Burnt tongue sensation

[Mitch27]

Hi guys..I have hashimoto's and I'm on Thyroid S. For quite a while now I've had this burnt tongue sensation and I think it's linked to the NDt but not certain. Some days it's much worse than others . Has anyone else had the same "reaction" ? Perhaps it's not the NDt at all but none of my other medication had changed

[Buddy195 Administrator]

I’ve definitely had burning mouth syndrome, which was worse when my thyroid medication wasn’t optimal & folate was low.

Others have posted on this,

healthunlocked.com/thyroidu...

radd also had a very interesting post about mouth conditions

healthunlocked.com/thyroidu...

[Mitch27 in reply to Buddy195]

Thanks a mil ..interesting read. I'm so glad it's not just in my head ..I was getting paranoid.🙄🙄🙄 I posted on the thyroid FB page I'm on..and no one has it so really thought it was just Me. I'm going to look up the ingredients on Thyroid S and see if it contains MC which was be a possibility. I just want to stop taking the NDT now as it's driving me crazy 😭😭

[Regenallotment]

I got this from sulphites, it was gluten free sausages from Aldi one time and some Nocarella olives in a restaurant another time.

🦋💚🦋

[Mitch27 in reply to Regenallotment]

Interesting...🙄... I'm 99% sure mine is from the NDT ...

[jamesal0]

Hi Mitch Yes same - the tip of my tongue sort of taists burnt. I've been hypo/Hashi for about 12 years now and it's been like this for maybe 10 years . The depth of burntness rises and falls but it doesn't completely go. I think too much about it, but was putting it down to gluten, although I'm gluten free but you always get a little bit here and there. I injected B12 for a few years and it didnt seem to make any difference to the tongue thing - it did help with brain fog though. I've been on NDT maybe 10 years, when I come off it for a few months the tongue doesn't get better.

[Mitch27 in reply to jamesal0]

Ugh .,...thanks for sharing ...it's sooo frustrating and obviously you think about it constantly as it's constantly there 😫 im thinking of coming off ndt as I can't win ..on levo I was crap ... on ndt crap ...only when I first started taking NDT three years ago I tried two brands before I got on with tr man. I felt so much better..lost two stone..no joint pain..the it stopped after a year . I couldn't increase th dose as I had terrible shakes and sweating if I did. I've been on Thyroid S over a year but I feel no different if I take it or not and again I can't up the dose or same problem and I also feel when I tried to up the dose my tongue got worse 😭 I had tests last week so waiting on results but thinking of trying levo again as I'm at my wit's end 😢😢

[jamesal0 in reply to Mitch27]

Why do you want to up the dose ? It sounds like you might be slightly over dosed. "terrible shakes and sweating" on increase etc. I'd experiment with going down just slightly and see if you can find the goldilocks zone - this is called fine tuning. You probably wont get your pre Hashie's body back but you should be able to get 90% there. Blood tests don't help much with NDT fine tuning - you need to use symptoms and experiment .

[Mitch27 in reply to jamesal0]

Think you misread my response, I said I got those symptoms when I had upped the dose hence I dropped back . I have no intention of upping the dose 😫 I decreased down to one grain and made no difference with the burning sensation. My vitamins are ok according to last tests, bit if tweak here and there but nothing significant that I am lacking. I don't want my pre hashimoto body back but I'd be happy to have one stone off never .kind three... It's just frustrating no matter how I try to keep a low calorie diet I just cannot loose any weight ... It's very frustrating ☹️🙁

[jamesal0 in reply to Mitch27]

No I understand what you meant, you have a burning tongue at say 60mg and at 90mg you get the shakes etc.. My suggestion is maybe you need 50mg or 55mg or 65 etc. NDT has a very narrow dosage window. Too much and you feel yuck and too little and you feel bad. But get it right and you feel 90% normal. Also what other symptoms do you have at your current dose. Are you 100% gluten free.

