We've had members with sub-acute thyroiditis, but I don't think we have anyone active on the forum right now. Many end up going permanently hypo, at some point.
What were the latest results of your actual thyroid hormone tests. If you'd care to post them, with reference ranges, we might be able to give more insight.
If you've been hypo for a while and you suddenly have thyroid hormones again, it's not unusual to feel a bit hyper, because your heart beat and metabolism will be "normal" again, body temperature will return to normal, etc, whereas with hypo heart rate, metabolism and body temperature are typically low. It would be similar to being hypo and starting on thyroid hormone medication... you're body is getting hormones, it's gotten used to not having, so it has to adjust to having them again.
Were you ever tested for Hashimoto's? It's quite common for the early stages of Hashimoto's to bounce between hyper, hypo and normal, before ending up permanently hypo... You should ask to have antibody tests done to confirm or rule that out. The tests you need are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb)
Hi there! I had SA too last year, what a ride. By September I had to get on levothyroxine because I became very hypo. I'm still on the levothyroxine and while I'm in range my FT3 is borderline low and I still have hypo symptoms, fatigue and weakness are some of them. I've also developed psoriasis since last fall.
I'm terrified of getting this again, I've read about some poor people going through this like 5 times. The pain was excruciating and my anxiety was out of this world. Did your thyroid swell up too? Mine got so big you could see it on my neck. It started with a small lump on my left side that woke me up at night and then rapidly swelled all over.
Did you also get these night sweats? I was drenched in sweat at least three times a night, having to get up and change clothes and I had to sleep on a bath towel. I ended up throwing away my pillows due to soaking them, it felt gross.
If you feel hyper you should call your endo and ask for a thyroid panel now just in case. I've read a study (Japanese I think) that showed a significant number of people developing Graves' disease a few months after having SA.
It's nice to "meet" someone else that has been through the same thing, this seems so rare. But of course I had to catch it...:)
Thank you so much for responding. I'm at my wit's end. goolara has also been talking to me a but through out this and we are all a little stumped, but one thing I noticed personally is that I went from hypo to normal within 3 weeks, seems a little fast to me. Now, everything is happening the same way it happened when I first went hyper in October - it's like I'm reliving the nightmare perhaps on a less intense level this time. I can't help but think that I may be developing Hashitoxicosis or suffering a recurrence of SAT somehow, but when my antibodies were tested when I first went hypo, they were within range.
I have a ton of tests, but not real recent ones as my endo will only test TSH and sometimes T4 at this point. She insists I am fine, a textbook case of subacute thyroiditis even though I didn't have a virus preceding it and my thyroid really didn't hurt, maybe was mildy tender, and, it wasn't swollen either. My ESR was normal everytime I requested it be done. (ultrasound said it was fine, although the RAI % uptake was very low).
Labs.... these are extensive. The hospital did the most thorough labs. Other labs, I kept having to request them because my endocrinologist is completely negligent. She's also leaving the area this month. Can't find another as I live in a rural area.
Began with symptoms in early September 2014.
Oct 27 2014 caved in and went to ER
TSH: 0.011 L (0.36 - 3.74 uIU/mL)
Ft3: 9.88 H (2.18 - 3.98 pg/mL)
Ft4: 2.92 H (0.76 - 1.46 ng/dL)
Thyroglobulin: H 80.6 (2.8 to 40.9)
TgAb: <1 (Ref: <OR=1)
Thyroid Peroxidase Antibodies: 2 (Ref: <9)
Admitted to ICU for crazy heartbeat
----Began Methimazole 15mg/day, bad reaction, then PTU 300mg x3/day and atenolol 50mg/day---- released next day due to risk of c. difficile infection (had a fecal transplant for recurrent c. difficile in May 2014)
TSI Antibodies 32 (Reference range: <140 Unit: % baseline)
Ultrasound: normal with questionable 1mm cyst, no goiter (though my entire life my thyroid has always looked big...)
