I am new to all this and just looking for help to understand....there my already be a post with this on so if there is I apologise. I am trying to suss out if b12 is my problem. Can you tell.me what symptoms ur b12 deficiency shows... I would like to see how many have the same as me
Particularly interestedto.leaen about any dizziness people have but any input appreciated
X
Hi,
Mine is numbness in legs and feet as well as my arms and hand. Feeling extremely tired all the time.Forgetfulness and sometimes my heart will race.
Tea123
My symptoms are lightheadedness,forgetfulness,racing heart,depression and mood swings
Been going to docs for years with non specific symptoms and then I had very sore mouth and ulcers
GP sent for bloods and B12 deficient and intrinsic factor diagnosed 18 months ago
Had the usual loading doses and 3 monthly jabs won't budge on any more so I self inject when I need it
When having loading dose got shingles and they reoccur every three months or so don't know if anyone else has this problem
Very similar symptoms, not mouth ulcers
lm pretty new as well symptoms over the last 15 years have been depression anxiety dry mouth difficulty swallowing tiredness muscle weakness dizziness racing heart etc etc, l had b12 checked 6 months ago and told it was normal found out when l asked last month it was 144 which is low back at the docs next week always ask what your results are also ask to get your ferritin levels checked as a lot of us seem to suffer iron deficiency and this doesn't help b12 symptoms at all this forum is very good for info and also b12d.org ive had a lot of support to go back to docs hope this helps
All of the above and then some, I had nearly 50. Here is a long list of possible symptoms.
People vary a lot in which symptoms manifest and which affect them most.
There are some checklists of symptoms on the PAS website which may help
pernicious-anaemia-society....
I had depression and anxiety for 40+ years (certainly in my teens and probably even before that - was on tranquilisers for a while when I was 10)
I developed problems with carpel tunnel in my late 20s
I developed problems with tarsal tunne/flat feet in my 30s
I developed mild tinnitus in my 20s/30s
I developed sudden urges to go to the loo in my late 40s
I developed a degree of bladder incontinince in my 40s
I developed balance problems in my 50s, feeling very unstead on my feet - though I was fine balancing on a bicycle and felt more comfortable trotting than walking - probably because there was a momentum element to the balance.
In my 50s I developed problems with mild psychosis (problems with filtering out levels of noise and light to focus on what I needed to focus on that were bordering on severely affecting my ability to actually do every day tasks)
Also in 50s - problems with heartburn - occasionally so bad that I had to throw up to resolve it.
I have had brittle nails for ever
I suffered from frequent fungal infections from my 30s
Although not listed on the site above as a symptom I stopped having runny noses with colds in my 40s - the runny nose is now back.
All of these actually got worse after loading shots and only actually improved when I started treating myself with ridiculous levels of B12
I completely lost the feeling in one area of my left foot when I had a fall, broke my ankle and had to have it pinned - think that was probably anaesthetic related - this was the time when I was told I had low B12 but took me another 18 months to figure out for myself what low B12 meant.
There are probably a shed load of other things that if I really sat down and thought about things or someone described them to me I would say - yes I remember that
Told you there were others
Problems with weakness in lower back (late 40s)
And the PPS (post post-script) is that I have never shown any signs of anaemia though I used to bleed and bruise for England
I've also always had a tendency to bang into things which did get worse in my late 40s.
I forgot about banging into things
I have pernicious anemia Omg I’ve got everyone of your symptoms
I’m constantly falling over things my hands go numb every morning and really painful constant heartburn my eyes and my nose is constantly running My thumb feels like it going in out of its joint I’m in total agony the pain have now started going up to my wrist really painful I can’t even bend my thumb anymore it’s like it stuck
In the beginning I went to my GP with dizziness that's where it all started. Also body aches especially hands feet and legs. Headache brain fog memory loss and most recently jaw pain it hurts to open my mouth to wide and move it from side to side . Mouth ulcers palpitations
Forgot brain fof. I thought that was the early menopause. Bleeding, profusely.
Hi,
Some links to Symptoms lists.
pernicious-anaemia-society.... See Symptoms checklist
b12d.org/admin/healthcheck/...
I found it helpful to read these books
1) "Could It Be b12" by Sally Pacholok and JJ. Stuart
2)"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
I found a B12 connection with virtually all my symptoms when I started researching them.
