Hi..I am a 61yr old female waiting for blood tests ..Full blood test,B12 and Folic acid..I recently had a routine blood test re my thyroid..I was taking meds for hyperthyroid but was taken off them a few months ago.Meds are known to deplete Neutrophils,but despite coming off meds,my neutrophils are still falling... The doc suspects B12 deficciency.. Anyway a few days ago my mouth started to feel like it was burning,and the skin from inside my cheek came away. Also my lips have become very sore..Not sure if this is a PA symptom?. Can anyone help?thanx everso.D.x
Burning mouth: Hi..I am a 61yr old... - Pernicious Anaemi...
Burning mouth
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Yes its a b12 deficiency symptoms. It's on the list .My daughter gets z very sore mouth if her folate is low.
That is usually done at the same time as b12
Also ask for a Intrinsic antibody test . Picks up 50% of those with PA. A negative result does not role out PA.
B12 should be treated first.
If you look through links or use the search tool you can find lists of symptoms
Sleepybunny
Plots of posts and links
Difficult as symptoms overlap with other conditions
Get a copy of your blood results.
So many have been told everything fine when it wasn't.
List your symptoms.
PA is an autoimmune disease.
Often people have more than one unfortunately.
I wish you well
Thankyou so much for your reply..I am very worried as feel awful and know theres other things it could be... I have Graves disease which is also an auto immune...Blood tests next thurs.Will have been 3wks since the last where neutrophils were 1.3 .Seems a long time to wait.....Many thanks...D.x
Yes when so ill terribly long wait
It is and I'm a born worrier..Trying to keep busy...thanks again.D.
I do have a positive intrinsic factor. I found out almost two years ago. This symptom started last November and it’s become worse. I also stopped producing saliva but don’t have Sjogrens. I’m producing saliva again but the roof of my mouth feels like a pizza burned it and my mouth still feels dry.
Burning mouth was my first definitive PA symptom. Well at least the first one I panicked enough over to go to the doctor. Mine was the roof of my mouth and tongue.
Wishing you answers and wellness.
Hi...To be honest it's the first symptom I have sctually been aware of,and it's only the fact that doc mentioned B12 after some dodgy blood results that brings me here...With hindsight there is other stuff that fits in..As I say with me it was my entire mouth including my lips which were burning,and doctor google came up with B12..!..Anyway test next week...Thanks again. D.
Hindsight is 20/20. I’m appalled at how many symptoms I passed off as motherhood and exhaustion before I sought help. I’m glad your doctor is working to find out the cause. Good luck with your test!
Thankyou!..Yes we are blessed with excellent GPs at our Practice..x
Did the burning sensation going away after you started injecting
Took a while in the beginning, but yes. It is one of my first symptoms to show back up when I need another shot. It is relieved within 5mins of injecting now.
Thank you! How long did it take? I injected today and will keep going. You’ve given me hope.
Honestly I can’t remember. I’m sorry. The first 8-12 months of healing are a blur, as recovery was rough and I had a new baby. But I’m doing okay now. Kind of wish I had kept a better symptom log to see how far I’ve come. Wishing you luck! Listen to your body and keep a symptom log. It will help when you feel like you’re getting nowhere.
Thank you! Right now that's my one symptom of this. I also have Ehlers-Danlos so other symptoms are from that. The tip off to me getting diagnosed with PA a couple years ago was that I was collapsing and getting really drowsy. I was hospitalized twice before I knew to get the intrinsic factor antibody test done. Thank goodness a friend who has PA knew my symptoms and suspected it or I likely wouldn't be here.
I’m sorry you’re having a rough go at it. Thank goodness you had a friend that recognized symptoms to get you a diagnosis. Doctors seems to ignore PA as a condition anymore. I truly hope you get relief from your shots. I am no doctor, but I know I can’t function without mine. No one wants to be bed bound. Sending well-wishes for all over health.
Oh my hematologist fired me as a patient as his lawyer saw me as a threat because he refused to prescribe me B12 because I’m always high. So I was an SI’er for several months until I found doctors who will prescribe. And my rx is for once a week and now I’m back to daily so I’m back to SI’ng.
I get a sore mouth even though I SI once a month have asked the dentist if he had anything he could suggest that may help but he"s not come up with anything so far. Hope it improves for you soon, best wishes
Thankyou...It was a real shock to me as it came on really quickly and I'd never heard of anything like that...I'm hoping for answers after my test next wee..Thanks again.D.
Hi,
Some links to info about PA and B12 deficiency that may be helpful.
Take a week or so to read through them as there's a lot of info.
Some links may have details that could be upsetting.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
b12deficiency.info/what-to-...
