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Anyone else have 'burning mouth/tongue symdrome"
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Anyone else have 'burning mouth/tongue symdrome"

This is my first post to the forum, though I've lurked since mid february, when I had a partial thyroidectomy and a diagnosis of papillary carcinoma 10 days post surgery.  I'll have the rest of the thyroid removed on May 10.
But, this burning tongue problem started the first week of last August.  It's like I burnt my tongue on hot tea, but it never goes away.  I affects mostly the tip of my tongue and my sometimes there's a horrible metallic taste to everything. This started BEFORE I knew of the thyroid 'problem' I had.  This sounds alot like what some of you have said is a side effect of RAI treatment.  But I haven't had that (yet). And I've read that it could also be caused by thyroid disease! I'm hoping after the TT and my hormone levels get straightened out this will go away.

This forum has given me a wealth of information and even though I haven't posted, I've certainly read most every thing for the last 7 weeks since my PT. I've held many of you in my heart, hoping for a smoother ride for some of you.  The power of prayer, or as I usually say, 'strong thoughts' ('cause that's what it is!)works if you believe it.  I'm a believer!!  Strong thoughts to you all!
I'll let you know how things come out.. (pun intended)
XOXO   Linda
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Avatar_n_tn
I have the same problem with the burning stinging mouth/tongue sensation.  My nose and eyes burn along with my ears constantly having pressure in them.  It was passed off as allergies/sinus problems in the GP's office several months ago.  I also had a small stroke at the beginning of November and was told I had heartburn in the ER.  Consequently, I did not have an MRI on my brain until December to verify it was a stroke.  The goiter was causing me choke and my tongue was swollen as well.  My endo says the mouth/tongue sensation isn't related to my thyroid problem, but after doing some research here I believe he's wrong.  He diagnosed me with Hashimoto's Thyroiditis.  I'm seeking advice from another endo and  planning to see an ENT.  My prayers are with you too as I know how frustrating this can be.  Do you plan to see an ENT?        
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Avatar_f_tn
I had papillary thyroid cancer in 04 & underwent a total thyroidectomy. it seems i've had the burning throat & tongue every since. i recently went to the ER & was told its allergies-i don't believe that either. i wear a dental partial so i thought maybe i've started reacting to the metal in the upper partial but i've had it for years with no prior problems.
im at my wits end. im using biotene mouth moisturizer, drinking water & using throat lozenges but i spend every day with burning tongue & dry throat.
after reading some of the comments about thyroid i'm beginning to wonder if all along its been because of the thyroid treatments or removal of my thyroid.
i just don't know what to do. Sorry I can't be of any help to anyone.
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Avatar_m_tn
Have you had any thyroid testing done?  If so, please post test results and reference ranges.  Do you have any other possible hypo symptoms, such as the 26 listed in this link?

http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html
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Avatar_f_tn
I had a total thyroidectomy in 04 due to papillary cancer. I have thyroid testing every 3 months for my t3 t4 and tsh. My levels are kept very low to prevent the recurrence of cancer and I take Levothyroxine for replacement 6 days a week. I was on 7 days a week but the endo doc changed it because my levels were getting too low. I' had metal poisening testing done and the results came back with zinc being 63 (normal range 60-130) b2 came back<5. Now, I'm on  50 mg zinc & 100 b2. I was given neurontin to work up to 9 capsules a day but I get to 4 and can't stay awake. It's given me no relief from the burning tongue so now i'm working my way back down to get off of them. I am on estrogen orally 7 days a week and vaginally (cream)twice a week and no change. I take Premarin which has no Progesterone in it so now I'm wondering if the burning tongue is coming from lack of Progesterone.I've read that if you don't have a uterus (and I don't) that there's no worry about cancer with Progesterone. I've been to dentists, gyns, pcp's and I am seeing my endocrinologist on Thursday. Living with this is total misery and its hard because I fit the situation for all the reasons except diabetes. I'm hypothryoid & pre menopausal but I would rather live with hot flashes than this; this is totally crippling me.
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Avatar_m_tn
I can't say for sure that hypothyroidism is the cause for your main complaint of burning tongue and dry throat.  When you look at the link I gave you did you see any symptoms that you have?

