Why do I start having burning mouth syndrome and ringing in the ears when I take ANY thyroid medication

[hopeful1153]

How does one treat hypothyroidism if the medicine makes me have so many terrible symptoms? I first had burning mouth syndrome when I was taking too much thyroid medication. A friend (Dr.) had samples he was giving me and I took more than was prescribed not thinking it would make much difference.  I developed burning mouth syndrome and then had endometrial cancer. After having a radical hysterectomy I felt fine. Then one year later I contracted a virus that felt more like mono. I could hardly get off the couch and developed BMS again.  Thinking I might have cancer again, I went to the Dr. and had blood work done.  My TSH was so low that she ordered another test. She lowered my synthroid from 137mg to 125mg.  My burning mouth continued along with ringing in the ears,brain fog,and fatigue.  

I then started having terrible acid reflux and was diagnosed with gastritis. That issue became better but my other issues continued.  My doctor switched me to levothyroxine and lowered it to 100mg.  My symtoms continued even though my TSH got lower. After many months of having these terrible symtoms I decided to not take my medicine one day and my burning mouth was better the next day.  Since this time that has been my repeated experience.  I go back to taking my meds because my thyroid is low but when I think I can't take the symtoms any more I go off of them for a few days to get relief which I always do.  Even though I have been told that my symptoms have nothing to do with my thyroid condition there is something that happens to my body when I take the thyroid med. What could the medicine be doing to exacerbate this problem? I get to the point I can't work which frightens me. It seems like a catch 22. Any ideas?  Thanks for anyones help.  

[pbgnsmalltown]

I had thyroid cancer and my mouth burns and my ears ring.  Good luck I think it is related to the thyroid.

[thowell6]

It is the fillers!!  I have been taking Lyvoxil for years.  I usually get a 90 day supply of it at a time (100 mcg).  Back in June 2009 I switched insurance and had to get generic for a while -- Synthenoid.  I begin having running nose, sinus drainage in back of my throat, and ringing/clicking noise in my right ear constantly.  Worse when I laid down at night.  For nearly 3 months I visited doctors, ENTs, and no real reason for the symtoms other than Tinnitus.  They even ran Hearing test showed some abnormal feedback in right ear but MRI confirmed it was nothing.  Finally decided to do my own investigation.  Stop taking meds for a week (not recommended by a doctor of course) but I had to get to the bottom of this ringing in my ear.  It was so annoying.  After a week all symptoms went away.  Started taking the synthroid again and ringing came right back within a day.  Called my doctor and insisted I be switched back to regular med Lyvoxil.  My insurance was upgraded to the enhance package which covers non-generic so I was able to go back on Lyvoxil.  No problems since the switch.  It is something in the fillers used in generics that does not agree well with everyone's body type.  I also noticed after 2months on synthenoid I started getting numbness in my right hand and arm.  So bad that I would wake in the middle of the night sort of paralyzed on one side.  I would have to shake them vigoriously to bring the circulation back.  Almost like a pinched nerve or something.  All gone now that my insurance covers Lyvoxil and I made the switch.  Definitely take a look in to this.  It may also be your case.  

God Bless!

[Smilerdeb]

I also have had the burning mouth sensation, the ulcerated tongue, the ulcerated mouth, the ulcerated throat (sore throat) and do you really want to know what causes it in me?

THE FT3 BEING TOO HIGH.
Simple as that............. I have it again at the moment.

Try bringing the T3 down and you will find that the burning goes.
Dont keep stopping the meds.....
Start from scratch...start on a low dose then slowly increase and work your way up to a place that is 'comfortable.

The best way my Doc did it was ....
Starting on 25mcg T4 med weekly......
Then every fortnight, increase the meds by 12.5mcg (1/4 of a 50mcg tablet).

Heres an example........
week 1.....50mcg daily X 7
week 3 ....50mcg X6, 62.5mcg X 1
week 5....50mcg X 5, 62.5mcg X 2


Obviously as you can see, as each fortnight passes the meds are increased by 12.5mcg each fortnight.

Baby Steps...thats all it needs.

I had RAI a yea ago and Im doing great and levels have been pretty much stable for 6 months now.

The dose I am on?
62.5mcg X7 days  (weekly)

Try it...you may just find it works.

[stella5349]

Thanks Dani

The word just escaped me when I was writing....

[dani2776]

Just to clarify the ringing in the ears is called tinnitus (pronounced tin-i-tus) and has many causes.  The 2 main ones are hypothyroid and also TMJ.  With me I have Hashimoto's and have had it a long time (undiagnosed of course) according to my doc and with all the stress of never feeling well can lead to increased tension resulting in TMJ.  TMJ is a lot more than just a locked or popping jaw.  I did not believe I had it when my ENT suggested it but I went for my consult anyways and sure enough I do.  He gave me a lot of info reagarding TMJ and hypothyroid and all the symptoms it can present.  Ringing in the ears is very common and is not serious just annoying!

