Thyroid gland and neuropathic facial pain

Has anyone else had a low TSH value on a thyroid test?And did resolving that resolve your face pain?
On one medical site it stated that hyperthyroid can cause burning mouth.This makes sense in my case.
Anyone with experience with this?Awaiting results from the ultrasound and my doctor setting up an appointment with an endocrinologist.Would really love some tips.I hate going in blind to these appointments.You get one chance and then your next appointment is months away-or they book you for something and you have not had a chance to Google search it.

Been hyper [Graves Disease], no TSH for 5 years, many different symptoms but no burning mouth here. We treated with meds [PTU], supplements, diet, lifestyle etc. Thyroid levels all good for 4 years now, I do not believe the two conditions are directly related.

I have burning mouth. Have tried lots of things but nothing works. they said my thyroid was normal, but there was only 2 lines. I remember yrs ago having thyroid test and there were 8 or more things they tested for. should I ask for a specific thyroid function test? Thank you.

Hi Kath
I don’t know-but I wish I would have pushed my doctor more.In Canada it is pretty hard to get more tests.I Don’t know if I told my doctor I would pay out of pocket,maybe I could have had it.But was not even on my radar.
The tests he ordered after the TSH came back low were
Free Triiodothyronine
Thyrotropin(sensitive TSH)-which came back low
Free thyroxine(Free T4)
I have no idea what any of it means.I just got in and you were the first thing that came on my wonky computer ,so you get the first bit of info.
I do not know whether this is something that anything to do with burning mouth,HOWEVER,the ultrasound shows a bunch of nodules on the right side (and a large one,too)which would be below where I am having the pain.
I have been referred to a thyroid specialist.I tried to up the appointment from August-the doctor actually read all the notes I brought and said it was not an emergency,they would put me on the cancellation list and not to worry.
So of course now I will need to scour the internet and see whether any supplements will reduce these things .
When did yours start?
Mine started after a tooth extraction but the reason I had the extraction was because a front tooth was really sore,and was a bit loose,and I need a molar out and I figured do the front tooth and get the dentures.
But the pain in the front tooth was a different pain than I had ever felt.
I never put it together with getting rear-ended about 2 months earlier.I was dealing with back pain.
None of the professionals I saw put things together.
So now I do not know whether I sustained some damage from the accident that caused this mouth pain or it was unrelated,as the accident was 2 years ago.
I wish you luck with the burning mouth.
What do you take for it?Clonazepam is supposed to help.Dr.Grushka has a website.She is supposed to THE expert in burning mouth.

I have this problem but after bringing my thyroid values to normal with medicine I still had TN.

Hope you will not!
Jean Marie

Thanks for that info.
I am sorry that you still have TN
I just keep hoping something is causing the burning pain that is fixable.

Whilst going through our journey with thyroid disease we found the forum below very helpful.

You can share your test results there and the people there will help you to become informed.

Hi Sparky
Thanks so much.
Went to my physiotherapist yesterday to have her give an opinion of this
soreness in my neck.It did not seem to be near where Dr.Google says the
thyroid is ,but ,before I went to my family doctor I wanted to make sure
.She said it seems like a lymph node-which is right under where my tooth is
sore and a bruising feeling on my jaw.
I went to my family doctor today and he said it was the thyroid.So I was
able to argue my case(a bit) and he ordered an ultrasound(the technician
said lymph node) and put me on antibiotics.He said to go to a dentist for
the jaw pain,
I am so frustrated with this whole ordeal.
Sores that won’t heal on the right arm and leg.Left side is OK.

Raised a Catholic-feels like purgatory on earth

Hi ellen
I’ve had Trigeminal Neuralgia on the entire left side of my face for 14 years, after about six years into it I noticed lymph nodules on both sides of my neck. I brought it up to my doctor and she ordered an ultrasound. I was then referred to an endocrinologist and she could feel a bunch of lymph nodules. I was eventually put on l-thyroxine (hormone medication) and my nodules were practically extinct within a month and my blood work showed my THS level almost normal. My PCP monitors my THS levels every few months and makes adjustments to my medication as necessary.

You also stated your doctor told you to go to your dentist to be checked. Most people do start at the dentist because we think the pain is related to our teeth, therefore if you haven’t consulted with a dentist yet, that would be a good place to start; however if your dentis recommends pulling some teeth don’t do it if there is nothing obviously wrong with your teeth, DO NOT LET THE DENTIST PULL ANY TEETH! And get a second or third dental opinion. Your next stop should absolutely be a neurologist. The neurologist will help you get on the correct medications which should lessen the pain.

Thanks.I started at the dentist.Not many teeth left to pull.I think I can last one more year but they cannot manage my pain levels at all.
The ultrasound of my lymph node came back more or less normal.
The dentist had no opinion but referred me to an ENT.
It just feels like an infection on the side of my face.
If I squeeze the meaty part of my cheek the pain is in tense(not that I do it often ,but I am trying to find out what is going on now)
What is normal for this type of neuropathic pain,if that is what it is.?
Pain 24/7 unless I am on tylenol 3’s-which numbs it.Gabapentin does not seem to a heck of a lot.Take enough and I fall asleep.
And this hand numbness is an issue.Since I stopped the nortryptiline the hand numbness is 90% better,but I still get it.
Why now?
That is not from the trigeminal nerve in my hand.
I just hate not knowing,I hate dealing with the medical profession.
I love herbs but they are not helping enough,although the medical weed is a good knockout .
That is my life now-drugged or asleep.
But I just bought some discount lilies that will bloom next year so I need to get out and plant them.
Something to live for.