Also, it would help a lot if you would post the actual results from your thyroid tests, along with their reference ranges shown on the lab report.  
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Avatar_f_tn
Hypothyroidism signs and symptoms can include:


    Feeling tired (fatigue) and sluggishness ( lived this way for a long time but do have manic episodes with increased energy)
    Slow movement and speech (sometimes slurred speech)
    Constipation (occasionally, but I also take a narcotic daily)
    Increased sensitivity to cold (i had this problem, but I moved to Florida 2 years ago)
   Joint and muscle pain, aches, and stiffness (yes, but I've had both shoulders operated on) I have muscle pain more if I don't move about)
    Pale, dry, rough, and thick skin (I'm not pale but have super dry and wrinkly looking skin), not sure if it's thick or not?
    Dry, thinning, or coarse hair (daily hair loss, super dry and I use a leave in conditioner daily to help)
    Brittle nails (Comes and goes, currently growing well but can change and start breaking) I do have those rigid lines in my nails that old people get.
    A horse voice (I always had a deep voice but deeper and more hoarse since thyroid was removed)
    Decreased sweating (Upto about a year ago, I rarely sweat, but now find myself sweating more and having flashes of heat on & off throughout the day and sometimes during the night)
    Depression (not really, the burning tongue is wearing me down and feel like it's wrecking my quality of life but I keep going, although I have days that if I have nothing to do, I will find myself laying in bed sleeping, the only time my tongues doesnt burn is when I'm sleeping)
    Slowed heart rate (don't really know, feels like I have palpation's occasionally)
    Decreased hearing (I have implants & hearing aids from the military exposure)
    Difficulty catching your breath (severe shortness of breath) when exercising (I do get short of breath but I'm also a smoker)
    Decreased ability to exercise. (I was exercising and doing great 2011, riding my bike and swimming almost everyday but when the tongue started in Dec 2011, I just am drained and haven't did any exercise)
I will post my labs. I'm a veteran and have access through an internet site for me to pull the information. I wanted to give you this information from the link you attached. Be back shortly.
    
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Avatar_f_tn
I apologize for so much information. I am certainly open to any advice. I see my Endocrinologist on Thursday(this week) and I feel so desperate for him to figure this out or help me at all. I recently read about Progesterone could be a cause for burning tongue, possible????

Date/Time Collected: 31 Aug 2012 @ 1210
Test Name Result Units Reference
Lab Test: Thyroglobulin Panel
Lab Type: Chemistry/Hematology
Location
THYROGLOBULIN <0.2 Low ng/mL (2.0-35.0) Final

Lab Test: Thyroxine Free (FT4)~ADVIA CENTAUR
Lab Type: Chemistry/Hematology Ordering
Specimen: Serum Ordering
Date/Time Collected: 31 Aug 2012 @ 1210
Test Name Result Units Reference Range Status Performing
Location
THYROXINE.FREE 1.56 ng/dL (0.89-1.76) Final

Lab Test: Thyroid Stimulating Hormone~ADVIA CENTAUR
Lab Type: Chemistry/Hematology Ordering
Specimen: Plasma Ordering
Date/Time Collected: 31 Aug 2012 @ 1210
Test Name Result Units Reference
THYROTROPIN 0.264 Low mIU/L (0.46-4.7) Final

Lab Test: Creatine Kinase (CK)~ADVIA 1650
Lab Type: Chemistry/Hematology Ordering
Specimen: Plasma Ordering
Location:
Date/Time Collected: 24 Aug 2012 @ 1208
Test Name Result Units Reference Range Status Performing
Location
CREATINE
KINASE
31 Low U/L (35-172) Final

Lab Test: Uric Acid
Lab Type: Chemistry/Hematology Ordering
Specimen: Plasma Ordering
Date/Time Collected: 24 Aug 2012 @ 1208
URATE 2.5 Low mg/dL (2.7-7.3) Final



Date/Time Collected: 24 Aug 2012 @ 1208
Test Name Result Units Reference
ERYTHROCYTE
SEDIMENTATION
RATE
11 mm/hr (4-27) Final


Lab Test: Thyroxine Free (FT4)~ADVIA CENTAUR
Lab Type: Chemistry/Hematology Ordering
Specimen: Serum Ordering
Date/Time Collected: 20 Jun 2012 @ 0956
Test Name Result Units Reference Range Status Performing
THYROXINE.FREE 1.72 ng/dL (0.89-1.76) Final

Date/Time Collected: 20 Jun 2012 @ 0956
Test Name Result Units Reference
THYROTROPIN 0.224 Low mIU/L (0.46-4.7) Final

