Thyroid Disorders Community
Painful Hashimoto's Thyroiditis
About This Community:

This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Painful Hashimoto's Thyroiditis

I recently read an article entitled "Painful Hashimoto's Thyroiditis" published in the Journal of Clinical Endocrinology and Metabolism in 2003.  It speaks of cases of Hashimotos (not Subactuate Thyroiditis) - in which there is extreme pain in the neck which radiates to ear/jaw/throat etc.  

I wondered if anyone here has heard of or experienced these symptoms with Hashimotos.  I have a 2.4 cm nodule on my right thyroid (detected 7 years ago) and recently have tested for tpo antibodies and given the diagnosisi of Hashimotos.  My thyroid levels are reading in normal range and the TSH is about .4 .

I have suffered with chronic debilitating pain in the neck/jaw/ ear and also shoulder and spine for a very long time.
There are some small herniations in my cervical spine and tears in my shoulder, but nothing seems to explain the level of pain (and quality) that I'm coping with day to day.  I am 44 years old, and extremely non-functional due to pain and also nausea, sweats spasm etc.  

Would be much appreciative if anyone could share their thoughts on what (if any) connection I should make between my symptoms and the Hashimotos/nodules.  I am very tender around the front of neck/thyroid area ...and have what appears to be a fullness above the clavicle on the right (nodule) side.

Thanks for your help.

RobynLee
ps:  I had the nodule biopsied 7 years ago.  Although the report was read as benign (mixed folicular cells) - I am being asked to repeat the test as it was not "impressive" according to my current endocrinologist.  Thanks again.
Related Discussions
19 Comments Post a Comment
Blank
487969_tn?1249316891
I would definitely get another biopsy.  7 years seems way too long to have a nodule without serial testing.  Did the nodule grow in the 7 years??   Just curious.  Also, the nodule is large, why did they not recommend removing it?
Blank
Avatar_m_tn
Ultrasound of the neck can be helpful, as if Hashimoto's disease progresseds over time more nodules can form. Most of your pain can be due to the cervical spine problems[ I have had back injury in the past so I know what I mean], but "part" of the pain can also be result of thyroiditis attaks [kind of similar to "artritic of the thyroid"]. are you taking some sort of antiinflammatory painkillers?
Blank
436191_tn?1256649906
898, just started taking high doses of asprin to test (1000 mg dose).  I do have a lot of what I thought was cervical spine pain...but I also have so much tenderness in the front of my neck and up into my jaw and ear that I wonder what this Hashimotos/nodule may have to do with it all.  Most of my pain is also right sided and that's the lobe the nodules are on (I do have a much smaller nodule along with the 2.4 cm one.  Do you think the inflammation from the Hashi can irritate the deep neck muscles (scalenes, stylohyoid etc.) and add to cervical problems?

mommy2, I have had the nodules monitored and they haven't grown in the 7 years.  I do plan to have another FNA just to be sure there isn't cancer.  If it were cancer, do you expect there would have been growth in size of the nodules?  I understand the biopsy might also give clues as to how much inflammation is taking place there...  

Frustrating... I do notice on here that there is a lot of folks with joint/spine/muscle pain who also have thyroid autoimmune disease.  Makes me wonder.

Thanks much! RobynLee

Blank
620923_tn?1413427272
I also have hashimotos, and the pain u described.I also has cervical spinal stinosis and chiari malformation, so I am not clear on which is causing the symptoms.
I just had anothe US on Fri- no results yet( 6 month check)My nodules were too small for the biopsy.

I have had a gross amount of weight gain in the past 3 months.

I am as frustrated as u!!

Good luck
Godspeed
"selma"
Blank
Avatar_m_tn
The inflammation from Hashi and local swelling of the thyroid can irritate nerves and cause pain, not sure about the muscles; the cancer causes RAPID increase of nodule size in a matter of 2 months; usually the ultrasound is used for monitoring the size of the nodule; the biopsy is necessary if there some changes sbout the size and structure of nodules are noted.
Blank
549614_tn?1315216713
Gosh you've been through the ringer! I hope things get better for you and quickly. I have a few questions... You spoke of a lump near your clavicle... I see a lump in your photo... is this the one you are referring too? How long have you had this lump? Is it slightly lighter or darker in relation too your regular skin tone? Is it hard or fatty/fluid?
Do you have any raised areas on your skin that appear puffy and painful?
I read your other question in the Neurology Forum... How long since having eye problems?
You head and neck pain is just since you had the car accident? But, the pain in your clavicle area radiates towards your ears and surrounding area? Was this prior to the accident?
You state you hurt all over... just since the accident? or was that prior?




