Subacute thyroiditis? The uncertainty is unbearable!

[tromblee1]

Hello,

Well, I live in a third world country, and the medical institutions have failed me, so I am wondering if anyone out there has had a similar experience or understands the ins and outs of thyroiditis.

I couple of months ago, I had rather severe symptoms of hyperthyroidism--I can't list them all here, but I was miserable and terrified.  This lasted for maybe 4-6 weeks (depending on how you figure the various symptoms).  Since that time, I have slowly been improving week by week.  However, I am not completely recovered yet.  I still feel ever-so-slightly shaky, have bouts of intense worry, and feel hungry and overheated often (my temperature is running a little high, about 99.2).  I am rather exhausted most of the time.  (This is still much, MUCH better than I was).

Since it came on the heels of a really nasty upper respiratory viral infection and had a sudden onset with lots of fever cramps, I thought it could be some sort of subacute thyroiditis.  There was some minor pain associated in the initial two weeks or so in my shoulders, neck, jaw, and ears, but it wasn't the excruciating pain I have read about.  The ear pain has persisted somewhat.

Could it be De Quervain's thyroiditis?  If so, why wouldn't it hurt excruciatingly or clear up totally after the 4-6 week time frame?  Or could it just be silent thyroiditis?  If so, why would I have had the acute symptoms that I did?

Any ideas?

If it's not something worse, like Graves' Disease (my only risk factor seems to be that I am a middle-aged female), how long should this persist?  It's quite miserable.  I know I should go back to the doctor and get a battery of tests, but I really don't have the money for a good one right now, and, like I said, I have reason not to trust the blood tests in this country.

Thanks to anyone who can help!
liz

[wanderlee1]

How is everyone feeling now. I have had this for 10 weeks and wow the first 6 weeks of hyper were terrible. Did everyone go Hypo and then back to normal?

[Guppy70]

I've had this, starting in April of this year and I'm still not back to normal. My pain was severe as well, my whole thyroid swelled up and I became first very hyper with fever for almost a full 2 months to then drop to severe hypo. I'm taking levothyroxine right now to help with that.
I did get Atenolol in the beginning and was offered Prednisone, which I declined (sounds like the side effects are way worse than the disease) and I lived on a combination of Tylenol and ibuprofen.
I've never even heard of this disease before and this year has been hell on wheels. I've read about a lot of patients who have gotten it again and again. I just refuse to go through this again, lol, and if that would happen I would beg, borrow and steal to have my thyroid surgically removed.

For me, it started with that I woke up in the middle of the night with pain in my neck (front) close to the collar bone. I thought that I've been laying weird with my head somehow. But then it got worse and I felt a little lump in my thyroid. And my pulse went up and my heartbeat became very hard and uncomfortable. After that everything happened very quickly.

And yes, you need to keep checking your thyroid for 1 year +. I hope you'll feel better and never have to go through this again.

[Pradeep61]

I just got almost cured for Subacute Thryditis but it played havoc with me. I landed twice at hospitals for extreme sweating and tachycardia as if it were heart attack or stroke. I suffered from almost all worst symptoms of S/A Thyroditis. Fever for almost 2 months, weight loss (10 lbs), tachycardia, extreme weakness, neck pain, pain behind ears but most of the doctors mistook it for some infection and kept on prescribing me one antibiotic or the other for over a month. In between they advised me to go for a surgery for a perianal infection with pus pocket which they thought was the cause of fever but even after surgery fever still persisting. It used to be between 99-100.2. Finally I landed at Apollo Hospitals Delhi and they diagnosed it Subacute Thyroditis. They prescribed me just one medicine Propranolol 40 (long acting) and told me not to use Iodised salt. I started getting symptomatic relief within 4 days of starting this medication. Fever gone away and I started feeling better and better as the days passed by. I have also started gaining weight and I got my TSH, T3 and T4 tested last week which were normal now but doctor has advised me to get them tested agagin after a month. This disease is very rare. and confusing because of its vague symptoms.  

