I have been unwell for around 5 weeks now, although looking back I've probably been unwell for longer but putting symptoms down to everyday life, being tired ect. I started to feel unwell before Christmas this year, thought I had a virus, until I started to her episodes of shortness of breath, air hunger and palpitations. These would last 10 minutes at a time and resolved initially. These then turned into constant shortness of breath, palpitations, severe chest pain, fatigue, arm heaviness, nausea, dizziness and just feeling really unwell. Attended a&e they initially thought I had a clot, cleared of this and sent home with ?inflammation of heart due to ?viral illness and was booked for an outpatient echo, as t wave inversion present on ecg. I found this frustrating as I had no viral symptoms and no answers but went home anyway.
Over a couple of days I felt in less pain and like symtoms were manageable but not for long. Returned to my gp 5 days after admission unable to function with shortness of breath and severe chest pain, she sent me straight to hospital with ectopic beats and ? Undiagnosed lvh. I have since attended for my echo and the lady doing my scan said she couldn't see anything of concern, although I needed to wait for the full report, which I was reassured by. No signs of lvh or heart inflammation seen.
Was asked at hospital why I was back, as I was there the week before with the same symptoms and was told they were sending me home. I had to basically demand blood tests to which the Dr agreed and wanted then to run some other vitamin tests including b12. I already know I am vit d deficient and take spray supplement for this. B12 came back at 16, deficient was classed as 25 but should be 58-128 on normal ranges. The Dr said " I don't know how you're functioning it is extremely low" and advised loaded doses at gp.
I had every other day doses for 2 weeks. My chest pain and palpitations resolved by about the 3rd does, appetite returned and nausea subsided. my head just felt so much clearer and I was in shock that all this seemed to be stemming from b12 deficiency, as cleared of heart problem.
At my 6th appointment I was still suffering with heavy arms, fatigue ++ and occassional periods of shortness of breath. I was told by the nurse I would attend in April for a blood test to check levels and have a blood test to confirm if I have an absorption problem or diet related, I am doubtful its diet as I eat everything that was on the list on a daily basis.
I am now 5 days post last injection and its been rough, which I expected as I know its alot for my body to take and process. I have been happy just rolling with it but today my palpitations and chest heaviness has returned and I am just feeling so stressed and fed up. I can cope with everything apart from the chest pain and palpitations. Just wondered if anyone else had experienced symptoms resolving but then returning in such a short space of time?
I have looked on the nice guidelines which imply if symptoms such as limb weakness are still present to consider continuing injections until this symptoms have gone? Wondering how long I should give it until going back to the gp as I still have arm heaviness or weakness and some pins and needles have started in my arms and feet.
The thought of having to get to April feeling like this is just so so worrying. I'm a mom to a 5 year old, work fulltime and I am getting married this year! I havent been back to work as I'm so unwell.
Any help/ reassurance or guidance would be much appreciated.
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Hgsn
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Some UK forum members struggle to find a doctor who understands PA and B12 deficiency and some struggle to get adequate treatment. Fingers crossed that you'll be lucky.
"I am now 5 days post last injection and its been rough"
Has GP checked your potassium levels?
Some people can experience a drop in potassium levels when B12 treatment starts.
Forum members often report deficiencies in folate, iron and Vit D as well as B12.
Have these been tested recently?
Have you had Full Blood Count (FBC) tests?
Have you had thyroid tests recently?
Many on here also report thyroid problems.
In UK, GPs often only test TSH but there are other thyroid tests that they or a specialist can order.
Might be worth asking questions about thyroid on Thyroid UK forum on HU.
"B12 came back at 16, deficient was classed as 25 but should be 58-128 on normal ranges."
Was it an Active B12 test you had?
The range 58 - 128 looks like an Active B12 test (also called holotranscobalamin test).
Doctors in UK often use the Serum (Total) B12 test.
If it's not diet related, I'd expect your GPs to at least test you for PA (Pernicious Anaemia) and Coeliac disease. These are two autoimmune conditions that can lead to B12 deficiency.
Might be worth writing out a list of all food and drink for a week to show GP.
