Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Painful Thyroiditis?


healthy-000

Recommended Posts

healthy-000 Newbie

Had a foodborne illness for almost a year before it was diagnosed and treated. The doc who finally caught it told me I'm also gluten intolerant (I suspected as such and had already stopped eating gluten--but only after having all of the tests for Celiac's which were negative)

The treatment for the foodborne parasite ended last spring. But, I don't feel like I've really recovered. (I used to workout for 2 hours a day, 1 hour in the a.m., 1 hour in the p.m., up in heart rate zones 4 and 5; These days, I haven't been able to work up to 20 minutes at one time of steady aerobic activity.)

About 2 week ago, got a severe sore throat--worked its way up into my ears, back of my head, jaw, and started radiating down into my chest.

Went to the doc (after 10 days of pain that seemed to just get worse). Doc told me it's my thyroid (inside of throat is fine). My blood pressure was 111/44. Blood work is currently in progress.

The pain is horrible--Advil helps. I'm also super exhausted. (Advil helps the exhaustion a bit, but caffeine doesn't help it at all and I don't have a high caffeine tolerance so it should be helping--but doesn't).

If you've had anything similar (any sort of painful thyroid condition that popped up out of the blue) how long did it take to go away. What caused it in the first place?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

Yes, this is just the way my Hashimoto's thyroiditis started up. It was a very painful sore throat, and I felt as though I had a terrible flu. It took about six months to simmer down after I started on thyroid medication. I was told that it was because it was very inflamed. I had a PET scan after three months on the medication (for breast cancer, not my thyroid), and I was told that the thyroid still looked very inflamed. Because it's difficult to judge how much medication is the right amount during the first year or so, whenever I became more hypothyroid, the inflammation would worsen. It just takes a while to balance out the medication--also, a dying thyroid tends to produce thyroid hormones sporadically for a while until it finally fizzles.

mommida Enthusiast

You need to get another doctor's opinion. My endo went into hyper viligant mode about neck pain pain before. There is a condition that comes on suddenly and it is very serious. Make sure you see and experienced endo.

Some of the other problems might be cleared up with probiotics. You system may be out of whack from the strong antibiotics.

It is possible the original parasite infection hasn't resolved. The problem is so many different problems present with similar GI symptoms.

healthy-000 Newbie

thank you for your responses. I forgot to mention, the doc only mentioned that the location of the pain was at my thyroid (no diagnosis yet, pending test results). it's suspected to be an auto immune thyroid issue, but nothing final yet.

going in again in a couple days (when the test results get back). I'm sure I'll be referred to an endocrinologist if necessary. my gp is good about referrals.

pain was worse this morning (woke me up at 4:30 a.m.) and I'd taken more Advil (plus an Advil pm) than usual yesterday/last night)

healthy-000 Newbie

Test results are in:

*TSH 0.6 (range: 0.52 to 5.080)

T4 1.15 (range: 0.58 to 1.38)

Thyroid Antibodies: <10 (range: 0.0 to 35)

*for the past 10 years, my TSH has typically hovered around 2.10

Other:

Below Range:

HGB, HCT, Lymph %, Sodium, Urea Nitrogen, Creatinine, Total Protein

Above Range:

Neut %

Misc:

Glucose was near low end--this concerned doc, but I don't know why exactly.

physical exam: enlarged and somewhat hardened thyroid (lots of pain); obvious fatigue/lack of energy.

bp: 112/50

temp: 97.7

I've been referred to an endocrinologist. I tried calling to schedule, but the receptionist hadn't received the referral yet, told me that the docs have to approve all referrals and they dictate how soon patients can schedule based on referral information. groan. kind of tired of Advil being my most important food group. The pain has definitely been worse, and the Advil now wears off much quicker.

Ninetac Newbie

Hello,

I am new here also so if I make some mistake's please someone let me know.cool.gif

Hasimoto's thyroiditis is an autoimmune disease, I have it and have researched this thorughly for past several month's.

First I will say that you can have hasi's and not have antibodies show up when your blood is drawn. There are two type's of antibodies tests you should have run. Most Dr's I have found do not test these. The most common are TPO (thyroid peeroxidase) and Antithyroglobulin .

It is usual to test for these and come back negative because you can have flare up's which can cause a sudden increase in symptom's (this is when the thyroid is being attacked) and then the flare-ups tend to subside after a couple of week's. After the thyroid is attacked you get a "dump" of hormone's; which can make you even hyper. This is the reason a lot of people are misdaignosed with depression or bipolar to name a few.

So hasi's is an autoimmune problem not a thyroid problem per sey and why do I say that. Simply put the body "think's' It's attacking GLUTEN (because the gluten protien and our thyroid protein are very similiar) and it's actually attacking our thyroid. So it stand's to reason if we get our gluten under control we will get our anitbodies under control.

If you are not in a flare your test will come back negative for antibodies therefore most patient's wait until at least 2 or 3 test's come back negative before confirming either hypo or hyper but not hasi's.

However that being said, most people with Celiac or gluten sensitive have an absorbtion issue, if I am not mistaken. Most thyroid patients also have an absorption issue and/or a conversion issue. You may have enough T4 in your body however does your body convert that into usable T3,2 and 1?

