I posted most of this on another thread but thought I'd start my own thread in case someone found it useful.
Sometimes the route to diagnosis of B12 deficiency can involve other health professionals besides GPs.
If you have a GP who won't listen to your concerns about B12 deficiency maybe other health professionals will.
Most of us have regular dental examinations and I've often wondered how many of us have B12 deficiency spotted by a dentist. Would be interested to hear from anyone whose deficiency was first spotted by a dentist.
Some dentists might be able to offer telephone or online consultations during pandemic. If they think there are signs of B12 deficiency, maybe worth asking them to write to GP.
Here's some links about oral signs of B12 deficiency
Pale yellow tongue
This newspaper article mentions a pale yellow tongue as a possible symptom of B12 deficiency.
I've tried unsuccessfully to find a research article that lists a pale yellow tongue as a possible symptom so please post a link if you find one.
I'd be interested in hearing from any people with experience of working in a dental practice who could tell me if dentists are trained to spot B12 deficiency.
Possible signs of B12 deficiency in mouth include
glossitis (an inflamed tongue that may be sore and red)
splits in tongue
sore spots at corners of mouth (angular cheilitis)
ulcers in mouth and on tongue
(think mouth ulcers are known canker sores in US)
painful mouth and tongue
tingling in mouth and tongue
itching
changes in sense of taste
changes in papillae (tongue cells)
Scientific article about Glossitis and b12 deficiency
That's very interesting Sleepybunny! I've 'suffered from' the pale yellow tongue for as long as I can remember and had never considered it may be down to my B12 def, as I'd thought the tongue issues were more about glossitis or geographical. I remember as a kid being fascinated by my mother's tongue which looked like it had been hacked up!! 😜😀
I've had cracked, sore corners of my mouth on and off for years before starting b12 treatment. It was very noticable to the dentist as the corners of my mouth would bleed when I tried to open my mouth wide enough for them to treat me, they never suggested what it could be however. I know they are trained to look for signs of cancers in the mouth though so it would be beneficial for their training to extend to other medical issues!
Look up "angular cheilitis" - I had this, long before any other symptom of B12. Preceding every other problem- so much so that I did not recognise the connection until I had the loading dose and saw improvements. Sore red peeling skin/ splitting and bleeding especially at corners of mouth making it hard when you have the yawns, or when you sneeze or laugh. It did not go completely: "cyclical", like so many of of my ongoing symptoms, meaning that unless you take photos of the visible symptoms, you can wait eight months to see an expert -and have nothing to show them !
You do need to have something to show them. Many photos or records and you run the risk of getting called obsessive, none and you might be seen as a hypochondriac. Plus - there could be a causal link that you cannot possibly make without tracking occurrences. Look for a pattern. I still keep this up -but have never found any rhyme or reason.
I was sent to an Oral Medicine consultant, who took swabs and tried to grow cultures: Staphylococcus or candida. He was sure that it was staphylococcal in origin but nothing appeared. It did respond immediately to treatment: nipple cream ! Needs to be kept free from any chance of reinfection, so apply singly from a teaspoon twice a day.
Just recently, I decided to see if I still needed it, having made so many improvements gradually over six years: I do -it still returns almost immediately. I've ditched the daily multivitamins and minerals for the same reason. Unfortunately, it now looks highly unlikely that I will be able to have a blood test to see how I'm doing with that.
Sleepybunny - I had bleeding gums (and hair loss) which did not improve with B12 alone. GP added ferritin and folate treatment as both were low (not out of range) and they did improve. Again, cyclical for quite a while and ferritin and folate erratic- but eventually (dare I say it ?) gone. I will let you know whether stopping the multivits brings a return or not. Only way you can know for sure. I was unconvinced -but tended to see everything as B12 deficiency problems then. Even the thumping heart, which turned out to be ventricular ectopics, does not have a known cause, so my head says "probably B12 deficiency then".
I never got any ulcers -but plenty of abscesses causing rows of loose teeth, some occasionally having to be removed, gum infection, jawbone infection, reactions to antibiotics. Saliva gland infections caused by saliva duct strictures. All cyclical -even the very loose teeth can often tighten back up -and all much improved over time.
I had angular cheilitis for many years and in the end it became invisible to me. I was sent to an Oral Medicine consultant. Use of nipple cream (if not allergic to lanolin!) - do not double-dip to avoid reinfection, better to use a small amount from a spoon. I used this twice a day and within a week or two it went. Very very rare symptom now. I hope this simple answer is of help to others. Worth a try.
Burning tongue that feels too big for your mouth, sometimes with pie-crust edges (teeth marks). Mine often coated- yellow, green, white: none of these suggest good health !
Oral Medicine consultant also did not like the deep groove in the centre.
He also did not like me self injecting every other day.
I once met a senior ENT consultant who confirmed continued B12 deficiency (despite NHS injections) just by looking at my tongue. He also encouraged me in self injecting every other day -told me that it would take a very long time to recover, to persist with the treatment. He was absolutely right, rather lovely - and had read every word of my GP's detailed report.
There are certainly people out there who are B12 deficiency experts - but there is an element of luck involved in finding them !
Hi Sleepybunny, I was a tutor of dental nursing and yes, dentists should know about B12 deficiency.Years before my B12 symptoms became more obvious, I'd complained to my dentist that the edges of my teeth were too sharp.
