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Question about TSI Test for Graves Disease

I was admitted to the hospital after a month of severe hyperthyroid symptoms that I thought were gastrointestinal/mental, but ended up finding out I had severe hyperthyroidism. There, I had a lot of blood work, and was put on Methimazole and then PTU, and 50mg Atenolol, but when I saw the endocrinologist, she told me the one test the hospital didn't take was the TSI for Graves. She felt I had Graves at the time but I do not have eye symptoms or skin symptoms associated with Graves.

My TSI result is 32 (ref range <140) so she stopped my PTU and now I am on atenolol. My ultrasound is normal. I do not understand how my symptoms and blood levels could be so extreme without having Graves. I didn't have a viral infection or pain in my thyroid but she thinks it's just subacute or silent thyroiditis at this point. I'm very confused.

My question is, is it normal to have any TSI and TPO antibodies at all and does that rule out Gaves? I do have them, they just aren't high.

I have a RAIU scan scheduled in two days.

Here are the numbers I had done on 10.27.14 when I was admitted to the hospital:

TSH: 0.011 (Ref: 0.36-3.74 uIU/mL)
 
Free T3: 9.88 (Ref: 2.18-3.98 pg/mL)
 
Free T4 2.92 (Ref: 0.76-1.46 ng/dL)
 
TRIIODE THYRONINE: 321 (Ref: 76-181)

Reverse T3: 50 (Ref: 8-25)
 
Thyroglobulin: 80.6 (Ref: 2.8-40.9)
 
Thyroglobulin antibodies: <1 (Ref: <OR=1 )
 
Thyroid Peroxidase Antibodies: 2 (Ref: <9)
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Avatar universal
Have you had your pituitary checked? Based on this article http://www.mayoclinic.org/diseases-conditions/hypothyroidism/basics/causes/con-20021179, a pituitary disorder could be a rare cause of hyperthyroidism.

Also, based on http://www.livingwithgravesdisease.com/diagnosis/lab-tests and,  "While the normal range is <130% activity, individuals who are normal do not produce TSI and have levels <2% activity". Also, see http://books.google.com/books?id=Pjf_XuCmbTEC&pg=PT186&lpg=PT186&dq=%22TSI%22+%22%3C2+percent%22+thyroid&source=bl&ots=tmBU1Rh8XM&sig=pgrXvWMNqMcrClwMtlNIA9Q0Ris&hl=en&sa=X&ei=IJ8bVIC5E9iryASTioKQCA&ved=0CCoQ6AEwAg#v=onepage&q=%22TSI%22%20%22%3C2%20percent%22%20thyroid&f=false. Maybe your TSI is related to your thyroid issues somehow. You said it took a month until you were diagnosed and that the hospital didn't check your TSI, so it probably took a while before your TSI was actually checked. Maybe your TSI was high when your thyroid symptoms started and then went down, meaning that you're possibly getting closer to remission (?).

Here is another related thread http://thyroidboards.com/forums/topic/1937-help-with-labs/. Based on this this thread you could have graves even if your TSI is <140%.
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649848 tn?1534633700
COMMUNITY LEADER
It's against MedHelp terms of use to post links to other, competing forums, as you've done above.
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Avatar universal
I'd just like to re-iterate that there's a huge gray area in the TSI test.  As pointed out above, people who don't have Graves' have TSI of less than 2.  140 is the point where most people will start having symptoms...most people, not all.  Some will have symptoms with lower TSI.

However, the fact of the matter is that you are definitely hyperthyroid.  Both FT3 and FT4 are way over range.  So, why did your doctor stop treating?  No matter the cause of hyper, the resultant high FT3 and FT4 have to be treated.

Please list the hyper symptoms you are experiencing.  
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Avatar universal
Sorry, I honestly didn't know.
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I just thought it could be a useful source of information. Medhelp moderators, would it be possible to remove this link from my post?
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Avatar universal
The TSI test measures the stimulating activity of the antibody that causes Graves disease, whch is TSH-receptor antibodies.

If this was caused by your pituitary, then your TSH would be high. And it isn't. A TSI of 32 eliminates TRab as a cause of high thyroid.

So it probably is caused by something else.

I would ask if you have been exposed to any iodine containing medicines shortly before your hospitalization?  Seaweed can have enormous levels of iodine in some plants, and it's well known to cause thyrotoxicosis like this that will take a few months to clear out. They recalled a soy millk with seaweed recently for this very reason.

Sometimes we can grow nodules on our thyroid that will suddenly start emitting thyroid hormones all on their own and not stop.  Have you had an ultrasound done to see if you have any nodules?  (DO the ultrasound, NOT the toxic RAI-U that contains loads of inflammatory iodine)..