I have mouth, but mostly lip burning and I had to go off Lisinopril as it caused my lips to swell. I was told I have an antibody in my blood which is attacking my thyroid. I made and appointment to see an endocrinologist last year, and my appointment is August 4, 2017. As far as I know, my thyroid is okay. I went on Beta blockers for high blood pressure. I know how I got this; I had an operation after three years of cortisone shot to alleviate swelling and pain. In hindsight, it was a plastic surgeon who operated on me and his resident surgeon ripped out a stitch that was on the right side of my face. The injury was on left side. I had the operation as the surgeon said he could not give me anymore cortisone shots. After the resident surgeon was ripping the stich out, I was screaming to stop and he said I just felt pressure. After that there was blood everywhere and I had three months of infections. That is when the pain got worse and worse back in 2008. So the trauma and infection is what I believe caused my condition. I now feel like my mouth is constantly sloughing off and my saliva is thick. I don’t feel like it is my mouth anymore. I am at wits end. Blessings to you, barbiedollstars:boom:

That BOOM disturbs me.
It has been a dreadful experience for you.I do not know what else to say.
All I can do is hope that things get better.
Wishing you some sort of happiness,where ever you may find it.

Hi Ellen, I have been going through so many tests. I don’t understand with the emojis are written out instead of showing pictures; the one I did looked like fireworks. It turns out that I have traumatic peripheral nerve damage and that is why I am in so much pain.
The atypical, which I already knew is a “wastebasket” term and there is nothing they can do for me. I do have Hashimoto’s disease and the diet is so controversial. I also have burning mouth syndrome and my insides of my gums are peeling off. I have to take a video speech swallowing test this week. It is difficult to swallow now. I don’t know how people go on because now that my son moved so far away, and this Hashimoto’s causes fatigue, depression, joint and muscle pain, which I already had, I understand it also causes weight gain, which I am losing weight as I lost my appetite and find it difficult to eat. I just want to sleep forever. Blessings for all of your kindness. :rainbow:

Good to hear from you.
I am going to be getting a CT scan of my facial bones.
I am hoping that shows something.
Clonazepam is supposed to be good for burning mouth.
I just love it when they say it is JUST pressure.We all know pressure and
we all know when something is wrong.
My thyroid is all wonky,too.
My body looks the best it has ever looked.I just feel like crap.
But Yay-you are getting more testing.
We can all just keep on living until we stop.
Keep up the fight.You never know what is around the corner.

1 Like

Hi Ellen, I am glad you are getting a CT scan. I can’t take Clonazepam because I ended up in the hospital after stopping it for a couple of days and I don’t ever want to go through that again. My whole mouth doesn’t burn. It is just my lips that feel like they were set on fire and no lip balm has helped. I tried vaseline and a lip balm with 1% hydrocortisone which did not work. At least I now know why I am so very tired and can barely get out of bed. There seems to be a link with TN and the thyroid. A blood test can check it out. Blessings…:hibiscus:

Yes-it seems to be the case.I do not believe atypical should be called tn.
It is like calling shingles tn.
Hopefully once your thyroid gets sorted out all the issues you have been
having get sorted out,too.
Atypical may affect the same nerve as tn but the cause is something else
and when we get lumped in with the true tn people and we do not respond to
the same meds they do ,the doctors do not know what to do.
Fingers crossed for you

Hi Ellen, finally after over eight years of seeing more than 10 neurologist, and pain management doctors, I even said that ATN is a wastebasket term. Non of the anti seizure medications worked on me and finally after years of constant gnawing in my lower jaw and paresthesia along with burning, I had the three episodes of lip swelling that came from taking Lisinopril (angioedema). After that, I found out that I had Hashimoto’s disease which was attacking my thyroid. A new neurologist referred me to a neurosurgeon who said that I had traumatic peripheral nerve damage which obviously never healed correctly and that would cause the pain I am in. The upside is that I don’t need surgery. The downside is that nothing can be done for me. So now I have in addition, burning mouth syndrome in which only my lower lips feel as if they were set on fire and my saliva is thick and sticky which makes it difficult to swallow. Hashimoto’s causes fatigue and depression which I already had. Every single day is a struggle and it is just getting worse. Now I realize that I am in the wrong group and it doesn’t matter too much as I am too tired to even come here anymore. So, I wish that you only experience good days and happiness and thank you for all of the kindness you have shown me. I feel alone and isolated because my son lives too far away and most of my friends have died or are very ill. So I will count the blessings I have left and keep you in my prayers. Blessings, :white_flower::star:

Hi Barbie doll
_ wish I could offer you help.I am in the same boat-sort they say TMJ.2 doctors ,TODAY,said that.But only until I go to another doctor and then they will say something else.As long as it is something they can’t fix.I swear.If these guys were car mechanics they would all be broke.
Try essential oils-straight -if you can stand it.peppermint did not work at all for me and then I tried it straight.That and the mintiest mints I can find take the pain down a couple notches.
Please make friends with some birds at your window.You never know what the next doctor will say.

I am so sorry this is so very late Ellen. I :kissing_heart:send prayers out to you. Now I am told I have trigeminal neuropathy which was from a fall I had over 10 years ago. I am still in excruciating pain and now lower lip is on fire! I have seen more doctors and they cannot find any solution. Blessings, barbiedollstar

I was also diagnosed with Hashimoto’s disease which is an autoimmune disease that attacks the thyroid. I am hypothyroid and although my thyroid gland is still ok, I also have burning mouth syndrome which is mostly in my lower lip which actually peeled off. It feels like I was scalded. This can be also caused by Topiramate which is used to treat trigeminal neuralgia. However, anyone with an autoimmune issue can have burning mouth syndrome. Blessings, barbiedollstar