BUrning Mouth Syndrome

[Lillian67]

Has anyone with a thyroid issue, I have Underactive thyroid and on 50mcg levothyroxine, over the last 6 weeks I've had Burning Mouth Syndrome, it started after a visit to the dentist and having a five day course of antibiotics, doctor thought it was oral thrush, had loads of different stuff to try and help, had blood taken and thankfully all was well there, it's been a very worrying time, but seemingly there's lots of people suffer from this syndrome, just wondering how anyone else has coped with this.

[annie-7]

I found this livestrong.com/article/4943...

Have you had your B12 level tested?

Or maybe an allergy to something the Dentist used? Lots of us have a problem with the adrenaline in the local anaesthetic.

[Lillian67 in reply to annie-7]

Thank you Annie, yes had all my bloods done B12 was one of them and thankfully all normal!! Seems to be very common, although I'd never heard of it before! It's a relief to know that other people have it too, if that makes sense!!

[shaws Administrator]

There have been several past posts regarding this phenomenon.

healthunlocked.com/search/b...

[Barrister]

I developed it after having a tooth removed. It was excruciating and I still get episodes of it even now, 6years on. Although at the time it started, I hadn't been diagnosed with hypothyroidism, I believe I already had it. When it was at its worst I found that sometimes chewing gum would help. Also, it seemed to get worse as the day went on. Clemmie

[Lillian67 in reply to Barrister]

Thank you Clemmie, yes I chew on Sugar and Additives free gum and that does help, your right it is excruciating, had all the blood tests done and they all thankfully came back normal, so probably just carry on in the hope that it will go!!!

[Barrister in reply to Lillian67]

Actually it was quite lucky that I developed it. Because I was spending so much time on my sore mouth, I noticed that several of my teeth had moved in position and when I pointed this out to my dentist he took so,e X-rays which showed that I had developed a cyst in my jaw, growing in between the roots of my two front teeth. Usually these types of cysts aren't discovered until they have replaced so much bone that the jaw breaks. So I was lucky in so far that my jaw didn't break. But yes, you just have to wait it out, dos,etimmetimes for year, I'm afraid. Clemmie

[sunnysunflower in reply to Barrister]

hi do you have an update? how are you now

[radd]

Lillian,

I had this together with horrid tastes and thick gooey saliva.

Guys Hospital has run numerous tests to try and identify the cause including ultra sound scans on r & l submandibular and parotid gland and others in face/neck area. Everything was normal.

Since optimising thyroid hormone and all nutrients, my burning mouth has lessened significantly, although I still suffer a few taste issues and the thick gooey saliva is still evident and very drying.

I have spent a long long time researching these issues and even had all my amalgam removed last year. I have found others in forums, etc with identical conditions but there appears to be no answers.

[sunnysunflower in reply to radd]

hi! do you have an update on burning mouth? is it better?

[radd in reply to sunnysunflower]

sunnyflower

Your interest is timely as I recently suffered COVID, and after stopping eating for few days I noticed distinct improvements in my oral symptoms.

I have since eliminated all carbs and started a candida program. Progress continues but sadly any reintroduced carbs (even milk sugars) induce symptoms again. I have read a month of candida treatment is required for every year you’ve had it. I’ve had oral issues since 2011 after starting thyroid treatment.

I think burning mouth syndrome covers a vast area and is caused by multiple factors including hormone imbalances. Since my reply (eight years ago) I’ve had more investigations both private and NHS that included MRI’s and CT scans with nothing identified. I also did an organic acids test which revealed a large candida load although I’ve never had classic symptoms.

[sunnysunflower in reply to radd]

Thank you for your reply! It’s so rare to hear from people on forums after this many years 🙏 Did BMS problems started after starting treatment for thyroid or your other oral problems? Cause i thought it actually helped to ease it I’m kinda scared cause I’m about to start medication this week.. Yes i think BMS always has a cause sometimes it’s just really hard to find it and if you can’t - i noticed for many people it’s anxiety or depression.

[radd in reply to sunnysunflower]

sunnysunflower

Haha, I’ve been around since the forum began, although initially under another very ill alter-ego.

My BMS started after I began treatment for hypo-Hashi in 2011 with Levothyroxine that I didn’t do generally well on. Other hypo symptoms improved after adding T3 meds four years later but BMS continued although in a slightly lesser state.

I began to convince myself it was the Levothyroxine causing my oral symptoms and tried sticking with Eltroxin but it didn’t help. This was a main contributory factor for switching to NDT, which eliminated any hypo lingering symptoms but sadly not my oral issues.