Lab Test: Hemogram+PLT+Diff
Lab Type: Chemistry/Hematology Ordering
Specimen: Whole blood Ordering
Date/Time Collected: 21 May 2012 @ 0805
Test Name Result Units Reference
BASOPHILS 0.0 K/cmm (0.0-0.1) Final
(EFF. 10/1/06)
BASOPHILS/100
LEUKOCYTES
0.5 % (0.0-2.0) Final VIERA CBOC
(EFF. 10/1/06)
EOSINOPHILS 0.2 K/cmm (0.1-0.5) Final
(EFF. 10/1/06)
EOSINOPHILS/100 2.5 % (0.0-6.0) Final
LEUKOCYTES (EFF. 10/1/06)
ERYTHROCYTE
DISTRIBUTION WIDTH
12.7 % (11.3-14) Final VIERA CBOC
(EFF. 10/1/06)
ERYTHROCYTE MEAN
CORPUSCULAR
HEMOGLOBIN
32.9 pg (27-35) Final
(EFF. 10/1/06)
ERYTHROCYTE MEAN
CORPUSCULAR
HEMOGLOBIN
CONCENTRATION
34.5 g/dL (32-36) Final
(EFF. 10/1/06)
ERYTHROCYTES 4.26 M/cmm (3.9-5.1) Final
(EFF. 10/1/06)
HEMATOCRIT 40.6 % (35-45) Final
(EFF. 10/1/06)
HEMOGLOBIN 14.0 g/dL (12-15) Final
(EFF. 10/1/06)
LEUKOCYTES 6.1 K/cmm (4.2-10.3)
(EFF. 10/1/06)
LYMPHOCYTES 1.7 K/cmm (1.1-3.4) ‘
(EFF. 10/1/06)
LYMPHOCYTES/100
LEUKOCYTES
27.8 % (15.0-45.0) Final
(EFF. 10/1/06)
MEAN CORPUSCULAR
VOLUME
95.3 fL (81-99) Final
(EFF. 10/1/06)
MONOCYTES 0.5 K/cmm (0.3-0.9)
(EFF. 10/1/06)
MONOCYTES/100
LEUKOCYTES
7.6 % (3.0-12.0) Final
(EFF. 10/1/06)
NEUTROPHILS 3.8 K/cmm (1.6-6.2)
(EFF. 10/1/06)
NEUTROPHILS/100
LEUKOCYTES
61.6 % (39-76) Final
(EFF. 10/1/06)
PLATELET MEAN
VOLUME
9.6 fL (6.7-10.7) Final
(EFF. 10/1/06)
PLATELETS 183 K/cmm (150-410)
Lab Test: Thyroxine Free (FT4)~ADVIA CENTAUR
Lab Type: Chemistry/Hematology Ordering
Specimen: Serum Ordering
Date/Time Collected: 21 May 2012 @ 0805Test Name Result Units Reference
ALANINE
AMINOTRANSFERASE
12 U/L (11.0-44.0) Final
(EFF. 10/1/06)
ALBUMIN 4.2 g/dL (4.1-5.3) Final
(EFF. 10/1/06)
ALKALINE
PHOSPHATASE
43 U/L (25-125) Final
(EFF. 10/1/06)
ANION GAP 4 Low (5-18)
(EFF. 10/1/06)
ASPARTATE
AMINOTRANSFERASE
18 U/L (16.0-43.0)
(EFF. 10/1/06)
BILIRUBIN 0.4 mg/dL (0.16-1.25)
(EFF. 10/1/06)
CALCIUM 8.8 Low mg/dL (8.9-11.0)
(EFF. 10/1/06)
CARBON DIOXIDE 30 mmol/L (22-32) Final
(EFF. 10/1/06)
CHLORIDE 105 mEq/L (98-109) Final
(EFF. 10/1/06)
CREATININE 0.8 mg/dL (0.6-1.0) Final
(EFF. 10/1/06)
GLOMERULAR
FILTRATION
RATE.PREDICTED
75 mL/min Final
(EFF. 10/1/06)

Date/Time Collected: 21 May 2012 @ 0805
CHOLESTEROL 170 mg/dL (<199) Final
(EFF. 10/1/06)
Interpretation: 240 mg/dL: AT RISK
CHOLESTEROL.IN
HDL
68 mg/dL (>40) Final
(EFF. 10/1/06)
CHOLESTEROL.IN LDL 84 mg/dL (<100) Final
(EFF. 10/1/06)
Interpretation: 190 VERY HIGH RISK
TRIGLYCERIDE 98 mg/dL (29-149) Final
(EFF. 10/1/06)
date/Time Collected: 21 May 2012 @ 0805
Test Name Result Units Reference
THYROTROPIN 0.119 Low mIU/L (0.46-4.7)
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Avatar_m_tn
While I am still reading and trying to absorb all your last two posts, LOL, please have a look at this info.

