Has anyone had burning mouth syndrome with under active thyroid?

[Kay82]

I think I could have burning mouth syndrome has anyone had this with under active thyroid It’s so sore anyone got any tips to help the pain ....

[Wetsuiter]

Have you had folate tested?I had a very sore and sensitive tongue until i start taking Super B Complex.

[Kay82 in reply to Wetsuiter]

No I’m going to ask more questions when I’m back at the docs next week so did it just go when you started taking them, did yours get worse the more tired/exhausted you felt

[Wetsuiter in reply to Kay82]

i dont remember it getting worse. The Dr wasnt any help to be honest. it was coincidence that, amongst other things, my folate looked a bit low although in range, so it was one of the things I decided to improve (possibky at the suggestion of Slowdragon or Seasidesusie. When tracking symptoms, i made the connection.

[jamesal0]

Just the tip and sides of my tongue are always burning to some extent or the other. I'm Hypo. These days I self medicate NDT, Levo and B12. I think my tongue thing is also gluten, related, which I don't intentionally eat but you cant help getting glutened from time to time when eating out.

[olgabb in reply to jamesal0]

Same thing with me. Turns out to be Eds and mcas. Eds causes the hashimotos

I was lucky w ough to have a lady say the same thing to me one day. She asked me “ are you or were you double jointed as a kid” and the rest is history

[norwood1]

I had a very sore tongue similar to yours several years ago. Burning, sore and felt raw when trying to eat. I was not hypo at that time. I was so tired and exhausted and just felt rough at that time. After blood tests I was put on folic acid and B12 injections and tongue improved dramatically within a week of being medicated and eventually back to normal. I was diagnosed with pernicious anaemia. I am still on folic acid and B12 injections years later. Wishing you well with your GP appointment.

[pennyannie]

Hello Kay

There doesn't appear to be a full understanding of Burning Mouth Syndrome, sometimes it's called " glossodynia " or " neuropathic pain " and happens when there is damage to the nerves.

Some possible causes can include :- hormone changes - stress, anxiety and depression and problems with your own immune system.

Medical conditions that can cause BMS :- dry mouth - acid reflex - thrush - nutritional deficiencies ( iron, B12 or folic acid ) - diabetes - thyroid problems.

Anyone can have BMS but it is more common in middle aged or older women during the menopause.

[Kay82 in reply to pennyannie]

Might get more answer this week from docs I have hypothyroidism but being tested for anti bodies for Hashimotos, thanks for your reply

[Rosie2m]

Hey, both me and my dr believe this is what I am suffering from and have had for 5 weeks now, I’ve literally just had a blood test yesterday as she believes it could be my vitamin levels causing it. When I asked her what I could do to help it in the mean time she said there really isn’t much, stay hydrated, avoid acidic and spicy foods and she said I may find using a mouthwash such as corsodyl could help but some people find it makes it worse so it was up to me if I wanted to try it. The only real treatment is finding the cause but obviously it’s not always as simple as it sounds. Xx

[tangolil in reply to Rosie2m]

Corsodyl will stain your teeth after a while and is not advised for lengthy treatment (especially without advice from medics or dentist). I was advised warm salt water mouthwash to be sluiced in the mouth at NIGHT with no food or drink to follow. This has helped me tremendously with my burning mouth syndrome and it is also excellent in keeping gums healthy. I hope it helps you. Best wishes.

[Rosie2m in reply to tangolil]

Yes, tbh I think she was just saying a few things that may/may not help but without trying I wouldn’t know. She said really there’s not a lot that can be done apart from addressing the root cause. The salt water sounds like a good idea to try and also harmless if it doesn’t work so I’ll give it a go, thankyou! I’d definitely be more inclined to listen to a dentists advice on mouth conditions xx

[Lora7again]

Are you a smoker?

[Kay82 in reply to Lora7again]

No I don’t smoke

[Lora7again in reply to Kay82]

Sorry I assumed you were because of the stain on your teeth.

[Fruitandnutcase]

I suffer from burning my syndrome. There really doesn’t seem to be much anyone can do about it. My dentist referred me to a consultant at our local teaching hospital - mainly to make certain that it wasn’t anything sinister -the consultant poked about and did blood tests to check for vitamin deficiencies, think he was looking at B12 but nothing showed up.

I use Himalaya Botanique toothpaste that I get from Amazon, it has no nasties in it I think my mouth can be irritated by toothpastes with SLS in them. I also used Gengigel mouthwash. It’s a very gentle mouthwash and doesn’t irritate it. I also rinsed my mouth out with salt dissolved in warm water and found that good.

I find burning mouth to be very miserable and debilitating and it’s amazing that no one seems to know anything about it or to be able to curate. I don’t know about yours but mine comes and goes why though I haven’t a clue.