Now I don’t believe it was the thyroxine per se that induced BMS but the changes in hormone levels. I was extremely ill when eventually diagnosed with hypo, and didn’t address the autoimmune side until after introducing T3 and working with a nutritionist for several years.

BMS is more common in menopausal women and because doctors don’t have a drug to cure it, they dismiss it. I was even offered CBT which was useless for a dry mouth, thick gooey saliva, a continuous sore tongue and ulcers. At times the pain/burning was unbearable and my concerns regarding possible oral cancer were brushed off because I now had a diagnose of BMS and oral dysaesthesia.

Further recent scans have finally convinced me there is no tumour and my improvement with diet adjustments has been encouraging. I would encourage you to replace any deficient hormones adequately as they are the very foundation for wellness and if BMS continues, then look outside the box for other causes.

For example I recently detoxed a high mould count over a year that has completed eliminated previous sinus issues and postnasal drip. I now learn the mycotoxins produced by mould also overlap with some fungals. Keeping my fingers crossed for further mouth improvements 🤞.

[sunnysunflower in reply to radd]

thank you very much! I hope you get to the bottom of everything soon as well x

[puncturedbicycle]

I was 'diagnosed' w this because consultant was at a loss. I was referred because of dry gums. My lips were sticking to my gums at night and had become a bit sore and metallic-tasting, dentist thought gums didn't look glossy like they should and she noted some striation on gums so wondered if it could be lichen planus. Consultant was, predictably, a bit of an @rse and it seemed to me burning mouth syndrome was his coded language for not knowing/caring if/what was wrong.

I've since been diagnosed w vulvar lichen planus but no idea if oral lp might be the issue.

I'm lucky that my issues were not excruciating and I don't mean to downplay the actual discomfort you're all going through, I just wonder about the legitimacy of this half-baked dx. Is anyone here receiving actual treatment for burning mouth syndrome?

As usual, I wonder how many people w this dx are of the female persuasion.

[Katrinka]

I had burning mouth syndrome last year, and the cause turned out to be a severe zinc deficiency. The zinc deficiency also caused my taste buds to go crazy, so all food tasted vile except for a few sweet things like cake. It even impacted my response to textures, triggering a severe gag reflex. I was trying to recover from surgery (the zinc deficiency also caused a failure to heal) and spent three months going between the hospital and a skilled nursing facility. After months of not being able to eat or drink anything, I was finally put on TPN (nutrition through an IV) to sustain me. I was finally diagnosed with zinc deficiency when I broke out in a painful crud all over my face, hands, feet, and other parts. I went running to my dermatologist and she figured it out. She got together with my surgeon and they dumped a lot of zinc into my TPN,. Within two weeks I was eating, my surgical wound was healed ( after six months on a wound vacuum), the crud was gone. It was remarkable.

Anyway, have your zinc checked. Apparently that is not something that is normally checked.

Oh, and Hi. I have been a lurker here for several months, but never posted before. You all have been a fount of information for me, so I hope this contribution helps somebody.

[BeansMummy]

I have this

My dentist told me that it's due to my age (he nearly got a slap for that). However, it seems closely related to low B12 in my case, and was eased once I was given B12 injections - I always know when my next injection is due as my mouth problems start up.

I have also had a lot of gut issues and, amongst other things, have to avoid sugar. If I lapse, the burning starts up again.

[Gcart]

Bit late just seen your post . I suffered for years with burning mouth . Since diagnosis TT pap carcinoma .

When taking levo only it returns but I find as soon as I get back on T 3 it settles completely.

I am trying to get sorted and will fight to get T 3 back prescribed by someone/anyone!!

Its a scandal , burning mouth is not my only symptom on T4 only.

Life is hell without the addition of T 3 which I source myself from abroad.

So hope thus helps , maybe sort your levels out

[BethanyOxe in reply to Gcart]

I want to cry Gcart reading your post. I had TT due to pap carcinoma dec 2018...been on synthyroid since feb 2019 was on levo. Ever since does increase had lot weird symptoms....ringing in ears..fullness ear and popping. Electric shock pains in body that was slightly noticeable now are constant since last dosage increase...i took antibiotics almost month ago for sinus infection and 3 days into the augmentin bad burning itching in mouth...roof of mouth burning and tongue with metallic taste. I did develop thrush ..took 2 antifungal and cured thrush but still burning roof of mouth in buccal cheek and tongue...metallic taste not bad like used to be...since those antibiotic i still have burning mouth with new sharp pain in joints and muscle aches. Endo said tingles and pin needle wouldnt be thyroid related ....my calcium is normal. My tsh t3 t4 all within range...im sleepy all the time and got normal labs ....i think its the medicine. Life is hard now...

[sunnysunflower]

hi do you have an update?