I've never posted on a forum in my life, so here goes.
I'm 54 and live in the UK. I developed symptoms of weakness in my legs at the end of July 2019 at the same time as catching a cold. A couple of weeks later my arms started to feel weak with tingling in my hands and about a week after that I developed tingling and burning pain in my feet and my lower back. I had no idea what was going on. Eventually saw my excellent GP and had bloods done, which showed a B12 of 160. Everything else was normal, even my thyroid test (hypothyroidism for 8 years). As I wasn't anaemic my GP didn't want to treat the low B12 as the local algorithm stated repeat test in 2 months, which I wasn't happy about. I continued to deteriorate and two days later treatment was started when she realised how ill I was and that I was effectively housebound.
I've now been on alternate day hydroxocobalamin injections for more than 4 weeks. I do feel better than I did and thought things were going in the right direction at the 3 week mark, but in the last week I've had a lot of neurological symptoms (burning, tingling particularly) and muscle weakness (I call it jelly, lead weight arms and legs). I thought because I seemed to be responding to treatment that improvement would be progressive and sustained. I don't feel as relatively well now as I did a week ago and I just wondered if this is normal? I'm feeling really low and frankly depressed at having this condition and am beginning to wonder if I'm ever going to get back to 'normal' levels of activity or if I'm actually ever going to feel well again. Also being like this is not good for domestic harmony.
IFA is negative and I've to have a blood test for Gastric Parietal Cell Antibodies to try to establish if the B12 deficiency is auto-immune. Although I'm not vegetarian or vegan I have had a relatively low animal product diet for years and I was on a PPI for 8 years following stomach problems, but stopped that end 2018. So, I may be B12 deficient due to this or there may be an auto-immune component too, especially as I have thyroid disease, which is assumed to be an auto-immune condition.
I'm due to see a neurologist the week before Christmas - this was an urgent referral. I was told to be seen around 3 months after referral was 'good going' for urgent!
I'm continuing with the injections at present, but I'm really struggling as I find them painful and unpleasant and more frequent than I'd like, but I'm terrified of stopping them in case I make myself worse. I'm horrified to read that some people inject alternate days or daily for months or years. I don't think I can face this and am wondering if anyone has had any success with a B12 spray or has any other suggestions?
Sorry for the long post, but I'm just about at my wits end...!
Thanks in advance for any comments, information or guidance anyone can give.
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Embra-girl
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You have done well. Both in posting here as well as getting a good level of treatment.
When starting B12 injections, many people seem to get worse before getting better and this is due to metabolism using up everything available once the cells get B12 after being so deficient. You need to be supplementing with folic acid and a daily multivitamin for the minerals and metals.
Some people also develop an intolerance to gluten and dairy in their diet. I’m one of those people.
Repair of neurological damage is extremely slow so you really need to keep track of the severity of each symptom in a logbook on a daily basis. For me it was like a roller coaster ride of highs and lows.
Your monitoring over months and even years and not days and weeks. So stick with a regime for several months to see if they slowly improve.
There are others on this forum who can provide lots more information than I can.
Remind your GP that further blood tests will be unnecessary as they will be off the top of the normal range and should be to repair nerve damage. The GP will be tempted to reduce or withdraw injections but this action just resets into to continuation of neurological damage.
Log your food, meds and symptoms in your logbook and see if there is a correlation possibly delayed by 3 to 48 hours between food and a symptom or from a medication and a symptom.
Thanks so much for your reply. It's really helpful to know that symptoms, and how the improve, can be up and down despite being on the right treatment. Logging my symptoms seems like a good idea. I'm lucky that I have a fantastic GP who is open to information sharing and supporting me in terms of treatment, so hopefully I'll get there in the end!
Hello. I became deficient in October last year. My serum blood test was 106 and I also tested negative for PA . Theses tests are not very reliable. I eat a mixed diet including meat. I've read that it is quite common to absorb less b12 around the menopause as you produce less stomach acid. Stess deplete it too. Also PPISand a host of other things.
Keep going with you to b12 injections until no further improvement.
I was worse before better and remember lead legs stuck to the floor or jelly legs. Balance probkrms ect .
It's not a quick fix as we are led to believe by the Gp or nurse.
You were fortunate to recieve propt treatment.
I was referred to a neurologist who frankly didn't add much. Did have a brain MRI. I did have a fall .
Keep a diary of your symptoms .