"As iron stores continue to be depleted, there may be shortness of breath, ringing in the ears (tinnitus), drowsiness, and irritability. If the anemia progresses in severity, chest pain, headaches, leg pains, shock, and even heart failure may occur. Children may develop learning (cognitive) disabilities. Besides the general symptoms of anemia, there are certain symptoms that are characteristic of iron deficiency. These include pica (cravings for specific substances, such as licorice, chalk, dirt, or clay), a burning sensation in the tongue or a smooth tongue, sores at the corners of the mouth, and spoon-shaped finger- and toe-nails."

Have you been tested for ferritin, and a full iron test panel?
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Avatar_f_tn
I've never heard of Ferratin although you question did prompt me to look it up and I'm uncertain if I've had full Iron panel. I am seeing my endocrinologist in the morning and will ask these specific questions. Do you have any thoughts about Progesterone? My hrt is Premarin and it has no progesterone in it.I understand the medical concern for cancer of the uterus but I don't have a uterus. I'm on the estrogen 7 days a week along with vaginal estrogen cream twice a week but obviously that's not helping.  Thank you for reviewing my information, I know it's a lot to look over. I will check for any response from you before I leave in the morning and I will give you an update when I get back tomorrow afternoon from my Endo doc
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Avatar_m_tn
From your symptoms, it sure looks like hypothyroidism.  I say this even though doctors frequently would look at your TSH and say that it is too low and you are hyper.  In actuality you are hyper only when having hyper symptoms, due to excessive levels of the biologically active thyroid hormones, Free T3 and Free T4.  Your Free T4 is not too high, and you don't even know what your Free T3 level is, even though it is the most important.  I say this because Free T3 largely regulates metabolism and many other body functions.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.  

I suspect that your Free T3 is too low in the range.  This frequently occurs when taking T4 meds only.  The range is too broad for low end results to be adequate for most hypo patients.  Many of our members, myself included, say that symptom relief required Free T3 in the upper third of its range and free T4 around the middle of its range.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results, and especially not just TSH.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance after an initial evaluation and tests.  The letter is then sent to the participating PCP of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

From my minimal knowledge of many of the multitude of test results you posted, I noticed nothing that alarmed me.  From your many symptoms, and history and medication, I feel very strongly that you will find that your Free T3 is too low.  Since there are reports that the best measure of tissue thyroid levels is the ratio of Free T3 to Reverse T3,  I also suggest that you get tested for Reverse T3 as well as Free T3 and Free T4.  Since hypo patients are frequently deficient in other important areas, you should also test for Vitamin D, B12, ferritin, and a full iron test panel.  If your doctor resists and makes excuses that all these are not important, just insist on it and don't take no for an answer.  

When results are available, please get a copy of the lab report and post results and reference ranges and members will be glad to help interpret and advise further.
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Avatar_f_tn
I met with my Endo and he's totally satisfied with my thyroid levels and doesn't believe it has anything to do with the burning tongue. I asked his thoughts about Progesterone, he deferred that issue to the GYN but thought "maybe" I should have some neurological testing done so he will send that recommendation to my PCP. He did mention in another two years he will be able to start making some changes because I will be 10 years cancer free. TWO years??? I had an excellent Endo where I use to live that started with me in the beginning with my thyroid cancer that I am considering writing over the weekend. I am going to send a message to my PCP with your advice and see how far I get with that. I'm in the VA system and although I've always had excellent care, I really do feel like that the issue keeps getting passed on from doctor to doctor and I'm getting nowhere in the meantime.  I was Vit D deficient at one time and was taking 5000 units a day but after moving to Florida I was cut down to 1000 a day because I get more sunshine. Too many changes have been made since coming here and I'm the one stuck with living with this agony. I am going to request the tests that you mention & will let you know how far I get. Thanks so much for all of your information and insight. It helps to know someone is giving more thought to this problem that apparently my doctors.
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Avatar_m_tn
Hello,
My mother had the same surgery and she is complaning about the burning mouth all the time. My doctor sister and all the other doctors insisted its psychological and i started to believe so until i saw your comments here. Can you please tell me if you still have burning mouth complaint? This is important for my mother.
Regards from Turkey
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