[maddyDP]

I have this at the moment and believe me it is very painful, both in the throat and the constant crushing headache that accompanies it. I have had it for about 7 weeks now and am still very hyper. Had a thyroid scan today as there are also large nodules on ultrasound, but the thyroid is too inflamed to show up on the scan. The whole thyroid is involved so the scans actually came out completely white, indicating the thyroid is not functioning at all right now. Am on prednisone to relieve the pain (NSAIDS didn't scratch the surface painwise) and reduce the inflamation and have to have all the blood work redone in 4 weeks and the scan redone once the inflammation has subsided. Surprisingly, although I am hyper, I feel exhausted all the time, but paradoxically am not sleeping well. That could be pain related though as it is much worse at night than during the day.

[tromblee]

Hi, I wrote this 6 months ago and I would like to follow up.

I am doing better.  I did indeed get into an overtly hypothyroid phase about a month after writing this--it hit me really hard.  I still believe I suffered from De Quervain's thyroiditis, although I don't have the labs to prove this.

I didn't feel "better" during my transition from hyper- to hypothyroidism--I just felt lousy (and anxious!) the whole time, and if the hypothyroid phase hadn't made me so sleepy and puffy, I might not have recognized it because I retained a lot of hyper symptoms (overheated, hungry all the time, etc.)  It was hard to get out of bed in the mornings.

I am now fully functional, although I still struggle with a strange sort of fatigue and weakness at times.  I don't know what my numbers look like right now, but I am hoping I am not one of the 5-15% who become permanently hypothyroid (if I even am still hypo right now, and not just adjusting to my new thyroid).

This has been pretty much the worst thing that's happened to me to date--I'm sure most people reading this can relate.  Gotta love a healthy thyroid!

[goolarra]

If you should ever decide to go ahead with further testing, I'd suggest adding TPOab (thyroid peroxidase antibodies) and TGab (thyroglobulin antibodies) to the list I already mentioned (FT3, FT4, TSH and TSI).  These antibodies indicate Hashi's, and mixed hypo/hyper symptoms often characterize the early stages of Hashi's.  You could also be in a transition phase of DeQuervain's.

I definitely understand your reservations with regard to testing.  If the labs already have two strikes against them, it's kind of difficult to think about trusting them again.

If your symptoms persist (espcecially the hyper symptoms) for much longer, do your best to get tested there or perhaps travel to somewhere with more reliable labs.  

Best of luck...  

[tromblee1]

Thanks for the support.  I don't really have any reason to think it's anything more serious right now, but gosh darn, it's just dragging on so long!  This is like my 9th week!

Incidentally, I did feel almost normal for a week or two, and now I DO seem to be having some symptoms of hypothyroid:  my face feels puffy, my hands feel puffy, and I've been getting really bloated and crampy after I eat.  I also feel fatigued in ways that aren't quite the same as before (I currently feel like I ran the Iron Man competition yesterday, and then slept for only three hours).

But I'm also having a resurgence/continuation/intensification of the hyper symptoms (elevated temperature, shakiness, crazy hunger).

As to this country, it impresses me in most ways, including medicine.  However, when I was very ill, I went in for blood work and they found nothing wrong.  There was CLEARLY something wrong, and I believe they mixed up my vial of blood with that of the young man on the cot next to me (the nurse didn't speak English and didn't have any papers).  So I was told it was "in my head" and "a desperate plea for attention."  Nope.

I went back for a second opinion, and that opinion was that I was an end-stage drug addict.  

The thyroid tests are quite expensive here, and I hope you can understand my reservations in getting another (at least for awhile).

[goolarra]

DeQuervain's was my first thought.  I thought for a while that that's what I had because, like you, I had had some very hyper symptoms right after a particularly nasty URI.  Everyone reacts differently...I don't think the pain has to be excrutiating.  With DeQuervain's, the initial hyper phase is followed by a hypo phase, which is temporary, but according to my endo can last for up to a couple of years.

In my case, I was ultimately diagnosed with Hashi's, and it seems the URI and onset of hyper symptoms was a coincidence.

Are the lab tests there really that questionable?  (I've lived in the third world and know things can get pretty sketchy.  However, I also found that many Americans were impressed with and surprised at the quality of care that they did get.)  

You should have thyroid hormone levels tested...FREE T3 and FREE T4 (NOT total T3 and total T4) and TSH.  In addition TSI is the antibody test for Graves' and will let you know if this is an autoimmune condition (Graves') or another thyroiditis.