Have regular blood tests to make sure folate vit D magnesium and perhaos pottassium levekls are okay. I had my ferritin levels akso checked and for some reason on treatment dropped so taking iron prescribed.
You do not need your b12 levels testing once on injections.
I'm 58 and I think it takes time for our bodies to repair.
This forum is a good support.
I hope your symptoms settle a bit soon
Try and I know how hard it is to go with the flow. On the domestic front things will change as you have to do less to manage and heal
Thanks so much for your reply. I hear what your saying about the menopause - it's a total pain itself without being B12 deficient!
I know how lucky I've been to receive prompt treatment, but thinking back I've probably been bumping along the bottom for a while, having 'odd' intermittent symptoms, but writing them off as menopause of just middle ageing. I do feel like I'm on a rollercoaster and I've just been finding it difficult to cope. Luckily I've found this forum with all you lovely people!
Yes I put my symptoms dowe to the menopause and high levels if stess . Fell over quite a few times even had my iron levrks checked. 3 opportunities missed athe least ti check b12 levekls.
When I'm uo to it an writing to mp ti raise more awareness . If I'd had my level tested or it was even on the blood form to tick I would not only would have been less ill but saved the NHS. ALOT of money. Also saved my pocket too. I've paid out alot too in taxis private consults and loss of earnings . Now 3 years short on contributions for full state pension!!
Sorry gone off on a tagent
Yes your leceks were probably going down gradually and we end up putting upeople with too much.
Hope you pick up a bit soon and all the injections doing there work.
There's not much I can add to the brilliant replies you've had so far, only to say that you do get used to the jabs. I've been doing my own daily jabs for over 4 years and that way I can buy my own needles and use smaller ones which are a lot more comfortable.
I went through a stage of dreading doing them as they seemed to hurt for a while but eventually things started to get better and I was keen to do my next one to see what improvements it would give me that day.
A broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and maybe iron and vitamin D, ideally from your diet, will help.
Thanks so much for your reply. Have you been doing jabs for 4 years because your neurological symptoms haven't resolved or do you just feel better if you do? I'm not too bad with the needle, there just seems to be something about the solution that stings and the more injections I have the worse it seems to be. I'm really starting to dread them and I've only done 4 weeks!
I've only got as far as 3pm on a day when I've forgotten to do my jab before I "crash" with all the symptoms returning - and it's not psychological because, as I thought I'd done my jab and only discovered later that I'd got distracted and hadn't done it.
I can remember my leg stinging but it never seems to now. Sometimes I could feel it for quite a while and curiously more the next day once I'd done my next jab. Someone else has since reported the same thing but this phenomenon stopped after a while.
I also had the heavy lead legs but this was after treatment started, also watch the iron because i too like Nackapan found mine depleted after b12 injections
"but in the last week I've had a lot of neurological symptoms (burning, tingling particularly) and muscle weakness (I call it jelly, lead weight arms and legs)"
Has GP checked your levels of potassium?
Some people experience a drop in potassium levels (hypokalaemia) when treatment starts.
See BNF link below.
I've assumed you're in UK. Below are links to UK guidelines on treatment/diagnosis of B12 deficiency including PA (Pernicious Anaemia).
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"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 (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Also plan to read "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
You mention tests for PA. There are many other possible causes of B12 deficiency.
Has GP tested for Coeliac disease?
Guidelines link below indicate that anyone with unexplained b12, folate or iron deficiency should be tested for Coeliac.
Make sure GP orders both recommended tests.
1) tTG IgA
2) Total IgA
People with IgA deficiency will need alternative tests for Coeliac.
Patients with suspected Coeliac are usually told to eat plenty of gluten in more than one meal per day for several weeks before testing. This is to ensure that there are plenty of antibodies to gluten in the blood in Coeliac patients.
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
"IFA is negative and I've to have a blood test for Gastric Parietal Cell Antibodies to try to establish if the B12 deficiency is auto-immune"
Your GP may not know that it is possible to have Antibody Negative PA (where IFA result is negative but patient has PA). See BSH flowchart link (up page).
PAS should be able to tell you more about Antibody Negative PA.
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) 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.
Thanks so much for your reply and all the useful links.
My GP has been great at identifying the deficiency and getting treatment started. Speaking generally, however, I don't think there's a huge amount of awareness in the general medical community about B12 deficiency, it's various manifestations, how to further investigate and how to best manage the problem for the individual. I am having a further blood tests for gastric parietal cell antibodies, but after that I don't know what else should be done.