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Testing for PA
pernicious-anaemia-society....
Symptoms of B12 Deficiency
pernicious-anaemia-society....
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Next link mentions symptoms of B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
Symptoms list (from B12 Institute Netherlands)
b12-institute.nl/en/symptom...
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
UK B12 documents
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (detailed, aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines (main points from above document)
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
Link below outlines two patterns of treatment in UK for B12 deficiency
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
If you have B12 deficiency with neuro symptoms, make sure you are on the pattern for those with "neurological involvement".
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
Coeliac disease
Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Local Guidelines on B12 deficiency
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
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.
Keep copies of any letters sent or received.
Best piece of advice I ever got was .....
to always get copies of all my blood test results.
I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
nhs.uk/nhs-app/nhs-app-help...
Retention of UK medical records
bma.org.uk/advice-and-suppo...
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.
Two useful B12 books
"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 hydroxocobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Films and videos about B12 deficiency and PA
PAS conferences
pernicious-anaemia-society....
Films about b12 deficiency
Misconceptions
Some GPs and other health professionals can have misconceptions (wrong ideas) about PA and B12 deficiency.
Worth knowing what the common misconceptions are in case you meet a health professional who has some.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
BNF treatment guidance has changed since above blog post was written.
Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
B12 article from Mayo Clinic in US (detailed article, aimed at researchers and health professionals)
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
I am not medically trained.
Link to a thread I started a few months ago "Signs of B12 deficiency in the mouth"
healthunlocked.com/pasoc/po...
Thankyou for all that info!...I'm amazed at how many things B12 can affect..We will be glad when I've had the test so I know its definately that..Doc seems to think so..I'm very grateful to everyone for their support..Will get reading...thanks again.D.
Hi,
"We will be glad when I've had the test so I know its definately that"
Please be aware that it is possible to have severe B12 deficiency symptoms with a serum (total) B12 result that is well within normal range.
I had dementia type symptoms and symptoms affecting my spine plus many other neuro problems with serum B12 results from 300 - 500 ng/L.
The reason I'm mentioning this is ....
if your serum B12 results come back within normal range and GPs say you haven't got B12 deficiency that is not necessarily true.
Some people have functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells. Functional B12 deficiency can occur with normal or even above range B12 levels.
See Point 5 in link below which is about being symptomatic for B12 deficiency with normal range serum b12 results and mentions functional B12 deficiency.
b12deficiency.info/writing-...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
Summary of BSH Cobalamin and Folate Guidelines below includes the comment
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed in order to avoid neurological impairment"
pernicious-anaemia-society....
It's also possible to have PA (Pernicious Anaemia) even if the results of PA tests are negative. See link to PAS article "Testing for PA"in my other reply.
If tests for PA come back negative and they say you haven't got PA, ask them about Antibody Negative PA. See BSH Cobalamin and Folate Guidelines links in other reply for more info.
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published next year.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Finally apologies for firing so much information at you.
I'm really grateful for all the info...Its worth knowing...I am very prone to stumbling and falling over,and coordination isnt brilliant even though I'm only 61 ,walk normallyand look relatively fit...so wouldn't be surprised if its B12....just hoping there is a( not too nasty!) answer as to why my neutrophils are coming down...thanks again.D.
You mention stumbling, falling and poor coordination which could be considered as neurological symptoms. Burning sensations would usually be considered as neurological.
Do you have any other neuro symptoms eg
tinnitus
tingling
pins and needles
insect crawling sensations (known as formication)
electric shock sensations
numbness
muscle twitches
eyelid flickering
limb jerks (known as periodic limb movements)
tremors
memory problems
balance problems
difficulty getting right words out (known as nominal aphasia)
proprioception problems (problems with awareness of your body in space)
clumsiness
bumping into things
dropping things
strange gait (unusual way of walking)
See Symptoms lists for other neuro symptoms...
Make sure your GP and any specialist have a list of all your symptoms especially any neuro symptoms and definitely including any that affect your spinal area.
If yes to neuro symptoms, have you been referred to
1) a neurologist?
2) a haematologist?
If gut symptoms present
3) a gastro enterologist?
Link below explains when a GP should refer a patient with B12 deficiency to a haematologist and a gastro enterologist.
cks.nice.org.uk/topics/anae...
It's vital that patients get adequate treatment for B12 deficiency.
Under treatment, delayed treatment, no treatment can all increase the risk of permanent neurological damage including damage to spinal cord.
Blog post from Martyn Hooper's blog about PA and B12 deficiency which mentions SACD, sub acute combined degeneration of the spinal cord.
martynhooper.com/2010/09/21...
