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Hashimoto's/blurred vision/ear and jaw pain
Hey everyone,

I've been dealing with these issues for over two years and I'm quite frustrated. I've been to two different endo's and this last one isn't all that interested in my symptoms.

I started on 25mcg of levo two years ago and due to such high TSH levels, I am now at 250mcg! My endo says he only has a handful of patients at a dose higher than 200mcg. He says I have a goiter that is about 3-4 times the size of a regular thyroid but that it's not concerning until it's at least 7 times it's normal size. I often get the feeling of a pill being stuck in your throat, even when I'm just drinking something...and I have a scratchy kind of cough often (this is a symptom within the last 6 months or so..the coughing wasn't bad before).

I have had tremendous ear and jaw pain and my primary care doctor referred me to someone for TMJ..turns out it's not TMJ. Now for the past few weeks I have had such blurred vision that I won't drive at night. Also, for the past two years my main symptoms have been extreme fatigue and insane sweating...lol. It's really affecting my day to day activities and interfering with my life.

I got a blood draw at my current endo about 3 months ago and never heard back. When I called the nurse she said my levels were still off but the doctor would need to call and discuss them. Never heard back so I called again two weeks ago..still haven't heard back. When I discussed the ear and jaw pain with him he said it is completely unrelated but I have heard otherwise. And my primary care doctor is great but she isn't a specialist and doesn't really know how to treat this.

I'm at a loss here and quite frustrated. Countless hours spent on pointless doctor's appointments and it just seems like no one can connect the dots. I don't want to sound like a crazy lady to my doctor's but I know something is quite "off". Any thoughts/suggestions??

Thank you so much.
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1756321 tn?1377771734
Referred ear and jaw pain are uncommon symptoms of Hashimoto's thyroiditis.  My mother was warned of referred ear pain when undergoing an FNA biopsy for enlarged thyroid nodules; the procedure could irritate the cranial nerve near the thyroid gland.  Thyroid eye disease (TED) symptoms include blurred vision. While TED is more commonly seen with Graves' disease, 10% of TED cases are seen with Hashimoto's thyroiditis.

A few articles with more information...

American Academy of Family Physicians - Diagnosis of Ear Pain:

"Thyroiditis - May report pain in thyroid - Thyroid may be tender or enlarged - Referred pain from cranial nerve X (vagus)"

***

Dizziness and Balance - Referred Ear Pain:

"The following can irritate the superior division of the laryngeal nerve (a branch of CN X) and be referred to the ear:

•    Gastroesophageal (laryngeal/pharyngeal) reflux (2%)
•    Cricopharyngeal spasm (1%)
•    Vagal stimulator (1%)

Others:
•    Thyroiditis
•    Thyroid tumor
•    Laryngeal carcinoma"

***

Ch35: Regional and Referred Orofacial Pain:

"Normally, hyperthyroid or hypothyroid disease does not cause localized pain in the neck or referred pain to the face or dental structures. One exception that occasionally occurs is pain that arises from Hashimoto thyroiditis, which is an autoimmune inflammatory disease of the thyroid gland.  It can cause painful or tender enlargement of the thyroid, and in a small percentage of cases, pain can be referred into the mandible or other submandibular sites."

Note: the mandible is the lower jaw. Submandibular is the area beneath the lower jaw.

***

Elaine Moore - Thyroid Eye Disease [TED]:

"Many different symptoms of TED can occur although most patients develop several predominant symptoms. Common symptoms include:

Exophthalmos (proptosis or bulging)
Dryness Redness (erythema)
Eyelid lag
Eyelid retraction
Blurred vision
Tearing
Grittiness
Foreign body sensation
Double vision (diplopia)
Staring appearance"

***

About Guide: The 10 Things Your Doctor May Not Have Told You About Graves' Disease:

"Antibodies known as stimulating TSH receptor antibodies or thyroid stimulating immunoglobulins (TSI) are responsible for GD, thyroid eye disease (Graves' ophthalmopathy) and also the skin condition known as pretibial myxedema."
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Also, you really do need to know what your thyroid test results are, compared to the appropriate reference ranges.  I suggest that you call and ask for all the actual results and ranges.  If they give you any problem, realize that by law they are required to give you a copy of your test results, upon your request.  If you will get the info and post here, members will be better able to assess your testing and treatment.
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ok...so i totally understand your frustration!!  I have hashimotos and have been dealing with the hell that is the standard of care system.  I have come to the realization that Drs do not really understand the complexity of autoimmune diseases.  I have been to many a specialist to only leave feeling small and disappointed.  It is a shame that they do not know how to treat these diseases properly and people are left to suffer alone.  Anyways, i too have constant blurry, and hazy vision but pass all my eye exams.  I have constant full ears that snap, crackle, pop all the time but NEVER pop for relief.  I took hormones with no real results, so i stopped taking them.  I am on a gluten free diet, but have yet to resolve my foggy head, vision, and ear problem.  This of course is just the tip of the ice burg as I am sure you know.  I have a list of symptoms that i combat on a daily basis.  Many people do not understand.  I understand you.....
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I see this is an old post but this is my 2 pence worth. I started this illness with a virus lasted for weeks eventually went but left me with pain and discomfort in right side Adam's apple  jaw and ear. X-rays at dental hospital showed nothing nasty , thankfully. 3 months on very suddenly I lost my appetite completely ate nothing at all for 6 weeks , at the same time all the awful symptoms of hashimoto s kicked in . . It's  a long story of doctors and endos saying  nothing wrong  with my thyroid  eventually being told  I have CFS  read up on it and just live with it  which I did even tho I knew there was a thyroid problem 19 years later I still have the same pain and  discomfort in that area but after a recent ultrasound ,results showed thyroid shrunken . inflamed and thyroiditis ! Obviously the bad flare ups I have are  caused by antibodies attacking my thyroid so the answer is yes this is a symptom also the difficulty swallowing and the irritating cough the dreadful fatigue and burning up together with many more horrid things going on in my body.
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I agree whole heartily , I have been shouted at called stupid told nothing wrong with me it's all in the head and just depressed!i couldn't believe how many people have been misdiagnosed by doctors and endocrinologists who seem to just go by the standard blood tests and disregard the patients symptoms ! It would seem they have never heard of autoimmune diseases of the thyroid . I believe hashimoto s was found many years ago in 1920 s so how is it missed???? I did eventually find a doctor who prescribed thyroxine because he agreed the symptoms all pointed to under active thyroid , amazing first thing to go was that awful foggy brain the lack of concentration the inner tremors way down the muscle and joint pain and the numbness and the terrible fatigue was much better! You say you took hormones with no real benefit hmm that puzzles me as there is no cure for hashimotos only treatment to ease the symptoms , which strangely enough is thyroxine .my new doctor started me on a very low dose and upped it over 3 months and although I am certainly not 100% well I can lead an almost normal life. It seems trying to get the correct dose of T4 and T3 is the difficult part . I would say try again your life is worth more than just an existence , doctors make mistakes they certainly did with me good luck good health to all sufferers of this awful debilitating disease .
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I agree whole heartily , I have been shouted at called stupid told nothing wrong with me it's all in the head and just depressed!i couldn't believe how many people have been misdiagnosed by doctors and endocrinologists who seem to just go by the standard blood tests and disregard the patients symptoms ! It would seem they have never heard of autoimmune diseases of the thyroid . I believe hashimoto s was found many years ago in 1920 s so how is it missed???? I did eventually find a doctor who prescribed thyroxine because he agreed the symptoms all pointed to under active thyroid , amazing first thing to go was that awful foggy brain the lack of concentration the inner tremors way down the muscle and joint pain and the numbness and the terrible fatigue was much better! You say you took hormones with no real benefit hmm that puzzles me as there is no cure for hashimotos only treatment to ease the symptoms , which strangely enough is thyroxine .my new doctor started me on a very low dose and upped it over 3 months and although I am certainly not 100% well I can lead an almost normal life. It seems trying to get the correct dose of T4 and T3 is the difficult part . I would say try again your life is worth more than just an existence , doctors make mistakes they certainly did with me good luck good health to all sufferers of this awful debilitating disease .