I have joined the PAS, but, to be honest after watching a bit of one video and reading some items I was left feeling even more anxious, upset and terrified of the condition and what may happen. I haven't looked at anything else and have just been feeling increasingly hopeless and low, as if my life is effectively over. I'll just need to keep going. Thanks for the support.
Oh please don't worry like that - there's honestly no need. Yes, life with B12d is a bit different and you do always have to manage your health but you have to for lots of conditions and this is similar.
I know there's more I'd like to do but I'm self employed and now am doing more and more of what I used to - running a farm with cattle - which I show, a vineyard and orchard - where I've just started doing my tours and tastings again - and selling our produce directly to our customers. And I do some cleaning jobs, including a couple of commercial ones (one in a top end engineering firm and the other a 50 bed place to stay) and run my house and a horse and I manage a flat and beach hut I own and rent out and I have a bit of a social life too! Oh and help my 80 year old Aunt... And, and...
Yes, its hard work and I often come back to sleep for an hour during the day but I cook my meals from whole ingredients with odd tins on off days and mostly can manage.
When I was at my worst I could barely walk or talk and had to sleep for nearly 20 hours a day.
With enough B12 and supporting supplements you will feel a lot better!
You sound superhuman!! I feel tired just reading about everything you do! Hearing about your experience though does give me hope that things will improve for me too, even if it takes a while. Thanks again...
Oh my goodness. You made me feel exhausted just reading your post. Well done. I was happy I managed to walk my dog this morning! But you're giving me hope. I might even tackle some work... But then again.... maybe a nap first
Out of interest, are you doing the jabs or the surgery? I have a yearly prescription, which I keep at room temp and take with me to the surgery every 3 months. Just before the jab, I put the little capsule in my bra to keep at body temp, so the sting is not as painful when being injected.
I was having the jabs every 2 months but now every 3. I was also on folic acid and supplements for iron anaemia as well as pernicious anaemia. I am no longer iron anaemic but personally feel that I should be on the jabs every 2 months, but my GP says no That burning sensation is horrible. I occasionally get the twitches too.
I have had medication for under active thyroid all my life, but B12 deficiency for many years, certainly over 15. Have you been checked for vitamin D deficiency?
I now follow a gluten free and wheat free regime, as I am very sensitive to the gluten but negative results when checked??? I think it does make a big difference.
I was told that with B12 deficiency, we have low stomach acid so certain foods we do not digest properly. But I do not suffer with reflux.
When my dad was diagnosed with B12 deficiency late in life, he was on jabs very frequently for a long time and then they gradually got less and less, until they were every 3 months, which seems to be the most common interlude.
I think the muscle weakness and the fatique is horrendous, people never realise what it is like until it happens to them. It does affect mobility. My mobility to a degree has diminished quite a bit over the years, but there are other complications in my case.
Hope you can get some answers from the Neurologist. But I would ask your GP about the iron anaemia and folic acid side, you might need a supplement.
Thanks so much for your reply. And thanks for saying how horrendous the muscle weakness feels. I'm just being told 'there's no detectable weakness on examination', so others just don't seem to understand that your arms and legs don't feel like your own. All I know is that 3 months ago I was living normally day to day and going to the gym 3 times a week and now that's just impossible. I forgot to mention the horrendous fatigue in my original post too, which has almost been at flu level at it's worst, and I know as I've had flat on your back flu.
I'm injecting at home and I always take the ampoule out to warm up for at least an hour beforehand. It's not so much the needle, it's the injecting of the solution I find uncomfortable at least and sometimes downright painful. If it was only once or twice a week I think I could cope better, but alternate days for who knows how long is just too awful to think about. That's why I'm wondering about sprays.
I'm not sure what the Neurologist will be able to add, so I'll just need to wait and see.
You take care of yourself and you are right, no one understands until it happens. I sometimes feel I have lead weights on my arms and legs. The jabs are like tetanus jabs to me. But I have got used to them over the years. lets hope that it won't be so frequent in the coming weeks and months. When are you due for your next blood test review?
Thanks Sleepybunny. I always make a point of getting a copy of my blood results, just so I can keep things clear in my own mind. I've joined the PAS and have found out there's a support group relatively locally. Will see how my blood tests go today...