Hi sleepybunny..I do have other symptoms but put them down to ageing.Always had mild tinnitus but its definately ramped up a gear...Also I'm renowned for stumbling.
Had so many falls over the years..
Last one about 2 weeks ago..and yes balance definately an issue..I get tkngling/itching between shoulder blades an def the "searching for a word"..Have had IBS since contracting Campylorbacter a few years back,but really bad bloating at the moment..When you're getting older it's hard to distinguish which of these things is normal...D.
Hi again,
Do you have someone supportive who can help you go through some of this info?
Many of the symptoms you have mentioned can be found on lists of B12 deficiency symptoms.
Have you got any recent results for folate, ferritin (or other iron tests), full blood count (FBC) and Vitamin D?
Forum members often report deficiencies in these nutrients along with B12 deficiency.
If you have both folate and B12 deficiency, it is usual to start treatment for B12 deficiency first.
Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
It can be useful to compare older test results with more recent ones as a drop or rise in test results can sometimes be significant.
Symptoms Diary
Some forum members keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received.
A diary can be useful evidence of improvement/deterioration in symptoms to show GP/specialist.
If any of the info I post is useful, please pass it others you think will benefit.
B12 deficiency is often misdiagnosed as other conditions eg ME/CFS/Fibromyalgia.
b12deficiency.info/misdiagn...
martynhooper.com/2018/02/10...
Because of the huge impact it can have on mental health, it's not uncommon for forum members to have a mental health diagnosis.
b12deficiency.info/mental-h...
Next link is from a Dutch b12 website - units, ref ranges, treatment may vary from UK
stichtingb12tekort.nl/engli...
It's also not uncommon to be told the symptoms are psychosomatic or patient has hypochondria.
Falls and B12 deficiency
You may find the following response to a BMJ article on Falls interesting to read.
B12 is mentioned. It's possible some of the details could be upsetting.
bmj.com/content/353/bmj.i14....
Push to see a neurologist and if you see one, ask them to check your proprioception sense.
This is awareness of your body in space and I think is also called "position sense".
Do you find that your balance is worst when your eyes are closed, it's dark/night-time or your view of your surroundings is blocked?
For example, I used to fall off the pavement if someone walked directly towards me and I couldn't see ahead into the distance.
If I went out to put waste in compost bin at night, I found it hard to walk in a straight line.
I used to knock things over when reaching for them (my eyesight was fine).
If neurologist doesn't do any tests where patient has eyes closed then it's possible that proprioception has not been fully tested.
The following tests should only be carried out by a doctor at medical premises due to risk of loss of balance.
Videos of these and other neuro tests that can help to check proprioception available on Youtube.
1) Romberg test
2) Walking heel to toe with eyes closed
A neurologist is quite likely to ask you to walk heel to toe with eyes open but the results doing the test with eyes closed can be very different in someone with proprioception issues.
NICE guidelines on referral for neurological symptoms
nice.org.uk/guidance/ng127/...
Links below are to forum threads where I left detailed replies with lots of B12 info eg more about causes of B12 deficiency, more B12 books, more B12 websites, more B12 articles and a few hints on dealing with unhelpful GPs.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained just someone who suffered for years from unrecognised B12 deficiency.
I hope you get the help and treatment you need.
In August 2021 I had numerous horrible ulcers on my tongue which were so bad I lost my appetite. The symptoms lasted about a month. Eventually I had a blood test and I was diagnosed with PA.Looking back I realise that I must have had PA for several years. Often I would feel tired but put it down to my age (I’m 70). I’ve had my loading dose and one 3-monthly booster. I don’t get as tired vas I used to before I started treatment.
In a weird way I am thankful that I had the horrible tongue ulcers because this led to the right diagnosis and treatment.
Hi...Thankyou for your input...As I say mine was a really severe hot tingly feeling that affected my entire mouth and lips..,and my white blood count is low..I dont really get particularly tired.I physically cant do as much walking as I could bit I put it down to my age..I have my test next week so will be interested to see what happens..Thanks again.D.
Hi Twinsgrandad,
"I’ve had my loading dose and one 3-monthly booster"
Do your symptoms return or get worse before your next injection?
Do you have any neurological symptoms eg
tingling, pins and needles, tinnitus, muscle twitches, memory problems, balance problems, clumsiness, limb jerks, tremors, difficulty getting right words out etc?
Link below 2 treatment patterns, for those without neuro symptoms and for those WITH neuro symptoms
bnf.nice.org.uk/drug/hydrox...
If you have neuro symptoms make sure you are on the pattern for those with "neurological involvement".
There are too many GPs in UK, in my opinion, who don't realise that patients with B12 deficiency WITH neuro symptoms should be on more intensive treatment than those without.