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I dont know if anyone will even see this, but its seriously helping me to write this. I was leading a normal, very healthy life til around 3 months ago. I had been on Armour thyroid for about 10 years, due to hypothyroidism. Well 3 months ago, i saw a new dr., who checked my thyroid again, found outmy reading was triple what it should be. She wanted to put me on Levo beecause she said its easier to control, so after a couple weeks, I started having severe headaches, among a million other issues. So after another month, even tho my thyroid was in the normal range, i had her put me back on Armour. 6 weeks later, i saw another dr, because i wasnt happy with the previous one, she checked my thyroid, and this time my reading was double the normal. She put me back on Levo at 125 mcg. Its now been 2 weeks and I was starting to feel halfway normal again, until yeaterday. The symptoms all started again. Depression, panic attacks, shaky, cold inside my body, headache on left side, as well as tightness in my ear and thyroid gland area. I am dizzy. No blurred vision. I havent been back to the dr.for followup yet, because I think its too soon. I guess I should mention she told me it sounded like I have Thyroiditis, which after much research, must be the same as Hashimotos. This ear pain and pressure in that side is really scaring me. Its definitely not normal, and i am scared something else is going on. i am considering going to urgent care today instead of church, because I am afraid if it gets too bad, it will cause me to have a panic attack. If anyone sees this and has any insight, i would really appreciate feedback. Thank you. Debbie
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19978944 tn?1487765932
I went through the panic attacks and all the other symptoms that come with untreated Hashimitos. Stay on top of your TSH levels. Adjust your synthroid untill you can stay in proper range. Ask for Ativan to take temporarily so you can get on with your day to day life. Good luck and don't give up the fight.
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Please post the results from your thyroid tests, along with reference ranges shown on the lab report, from before and after the switch from Armour to Levo.  
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I am in a similar situation to all of you and started tdo take thyroxide from doctor, would find that after taking it for a few days I would get bad side effects and need to stop as they were worse than symptoms. I still find that whatever I take builds up in my system and I need to give it a break but find that the natural thyroid is better, less side effects. You hve to get it yourself privately, I found one manufactured in Ireland which I got on ebay and the other on Amazon which includes a little kelp.  Both help me but in both cases I need to take them for a bit then stop and then start again. And no it is not better to take a smaller dose etc have tried all that and it does not work.
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It might be a good idea to test your ferritin and also cortisol levels.  For the best cortisol test, do the diurnal saliva cortisol test, which are four tests done at different times during the day.  
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I am sorry to read of so much suffering at the hands of the medical community. I developed subacute thyroiditis, which in my case was the painful version. Thyroid inflammation indeed can cause referred pain to the jaw and ears as well as the front of the neck, swallowing pain, and general miserableness. (See also jaybrookes entry above) You may find yourself wondering if its your teeth or TMJ or an ear infection or sinusitis or a common sore throat. There are also cases of painful Hashimoto described in the medical literature, which may have a similar pain scenario. Thyroiditis can damage the thyroid in waves in different areas, each time causing a recurrence or worsening of symptoms (pain). The clinical outcome for Hashimotos is hypothyroidism. The clinical outcome for thyroiditis is hyper, followed by normal, followed by hypothyroid, and most often back to normal, over the course of several months. I know more about the thyroiditis than Hashimotos so can really only offer my experience with that condition. My symptoms were nearly instantly resolved with a short course of prednisone, which points to the inflammation as the source of pain. In my dealings with doctors I learned that thyroid and referred pain is somewhat uncommon, and found myself needing to repeat my symptom complaint. My advice is to keep kindly repeating that which you need to have taken care of until it is addressed to your satisfaction.
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My name is Freya. I have suffered for 30 years with Hasimoto's with no answers; until 3 months ago. I am on 48 mgs of Levo, 2 Hormones, etc. I have been SO dizzy...vertigo, now last nighr, lost 85% of my vision in my right eye! This disease is evil! THE Diet Is So Restrictive I now look at food in the grocery store, as pure poison! To eat truly Organic, you need to be a millionaire, and even then, everybody's body is different! I take 100 Billion of a Probiotic a day, absolutely essential. I have cut all all wheat, bread, starch, but really do not feel any better. I eat a lot of salad, fish, chicken, nuts, Ppmehranate juice,Avacados, and a half gallon of Distilled wate a day.Essentially, this disease ***** and there really are not a lot of answers...you just have to find YOUR way, in a sea of ambiguity! Good luck to all of you....
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I have jaw, neck , & sore throat.  I am going on a green leaves diet with taking vitamin D, B12, enzymes,& prebiotics. I was told to stay away from processed food as it has sugar added. This is a hard adjustment but my body needs to get healthy.  I am currently waiting for the endocrinologist office to contact me to set an appointment.  I have been tired for years and thyroid is always normal. My dr ordered an ultrasound due to swelling and neck pain. They found nodules again. Three years ago I had a biopsy of the nodules.  Now I am worried that they have become cancerous.  I do not understand why Dr's. Have to be so judgmental when we patients are telling we don't feel good do something...
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I don't really think you will be successful at controlling your Hashi's through an organic diet.   The best way to live with Hashi's is to get your thyroid med type and dosage adjusted so that your Free T4 and Free T3 are high enough to relieve symptoms.  Along with that you will need to test and make sure your Reverse T3, Vitamin D, B12, ferritin and cortisol are optimal.  That is a whole lot more effective than an organic diet.  What that is supposed to do for the Hashi's, I don't understand.  

