Hello, My first time here, searching for help and info. I have what seems to be "burning mouth syndrome" though it should be called Burning Tongue syndrome as it is the tongue it affects, at least in my case.
It is extremely painful and I have had it for a couple years now. I have tried all manner of things to find out the cause but all with no luck. I have had dental appts and been referred to the oral consultant who doesn't know what it is (nothing to see most of the time) but suggested it may be Burning Mouth Syndrome (BMS).
As B12 deficiency can cause tongue issues and I am desperate for help, I have been trying to get my B12 properly tested but the GP has not been so amenable. I wanted to have the MMA test done because I know that the serum B12 test not exclude PA but the GP says my other blood tests on the full blood count would show signs suggesting such low B12 or PA. I am not sure if that is completely true?
I received the blood test results, all of which are within the normal range. Do these results rule out PA or B12 deficiency?
My serum B12 is good. I take a supplement but I did stop it for a few days before the test. I see that some of the results are close to being outside the "normal range"- could that be suggestive of B12 deficiency? I have put a STAR in front of the ones that might be suggestive perhaps?
UK guidance on B12 deficiency suggests that patients with the symptoms of B12 deficiency should be treated even if serum (total) B12 is within normal range. It's possible to have deficiency symptoms with above range serum B12.
Blog post about being symptomatic for B12 deficiency with an in range serum (total) b12 result.
You might want to look into Functional B12 deficiency. This is where there is plenty of b12 in the blood but it's not getting to where it's needed in the cells so the patient develops deficiency symptoms.
Tests such as Active B12 (holotranscobalamin ), MMA and Homocysteine can help to diagnose Functional B12 deficiency.
Link about "What to do next" if B12 deficiency suspected
I usually suggest that UK forum members find out what B12 deficiency guidelines are used locally by ICB (Integrated care Board) or Health Board.
If you can't find them online or in forum posts then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
See blog post below if you want to know why I suggest doing this.
Thank you very much- there is a lot of information there. Ia sked for iron to be checked but when I receioved the results it was not on there. the GP said that some of the other tests in the full blood count would be suggestive of an iron issue if there was one.
Do you think that my high-normal level of Serum B12 can exclude deficient B12? I know that test can not really exclude it but as the number is nearly at the top of the normal range is it less likely to suggest a deficiency or am I just as likely to be deficient if for example it was 200? I tried very hard to get the other tests but she would only order these.
>Do you think that my high-normal level of Serum B12 can exclude deficient B12?
No, it cannot rule it out with certainty. The supplements will likely affect the result too. My serum B12 was 636 when I first reported my neurological symptoms, suspecting B12 deficiency. I had supplemented before the test.
Not at that time. I was diagnosed with the imaginary condition of a "B12 overdose" and told to lower my B12 supplementation to 1/30th of the minimum dosage advised by nutritionists for vegans. They had no idea what they were doing. I suffered 2 years of worsening neurological damage until I realized their error. Eventually my self-diagnosis at that point of a severe B12 deficiency was confirmed by a specialist and injections started. It took 5 months to turn a corner and I have lingering neuro symptoms.
"Do you think that my high-normal level of Serum B12 can exclude deficient B12"
I agree with Technoid that a result at higher end of the normal range cannot definitely rule out B12 deficiency.
I had dementia symptoms and spinal symptoms and over 50 other typical symptoms of B12 deficiency with serum (total) B12 results as high as 500 ng/L. I had had a below range serum B12 result in past.
This summary from BSH Cobalamin and Folate guidelines includes the comment
" In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
See Point 5 in the letter writing link I posted in my first reply. It's about writing a letter to GP when symptomatic for B12 deficiency with a normal range serum B12 result.
Folate
Have you asked your GP if you would benefit from taking a folate supplement with the RDA (Recommended Daily Amount) in it? Local pharmacist might also be worth talking to about this. Your folate level is about a quarter of the way up the range. Maybe look at your diet and increase the amount of folate rich foods you eat.
"the GP says my other blood tests on the full blood count would show signs suggesting such low B12 or PA"
"Ia sked for iron to be checked but when I receioved the results it was not on there. the GP said that some of the other tests in the full blood count would be suggestive of an iron issue if there was one."
B12 deficiency (and/or folate deficiency) can lead to enlarged red blood cells (macrocytosis).
Iron deficiency can lead to smaller red blood cells (microcytosis).
If a person has both B12 deficiency (and/or folate deficiency) with iron deficiency then the red blood cells may appear to be normal size on FBC (Full Blood Count) because the effects of the iron deficiency are masking the effects of B12 deficiency (and/or folate deficiency).
At very least I think your GP should test your ferritin levels and preferably a full panel of iron tests. I'm not a health professional.
Maybe you could get iron tests privately and if results show anything significant, maybe GP would agree to repeat iron tests on NHS.
