed to self inject re current situation). GP says I haven’t got PA as blood results ok, but suggests nothing else!
I have read previously on this blog that symptoms can get worse before getting better - my worse problem are constant feeling of inner tremors through body and neck ache/creaking particularly bad in the morning! So far no better after loading injections. I have now got my own B12 supplies and have Continued for the past few weeks with 2weekly injections.
I am thinking of asking GP for neurology referral but during present UK situation I can’t see this happening anytime soon.
Meanwhile should I continue self injecting and when could I hope to see some improvement. Is it possible that I have B12D without anemia! I have rather clung to B12D being my problem in light of no other diagnosis from medics over the past year except ‘Anxiety’
Thank you
Written by
CoolGilly
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Thank you I will continue with at least weekly injections ...and ask for Neuro OPA which I understand takes forever to get... thyroid results ok but I do have a small goitre! Folate ok. I am not vegetarian but have had 2 bowel operations for blockages. IFACTOR also ok but .... know this can be wrong!
"I am thinking of asking GP for neurology referral"
I suggest putting your request in a brief letter to GP and include a request that the letter is filed with your medical notes.
There is likely to be a huge backlog of referrals when restrictions are finally lifted so I feel the sooner the better to make the request and be prepared to chase it up with your GP surgery.
Be aware that B12 deficiency is not always well understood by neurologists so be well prepared for any future appointments.
I saw several neurologists and only one had some awareness of B12 deficiency despite me trying to discuss the possibility with the others.
In retrospect I was shocked by the level of ignorance, I had multiple typical symptoms of B12 deficiency.
"GP says I haven’t got PA as blood results ok, but suggests nothing else! "
Does your GP know that it is possible to still have PA even if diagnostic blood tests for PA are negative (called Antibody Negative PA)?
Stick this under their nose....
Flowchart from BSH Cobalamin and Folate Guidelines
Has GP asked you questions about your diet and considered other possibilities such as Coeliac disease, H Pylori infection, Crohns disease, fish tapeworm infection, exposure to nitrous oxide etc?
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
Thank you - I feel I am on the right track - I will request neurological OPA and wait! Meanwhile arm myself with loads research as you suggest. My tremor symptoms feel worse because of lockdown and hence focusing on them - when out on my daily walk I know they are there but I have other things to concentrate on which helps. I am weary of this lack of medical knowledge. My daughter is a GP too and also says 99% of PA is anaemia so I’ve given up mentioning anything more to her too as I’m fighting a dead horse!! I am not a veggie and love my dairy foods. But I hAve had two major small bowel operations for blockages and thought this may have started my possible non absorption problem. Meanwhile I think I will continue with at least weekly injections... thank you again I will look up all your links
"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 info in this book is a bit out of date. See BNF link up this page for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
More about neuro symptoms
When I read your posts again, I realised you mentioned tremors and weird feelings in arms. These sound like neurological symptoms (I am not medically trained).
If you have neuro symptoms and you are only on 12 weekly injections then there is a chance you are being under treated.
Lots more info in the detailed reply I linked to at bottom of one of my posts.
Thank you - I eat good diet plenty meat fish and fortified cereals ! I was tested few years ago for coeliac as I had reflux and nausea. You have given me so much info thank you - I will make a list. Think I definitely have Neuro problems .. but last year all was put down to ‘generalised Anxiety’
which I argued agAinst at the time and 1 took myself off the antidepressants I was given as they made me feel a lot worse. After that I more or less gave up as
I really believed the GP thought I was neurotic.
B12 injections have really helped my mood and I feel more positive and since joining this blog I feel I am much better informed to
Question GP. (One GP told me last year - not to go online as it would make me worse reading stuff not relevant!) . I live in hope !! Thanks again.
I had been ill and slowly deteriorating for many years. I felt very on my own battling the GPs etc . I realised that the only person who was going to help me was me.
I had been treated badly by both GPs and specialists including being shouted and snapped at. I was diagnosed with hypochondria, depression, psychosomatic symptoms, ME/CFS, Fibromyalgia ...all along I kept saying that there was an underlying physical reason for most if not all of my symptoms.