If you have the time and energy, try to track down the local guidelines on B12 deficiency for the CCG (Clinical Commissioning Board) or Health Board that covers your area.
More info in my other replies on this thread.
Hi debbiejayn, I had Burning Mouth Syndrome for years (from 2010 till not too long ago) and was sent here, there any everywhere. The dentist suggested I buy Difflam oral rinse/spray in 2010.
I was diagnosed with B12 deficiency in 2008 but the BMS didn't really go on injections, though the anglular chellitis did (I was only having 3 monthly jabs even though I had neuropathy).
I started self-injecting B12 in 2019 but still had the BMS. Forward to 2020 when I started self-treating for hypothyroidism with levothyroxine and eventually, T3. From June 2021 I have been seeing a private endocrinologist. It is only in the past few months that I can say the BMS has gone. I occasionally get a slight sore mouth from certain foods, but the constant wheals, burning, sore lips and raised areas have gone.
I also used to have a sensation of my lips swelling. I could just be sitting watching tv or doing nothing in particular, and it just felt my lips were swelling up - whether they were or not I don't know, but I do have infiltration below my lower lip and down to one side, so it looks as if I have had Botox!
Will you be starting B12 injections, or are you waiting to hear from your GP? Similarly your thyroid test. Hope you get some answers soon.
Hi..Thankyou for your input...Funnily enough I have been seeing an Endocrinologist privately as I am hyperthyroid..The medication I was taking until recently. lowers immunity.As my neutrophils were coming down I was told to stop taking meds.The expectation was that WBC would start going up when actually its come down.I had a call from doc a few hours after blood test to say haematology wanted more tests..I was very worried..Speaking to the doc later he said that they were going to retest on 20th Feb and were looking at B12 and folic acid..I've since read that if you are over 60 and female..which I am..have an autoimmine disease which my thyroid is,and take PPI tablets which I do.then you are high risk for B12 deficciency.. Then last week I had the BMS episode..and I can absolutely empathise with the swelling lips thing too...It was only when I googled that I realised that this was connected to B12..
I'm really hoping to get some answers next week and fingers crossed my neutrophild have gone back up( currently 1.3..)or I have news re B12.. Thankyou again.D..
I myself am 73 and believe I may have been hypothyroid since my third child was born 39 years ago. It makes sense now to me, looking back at symptoms and how I felt. It does seem strange (to me anyway) that you were taken off your meds for hyperthoidism. Sorry, I know nothing about neutrophils, does that mean it is only a temporary stopping of your meds till they try and sort you out?
I know PPIs are supposed to be not good for the stomach. I was prescribed them once and wouldn't take them as I read about B12 and PPIs. The doctor didn't seem to know about that aspect. My mouth problem, I believe, overlapped with both B12 and hypothyroidism, especially as it is so much better now that I am on thyroid medications as well as self-injecting B12 more or less every other day. Good luck, and let us know eventually how you get on.
Hi....So hypwerthyroid is less common and has a bit more of a dramatic onset than hypo I think.Basically you produce too much thyroxine that speeds up your metabolism..(you sometimes lose weight but sadly I didnt!)..Untreated can cause heart attack and Strokes due to too much adrenalin .( also causes extreme anxiety..).The meds Carbimazole are known to affect white blood cells,and can affect liver and kidneys but theres no alternative.You take them for around 18months then have a 50/50 chance of thyroid resetting to normal,or going back into freefall..in which case you have to have Thyroid gland removed or killed off with Radio iodine then you obvs have to be treated as hypo...I was taken off meds as my 18month was almost up and neutrophils are low..They were expected to go up a bit but instead have come down...hence all the tests..
Sorry for long txt..hope I havnt bored you too much!..ps meds make you put on SOOO much weight coz they basically wipe your metabolism..
Thanks for your support.D.x
Thanks for the explanation of how the meds work.
My friend was extremely hyperthyroid - I didn't know her at that time, and the consultant was so worried about her he used to ring her at home to see how she was. I think she had thyroid removed - well an op, so I don't know if all or some. She is not well at all now, terrible night sweats, lots of investigations, also diabetic. I think she mentioned to me levothyroxine, but hasn't been on it for ages. Had put on a lot of weight, now dramatic weight loss, doesn't look well. Someone else I know also hyperthyroid, had radioactive iodine treatment. I don't really know how she is as we only correspond at Christmas.
Take care x
Thankyou...I'm hoping my thyroid will behave itself now, and reset back to normal...I've got a 50/50 chance..and hopefully lose some of the weight I've put on due to meds!..,then just wait for blood ,B12 and folate tests next week and hopefully sort out neutrophils..Thanks again..Keep well.D.
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