[Kay82 in reply to Fruitandnutcase]

Mine seems to go worse as I get more tired, if I get a good nights sleep when I wake it isn’t there as the day goes on it gets worse and worse to the point by bedtime I have to take pain killers because it’s that painful

[Christabel in reply to Fruitandnutcase]

Quite agree, it's torture. No one tested for anything and it was never mentioned that anything could have any influence on it - in fact, I was told firmly that nothing influenced it!! I've had it for six years.

I'm sure that if it affected mainly men, there would be all sorts of research, but perhaps that's a bit cynical.

Malnutrition is an obvious risk.

I was told by one consultant to avoid anything with benzoin or cinnamon, but Gengigel contains cinnamon and it helps you - which is good.

[Marz]

In your last post it was suggested you have B12 - Folate - Ferritin - VitD tested. When you have the results start a new post. B12 is good at 500+ - Folate & Ferritin good around mid-range and VitD 100+

Low nutrients can also be the cause of low mood - especially Low B12. Ensure you always obtain copies of test results with ranges so you can monitor your progress and check what has been missed ...

[Kay82]

Yeah I’m back at the doctors this week I’m going to ask

[Marz in reply to Kay82]

... do you mean you will ask for the tests - or the results ?

[Kay82 in reply to Marz]

I’ve not knew much about all this it was quite confusing I have hypothyroidism but had the autoimmune test for Hashimotos I’ve been reading more about it for more understanding I’m also going to ask about my vitamin levels etc can you ask for a print out of all results

[Marz in reply to Kay82]

Yes you can ask for a print-out. Also check your surgery has on-line access to results. Take some ID with you. So do you have Hashimotos ?

[Kay82 in reply to Marz]

I’ve not received my results yet but a few things keep pointing to Hashimotos it’s took a while to understand it all

[Marz in reply to Kay82]

Yes we have to read and read to help the understanding as you cannot rely on your GP ..

[McPammy]

Yes. I had it for months and didn’t know what was causing it. I have Hashimotos and a poor converter T4 to T3 confirmed by blood tests and positive DIO2 gene test.

At the time of the burning tongue I had my bloods tested I was too low in ferritin and B12. My vit D was fine and folate was a little low but in range.

I was given B12 injections and ferris fumerate 210mcg. Soon after my burning tongue went. I still had thyroid issues though. And went on to finally be prescribed T3 medication which has been nothing less of a miracle for me.

[meme]

Fluoride toothpaste makes my mouth very sore. I get Truthpaste or any other from health food shop without it.

Do not have very hot drinks or very acidic drinks or food or chilli.

Get a diagnosis from your GP.

Hope it gets better soon.

[Blondiejayjay]

Hi I have Hashimotos and have a burning mouth.

The cause of mine is Oral Lichen Sclerosis. It is thought to be autoimmune. I have steroid tablets to dissolve and rinse mouth with. Rinsing with warm salt water is very soothing and most effective. Avoid using toothpaste with ‘sodium laurel sulphate’.

I was diagnosed by biopsy at Maxillo Facial unit.

Low vitamin D is another cause as is low folate and vitamin B12. If your GP is checking your vitamin levels she/he is doing the right checks.

Good luck

[Barrister]

Yes, I had it for years. It started 10 years ago after I had a tooth removed. It lasted for about 7 years and even now I have episodes of it. I was recommended by a hygienist to use Enzycal toothpaste and Gengigel gel and mouthwash and it does help.

Clemmie

[SlowDragon Administrator]

Looking at previous post

You were left on only 50mcg Levothyroxine

And now stopped taking Levothyroxine completely?

Likely extremely hypothyroid if this is the case

Bloods should be retested 6-8 weeks after each dose increase in Levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Low B12 and folate likely

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

[olgabb]

Do you have Ehlers danios syndrome and this could be mcas allergic reaction to foods.

[dbrowning02]

I got it during Christmas, there is a great Facebook page with lots of people like us suffering. Mine seems to be gone now and since I only have had it the one time not sure what helped but these are a few of the things I did. Switched toothpaste and mouthwash to Thieves brand and did oil pulling with coconut oil and oregano. Seems having low thyroid, hormonal imbalance and stress were the 3 I had on the list of possible causes but they really have no clue. Hope this helps a little.

[Hidden]

Hi zinc deficiency is one cause of burning sore tongue. Zinc and vitamin c lozenges or berries or vitamin tablets eg boots UK can improve skin conditions and help sore throat. I have found help with sore throats from taking a teaspoon of cider vinegar in a tumbler and gargling. It can kill bacteria at the back of the throat and rely helps the symptoms. I have found immune resistance has been helped with a teaspoon of coconut oil on a biscuit . It can after virus infection. It kills off bacteria and wards off viruses even the papillary virus affecting the thyroid and the cervix . We don't know if it can prevent cancer but it is used in Australia for some cancer. Hope the burning tongue settles down it must be hell!😜