RAIU Uptake: 2% at 6 h, 1% at 24 h
Scan undetectable due to low uptake
Diagnosed Subacute Thyroiditis at this time, ----off and stayed off PTU and all ATDs, stayed on 50mg atenolol-----
12/17/14 -- still having hyperthyroid symptoms
Ft3 4.44 H (2.18 - 3.98 pg/mL)
Ft4 1.51 H (0.76 - 1.46 ng/dL)
ESR 16 (0 - 28 mm/h)
1/30/2015 -- feeling much better
TSH 0.017 L (0.36 - 3.74 uIU/mL)
Ft3 2.71 (2.18 - 3.98 pg/mL)
Ft4 0.99 (0.76 - 1.46 ng/d)
ESR 19 (0 - 28 mm/h)
3/23/2015 -- feeling fine, a little sluggish
TSH 4.340 H (0.36 - 3.74 uIU/mL)
Ft4 0.73 L (0.76 - 1.46 ng/d)
TSH 4.430 H (0.36 - 3.74 uIU/mL)
Ft4 0.77 L (0.76 - 1.46 ng/d)
4/27/15 Came off atenolol 50mg, 2 week "taper" due to bradycardia, 2 weeks later went into withdrawal with tachycardia, anxiety, nausea, tremors, etc. reinstated atenolol 5/17 but symptoms persist and now include waking up every half hour again, light periods again, fingernails growing like weeds, rapid weight loss that continues to keep going down...reliving the hyperthyroid nightmare to a T
At first I believed this was atenolol withdrawal. But having reinstated the drug, the hyperthyroid symptoms are only worsening with time. Atenolol keeps my heart rate in the 80s and 90s during the day but by morning it is in the upper 100s again and again and I am just not able to stay asleep, losing weight, nauseous, tremors, anxiety, nails growing too long, just like it was when I was hyperthyroid.
TSH 3.680 (0.36 - 3.74 uIU/mL)
Ft3 2.70 (2.18 - 3.98 pg/mL)
Ft4 0.91 (0.76 - 1.46 ng/dL)
So those are my latest labs. My endo's office told me due to insurance purposes they don't want to check my labs again until August and they will only be checking my TSH at that time... despite my increasing hyperthyroid symptoms. :( Sorry this was long. Just really suffering here.
I'm sorry to hear you're not feeling well and more like hyper, I know what an aweful feeling that is. And I'm sorry your endo don't take your symptoms serious. My endo refuses to test my FT3, I have no clue why and it's really annoying.
I just drove to an independent lab 1,5 hrs from my home just to pay for my own thyroid panel, FT3 included. It was $79 and I got the results in 2 days and I can clearly see my FT3 is borderline low within the range. Which explains why I still feel tired and why I can't lose these pounds. I used to be 130 lbs before the SAT, during I lost tons of weight because I couldn't eat due to the pain. And now I'm 168 lbs, no appetite and a tired mess.
If you could you should change endo but I know how hard it can be. But you should insist on a thyroid panel and I don't think your endo "can" deny you one if you describe your symptoms. I know mine said in March, my last visit, that if something comes up (hyper symptoms) I can call in and get tested right away. But yea, maybe it's different since I'm on levothyroxine.
Just the fact that your endo only wants to check your TSH now, very infrequently, is reason enough to look for a new endo. That's just not good medicine.
And if you get really bad, shaking, sweating, pulse over 100 etc you should go straight to the ER, better safe than sorry.
I'm not sure about it but maybe your own body still needs to get used to have the proper amount of your own thyroxine in the system after being sick. But it still sounds weird, your own body should know how to proper dose itself to reach equlibrium without giving you hyper symptoms along the way.
I do remember though that I had days when I still had to pop an Atenolol due to a rapid and hard heartbeat even though I was severely hypo. And I hated the Atenolol, they made me feel like I walked in molasses when hyper.
I hope you'll feel better very soon and that you'll get some help. Please let me know, I'll be checking in here regularly.
PS: I didn't have a virus either prior to my SAT, I didn't even have a cold. But my endo still insist on telling me "I had a virus" and that's what caused the SAT. I guess that's because the medicinbook says so.
I'm still doing terribly,so my dad made an appointment with a new endo. Further away, not sure if she will be another textbook quack.