Have you considered joining PAS (Pernicious Anaemia Society)?
I left some very detailed replies on these forum threads eg links to help those struggling to get adequate treatment, suggestions of documents/books to read, websites to look at.
Might be best to read a bit every day over a week or two as I post a lot of information.
Some links may have details that could be upsetting to read so you may want to read through it with a supportive friend or family member.
Sorry I realised I only replied to half. Yeah I had lots of bloods tested along with thyroid and I already know by vit d is low and I am taking daily high strength. There was nothing else at all highlighted as abnormal on my bloods, I also looked at these with the nurse at the gp who did my first jab and she said I don't currently need to take any other supplements and she had no other concerns. My potassium was also fine even at the time when my chest pain and palpitations were the worst but i have not had these checked since treatmenf started. I also had a whole host of cardiac bloods that ruled out anything with my heart.
You have probably been deficient for years and you cannot repair and heal overnight. A story I often tell in the forum is about my rescue donkeys. They were really malnourished and very thin when I got them but you cannot give them a backlog of food in one meal - the body can’t cope.
It took a year to get them able to eat the quantity of food they need - recovering from b12 deficiency is no different. I set myself a 3 year recovery period as I had been deficient for 20 years as my B12 was very low like yours. I needed every other day injections for the first three months and I felt dreadful.
Good news is I am in year 3 and I am heading for how I was probably in my early 40s even though I am in my 60s. I needed more frequent injections to keep active but everyone finds the level that works for them.
You will find lots of help and support in this group. I hope you feel better soon.
I am glad your road to recovery is well under way. Thank you for sharing your experience and it does make sense its not going to be fixed quickly when its been so low. I am contact my gp today to hopefully get some more injections in place 🤞🏼
I think you should have already been tested for PA and Coeliac disease, might be worth pushing for these tests now.
Please think about talking to PAS (Pernicious Anaemia Society) if you can before next contact with GP. You would need to be a PAS member to use PAS members' helpline.
I think non members can attend a few support group meetings before joining PAS but check with PAS and support group co-ordinators. Most of the support groups meet online so probably doesn't matter where you are in UK. They can be good places to ask questions and swap info.
" am contact my gp today to hopefully get some more injections in place"
If you have time, might be worth searching for these documents before you speak to GP
1) "BNF hydroxycobalamin"
Look in Indications and Doses section to find treatment pattern for those with neuro symptoms.
BNF stands for British National Formulary. Your GP will have a BNF book. They can look up Chapter 9 Section 1.2 to find the appropriate info.
2) "NICE CKS Anaemia - B12 and Folate deficiency"
This was updated in 2024.
CKS stands for clinical knowledge summary.
See section on Management which outlines treatment patterns.
3) NICE guideline B12 deficiency - published 2024.
I have concerns over this document, too much emphasis on treating with oral B12 as an alternative to injections in my personal opinion. There are some good bits though.
4) Try to find local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England. Health Board in Wales/Scotland. Your GP is likely to use these. Some local guidelines will differ from NICE/BNF advice.
If you can't find them online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
You can also submit FOI requests to GP surgery but this could irritate them.
Letters
Might be worth putting your request into a short letter...I think these are harder for GPs to ignore. Always keep a copy for yourself. A paper trail can be useful if there is a need for a formal complaint in future.
Link about writing letter to GP about B12 deficiency.
Yes they have just put me on the 'normal' treatment pathway. I did express my concerns around this to the last nurse who administered my jab but she was very dismissive " we will see you in 3 months time, not before" I was happy to go with it and just see how I went. My gp have contacted me back this morning after a request in writing from myself, discussing my concerns alongside the NICE guidelines and I have received a message to say they're happy to book 3 more doses and then have a review with a Dr for a longer term plan which I am happy with for now. Hopefully they will work with me, not against me and I suppose the nurses are working from advice given by a gp within the surgery. I have given a list of my full symptoms and at each injection with the nurse I'd discussed what was getting better and which symptoms I still had or any new ones appearing.
I will definitely use the information you have provided if they become resistant.