Ataxia is a problem for me - and even more so before the next injection ( weekly ) I also have Hashimotos which can affect balance. Back weakness is a huge problem and had surgery in 2007 - which I now believe was not just stenosis - but de-myelination of the spinal cord. That was after years of having a B12 level around the 300 mark and being told it was normal 
Being able to learn so much from others has been a huge help ....
Very interested in your post.
My aunt has spinal stenosis. She started with a shuffling gait minor. Now she has to use walking frame/wheelchair. She has numbness to top of right thigh and crawling sensation. Bladder problems and drags her left leg also memory loss. Pain in lower back only relieved when seated. Very unsteady in feet. She has her b12 tested and it came back 116 then GP retested it came back 169. So he said there is no defficency. Looking back what causes you to think it was not stenosis.
What were your symptoms 💙
Am on my phone and watching Wimbledon so will reply in detail tomorrow. I live in Crete so can buy B12 injections OTC for pence and inject weekly or more often. Symptoms have improved greatly .... You can click onto my name above and read my Profile 😊
b12deficiency.info/signs-an...
Scroll down in the above link to view the Neurological signs and Symptoms of B12 Deficiency - it is a serious condition. Also look at the Headings on the left of the page and click onto Films and watch the videos to understand the seriousness of the condition - something Doctors refuse to acknowledge. Sally Pacholok - in her book Could it Be B12 ? - mentions that we need a level of around 1000 to prevent cognitive decline.
youtube.com/watch?feature=p...
The above video starts around 4 minutes in where Prof Smith talks about Low B12 and brain shrinkage. It is around 40 minutes long and well worth watching.
There are other tests your Aunt should have to confirm B12 Deficiency - MMA and Homocysteine - if both are high it can suggest B12 is low in the cells where B12 needs to be. The blood test tells you what is in the blood and not all of it can reach the cells. You could also go to the main website of this Forum and check out the symptoms for PA there ....
Most importantly the GP should be going by symptoms - and she has them by the bucket full 
I had surgery back in 2007 in Germany for the stenosis. I knew nothing about B12 deficiency at that time - had mine checked on a regular basis but believed the Docs when they said all was well. Before the surgery my legs were so painful as was the back - I had nerve damage and tried natural things - occasional pain relief. Before weekly injections I suffered ataxia - wobbly in the dark - unable to walk heel to toe with eyes closed - could not do balancing asanas in yoga - and still cannot.
There are some good posts under Pinned Posts on this page. if you are on a phone scroll down and down - on a PC to the right of the page at the top
Hope your Aunt soon receives the treatment she deserves. It is a disgrace that we have to find wellness on the internet. Why when it costs so little are Docs not treating EVERYONE with B12 - as everyone seems low - obviously on this Forum but also there are around 58,000 on the Thyroid UK Forum who also suffer. They seem happy to send people for Neurology Consultations - nerve conduction testing - Gastro appointments - anything but an inexpensive treatment of a B12 injection. Thankfully I live in Crete and so buy mine OTC - phew.
Hope things soon improve for your Aunt - if treatment is quick some neurological damage can be repaired - but some not. B12 is involved in the myelin sheath that protects the nerves - this repair takes time and may need more frequent treatment of injections.
Hi, finally got answers for my aunt after four years and ending up in a wheelchair, memory loss and urinary I continence. The discovered she has water on the brain (hydrocephalus).
Her b12 is 160 -169 to low in my opinion. GP says no problem as our levels are set at lowest 130 -150.
Just thought I would let you know her diagnosis. X
So sorry to read about your Aunt. Do hope she can respond to treatment. I agree with you about her B12 being too low. I often think ranges are for healthy people and when poorly we need more of everything 😊
Thank you for being in touch ....
When I first discovered I had VIT B12 deficiency, was after a full blood screen. 18yrs ago. Because, I was always ill with colds, flu, tonsillitus, Laryngitus, sore throats. Week after week. Tired. Also, I did not fit into the B12 deficiency cryteria. Hence blood test. I also became, moody, sensitive to remarks from other people friends, very protective of myself & family. Painful bones. Scratches, cuts on my skin took weeks to heal. Bruises appeared all over my body, in places where I could not remember, where I had bumped.