Hello, sorry to hear you are feeling so bad, hopefully things will improve. there's lots of useful advice from others more experienced than me in the replies. However on your point about domestic harmony, one idea is to write down how you feel and give it to people who are less than sympathetic. It can be very difficult with a disease that is "invisible" and I've lost count of the time people just said to me "oh just eat a piece of liver" when I've mentioned the words pernicious anaemia. The book mentioned in one of the replies What you Need to Know about Pernicious Anaemia by Martyn Hooper has an excellent list of symptoms in the appendix, I wrote this list out with an explanation of how each one affected me. My close family got a shock when I explained that, with the brain fog, them laughing at me when I forgot words or got confused or jumped in to finish sentences made me feel tearful and depressed. Although they occasionally forget they are much more sympathetic and when they are not I just say "now where's that list...."
Thanks so much for your reply, and for touching on how much it affects relationships at home and in general. You have made me laugh!!
You are so right that others can just seem to think 'it's just a vitamin' and things can't be that bad. Apart from the physical consequences of the condition I've spent the last 2 months since diagnosis feeling terrified and depressed that I may not get better and that life as I know it is effectively over at 54. This is whilst trying to continue as normal and to juggle all life's balls as before.
I think I'll follow your example and write down a list of symptoms and how they impact me, so I can produce it anytime, anywhere. In fact, reading about symptoms has explained a lot to me about how I've been feeling and things I'd just put down to menopause and general middle ageing. As I've said to my husband more than once recently, 'I told you I was ill...!'
Hi 😊 Sorry you've been having such a rough time, but take heart from the fact that it's a familiar story for everyone here, and I don't really have much to add to their excellent advice.
I 'm 55, living in the Aberdeen area, and although I don't feel I've totally recouped the excellent health I formerly enjoyed, I do feel I've got my life back !
It took the best part of a year, because, like you, I suspect my health had been slowly, imperceptibly declining for a considerable time.
I self inject weekly, and yes, the hydroxocobalamin does sting, but it's transient, and I 've got used to it.
I feel that even just knowing that the stinging is normal helps me relax about the whole process, that in turn relaxes the muscle, which also helps.
Practice makes perfect and I'm sure it will become second nature to you too. 😀
Stick with your GP. Medical professionals who know about B12 deficiency, the severity of the wide-ranging symptoms and how to treat it -they are very rare.
Intrinsic factor antibody test (Ifab ) can give false negatives- correct only 40-60% of the time. A positive is 95% reliable though, so a second test might be worth doing (or even third). This will give you a Pernicious Anaemia diagnosis - which should ensure you get lifelong injections to manage symptoms as there is currently no cure.
Have your methylmalonic acid (MMA) or homocysteine levels been checked ? These can be raised if B12 levels low, and can be a good second indicator if needed.
Yes, 3 months to see a neurologist is fast, sadly. At least this means your symptoms are being taken seriously. Brain MRI scan can help if you are worried about cognitive or memory problems: I was convinced this would show some abnormality and it didn't. Better to know or rule it out though. Electric nerve testing for main nerves to arms and legs can be useful to rule out (or in) damage. Spine damage to nerves can also be checked by MRI if physical and visual checks and tests by neurologist show a reason to do so. Mine didn't.
If caught early, myelin sheath damage can be repaired by B12 injections, damaged nerves can repair, but don't hold on till neuro appointment if these symptoms worsen- go back to your GP who will recognise any deterioration.
In the meantime, you can list your symptoms and keep a daily record chart showing:
frequency and severity of your symptoms
when you have injections
- this might give you and GP and consultants a clearer picture of how injections impact on your wellbeing and when that impact tails off. It certainly helps at appointments if you have poor memory .
As for injections, here are a few reasons why injection might sting or be difficult:
Relax: hard at first to relax muscles fully when anxious and new to it.
B12 liquid can be quite thick when chilled (most people seem to store it in fridge) and ampoule needs slight warming up for a minute first to make it easier and less painful. Put it in a pocket or your bra.
Antiseptic wipe needs a good few minutes to dry. Otherwise can sting.
A drop of B12 resting on the tip of the needle can make injection sting - flick needle to get rid of it first.
Push the plunger slowly and smoothly down the syringe when injecting the fluid. Too fast can be painful.
I was hopeless at it when I first started, really wasn't sure how to do it. The better you feel, the easier it seems to be.
B12 sprays do not seem to do anything for me, but some people here use sprays and sublingual lozenges between injections effectively. Be aware that any B12 might skew test results - check online to see what the recommended optimum gap is for upcoming tests.