Blank
549614_tn?1315216713
Sorry... I found an answer in your post about having the pain for a long time... sorry :(
I do want to ask... do you have any bowel or bladder problems? Kidney pain? Stomach pain ( can be minor for long periods and have flair ups) If so.. where is the pain?
How about leg swelling or fluid retention? Any heart palpitations?  Have you been diagnosed with Fibromyalgia?
I think thats all for now.  I may have more later -lol
TC  
Blank
436191_tn?1256649906
Hi Born,
Thanks for your supprt.  Not sure if the lump is what you see in the pix, but the exposed clavicle is the side the lump is on.  That photo is 3 years old now so I should put up a more recent one.  The lump came on about 6 years ago.  It was 1 year after I had a bout of breast cancer with mast. and reconstructon.  The docs thought it was lymph node swelling and did mri which only showed "muscle edema".  It is fairly firm and tender to touch (as is entire area around and above it).  It was shortly after that that I had difficulty with diving (disequillibrium) and feeling "out of body" a lot.  That is why I posted on the Neuro forum last year asking about vertebral artery issues.  My vision just feels off.. I squint a lot etc.  I think it has something to do with structures in the neck pressing on nerves/arteries etc.

No real puffy or raised skin areas though.  

The clavicle pain sort of radiates upward and then the neck (side of neck) seems to radiate into jaw and ear.  Feels like a cord is tugging me from behind my ear (skull) down the neck and into shoulder/clavicle.

Not sure if that accident is to blame.  Had issues before that but 1 month post accident I felt something "tear/burn" in the neck and things got much wose.

No bladder problems.  Chronic constipation and history of ulcerative colitis which has been inactive.  No swelling... do have muscle pain in areas near kidney (qudradus lumborum/psoas etc).  Heart palpatations are an issue for me... always think it's muscle related.  I also have high heart-rate and low blood pressure.

The rheumy said Fribro back 14 years ago when my pain first began.  He has since said it's more like myfascial pain syndrome (chronic and widespread).  Haven't had a lot of luck with the meds... Currently on Lyrica and Skelaxin with Percocet at times.  Nothing controls the pain I'm in.

Also... had a spinal fusion surgery in 04 (L5S1).   The lumbar issues came first.  All he head/neck stuff came after the breast ordeal.

Let me know if any bells go off.

Appreciate.
Best, RobynLee

Blank
393685_tn?1325870933
You may also want to take a peek at subacute thyroidtis
Blank
436191_tn?1256649906
Thanks Selma, I know ... isn't it hard to tell which pain comes from what structure?
Is your neck pain ever right in the front of your neck (area of thyroid gland)?  Do you have any radiation of pain into the clavicle or upward into jaw or ear?   Any problems with balance or vision?  

This may not be related but it seems so suspisious to me, and the article I referenced in my openning post really depicts cases of pain coming from the inflammation of Hashimoto's.  This is distinguished from  subacute thyroiditis which is viral and passes after some time.  Hashimotos is chronic.

If anyone is interested here is the medline abstract link
Click here: Painful Hashimoto's thyroiditis as an indication f...[J Clin Endocrinol Metab. 2003] - PubMed Result

Selma - good luck with the ultrasound results.  Keep me posted.

RobynLee
Blank
436191_tn?1256649906
The inflammation from Hashi and local swelling of the thyroid can irritate nerves and cause pain, not sure about the muscles; the cancer causes RAPID increase of nodule size in a matter of 2 months; usually the ultrasound is used for monitoring the size of the nodule; the biopsy is necessary if there some changes sbout the size and structure of nodules are noted.

Thanks 898,
I would expect if the inflammation from Hashi could irritate nerves then muscles can certainly get angry too.  Thank you for assuring me that the stable nodules over 7 years most like indicate that I do not have cancer.  I will likely repeat the FNA biopsy just to be sure but I don't expect an issue there.  I do think they may confirm the level of inflammation taking place there however -- do you think?  Seems in the study I referenced above they did get more info on the Hashis from the biopsy.

Appreciate your thoughts!
RobynLee
Blank
436191_tn?1256649906
Painful Hashimoto’s Thyroiditis as an Indication for Thyroidectomy: Clinical Characteristics and Outcome in Seven Patients
Yin C. Kon and Leslie J. DeGroot
Thyroid Study Unit, University of Chicago, Chicago, Illinois 60637

Address all correspondence and requests for reprints to: Leslie J. DeGroot, Thyroid Study Unit, Endocrinology Section, Department of Medicine, MC 3090, University of Chicago, Chicago, Illinois 60637. E-mail: ***@****.