[Mitch27 in reply to jamesal0]

That's what I meant ... I have started on low doses.. gradually upped till ok... At times not ok so up again that's when I get shakes so I lower it again . I have at times also had to take T3 .. I'm ok with how to dose though so thanks for your suggestions but I've been on ndt for years so know how to tweak the doses. My point is that this is the only time I've had burnt tongue sensation ... On thyroid S... Never with any others. I have tried gluten free but not much difference for me unfortunately. I swell, have a lot of aches, lethargy ....

[TeeDee63]

hi Mitch, I have it constantly and my tongue gets very sore! I’ve googled it and the description ( patchy, coated and red) is called ‘ thyroid tongue’ on Google. That doesn’t help though as the pain, discomfort affects me greatly. If anyone has any suggestions as to what can possibly help I’d be more than happy to try anything. Good luck on your journey. By the way I’m on levothyroxine only ( undermedicated) as it’s a constant battle to get properly medicated at the GP’s. I’m on 50 mg only and have to have a blood test this week to test TSH before they’ll consider upping my dose because apparently my last TSH reading of 2.6 is within range. I’m more worn out trying to get support from the medical profession than I am from my underactive thyroid.

T xx

[Mitch27 in reply to TeeDee63]

Thanks for the info. I feel your pain re getting support ...they think we're nuts doctors do and I find it sooo funny that the thyroid is a vital function for our bodies but so easily poo pooed off like it's nothing and they'll only stick to their guidelines and not your symptoms 🙄🙄🙄🙄 I was on 200mcg levi before switching to NDT but I really feel this affected the tongue story and I just don't feel any better on it now so thinking of going back to levo 🙄

[FancyPants54]

I had this problem before I took thyroid meds at all. It got worse and worse and became painful.

Turned out to be cinnamon used in the new organic toothpaste I had switched too. I can't stand much cinnamon in food or drink at all before it starts it off. But I love the taste so I put up with it sometimes as it soon wears off if I'm not using cinnamon all the time. It took a long time to find out what it was. I had never even considered the toothpaste.

[Mitch27 in reply to FancyPants54]

Gosh how interesting....did it dissipate when you stopped using it ?

[FancyPants54 in reply to Mitch27]

Almost immediately. My neighbours are both professional perfumers and when I told them about what I had found they told me that cinnamon is irritant to a lot of people. They have to use it very sparingly in fragrance.

[Mitch27 in reply to FancyPants54]

I'll certainly check ingredients... Thanks for that

[FancyPants54 in reply to Mitch27]

Well it might not be cinnamon for you. Could be another ingredient. Think of everything you might have changed or introduced to your life in the same timeframe. It's hard to remember though.

[limonene7]

silent reflux, very common, can also cause feeling of burning tongue.

[Mitch27 in reply to limonene7]

Hmmm interesting... I have reflux ... ,🤔🤔

[Rockingdog54]

Bonjela works

[Mitch27 in reply to Rockingdog54]

Tried it didn't help

[Suei]

I have experienced exactly the same thing, it can last days & I have sometimes had ulcers at the same time. I’ve recently been told that I may have fibromyalgia & am taking Amiltryptiline to help me sleep due to the pains I experience. Not sure if that is the cause but the burning comes & goes & I haven’t been able to pinpoint any triggers yet.

[Mitch27 in reply to Suei]

Soooo frustrating.... I feel I may have fibromyalgia as well as constant pains in my legs with no explanation... General aches ... Like you I cannot pinpoint it ...I'm literally stopping my NDT for few days as I can't bear it.. I find myself constantly eating to try get rid of the sensation and kind of taste in my mouth as well .....🙄

[Suei]

Good luck with everything, it’s crappy having constant & random pains. Feel like a hypochondriac sometimes but we must try to stay positive 😃🤞✨

[Mitch27 in reply to Suei]

Thank you and absolutely 😊☺️😁