I was pushed down the mental health route and I kept saying the reason I was depressed was that the physical symptoms prevented me from living the life I wanted to and the doctors and specialists I saw said, "Your depression is causing your physical symptoms. "
I didn't want to lie in bed or collapse in an arm chair every day...I was desperate to get out of the house to go for a walk, to be able to work, to be a proper mother to my children.
I got hold of past blood test records and remembered I'd had B12 deficiency in past, only got one set of loading doses and had stupidly trusted the GPs when they stopped them.
I wrote down all my symptoms (there were over 40 including many neurological symptoms) and googled every one. In the end I narrowed down the list of possible conditions to three including B12 deficiency.
I had tests to exclude the other possibilities and was left with B12 deficiency. I then began a battle to have a trial of B12 injections. I told every doctor and specialist I saw that I suspected B12 deficiency, I discussed symptoms, passed on info/guidelines about B12 deficiency. My most recent B12 blood tests had all been well within normal range despite typical symptoms and my diet had B12 rich food in it. PA tests were negative.
I stayed with one practice for far too long and every request for B12 was turned down. They didn't like it when I pointed out I had been incorrectly treated for b12 deficiency in the past.
The relationship turned sour and they put pressure on me to leave.
With dementia type symptoms and spinal symptoms I decided my only option was to self treat. I did and it took months to see a difference. I guess this was because I'd had symptoms for over 15 years.
My close friends say they cannot believe how far I have come as they saw me at my very worst. I did eventually get some NHS treatment from a GP who actually listened.
I'd also like to think that Dr Google has helped me to help others. The only way I cope with the anger I still feel at what I went through is to use it constructively to help others.
Thank you for sharing your story. It is very sad really when GPs think we are hypochondriacs ! When all we are trying to express is that we know our bodies and know that something is just not right. . I kept saying ‘I just need the right button pushing as I’m sure it’s something simple’.
Of course now in these troubled time’s getting to see a doctor is near on impossible and I feel sorry for all those missing their vital treatments for cancer etc. Thank you for all the great info you share - it’s great knowing i am not alone in this battle and gives me confidence to continue self inject.
(Many people self inject and I expect do not go back to GP / so GPs don’t realise the extent of the problem!! )
Cheers for Google! And many thanks to you for passing your knowledge and experiences on.
How often do you inject ? B12 self treat and Di you take folic acid alongside there is so much debate ref the folic avid sone day 5mg some day you don’t need it some say small dose
My symptoms start to return with a few days of an injection. I also use sub-lingual B12 which helps a bit but is far less effective than injections for me.
I eat a folate rich diet and take a low dose folate supplement every day.
I am not medically trained but I thought that taking high dose folate supplement 5mg was only recommended for those with folate deficiency and only for a limited period of time.
See link about folate deficiency below and also section on folate deficiency in BSH Cobalamin and Folate Guidelines link.
Thank you for your story sleepybunny. I'm sorry your went through all that. Thank you for all your help and posts and links. You are helping everyone so much 🦋😊🦋
Hi CoolGilly, I am surprised that your daughter a Doctor, isn't more interested in your health!
I too have had a miriad of tests mostly irrelevant. I eventually had a b12 serum test after asking for it, and after I had been taking sublingual b12 for a while. Showed up as 176. 6 points into the normal range. I now SI every four days and all neurological symptoms stay away. My IBS is a memory, as is reflux, and numbness, weird electric like pains, joint pains. I have been SI b12 for two years now, and have my life back. Not seen my GP for over a year. Good luck for the future.
Thank you - how long did it take for your symptoms to disappear after you started to self inject?
My daughter is following GP usual line. But told me she had recently had similar patient to me who wanted to continue B12 loading injections. She wrote to Neurologist for advice - no reply yet. I try not to discuss health with daughter as she is busy working single mum - and now I’m not allowed near her anyway re lockdown! So she hasn’t the true extent of how bad I feel and how weird at times.
You give me hope though that with perseverance I can get through this as like you I just want my life back.