I have heard that they are all the same and once you get that low RAIU combined with hyper, you are pegged as subacute thyroiditis that will magically resolve on its own. I'm month 9 into Subacute Thyroiditis. I did quite well after the first 5 months of hyper, I didn't do too bad when I went hypo either, but now that my thyroid is showing signs of working again, I feel thyrotoxic PLUS hypo. I'm weak, fatigued, but I barely sleep. I have several, often loose bms a day. I have anxiety all...day...long... and with it comes nausea.Malaise. I have some pain in my inner left ear and difficulty in swallowing. My periods are super light, fingernails are growing too fast, and I tremble all the time. I have been pretty much living on smoothies and my parents are a nervous wreck about me. I'm 28 years old and I feel so terrible for stressing out my mom and dad - they have enough problems.
I've been back on atenolol since this all began to keep my heart rate more stable but in the morning before I take it, my heart rate is often in the low 100s.
I'm starting to think that maybe I'm just insane! Like this is it, I lost my mind. I have this feeling that there is some thyroiditis occurring again but obviously my bloods in May are not reflecting it...
I see that you did have some TSIab, which we shouldn't have. So to me that would be a red flag. I know the docs say that it's "normal" to have some antibodies without actually having Graves but some say we should have zero and even a fraction means there's activity. Same with HIV, if there's the tiniest ab, there's HIV. No ifs or buts about it.
My sister got diagnosed with Graves early last year and her ab's were within the range at the time.
My endo refuses to test my ab's. She said, when I asked, that "they don't tell us anything anyways", which is kind of shocking to me.
Getting the right diagnosis and treatment for any thyroid conditions seems to be a complete lottery in how your endo performs as a doctor. If I could I would look for a new one but I'm stuck for now since I'm on Medicaid and no one around here accept new Medicaid patients.
Everything I've read so far about SAT says that about 15% (some even higher) develop permanent hypothyroidism after the inflammation. So it's important that the treating doctors take all the symptoms serious. And I really hope your new endo will be one of these great doctors that listens to the patients and treat accordingly.
I remember you telling me about that, with your sister's TSI being like 200 but her endo didn't feel it was high enough. Sounds like it was high enough to me. :\
The thing about my TSI test is that I was on PTU for 2 weeks when the test was taken thinking I had Graves', and Methimazole for a few days prior to the PTU. I do wonder how that affected my TSIab, but, I guess it doesn't much matter since I went hypo as predicted by this eye-rolling endo.
I also had tested as 2 for TPOab with a ref range of less than 9 being "normal"
I don't understand the antibodies tests. at all. I've heard some people say, it's abnormal to have ANY antibodies, and other, like my endo, who say, it's below the reference range so it's negative. What gives? :(
I hope you can get some done or ask your PCP to order them. I am on Medicaid/Medicare too so understand the frustration.
Something that I found to be peculiar was that, a few months before the onset of my disease, whatever the heck it is, Subacute? silent? (I didn't have a virus or pain, just slight tenderness if I pressed on the gland, and my sedrate was normal) the beginning of Hashi? I was in the hospital for an unrelated illness, a stomach infection, and because my heart rate was high from dehydration they just randomly checked my TSH, and it was 3.6. Upper range of normal. This was about 3-4 months *before* I went hyper and my TSH dipped to 0.017, andto my knowledge, it's not really a result that most people consider normal? I did raise an eyebrow when I looked at it, as their range went up to 3.6 at this hospital, so one more number to the right and it would have been flagged as high TSH.
I remember getting a huge hyper symptom flare after having the RAIU test done, that lasted for all of December, but I was still testing hyper, too.
I just don't know. If I have Silent Thyroiditis, it is known to recur and bounce around and even turn into Hashi. Some people develop Hashi after Subacute too but less often. Either way I feel like my thyroid labs being all over the place has to be indicative of some kind of thyroid disease that isn't going to just magically resolve on its own and not in less than a year and not with a history of a TSH that is constantly on the high side of normal. It just doesn't make sense.
And I'm wondering if I could devlop Hashi antibodies later? and if the PTU affected my TSI result. sigh
Oh forgot to ask... how long did the lump in throat feeling last for you? It seemed to abate for me around the 5-6 month mark after being hyper, stayed away with a bad day here and there, but in mid May when all this crap started up on me again.... it has been the single most debilitating symptom.
When I try to eat, it makes me nauseous, sometimes it makes swallowing my own saliva difficult. My swallow reflex is quite delayed, sometimes having to consciously force myself to swallow my own saliva. It makes me nauseous, sometimes feels like my own tongue is in the way, and it makes eating very difficult. How long can that sort of linger?