# Recurring seasonal subacute thyroiditis?



## Nova8 (Oct 30, 2014)

Hello, in Oct 2014 I was hospitalized for severe subacute thyroiditis. I had every test you could possibly imagine. I was severely hyper for 5 months, then went hypo for about 3 months, then had what felt like a total recurrence May thru July of 2015.

After all that, my endocrinologist told me I was healed.

But after August 2015, I became very constipated, havinga difficult stool every few days, I gained 20lbs, and my menstrual periods stopped. I am 29. I was like that from Sept to now.

Here it is in May 2016 and I feel like I am having yet another recurrence of Subacute Thyroiditis! I have a stiff neck, vague aches and pains, malaise, pounding rapid heartbeat, frequent bowel movements every day, anxiety, insomnia, vivid dreams and all the other crap I get during the acute phase.

You'd think it sounds like my thyroid is burning itself out eery spring and I'm going hypo every winter. thats what it sounds like, huh? Except that my TPO, Tg and TSI antibodies are negative.

I do not have thyroid cancer!

Please help.


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## Lovlkn (Dec 20, 2009)

> Except that my TPO, Tg and TSI antibodies are negative.


Have you had any antibody testing done since your original DX in October 2014.

Can you please post what antibody tests that have been run with ranges please.


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## Nova8 (Oct 30, 2014)

TPO (Ref: <9 IU/ML)

10/2014: 2 
6/2015: 5 
5/2016: 3

Tgab (Ref: <OR=1) 
10/2014: <1 
6/2015: <1 
5/2016: <1

TSI (Reference range: <140 
Unit: % baseline) 
10/2014: 32 
6/2015: 33

they're all negative. I feel flu-like with neck stiffness and aching, all revved up. The constipation I experienced for 7 months prior to this flare was really strange. The weight gain was too. now it's the opposite. I went 3 times yesterday. And since this all began a few weeks ago I've lost about 5lbs of the 20lbs I gained. I'm constantly having anxiety. I mean, I know what it feels like - I wish I would stop having to question my sanity over it.


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## joplin1975 (Jul 21, 2011)

Actually, you shouldn't have any TSI. So while it's not enough to diagnose Grave's, it is an abnormal/positive result.

You really can't be "healed" from thyroiditis, unless it's viral.

Have you had a thyroid ultrasound?


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## Nova8 (Oct 30, 2014)

They say Graves', Hashi totally ruled out because of the negative antibodies.

That's what the endocrinologists are saying that my thyroiditis was - they say it was viral, I'm healed now based on labs, and to find some other reason for this issue.

I had an u/s when I was first hospitalized for the hyper phase of the subacute thyroiditis. It revealed a mildly/slightly enlarged normal looking thyroid. No nodules. It has never gone down.


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## jenny v (May 6, 2012)

Besides antibodies, what labs are they usually running on you? And how long ago was your last ultrasound?


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## Nova8 (Oct 30, 2014)

Well, while hospitalized in the acute phase, they ran a lot of tests, most of which the attending ER physician didn't even know what they were for. They just ran them -all- because my TSH was undetectable at 0.001 (October 2014)

at that time they also ran the u/s, and an RAIU uptake and scan. The hospital doctors were stumped and clueless. When I saw the endo a week or so later they said the RAIU showing 1% uptake at 6 and 24 hours, combined with neg antibodies, and hyperthyroid bloodwork, this was diagnostic of subacute thyroiditis.

They said it was very rare but it did happen during a mumps outbreak so it made sense. I was so relieved to believe that I'd only lose a year of my life to the disease, but here we are in 2016, and I keep going through 3 month patches of feeling hyper with hyper signs, followed by 6 month patches of feeling hypo with hypo signs.

The endo only wants to test my TSH at this point, but sometimes if I beg enough he will order a FT4. What I have noticed is that I feel better when I'm on the low end of the range (usually when my FT4 goes down to about 0.8), even though I gain weight and get constipated. I feel hyper and flu-like when my levels go up into middle of the range. Which feels like I'm full of adrenaline, anxiety, insomnia, shakiness and constantly going to the bathroom. I'd rather feel hypo and I can't stand these "flares" of feeling hyper that last 3 months and seem to happen every spring.

My TSH remains between 3.0 and 3.9 over the last year. It dipped down to 2 after feeling hyper last summer. My FT4 bounces between low end of normal and midrange of normal. Again, I feel better when it's low end of normal and I feel hyper when it goes to midrange... I can't figure it out, and it seems the doctors do not feel obligated to help me, so they don't; they say, oh, it was viral, it was over a year ago in late 2014, your levels fluctuate within range now, so you are fine. They want me on birth control to start my periods again but the adverse effects of Birth controls outweigh any benefit of bringing my periods back. I hate having periods anyway. I hope they never come back. According to my reproductive hormone labs, I am not in pre-menopause (I'm 29), I just have mildly elevated testosterone, so they diagnosed me with PCOS now.


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## jenny v (May 6, 2012)

Ugh, sounds like you need a new doctor. With all of your crazy symptoms, they need to be running Free T3 and Free T4 every time. I'm wondering if your FT3 is high. You also need another ultrasound if your last one was in 2014.

I have access to a "good doctor" list, if you want me to look any up. Just let me know your city and I can message you any I find.


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## Lovlkn (Dec 20, 2009)

Interesting -

You should not have any TSI.

Agree you need to continue monitoring and have another ultrasound.

I had mumps and recall hearing about my enlarged thyroid. I was 12 at the time.

Eventually I developed Graves after being pregnant multiple times.


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