Of course, checking for serum B12 levels after injections have started is pointless and not recommended. It will only show high serum levels of injected B12 and not what happens to it at cell level or how long it stays in the system, or even if it is active or not.
I didn't feel any improvement at all with loading injections or with maintenance injections, in fact I didn't feel anything at all for 10 months (3 months at 2 injections a week) - when just before Christmas 2016, I finally felt the injection go in ! I'd been doubting whether the nurses were actually doing them at all by then !
Luckily I don't think this is very usual, and I find it a very positive sign that you reacted well initially. You and your GP are doing well: keep going.
Hi Cherylclaire and thanks so much for your reply.
I know I'm really lucky to have been treated quite quickly and to have a great GP who is open and receptive to the idea of working with the patient instead of against them.
I'm not sure if a definitive diagnosis of PA will ever be reached if antibody and other blood tests are negative, and I may have a mixed picture, but I know I won't struggle with receiving continued treatment due to presenting with neurological symptoms. I've just found the prospect of requiring injections long term truly horrifying! I think I'll experiment with spray in-between injections as it strikes me that keeping B12 levels as high as possible (for a water soluble vitamin) is going to help with nerve repair.
As for the neurologist, it was really helpful to know what tests that appointment may lead to. I'd already told myself that if my symptoms do worsen in the interim I'll go back to my GP to see if the appointment can be expedited - very difficult in todays NHS, I know.
Thanks for focussing on the positive in that I reacted well initially to treatment, I will try to remember that in the down moments, and for your encouragement and support.
Here for the good, here for the bad. That's why I love this forum so much.
Everyone honestly gives whatever they can in terms of advice and support, in spite of their own ongoing issues.
There are people on here who are more able to suggest sublinguals and sprays - some have found certain types of cobalamin better for certain symptoms. Ask about neurological improvement for example, and you will get advice. Didn't get anything from Boost spray myself, but I know some swear by it.
You won't always find this as hard or frightening as it seems right now. Hope you get a really helpful neurologist.
Thanks again for your input. I'm going to look into sprays and insulin syringes for injections. Reading everyones kind information and advice has been a real help and made me feel a bit less anxious and depressed.
I guess this whole thing isn't just frightening but frustrating too. I'm just finding it hard going from relative good health to this at our age and not knowing how it's all going to pan out.
One thing that's becoming clear is that nothing happens quickly, so I'll just need to learn to be less impatient.
Thanks for your support - you must be frozen to the bone up there in Aberdeenshire, even colder than my native Edinburgh (but now in South Yorkshire)!
You're welcome. Ha ha, not too bad up here in the frozen north. I was actually born in Embra but only lived there for my first few months. Hope you're enjoying Yorkshire, we love holidaying there 😀
Glad to hear it's not too cold up there - well, yet at least!! Yes, Yorkshire has some really beautiful places and a lot of top people. I'm sure you come down here for the tropical heat compared to proper 'Up North'! It's alway at least 5 degrees warmer, and sometimes as much as 10 on the same day, when I go back to Embra. As soon as you step out the car and feel the driving wind and rain you know you're home!😆
Make sure you never have nitrous oxide - it will oxidise all your B12. It happened to me and set me back worse than I started and is taking more time to remedy.
Thanks so much for your reply. I'd heard that nitrous oxide can be an issue, but hopefully I'll not be needing a general anaesthetic anytime soon! It's certainly something I'll flag up if I have to have one in the future😊
I can totally relate to what you are going through. In the beginning I was told to do shots every other day because I had such terrible burning and tingling symptoms and the guidelines said to do shots every other day until the symptoms no longer improved. The beginning was pretty rough and I felt just awful, but over the months and now years the improvement continues. For me, if I do less than every other day/every day shots my numbness starts to come back and I've learned that each person is different and it's so important to keep track of your symptoms and gauge how much you need based on that. My symptoms are still improving so I continue daily/every other day shots. Also, a huge, big improvement for me came when I began eating a whole-food, plant-based diet. My tummy problems really calmed down and I now never get any bloating or nausea, which I suffered from before. Good luck to you and keep persisting. It does get better. It's been six years for me and I am doing so much better. But dang, it did take a lot of effort to find my way.
Thanks for that Musicgirlie. It's so useful to learn of your experience. I'm not beginning to get a feel for what can happen, to tune into what my body's telling me and that everyone is different - not one size fits all in terms of approach to managing this. Glad to hear that you have made and are continuing to make progress! Thanks again.
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That burning sensation is horrible. I occasionally get the twitches too.
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