You should have more tests taken really, at the very least you should have T3,FT3 (free which mean's what is available for the body to use) ,FT4.

Looking at your lab , believe me I have looked at a lot lately you look as if your sodium is low. You can fix this with himalayan salt or celtic salt. I have HBP and this does not affect it at all...

Your BP is a great indicator of your health. Mine which I did not know was never above 92, if you can believe it. I now take NDT (naturel desicatted thyroid) medicine.

There is this great book called STOP THE THYROID MADNESS that you should read or visit the web site. Also Mary shoman is another great thyroid activist you can google these.There are a lot of people with painful thyroid and noduel's on theirs that don't have surgery.

I hope this helps you some..good luck. I will be looking forward to hearing what the ENDO has to say.

  • 3 weeks later...
healthy-000 Newbie

Dx is: de Quervain's thyroiditis (aka subacute granulomatous thyroiditis or Giant Cell Thyroiditis).

Here's the history:

Day 1 through Today:

severe throat/neck pain. started on left side and radiated into both ears. moved to middle of throat and caused difficulty swallowing and weak voice. moved to right side (radiating more into right ear). moved back to center and caused swallowing difficulties. currently mostly on right side.

started with about 3-4 advil per day, peaking at 10+ advil per day around week 3.

advil pm at night throughout -- at first for pain at night. then I stopped taking them and just took regular advil, but now I have insomnia and am back on them.

also unexplained itchy hives--mostly around neck, that last a few hours and then clearing up completely.

First three weeks:

extreme fatigue (not extreme everyday, but tired everyday). I wanted to sleep all day long--worst sleepiness ever. no appetite. weight loss. low temperature (around 96.5 degrees) and low blood pressure (110/44) and pulse (50 bpm). always cold (I often used 4 blankets and was wearing a sweater while being a complete slug on the couch) lightheadedness, especially after eating.

Blood work:

lower than normal TSH and normal T4 (see first post)

Physical exam:

throat perfectly ok. thyroid slightly enlarged and hardened. tender to touch.

Starting fourth week:

energy increased, blood pressure still low, but pulse very high (95 bpm). intolerance to any pain killer (nausea) except advil. my appetite returned. continued cold intolerance, but not as bad.

Ultrasound results:

thyroiditis

Middle fourth week:

high blood pressure 137/79 (my blood pressure has always been below normal so this is very high for me). moderate pulse. chest pain. appetite returned. energy returned. severe insomnia (I'm taking 2 advil pm at night and still can't sleep--normally 1/2 of an advil puts me to sleep for hours, but not now.) on and off cold intolerance.

Blood work:

TSH 0.1 (range: 0.52 - 5.08) and T4 2.54 (range: 0.58 - 1.38)

Fifth week:

chest pain, headache, purposely cutting down to 3-4 advil a day. 2 advil pm at night because of severe insomnia -- doc visit scheduled for tomorrow to talk about beta blockers for heart issues.

weight loss in past 5 weeks:

12% of body weight (and I started out under weight)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



TeknoLen Rookie

I am not familiar with de Quenvain's thyroiditis but your low TSH and headache, chest pain and weight loss symptoms indicate hyperthyroidism, too much thyroid hormone pumping through your system causing increased metabolism. I would also encourage you to ask him about antithyroid drugs, i.e. methimazole to get your thyroid slowed down.

You or someone else may have mentioned previously so I apologize if redundant, but ask your doc to check your vitamin D level ASAP and consider supplementing some calcium because hyperthyroidism can speed calcium loss and increase osteoporosis risk. You may want to consider adding some magnesium oxide, B12 and B-complex also (all gluten-free of course).

Good luck my friend, it may take some time and some work but you will feel normal (or close to it) again soon...

  • 4 weeks later...
healthy-000 Newbie

End of Jan: I returned to the doc w/ continued hyperthyroid symptoms (lots of energy, racing heart, insomnia, weight loss even though I was eating all day long) and she tested my blood again and put me on blood pressure meds for heart palpitations. At the office, my blood pressure was still within the normal range, but was very high for me (usually, I have hypotension).

Feb 13th: back in again w/ a slight change in symptoms, so doc pulled blood and it came back as follows:

TSH 19 (ref: 0.35 to 5.5) -- yes, that's 19, not a typo

T4 0.4 (ref: 0.58 to 1.38)

Feb 19th: Blood draw again, no results in yet.

Feb 22: starting to feel hypothyroid again (slow, tired, weak, dry skin, puffiness, etc.)

  • 6 months later...
healthy-000 Newbie

another update -- my TSH continued to increase until it was just a hair under 40 (ref: 0.520 - 5.080) in Late Feb. I was put on synthroid and it dropped to 0.15 in March. When it hit 0.15, my synthroid dosage was dropped a little until my doc thought I'd become stable. However, now in Sept, I'm getting thyroiditis symptoms again (hyperthyroid: crave sugar, can't sleep, hot flashes, I talk too much, and same throat pain as before) and my TSH is back down to 0.3. I'm worried about recurring thyroiditis. I had hoped it would go away this summer for good.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    2. - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    3. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    5. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,695
    • Most Online (within 30 mins)
      7,748

    Aanhmcbride
    Newest Member
    Aanhmcbride
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.