I found links about Burning Mouth syndrome that suggested deficiencies in iron, B12 and folate were potential causes. Maybe if you showed GP one of these articles they would test your iron levels.
It's possible to have PA with normal range serum (total) B12.
Have a look at the link about testing PA in my first reply. It is possible to get these tests privately.
Is there a family history of PA and B12 deficiency and auto immune disease?
Maybe you could ask GP to repeat the blood tests in a few months time to see if results have changed.
Have you compared these results to older test results in your medical records? Results that are increasing or decreasing may be significant even if still within range.
Referrals
Burning sensations are suggestive of nerves being affected.
Peripheral Neuropathy (damage to peripheral nerves)
Seeing a specialist is no guarantee of better treatment but hopefully you would get one who shows real interest. My experience with several neurologists was that B12 deficiency was not well understood. Looking back and seeing how typical my symptoms were, I struggle to understand how they missed it.
Do you have any other symptoms besides burning mouth?
Have a look at the symptoms lists I posted in my first reply.
If you search online for "NHS burning mouth" that should show some links.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I am trying to make a phone appt to request the vit D and ferritin tests. I've already called twice today, no appts available so I have to keep calling back to check. I am going to tell them I have symptoms of B12 deficiency (which I do). I will go from there. I may then send a letter as it might be the best way to get things done and to share the information as we only have a very short appointment and it is impossible to get everything in. Unfortunately, I am not able to pay privately to have the tests done.
My mother has had severe B12 deficiency but she also takes omeprazole and has done for a long time, so I am guessing it has come from that. Regarding symptoms, I have 15 symptoms from the list on the first link you sent. There could be others that are undiagnosed.
As well as ferritin, maybe your GP could do other some iron tests. See link about iron studies in my other reply.
"My mother has had severe B12 deficiency but she also takes omeprazole"
PA and Coeliac disease are two auto-immune conditions that can lead to B12 deficiency and they can run in families.
Does your mum have any relatives with PA or Coeliac disease or other conditions that can lead to B12 deficiency such as Crohn's disease.
Was she ever checked for PA and Coeliac disease?
Does your GP know that there is a family history of B12 deficiency?
Some forum members here have been put on omperazole for high stomach acid and have then found out that they actually have low stomach acid.
The symptoms of high stomach acid and low stomach acid are very similar.
low stomach acid - hypochlorydia
no stomach acid -achlorydia
I hope the possibility of low stomach acid level was checked in your mum's case.
In pernicious anaemia, hypochlorydia (low stomach acidity) is common. I think this is due to the loss of gastric parietal cells that produce stomach acid.
I think you are on the right track and defo follow through the advice above. Ask if you can record your consultation and listen back to it carefully - good medical professionals have no issue with being recorded those who know they are on thin ice do!
I have developed similar symptoms while taking B12 and when I contacted my specialist he has asked for a blood test to check vitaminD, folate and ferratin so I trust his judgement as he specialises in vitamin and mineral deficiencies. So I would get these checked.
Best of luck and let us know how you get on. Be clear about what you want from the meeting
For example if you want tests and ask directly for that EG “I would like my Vit D, folate and ferratin (iron) levels checked please to see if that could explain my persistent sore tongue” keep asking at least twice and if no success ask the question “if you won’t test my Vit D, folate and ferratin can you explain the cause of my persisten sore tongue?” If they cannot explain or they talk rubbish then repeat your request for the test - I find this technique tends to bear results especially when I smile each time I ask the question. 😂
As a complete aside Merryl Streep does a lot of campaigning for underprivileged Womens rights and I saw a video when she was asked a question which I thought was offensive and rude. 🙄 She responded and smiled 😁 as if she was delivering a thank you speech while putting the reporter in his place with utter dignity on her part. I must find the video!!! Prepare, smile 😀 and remember you are RIGHT to seek your solution.
I suggest putting a request to record an appointment into a brief letter to GP well in advance of appointment and point out any symptoms that mean you need to record.
Patients who have problems with memory, fatigue, concentration would have a good case to record on disability grounds.
I sometimes found it helpful to put queries about tests, diagnosis, treatment etc into a letter to GP. I feel it's harder to ignore although some GPs may find it irritating.
May also be worth taking a supportive person with you. My impression is that GPs are kinder if a witness is present.
I have asked very directly, especially the last time. I was persistent too. I will look for the Merryl Streep video- sounds like a little bit of inspiration
Burning Mouth Syndrome (BMS) : there is a good clear information slide presentation that Marwan Ramadan made for students at the university of Mogul. It explains that this condition can be secondary to issues with B12/folic acid/iron, autoimmune diseases, salivary gland disorders etc - plenty there to get your teeth into !
I have daily burning tongue - not only on waking but on/off throughout the day. It is now my most common and reliable symptom, and I now believe I may be stuck with it; not severe but a constant. Mine being secondary presumably to one or two or all of the above - since I have the lot.