It took over a year to see decent results. I was SI every other day for many months, then tried weekly but due to symptoms had to go five or four days, now two years and two weeks since my first injection I feel better on four day interval. I did have a MRI about 15 months ago looking for ms as my walking was very spastic like at times they found a spinal stenosis at C6 c7 but I think I damaged my neck over 50 years ago. ATM I have 250mg naproxen a day and my b12 every four days. My walking is fine now. Still get the odd migraine. And still gluten intolerant. But never diagnosed with celiac's or PA or chrones or sarcoidosis or Lyme's or brucellosis or TB. I am a rhesus baby survivor though, having three blood transfusions before I was 1 day old.
I also have these tremors. Legs feet and most of body to be honest. For me it seems to come from my sacral region and spread up and down. It's a horrid feeling of inner shaking mixed with tingling.
I too had these symptoms for a year before I linked it with b12 which was diagnosed for me back in 2000 though I had been ill for decades before on and off.
I self inject daily now. Nothing to lose. Been doing this for a good three months. I felt worse at first then better for a while now worse again.
I was diagnosed with anxiety too. I am an anxious person and had been thro period of intense stress for a couple of years when the tremors started. GP says it's all generalised anxiety disorder. I also notice if I am upset or anxious about anything the tremors are worse.
I think I have had this problem for many years so it will take a long time. I read that neuro symptoms can take 6 to 24 months to improve.
Did you realise that the BNF states to GPs that if the patient has neurological symptoms b12 should be injected every other day till improvement stops?
I'd quite like improvement to start though.
I wish you well. Take care. And consider more frequent injections?
Thank you for replying and I’m sorry you too are going through this. Your symptoms sound very similar to mine re tremors! I mentioned NiCE guidelines to my GP who replied that As my haemoglobin blood results and IFactor were normal I hadn’t got anaemia. The guidelines were only for B12D Anaemia!! So we are bashing heads against brick wall!
I am trying to get together relevant leaflets from PA Society to send to my GP- but not sure if this will go down well!! I did pay to see Neurologist (before I had B12 result from a GP whilst on holiday and before I had even heard of B12) and he told me my very bad tinnitus (which started the tremors) had probably crossed my sensory pathways (basically and they needed time to heal do nothing - £200 please!!
I have read on this blog that it takes a long time for Neuro symptoms to get better - so hopefully we just have to be patient. Best wishes to you
"I am trying to get together relevant leaflets from PA Society to send to my GP- but not sure if this will go down well!!"
Perhaps you could include extracts from the PAS leaflets as well as extracts from UK B12 documents/articles directly into a letter to GP. This should ensure that the info gets read and gets filed with your medical notes.
In UK, my understanding is that letters to GP are supposed to be filed with medical notes whereas they don't have to file leaflets....
It's so frustrating isn't it. GPs dont seem to understand that even if your serum b12 is normal you can have symptoms caused by the lack of it because it is not bio available.
It's all the links that sleepybunny carefully sets out and on the PA Society resources but they dobt seem to want to hear it. Its extra frustrating too when you consider how cheap a treatment b12 is when good work could be done so easily and so many of us are happy to SI.
I find I can't face the fallout from the GP so am just doing it myself covertly so to speak.
Like you I find my tremors are easier to dismiss when I am walking so off now for a turn around the village! Trouble is I have a prolapse too which gets worse when I walk so it's a double edged sword .
Hallo Nathan12345 - I feel well but the ‘tremors’are still with me! I stopped jabs for 3weeks and tremors were much worse so I am back on SI. Thankfully taking B12 is safe! GP still not interested in tremors -1 asked for 2nd opinion Neuro and told I didn’t really fall within the guidelines but told I could go again privately!! My symptoms were classed as Anxiety last year !!! I am still hopeful that I just need to be patient!
It looks promising that it is a b12 deficiency if si has helped the tremors from what i learnt it can take quite a while to correct. I felt 100% after 6 months of high supplements. Do you take sublinguals in between si?
Is yr problem tremors? Neurological. Yes I had thought of trying sub lings or could up SI - which I currently do weekly! It’s difficult isn’t it - I just wish that you could work with doctors on this ...
It is hard to get advice from drs. My hands shake but not a huge amount. Years ago when i had a bad deficiency i had hand tremors so i know the signs of when my levels are getting low again now.
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