Good news re three more doses. Given the return of symptoms after four days it would seem possible that you may need ongoing injections at a frequency which is less than three monthly. Hopefully the GP will agree to this.Whatever the outcome there is huge amounts of information on this site about how to manage b12 deficiency.
"I will definitely use the information you have provided if they become resistant."
You mention dizziness. Dizziness would usually be considered as neurological.
Do you have any other neuro symptoms eg
tingling
pins and needles
insect crawling sensation (formication)
electric shock sensations
numbness
eyelid flickering
twitching muscles
involuntary movements
migraine
tinnitus
clumsiness
dropping things
bumping into things
struggling to get the right word out (nominal aphasia)
memory problems
problems with proprioception
Proprioception is awareness of where the body is in space.
If your balance is worse when your eyes are closed, it's dark or your view of surroundings is blocked then that's suggestive of possible proprioception problems.
For example, I used to fall off the pavement or lose balance if someone walked directly towards me and blocked my view ahead.
See links to symptoms lists for other neuro symptoms.
If yes to having other neuro symptoms then good to give GP a full list.
I'm pleased that GP is giving you 3 more B12 injections and you'll have a review after this.
I would have expected GP to have put you on BNF recommended pattern for those with neuro symptoms which is
a B12 loading injection every other day for as long as symptoms continue to improve, followed by maintenance injections every 2 months.
There is no set time limit in BNF as to how long every other day loading injections can continue for. Could be weeks even months of them. If symptoms continue to get better then the every day loading injections should continue.
GP can find this info in their BNF book Chapter 9 Section 1.2 or in online BNF.
If you feel your treatment is not adequate, it may be worth pointing out to GP that inadequate treatment increases the risk of developing permanent neurological damage. In severe cases the spinal cord can be affected.
My personal feeling is that putting queries into letters is more effective.
PAS (Pernicious Anaemia Society) have a leaflet on SACD, sub acute combined degeneration of the spinal cord that might be worth passing to GP.
Can be helpful to keep a daily or weekly symptoms diary.
Maybe track up to ten symptoms and score severity daily or weekly.
Note date and amount of any treatment given. Note any relevant blood test results. Note appts with GP.
This could provide useful evidence of deterioration or improvement in symptoms to show GP or a specialist.
If your symptoms return or get worse before next injection or new symptoms appear then that might mean you need them more often.
Forum members often report that their symptoms get worse when B12 treatment starts before starting to get better.
Forum members who can't get the treatment they need from NHS sometimes turn to treating themselves.
Some get extra b12 injections from privately, some try taking high dose oral B12 ( 1000 mcg or higher) but this doesn't work for some and as a last resort some turn to self injection (SI).
Tracey Witty of B12info.com has been campaigning to get injectable B12 available over the counter from UK pharmacies for the last decade.
I have always has weakness in my arms since before starting treatment and since last loading dose I have started getting some tingling in my hands with this. I have also started to get heavy/weak legs and almost like sciatic back pain running down my legs which then started pins and needles in the heels of both feet, which is new for me. They have also twitched or felt crampy at times. 'Proprioception is awareness of where the body is in space.'
I have suffered with this for a few months and noticed it most when I've been stood in the shower and almost toppling over on a few occasions.
I think looking back over the last 6 months I've had lots of little things happening which I've just got on with, looking back now I wish I'd have done something sooner but I just put things down to being busy, tired and just life really.
B12 deficiency usually develops slowly over a long period of time ( can also develop quickly).
I put my problems down to being a busy mum and stress at work and getting older until it got bad enough for me to realise that something was very wrong.
You mention several symptoms that would be usually considered as neurological eg
tingling
weakness in arms/legs
back pain
pins and needles
twitching
proprioception problems
Please think about giving GP a list of all symptoms soon - including all neuro symptoms and definitely include any that affect your spinal area. Take a copy with you to appointment.
I used PAS list and added extra symptoms at bottom.
strange behaviour eg I put car keys in the fridge and boiled the kettle without putting any water in it
I'm aware that it's easy to become overloaded with info.
