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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,778
    • Most Online (within 30 mins)
      7,748

    Megg Heath
    Newest Member
    Megg Heath
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
    • Tammy Pedler
      As soon as I see gluten free I read the labels. I always find stuff that I cannot have on the products them selfs. Like spices, when the labels says  everything listed and then after like say garlic salt then the next thing is spices. When it says that that can contain wheat and other things I can’t have.. 
    • Scott Adams
      While hypoglycemia isn't a direct, classic symptom of celiac disease, it's something that some individuals with well-managed celiac disease report, and there may be a few plausible explanations for why the two could be connected. The most common theory involves continued damage to the gut lining or nutrient deficiencies (like chromium or magnesium) that can impair the body's ability to regulate blood sugar effectively, even after gluten is removed. Another possibility is delayed stomach emptying (gastroparesis) or issues with the hormones that manage blood sugar release, like glucagon. Since your doctors are puzzled, it may be worth discussing these specific mechanisms with a gastroenterologist or endocrinologist. You are certainly not alone in experiencing this puzzling complication, and it highlights how celiac disease can have long-term metabolic effects beyond the digestive tract.
×
×
  • 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.