Goid luck. Hope I have been helpful?
.
Thanks everyone so helpful ... just curious as my doc just won't beleive mine is b12 ... as I am awaiting the test results to see if i absorb.... I feel so dizzy again today and I am convinced I need regular shots ....let's hope I can't absorb and they agree to.try ....otherwise I will be self injecting
Hi Toots same here. Going to have all bloods done in a week as Doc said my levels are 'normal' from previous bloods. I have IBS and low stomach acid so I know I have an absorption problem. When I told him about B12 defiencey he hadn't got a clue. I feel sick, dizzy and can't feel most of my right foot. He puts all my symptoms down to the menopause which is absolute rubbish. He has now requested a load of blood tests so I hope I will know more in a few weeks. Let's us know how you get on. I agree with help and information from members here has been invaluable so thanks to all.
Will do and good luck .... do u get daily dizziness??
Yes. Was at some friend last night for a meal and felt terrible. Trouble is if you tell people about B12 they look at you like you have two heads. Head buzzing and swimming now. So fed up. How are you today?
I feel crap ... dizzy tired achey legs and fuzziness in my head ... since this started I have had no social life it's crap! And if docs would just try regular injections I could be free of this!!! Sorry ur having a rough time too x
I know it's awful. I dread going out but I force myself. I get heavy legs so bad I can hardly walk. I have told my Doc I want answers as I am fed up of feeling ill. Hugs. X
Do u have shots?? Xx
No I took Jarrow 5000 tablets and felt an improvement. The they stopped working and symptoms returned. So when back to the docs. I read up on how blood tests mean nothing if you are having symptoms. That's why I went back and told him I would like more tests. I will be asking for shots pending my results. Either way I need treatment as my symptoms are getting worse.
I hope u get them I had to literally rugby tackle my doctor for one but that's all he would give me!!! They r playing God with people's lives TREAT THE SYMPTOMS grrrr
Absolutely gree 100% xx
Hi,
If you are already taking B12 supplements the results of some tests may be affected.
Link about B12 deficiency blood tests
b12deficiency.info/b12-test...
Hi Sleepbunny I have stopped the B12 now prior to having a blood test next week. I am aware that taking supplements could affect the results. The reason I went is because the supplements stopped working and I started getting symptoms back. He is doing a test to look at cell levels and take it from there. He has said he will treat my symptoms and not be carried away by numbers. I have ibs and low stomach acid and that has to have affected my absorption over the years. Thank you for the link.
Oh my God I so wish my doc would treat the symptoms and I may be free of this hideous illness.....
Good Morning Toots. Stamp your foot and cause a fuss. My GP is lovely but when I went to see him he knew I meant business and I was not going to leave until he agreed to a new set of blood tests. Where do you live and what is your GP like?
I'm in the Isle of Man... doc usually lovely just won't have it that the issue is b12 as serum level is normal.... even though the 1 injection toon I begged and cried for and got massively helped for 3 days my symptoms eased but it wasn't enough
That's ridiculous. Why don't you print off some of the info on here and give it to him. He can't argue with that. Please don't be fobbed off. He must treat your clinical symptoms!!
Can u send me a link for what would be most beneficial to show them ???
Sleepy bunny has put one on a few replies up. It's called Link for B12 blood defieciency tests. Have a look and print it off.
Well I won't gwt an appointment for a week so thinking I may write a letter and put that in with it to my gp and pop thru letterbox so they get it tomorrow saying I am desperate .... what do u think???
Well I would. Print it off along with anything else you think is appropriate and pop a letter in there as well. I am going to wait and see what my blood tests show and then see what he says. Either way I want treatment. I accept that the NHS cannot pay for everything but surely this is a condition that must be treated as defienency causes so many problems!! Please do something!!
I am really angry grrrrr
I know it's soooo frustrating!!
Tootsiebella
Here's a link about writing to GPs if unhappy with treatment.
b12deficiency.info/b12-writ...
Fbirder also has a useful summary of mainly Uk B12 documents which your Gp may find helpful. If you pm him I'm sure he'll send you a link.