[stella5349]

Low thyroid will have this for some people. I actually have it - but don't notice it much at all now after the years of it being there.

Now that you bring it up - I do hear my own ringing a bit now..... LOL

Thanks ( just kidding)

I can't remember the medical term right now they use for the constant ring sound???

but it is part of the disease that revolves around the endocrine system and I pretty much live with it now.

I do however notice that it does get more irritating and lounder - IF I am out of sorts with my labs.

Another thing to alarm me that I am slipping once in a while.

[bfaithful]

I have a low thyroid disorder.  When I do not take the synthroid, the ringing in my ears worsens.  However, it is bad most times.  Really would like to find a way to stop this ringing any suggestions?

[stella5349]

Sidney

Your response is confusing. I am not sure what you are trying to say.

To pick it somewhat apart - If you are suggesting to go on only T3 meds for a while - that really is not correct.

T3 meds alone are pretty much done with a found lab of having a high Reverse T3 lab done. If you're RT3 lab is high then a T3 med only - is used to get that reverse T3 un clogged.

A T4 med soley converts to a T3 hormone to control hypothyroid. If your conversion of T4 into T3 is not working in the right ratios then hypothyroid symptoms will still be present.

Ideally, going on a T3/T4 combo med - you would think would be perfect right? Nope.... not all the time. Even though many hypothyroid patients will say they feel better adding in T3 with a combo med - they still can have issues with symptoms that swing up and down through the month and this med can stall a thyroid ( that still functions) so it becomes lazy and will eventually not want to work on it's own.

This is where doctors need to be open to treatment options. We can rant and rave here about any certain meds we want saying it can give optimal results, but in reality it all needs to be focused on the individuals needs -

Labs in this century are terrific, but most of the time the labs are not processed correctly and they miss an important factor of ratios when they don't test. Take the Reverse T3 and Free T3 test. How often do you read a patients get those done ?

not often.

Mostly for people without thyroids - Mineral and Vits are critically important. We need to find a new balancing act of those to support the meds now that we depend on. Even someone with Hashimoto. Those flare ups of antibodies deplete us in many ways. We need to support that - AND - also stabalize the balance in our body too. The longer we stay ill - the longer it takes for us to get well and more things go wrong - ( High HDL/LDL - liver enzymes abnormalities - cortisol issues - cardio irregularities- etc)

Wishing things to just go away is not good wither - time IS of the importance when we are off.

It's the toughest thing I EVER did in my life. At times I truely thought I was dying and would never get well. There comes a time when all of us - need to pick ourselves up off our boot straps and REALLY dig into ourselves and figure some stuff out before it's too late.

It's possible - but sonetimes you need to be a little more flexible than what your doctors say to do.

[sidneywoot]

I did and I am in the same boat so whats up with that?  I am thinking to go all T3 but I understand completely what this person is telling that is my problem also. Maybe stop making the TSH so low that it can't do anything really is that better and go onto T3 only meds for awhile. We are people without Thyroids and you what have thought it would be o.k. but it isn't .

[stella5349]

I was going to ask - just that....

Did you have RAI to ablate the gland? - or any radio active iodine treatments at all?

[Liz94]

I don't know what the BMS is caused from but I have it too. I never related it to the thyroid meds though.  Mine started right after my RAI treatment and I was convinced that was the cause although my endo tells me otherwise.  Then the heartburn started really bad and my gastro doc told me the burning mouth was actually the result of reflux. Put me on prilosec which I've taken now for over a year and the burning mouth comes and goes.  I don't know that it's because of the reflux, the meds, the RAI, who knows?  I just wish it would go away.  I did have a long period of time when I felt great. But, the longer I take the thyroid meds, the more things come up.  My tsh is very low due to cancer suppression, I think last check it was .3.  I feel good when it's around a 5!  So, I pretty much live in a state of misery from one day to the next.  

[goolarra]

My guess is that you are allergic to something in the pills, like the fillers.  After skipping thyroid meds, or lowering the dose, it takes takes several days to several weeks before you appreciably change the levels in your body.  So, if you stop taking your levo and the BMS goes away that day or the next day, I'd look for something, other than the thyroid hormone itself, that might be giving you the problem.

Since you've tried Synthroid and a generic, maybe you could compare the ingredients of those two (available on the manufacturer's website) and see what they might have in common.  The generic might be harder to pin down unless you can find the manufacturer (ask your pharmacist, perhaps).

There are also other brands to try, Levoxyl for one, which my endo swears is a superior product (don't know that I agree).  Also, you can go to a compounding pharmacy and have preparations made up just for you without the usual fillers.

Lots of people here on the forum report problems with fillers, and the problems go away once they switch brands (or to a brand from generic).

Also, In addition to TSH, you should make sure your doctor is testing your free T3 and free T4.  These are the actual thyroid hormones and give a much clearer picture of what's going on with your thyroid than TSH does.  If your doctor is only looking at TSH, that could be the problem also.  TSH correlates very poorly with symptoms.