Patients with chronic lymphocytic thyroiditis, or Hashimoto’s thyroiditis (HT), usually present with goiter, hypothyroidism, or both. Thyroid pain and tenderness are rare and suggest an alternative diagnosis of subacute granulomatous thyroiditis or other forms of thyroiditis. We report seven patients with painful HT who had temporary or no relief from L-thyroxine replacement or steroid treatment and required surgical intervention for unremitting pain. Antithyroid antibodies were elevated in all except one patient, in whom fine-needle aspiration and surgical pathology were diagnostic of HT. All patients underwent either a subtotal or near-total thyroidectomy. Pathology showed lymphocytic thyroiditis in all specimens, with varying degrees of fibrosis. Giant cells and granulomas characteristic of subacute thyroiditis were not seen. After surgery, four patients obtained total and permanent relief of pain after subtotal (two patients) or near total (two patients) thyroidectomy, whereas one patient had minimal residual discomfort. One patient had relapse of pain, despite adjunct radioiodine ablation. In this patient with documented total thyroid ablation but persistent pain, the overall clinical picture suggested a strong psychological element in her medical problem. In conclusion, thyroidectomy is an uncommon but necessary therapy for patients with painful HT not responding to medical therapy
Blank
620923_tn?1413427272
Yes to almost everything u asked.....blurred vision, balance issues ( I walk w/cane because of it) I will check out the link......and will keep in touch!


Thanks,
"selma"
Blank
549614_tn?1315216713
RobynLee,  The reason I asked what I have is because allot of your complaints are similar to mine. The lump I see on your photo is at your clavicle (the chain is going across it) on the fight side of the pic (left side of you body). Ohhh I just went to look at it and you’ve changed it. Lol  I take it this pic is up to date?
Do you have swelling fingers or legs?
I have lots of pain in my neck around the thyroid as well. Your complaints sound allot like mine. Though I would not subject you to reading all of my journals … the last possible diagnosis obtained lately has been Decrums disease aka Adiposis Dolorosa. But, you say, you do not have fatty/fluid lumps even if they are just only slightly raised.
So, perhaps this avenue is not the correct one. But, the “tearing” feeling is one of Decrums symptoms as well. So is, fibro, bowel problems, abdominal problems, sleeping problems, night sweats, body Temp regulation, joint & muscle pain, balance problems, sudden vision problems,  and a host of other symptoms you experience. It might not hurt to look into it.
I wish you all the best. I will keep checking back to see if anyone has been able to help you. You are in my prayers.

Blank
Avatar_n_tn
Why are you using such a high dosage of aspirin?  Is it to help you with the pain?  
Blank
599170_tn?1300977493
interesting I have hasimotos,,no severe neck or goiter pain but I have noticed tightening of jaw   was thinking I was getting tmj, gonna talk to my endocrinologist
Blank
436191_tn?1256649906
Lindy,
I was just experimenting with the asprin based on info in the study (above).  I stopped the asprin yesterday as it did not seem to be helping much.  In the cases above though, the patients ended up with surgery because medication (asprin/steroids) did not alleviate the problem.

Cherie, that is very interesting.  I'm not sure the endocrinologists are aware of this possible connection (I asked mine a hundred times if the Hashi or nodules could be contributing to my neck/jaw symptoms and he said - no)... Maybe take the article in with you.  It's obviously not the norm (more the rare cases) that this happens, but if it's 1 in 1000 and you are the 1 it's important to explore - right?

Be well,
RobynLee
Blank
436191_tn?1256649906
To Cherie and anyone interested in reading the free Journal artcle...It can be downloaded for free at the site of Journal of Clinincal Endocrinology & Metabolism (below).  If you do a google search on the title you will find it.  The full article has more details and information for anyone exploring this possilbity.  

Be Well, RobynLee


The Journal of Clinical Endocrinology & Metabolism Vol. 88, No. 6 2667-2672
Copyright © 2003 by The Endocrine Society

Painful Hashimoto’s Thyroiditis as an Indication for Thyroidectomy: Clinical Characteristics and Outcome in Seven Patients
Blank
620923_tn?1413427272
I too have Hashimotos and nodules...I get the jaw pain as well!!My throat feels like it's closeing and I can not swallow...I had the barium swallow test......no one can tell me what it is......please advise it u get an answer.

Godspeed
"selma"
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Thyroid Disorders Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Thyroid Answerers
649848_tn?1357751184
Blank
Barb135
FL
168348_tn?1379360675
Blank
ChitChatNine
Avatar_f_tn
Blank
goolarra
Sisters, OR
Avatar_m_tn
Blank
gimel
MI
657231_tn?1390151580
Blank
rumpled
Northern, NJ
Avatar_m_tn
Blank
flyingfool
WI