At the same time there's a lot of ignorance about B12 deficiency among health professionals and I found I needed to learn a lot to be able to argue my case to get treatment.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org has some interesting online talks on B12 topics
I have kept this list of symptoms and worked off this to see what improved, stayed the same and things that have come I have added to the list. When I have gone for loading doses with nurses they will ask about symptoms but nothing is ever recorded. So when I see a Dr for a proper review I will make sure they have the list.
I have also kept a diary of how I am day to day since my last loading dose because I feel it becomes hard to remember as time passes. I've had 2/3 days weeks of loading doses that I've felt great but it quickly wears down and the neuro symptoms haven't resolved or new ones have started.
How are you recovering now? How long ago did it start for you?
My issues became noticeable when I was in my thirties, I'm a lot older now.
When treatment finally started ( I had had symptoms for at least 15 years) it took several weeks even months to start to see improvement, I think this was because I had been left so long without treatment.
I improved for at least 8 years running after treatment started.
I need far more B12 than NHS will give me and seem to need more now I've gone through menopause.
Would you like me to post any more info that I think might be useful?
I learnt a lot when I first joined the forum by reading other people's threads.
GPs sometimes find it hard to cope with assertive patients who ask questions and challenge them. Be prepared for GP/patient relationship to come under strain although I obviously hope that this won't happen in your case.
I am going through the same as you at the moment, I darent sleep as there’s allways a point where I wake up with palpitations, I’m doing yoga and various other exercise to try to stop it and find if I drink everytime I wake up it seems to pass, I’m in the process of ecg and blood tests, I have had pernicious aneamia for at leat 25 years now and never experienced this before, my thyroid is up and down as well, I noticed the weakness about 6 months ago but Thankyou God. that seems to have subsided ,I have nothing during the day ,I keep putting it down to stress and have had reiki treatments and allsorts, I’m just waiting for results from blood tests,I have just started taking a tonic called Floridix which contains lots of different vitamins and hope that works, I exercise regularly and dog walk and swim and am not overweight and fit, but I understand you, it’s very frustrating and scary,
Sorry you're going through this. It is so worrying. Even now I've had cardiac bloods and an echo I'm still stressed everytime it happens. I found drinking a really cold drink does help sometimes too. I hope things improve for you soon. I know I had my b12 tested in 2021 and this was fine then, I feel the symptoms have all crept in slowly and I've just got on with it until the serious symtoms have kicked in and hit me all at once. I had it tested in 2021 as I had a sudden onset of double vision, eye and face droop and weakness in my arms. Was under neuro and opthalmology so around 2 years, no known cause found and I just recovered the best I could. Now it makes me think was this all just waiting in the pipeline from then 😣
Keep on loading! It sounds like your body really needs the B12. You need to keep loading until the symptoms are gone. Then experiment to find a schedule that keeps them away. My symptoms come back in 3 weeks so I get my husband to inject B12 once per week. Everyone is different. Some people seem to need them every day or even more often for maintenance. Others can space them out more. Your level was so low!
Thank you for your reply. I definitely feel worried by thinning I'll be expected to wait the 3 months! So glad my gp has said they want to do 3 more doses and then a review with a Dr, which I feel like should have happened anyway. My gp surgery are pretty good so just hoping they work with me. I just want to be better so I cam do what I need to for my family and get back to work. The days have been long, hard and full of stress! I'm going to be getting married in August so need to do all I can to get my recovery under good way for then.
My symptoms started returning about a week after the last loading dose. I went downhill from there and by week three I was worse than before I started. Doctor put me on "every other day" and that was the start of my recovery.
Do everything in your power (I know this is hard because you are at you lowest, that's the curse of PA) to get EOD at the very least. That will give you breathing space to find what frequency and dose suits you best.
Thank you for your reply. I hope you're feeling much better now you're on eod injections. Hoping my gp is willing to listen and do what's needed instead of following a guideline. How long have you been on eod now?
I am actually injecting every day now. I tried eod for six months (even tried to spread it out to every third day. without success) but eventually settled on every day.
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Loading doses 
Symptoms returning
LOADING DOSES
Getting symptoms but not technically deficient in B12
Loading doses b12