If you want assurance of this, then go to my journal page at this link and there you will find a link to a paper on diagnosing and treating hypothyroidism.  I highly recommend reading at least the first two pages, and more if you are interested in the ananlysis and scientific evidence for what we suggest.  

http://www.medhelp.org/user_journals/show/2019570/Diagnosing-Treating-Hypothyroidism-A-Patients-Perspective?personal_page_id=12021
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Please post your thyroid related test results and reference ranges shown on the lab report.  
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19978944 tn?1487765932
I also have been suffering with Painful Hashimitos. Thyroid pain which can go from medium to severe. Also severe inner ear and throat shooting pain . I have to constantly explain to doctors after doctors and Endo's and ENTs every time I have a flare up. I have tried Prednisone multiple times and diet restrictions and synthroid dose increases and decreases. I have tried naturopathic routes and every other possible remedies. I am currently in a thyroid flare up and this time my ear pain was extremely sharp constant and prevented me from even sleeping. I am currently in extreme agony right now and nothing is helping. I have been prescribed pain meds that could drop an elephant and nothing is even dulling the pains. I want to die but I have a wife and a 1 1/2 year old baby who need me. I am freaking out because nobody is even trying to help me find a treatment that will work. I feel like because it's such a rare version of Hashimitos and such painful symptoms I feel they are assuming I am making it up. I am not a med  seeker or a attention seeking liar. I just want to live life without constant Cronic extreem pain. I deserve the benefit of the doubt and some connection of these symptoms to a possibility of lessening my flare-ups. When my TSH is in range life is still **** and hard to deal with but I would ask for that than this hell I'm going through right now. This is my 4th extremely painful thyroid flare up since I was diagnosed almost 4 years ago.please if any doctor is reading this believe me your patient is suffering, help them.For anyone else hang in there I want to say it will get better for us with more awareness and research. Im a 40yr old who has man with Painful Hashimitos thyroid disease who lives in Vancouver BC Canada. I only want to live my life without this curse of a disease. I love you my wife you are suffering from my suffering and it's not fair. I love you my son papa really wants to be able to be there with you but instead I'm suffering in silence and just look frumpy all the time.
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20017644 tn?1488513595
This disease *****. Reading your account is heartbreaking. I was recently diagnosed with hashimoto's and my meds are right yet..and I feel awful! The struggle is real! Hang in there Dark!!
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I have the same issue and it is so depressing to experience such pain and no one belives.me. Just want you to know you are not alone. It just sucks.
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Please tell us more about your symptoms and also your thyroid related test results, and reference ranges shown on the lab report.  Also,  assuming you are on thyroid med, please tell us the daily dosage.
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If you will please post your thyroid related test results, your thyroid med and dosage, and your symptoms, perhaps we can help interpret your situation and give some advice.  
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Hi everyone. My lab results showed thyroid  Antibodies- 19 and tsh 2.9. I have some weird facial pain/tingling - could this be related?
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What was the reference range shown on the lab report for the TPO ab test?  Do you have any other symptoms?
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I am 34 year old female mother of 3. Diagnosed with Hashimotos thyroiditis for 2 years now. I lost my job due to this. Missing work and being late. I've found work that is less physically demanding but I'm making half the hourly wage I was before. Anyway...neck, jaw, ear pain, headaches, body aches, trouble swallowing food and pills, almost everything upsets my stomach at this point. I live in Tulsa, OK and am looking for a new physician as my old endo and primary didn't believe my symptoms were related to the hashis so they wouldn't approve my FMLA paperwork hense losing my job I had since 2009 because my body needed rest after a hard day but whatever. Many other symptoms, swollen tongue, dry skin, thinning hair on my scalp but thickening and darkening of jaw hairs that use to be blonde or non existent. Chronic fatigue, memory fog, headaches, sometimes I can't tell if I'm tired or my neck just hurts so bad I want to lay down either way I'm exhausted. Blurred vision in right eye which my nodule is on right side of thyroid which is where all my referred or inflammation pain is. I use Vicks on my neck and behind my ear it helps get me through the day. I take 2 benadryl at night to help me sleep. Lately I wake up from the ear pain and stomach discomfort... Nausea. To everyone suffering I feel for you and pray we find relief someday. Also how many of you worked around radiation, xray machines??
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Are you on thyroid med now?  If so, what type and daily dosage?  Please post your test results and reference range shown on your lab report.  I have names of two doctors recommended by thyroid patients in the Tulsa area.  Sending you a PM with info.  To access the PM, just click on your name and then from your personal page click on messages.
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I am so sorry to read all your comments, specially yours JengaMom. I am also 32 and with 3 little ones. I have Hashi's for about 2years now. I have found great success with the AIP Paleo diet. Def. no gluten. Its not just Hashi's its usually related to adrenal fatigue and gut issues like leaky gut. The medical community is of no help, I am def working with an endocronologist that works well with me and my wishes and also seeing a wellness doctor (hollistic).

YOU ALL MUST CHECK OUT Dr. Westin Childs. I found his website 4 weeks ago and it has changed my life. Finally somebody who understands the Thyroid and all auto imm. I am on the path to healing. God bless you all, I am so sorry for all this discomfort and pain.
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