Might be an idea to get your thyroid check as well as the B12 I had dizziness as a symptom of an underactive thyroid before being diagnosed 15 years ago I went to the docs thinking it was iron based anemia. I've only just been diagnosed with PA four months ago. I too suffer from dizziness, aches and pains, tiredness and many other of the symptoms. Good luck
Thanks for replying ...I've had thyroid checked apparently it's fine
Do you know the actual results of your thyroid ? Was the fine opinion from you or the Doc ? If they only tested the TSH then your Doc has absolutely no idea what your thyroid is up to. Low B12 and thyroid so often go together. You will need the following tested to reveal the full thyroid story - TSH - FT4 - FT3 and the thyroid anti-bodies Anti-TPO ad Anti-Tg .....
Sadly Docs are just as clueless about thyroid as they are B12/PA from what I have read on these sites .... If you are having B12 shots then further testing is of little or no value as the results will be skewed. I have even read on this forum that a GP stopped injections for a PA sufferer because the blood test showed B12 high in the range. As you know injections are for life with PA.
Oh that was his words I will find out ....my story is 10 ish years ago I had very low serum level so they started me on injections... had them for a few years and about 3 years ago they stopped them as my serum level was high.... last 3 months I've had dizziness almost constant fatigue and heavy legs. B12 serum checked and was about 700... even though I haven't supplemented and am vegetarian with very little dairy. I have had many many rests all of which haven't shown anything to warrant my symptoms. I begged and cried and got 1 b12 shot and for 3 days felt way better... then back to feeling dizzy... my doc refuses anymore shots but has sent me.for the instrinsic test I am awaiting result .... it just doesn't sound right to me and have since learnt the serum test is inaccurate but don't fully understand it all ... I hate being so dizzy
...well only 20% of the B12 in your blood test can reach the cells where it is needed. Maybe you are not metabolising the B12 for some reason. So much to learn about B12 so please read the link given to you by sleepybunny - there is everything there you need to know to be ahead of your GP. There are other tests to confirm Low B12 - all on that site. Look at the signs and symptoms too. Sadly we have to read and learn for ourselves and there's a lot to read ....
Always obtain ALL copies of bloodtests from your surgery - you can then monitor your OWN health. Helps with posting here too so people can be more specific with their advice.
i am not a medic - just a Hashimotos girl with a B12 issue
There's no apparently fine about it! They don't understand thyroid test results at all. Do you have the results to post? You need to get the full thyroid test, tsh, t3/4, thyroid antibodies, as well as folate which is essential for b12. Most doctors only do tsh, t4 if you're lucky! :edit: sorry only just saw Marz's excellent post and I just repeated.
No I will try get a copy
This may be too much information, but I happened to have a list of my symptoms and how the supplementation has helped, or not. I'm currently taking 5000mcgs hydroxocobalamin.
SYMPTOMS
Blurred vision - there all the time, but fluctuates. First symptom seven years ago, never gone. Supplementation hasn't helped.
Frothy urine - also there from the get go. Tested negative for proteinuria. Supplementation has helped it
Split finger and toe skin (by the nail) gone with supplementation
Eye bags - a little better with supplementation
Falling asleep every evening - much better on supplementation
Awful brain fog - fluctuates
Feeling ill - like flu -fluctuates
Feeling tired - there most of the time, but sometimes gets worse.
Awful short term and long term memory- fluctuates.
Depression (quite bad at night). Paranoia, Anger - all these three removed with Hydroxocobalamin.
Extreme thirst and increased urination - was very bad, but virtually gone now with supplementation.
Pressure on chest, felt like I couldn't breathe properly, came on with exertion. Gone with supplementation.
Increased mucus and congestion - always been there, but not dire. Went with supplementation.
Root canal pain - gone with supplementation
Peripheral neuropathy - hands and feet would hurt, but now, with supplementation virtually gone. Comes back when dose lowered.
Diarrhoea (this became better as I dropped down from b12 and now worse again presumably as the B12 has left my system) better after one day.
urgency - still there, has been there for about eight years. Supplementation helps.
Occasional difficulty swallowing only for last seven years
Balance problems - not severe, but eg not as confident walking down the stairs - appeared with supplementation, then almost gone.
Glossitis appeared only with supplemetation - virtually gone with more supplementation
Difficulty swallowing - temporary symptom
Itchy back - temporary symptom .