I am seeing an Oral Medicine consultant who has helped me to control angular cheilitis (split, sore, bleeding corners of mouth) and is now trying to help with this and recurring salivary gland problems. Tests for candida or streptococcus cultures not found.
I have come a really long way since my first desperate posts about six years ago. My frequent B12 injections for functional B12 deficiency have given me back a life - not quite as it was, but that's okay.
Functional B12 deficiency was diagnosed by GP and confirmed by testing laboratory - test for MMA, because I was still deteriorating after B12 deficiency detected and treated with B12 injections: MMA raised, renal problems ruled out as cause, later SIBO ruled out as cause. MMA remained raised, in spite of 2 B12 injections a week, for about three years. Folate and ferritin took two years to get to useful and stable levels. Vitamin D : on prescription with raloxifene as osteoporosis of the spine was found - which has lately improved by treatment and plenty of walking to osteopenia ! Onward and upward.
Still looking for answers, with the continuing help of the NHS. I'll let you know if I find out anything that can help. The answer to angular cheilitis control in my case was simply to use nipple cream on mouth twice a day -nothing else, but I wouldn't have got there alone ! There is plenty of valuable help available but needs a good supportive GP to start the search.
Start by watching the slides. The BMS is, don't forget, just a set of symptoms - a clue to your answer. A start. It may take some time.
Oh you poor thing- at least your sense of humour hasnt been lost! I have not had chellitis luckily. coincidentally, with the oral consultant i saw, I was cancelled out on also, twice, third time lucky Just curious, have you only ever had the serum B12 test (the normal blood test) ?
No - initially just the B12 serum test, which was just below range.
After that, B12 injections started at the usual frequency of 6 loading, then 1 maintenance injection every 3 months. I continued to deteriorate.
When MMA was tested and found to be raised, I was given the functional B12 deficiency diagnosis - and 2 injections a week.
Active B12 (unsurprisingly) high.
Intrinsic factor antibody tests (IFab) -I've had three of them, I think- all negative.
Gastric parietal ab - negative.
Homocysteine - "normal".
A lot of conditions ruled out over six years by various tests, scans and -oscopies : bowel cancer, coeliac disease. SIBO, IBS, exocrine pancreatic insufficiency (EPI) etc.
DNA - no genetic cause found for the raised MMA. 6th test was within range.
Gastroscopy showed "flattened mucosal pattern at D1 and D2" and "patchy gastric metaplasia".
24-hr heart monitor showed "ventricular ectopics". Now rarely a problem.
GP regularly monitored my folate, ferritin and thyroid for a few years until stabilised. Once I had my diagnosis, she stopped checking my B12 serum level: no point.
Thank you. I found the slide presetation you mentioned. It had some interesting points. One person had the sore area of the tongue almost exactly where and same size as I do though mine can rarely be seen except every now and then the area turns white.
You know, I get corner of my mouth split symptoms. I believe it seems to happen when I am in need of another injection. It heals after I inject B12. I have also been getting a mild burning/tingling sensation and I wondered about that. does your burning sensation goes once you inject?
I have recently given up charting symptoms daily - since no discernable pattern has emerged in six years ! Can't say I didn't try !
Try using nipple cream. As long as you aren't allergic to lanolin (in sheeps wool), get the 100% version - although expensive it is very thick and not much required, otherwise you start to look a bit rabid ! I use it after cleaning teeth, once in morning and once at night. This prevents recurrence as long as I don't forget. Oral medicine consultant said that other salves or creams can harbour germs, so only use this. He suggested to use it from a clean teaspoon each time and no double-dipping - to prevent transferring any infection. He has tried several times to grow cultures from swabs - but found nothing.
If I stop doing this, problem returns within 48 hrs, so not admittedly a cure.
I do remember skin on hands splitting - between fingers, at sides of nails. This no longer happens.
Nails used to split too - go thin and brittle, pressure pain in nail-beds (thumbs), vertical black stripes (dried blood), delaminating surfaces. Now nails just go a bit cobbled/ridged/pitted on injection day - nothing dramatic or painful.
Two years ago I had burning tongue for 3 months or more. After one misdiagnosis I was correctly diagnosed with PA. The loading shots soon cured my tongue (as well as improving stamina and curing tiredness).
I have burning mouth syndrome, going on 6 years, symptoms are easing up. Check out an expert MD on this topic. Susan Sklar MD in California, USA. Website is sklarcenter.com. She has free a free ebook on her website and you can see several youtube videos about burning mouth. B12 is one possible deficiency as well as others, or a hormone imbalance. Most doctors do not know anything about this, so you may have to be your own researcher, and try healthy supplements and eating. Keep your own records and see what helps you. Good Luck.
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Blood results as requested on my other thread
Blood results all \"normal\" still feel rubbish
MCV and supplement question 
Problems with a sore and poisonous tasting mouth.