He said " Its not teeth, your tongue is swollen " and advised me to go to my doctor to check for anaemia.
Unfortunately I feel dentists, not surprisingly , think of iron deficiency anaemia first.
I went on to have angular cheilitis, geographic tongue and loss of papillae ( tongue smooth and shiny ) although have never had yellow tongue.
Have to say in several years of dental nursing I didn't notice any patient with yellow tongue, so perhaps that's not the most common sign of B12 deficiency.
Again various dentists advised me to go to my doctor but unfortunately it is unusual for a dentist to liaise with the GP for seemingly more minor oral conditions.
Despite self injecting B12 weekly, sore tongue due to swelling remains a frequent bugbear of mine.
It would be great if dentists would officially refer patients to their doctor citing suspicion of B12 specifically.
"I went on to have angular cheilitis, geographic tongue and loss of papillae"
I had all of the above plus other oral symptoms and I commented on it to dentist and also asked about B12 deficiency...I was told that geographic tongue was a benign condition of unknown cause.
I just wish I'd known at that point that it can be caused by B12 deficiency. These days if someone comments on splits in their tongue, I suggest they get their B12 levels checked.
What's interesting is that the splits in my tongue have partially healed after several years of B12 injections. I don't think they will ever fully heal though, due to the length of time I was untreated.
For me it is one of my "barometer" signs for folate deficiency and can respond either way in a matter of hours. I guess I keep my system topped right up with B12 so that's not an issue.
I was told maybe 30 years ago that my tongue was too large. Now I wonder if that was a sign. And i had the mouth sores for many years maybe 10 maybe more. What a crazy condition b12d is. It seems nothing should be excused from it.
I was just at my dentist and knew my tongue reflected my current dip into a greater deficiency. So I showed him and the hygienist to train them what to look for. They were very thankful.
After a dx of CFS in my early 20s for having chronic B12d symptoms but never having my B12 levels tested, I was written off by any subsequent GPs and couldn't get any further blood work or other tests done.
Eventually my dentist recognised that I shouldn't have teeth dying, a horribly ulcerated mouth, angular chelitis and the edges of my tongue turning "frilly" where it was so badly split, as well as the fatigue, brain fog, etc and, after being stumped once again with the CFS dx at my surgery, he referred me directly to the hospital and an oral something clinic.
They also failed to recognise the problems and were going to biopsy my tongue and mouth sores!
It was at this point a locum pharmacist saw me when I went to see them, desperate for some targeted pain relief, and gave me a piece of paper with "B12 deficiency" written on it ("you won't remember otherwise") and told me to take it to the hospital and not give up until I got treatment for it!
By the time they did tests and agreed that was the problem I had a "wooden tongue" and was struggling to operate my throat too.
By the time the GPs then insisted on repeating the hospital's tests (!) and finally treating me I could barely walk or talk.
Thank goodness for my dentist and very much thank goodness for the locum pharmacist!
A subsequent locum pharmacist nearly undid the good work by refusing to let me have my second lot of 10 ampoules in a fortnight, that I had been given on prescription so I could SI. He wanted to get my Dr investigated for supplying them!
Unable to talk, I broke down in tears of desperation and anguish and fled from the shop. Thankfully one of the shop girls, who knew me from being a customer for several years, took my prescription out of the drawer unseen, left the shop by the back door and came out to the High Street to find me. She said, "I know how much you need these - don't worry, it's his last day!"
And thankfully the next stand-in pharmacist was fine with me having my next script.
Much better to just buy my own than constantly run the gauntlet of people wielding power and potentially crippling me!
Thank you so much for all your help and inputs over the years! You have made my journey through my health issues so much more doable - it's worth everything to know there is someone so kind and caring and knowledgeable here.
omgosh, wow that's terrible. But thank goodness for that pharmacist! A pharmacist diagnosed the reason for my kidney failure. Fruit and 800mg Motrin taken together.
I actually have got a photo of my yellow tongue. Although the Oral Medicine consultant tried, he could find no reason for obvious tongue and mouth problems: he tried several times to grow cultures and was convinced of staphylococcal infection - or maybe candida. Nothing . Will let you know if anything ever comes of this, awaiting another appointment.
Here's a coincidence: I am nearing completion of another self portrait (really do need to get out more - or at all !) called "yellow grey days" - when everything is yellow grey: hair, skin - decided not to include tongue !
Great post Sleepybunny!! I definitely have the mouth sores and my teeth break easy. Sore bleeding gums. But all is clearing up with the b12. My dentist didn't know what was wrong with the sores on inside cheeks.
Me too Sleepybunny. they blamed infection etc. One dentist tried to make me finance a deep antibiotic cleaning for over 5 grand. I heard them trying to sell that same package to every client that came in while I was there. At least three people, so I knew it was a scam. They tell you your gums are bleeding and infected below the gun line and show you a video of what they say you have to do. And after that they send in a finance person. RED FLAG!!! so beware! I'm just so relieved I know I have PA now. It clears up so many unexplained things.
Thanks for your response. There are so many symptoms. My dentist has little idea about B12 deficiency. He might know more now but B12 deficiency is so far off everyone's radar. It is very perplexing how it's not recognised across the medical universe.
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