Low Thyroid - TSH normal, but Broda Barnes test confirmed poor thyroid function
Low cortisol, 2 Genova saliva tests - take licorice
Before supplementation suffered from a lot of cramp which salt helped.
Poor nails - bad all my life. improved a lot since supplementation
Nausea - gone with supplementation
Headaches- almost stopped with supplementation, though worse at first.
Sleep difficult, fine with supplementation - licorice helps too
Used to have very low blood pressure and dizziness - postural hypotension - licorice stopped this and helped my thirst and sleep.
Thanks for a detailed and helpful list. I can certainly empathise with most of them.
mine are numbness/severe pain in legs and feet - tummy upsets/,bloating - and fatigue.
oh... I forgot struggling with my gait when I am tired, and tinnitus.
Hello,
I'm Sue. 50 ( diagnosed Dec 2014. I believe this has been the cause of ... Most probably ALL of my ailments over the last 10/15 years)
I only get 12 weekly jabs from Doctors but, I do my own weekly as that's how often I need more. Started Monthly and.worked back going purely by MY symptoms which... Our damned GP's don't. .
Most of these I hate with a vengeance!
Dizzinesss. Depression. Loss of memory. Pins and needles. Cramps. Changes in my eye sight (which my Opthalmologist said is linked).
Head tremor (having cervical spine MRI on 15th to see if trapped nerves... Probably not as I believe these are ALL because diagnosis was left too long!)
Hand tremors. Also my grip, it's useless, I drop things.
I fall over... Down I go, I've no explanation for it.
Poor balance. (Walk with stick for last 5 years)
Tiredness. Lack of sleep. Restless legs. Burning thighs. Muscle spasms.
If I get cut, I seem to bleed for much longer than I used to. I bruise very easily. Mouth ulcers, swollen tongue that's horrid. Concentration is ... Gone. Lack of patience now too.
My hearing is going in my left ear. I have a very high pitched tinnitus in that too for almost 3 years. Hearing aid being fitted on 18th May. Losing the High pitched frequency sounds. S's, F's, Th's.
More than this I know, but... Memory!
I take many pills from GP for my "medical" problems.
I supplement. Folic, Iron, B.complex, Magnesium, Omega oils. More
Sue x
Hi Stroodsue,
Have you ever spoken to the PAS (Pernicious Anaemia society)?
They are helpful and sympathetic and can point you to useful info. Lifetime membership costs £20
pernicious-anaemia-society....
01656 769 717
In the past I have written some very detailed replies...too tired at moment. if you search for my posts there may be some useful info.
You could start your own thread.
Hi, sleepy.
I was replying to the posters questions
Asking for our symptoms!
Hi, these are my symptoms listed below.
Possibly there are other symptoms that I have forgotten from the early days - before commencing treatment.
Lower spine pain
Unable to bend down
Unable to step up on a chair/large step
Unable to rise onto toes from flat feet (used to be a professional dancer)
Unable to get up of the floor if I fall
Unable to pick up items from the floor
Constantly falling or bumping into things
Constantly dropping things
Broken my nose and three toes - in separate incidents
Trouble walking
Pain general
Headaches constantly
Severe fatigue
Feeling so ill can't get out of bed until late afternoon/evening
Can't concentrate
Can't enjoy social interaction
Don't want to leave the house
Lost interest in everything
Feel like I can't get enough oxygen
Breathlessness
Thick tongue
Skin itching/bruising/tearing
Bile Acid Diarrhoea
Exercise intolerant
Involuntary deep breaths/gasps in
Unable to lift right leg to put knickers on
Depression
Parts of the body jump as if I get a very mild electrical shock or someone pushed me from behind
Left leg shakes when I lift it up to knee
Lost feeling in right leg - for 4 hours (only once)
Diagnosed with B12 Deficiency in December 2017.
GP would not prescribe consultant's requested B12 injections/ampoules, therefore I buy privately from Germany and self inject.
Will not waste time or energy arguing with GP's who are uneducated in the condition, symptoms, and treatment OR those medics who have a callous, arrogant, disregard for my health and all those with PA or B12 Deficiency.
Persistant B12 Symptoms ?
What is the procedure to start B12 and to measure b12?
Can I ask what your symptoms are?
Symptoms