These are called autonomous nodules, or "Hot" nodules.  They can function at random times, making it hard to pin down your hormone levels.

There are also many types of thyroiditis, which is when the thyroid gland is being rippped up and spilling extra hormone into the blood. But this usually results in very high T4 and not so high T3.  You have the opposite going on.

Iodine toxicity, Graves disease,  or autonomous nodules all usually present with very high T3 first followed by high T4.  But T3 is usually seen as the one that is highest among the two.


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Avatar universal
My symptoms were just about everything you could imagine that was associated with an overdose of adrenaline, and for that I was placed on 50mg Atenolol while hospitalized. I was on methimazole (bad reaction - pain in bones) then PTU for a couple weeks til I had the rai-u... which determined I had subacute thyroiditis... but I wonder about those antibodies, and it freaks me out that subacute thyroiditis is so rare. I didn't have a preceding virus but had recurrent c. diff infections in the two years prior and a subsequent fecal transplant for that.

The symptoms list I guess I could compile here, but will prolly forget a few things:

all day long panic attacks that never abated
adrenaline rushes all day long
tremors
tacycardia (170 BPM)
waking every few hours during sleep
sweats
frequent bowel movements, including diarrhea and cramping
unrelenting nausea / inability to eat or keep myself hydrated
oily skin and increased acne
hair falling out in huge clumps, like alarming clumps in the shower
finger nails growing weird
pain underneath thumb nails
pale
anemia
elevated temperature
high blood pressure
rapid weight loss
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Avatar universal
Here are my most recent labs (obviously too late to not get the rai-u.... wonder if that is the reason I am having a hard time again lately with hyper symptoms)

Labs 11.18.14 Meds: Atenolol 50mg, stopped PTU 14 days for RAIU scan scheduled 11.20.14

Ultrasound: normal

Free T4: 1.96 (Ref: 0.76 - 1.46) H
Total T3: 276 (Ref: 176 - 181) H

RAIU & scan 11.25.14 Meds: Atenolol 50mg

RAI-u & Scan: 2% at 6 hr, 1% at 24 hr - scan pictures undetectable due to low uptake.

Next labs (TT3 and FT4 - 12.18.14)

My endo emailed me and diagnosed me with Subacute Thyroiditis. But I'm concerned about developing an autoimmune disease because of the antibodies that are present. And my thyroid has always been mildly underfunctional since I was a child. I didn't have a virus prior to this, so it's kind of freaking me out. I wasn't pregnant either, but in May i had a fecal transplant for recurrent c. diff infections.

Interesting that my T3 and T4 are reversed in how they should look. I wish I had an ESR test but doc won't order one. WBC is normal.
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Avatar universal
So, where do you stand now in terms of treatment?

Your FT4 and TT3 both dropped some, which is good, but you still have quite a way to go to get into range, never mind optimal levels.  Was that on or off PTU?
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Avatar universal
Thanks for a response!!! For now my endo has me staying on 50mg atenolol pending my next bloodwork results. When I had my last labs done (11/18) I had been off the PTU for one day, in preparation for the RAIU and scan. After the scan determined super low uptake, she diagnosed subacute thyroiditis and told me not to restart PTU. Told me when I go into the hypo phase, I may need thyroid replacement hormone. But I have heard some controversy on that, and I do wonder about my thyroid, since it's been underfunctional (slightly) all my life. :\
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Avatar universal
The hypo phase of subacute can go on for quite some time.  In fact, it can become permanent.  Some people can't tough it out.  

I'm not sure I understand what you're asking regarding the controversy on replacement and your slightly underfunctional thyroid.  Does that make you reluctant to take replacement hormones?

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Avatar universal
I went through subacute thyroiditis starting this early spring. I'm in the hypo phase right now, on meds.

Your results look pretty similar to mine when I was hyper. I also have TPOab within the range, never tested for TSI. My endo said antibodies doesn't tell us anything. (I disagree)

My SAT was very painful and my thyroid grew really large. It's back to being tiny again.
My hyper period lasted around 2 months, as well as the fever and pain. My sed rate and CRP were very elevated also.

Don't worry too much about the TSI, not right now anyways. But you probably have to go and get tested (thyroid panel) quite often for a year or more. You might need meds too if you drop too much in the hypo phase.

My sister has Graves (she was diagnosed about when I got sick with SAT) and she had around 200 in TSI but her endo said that meant it was negative. We're still a little confused about that statement.

Good luck, I hope you'll get better soon.
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Avatar universal
I'm reluctant to try the replacement thyroid hormone for two reasons, based on things I've read around discussed on the net:

1. I'd heard that replacement hormone in the case of subacute thyroiditis could increase the risk of permanent hypo due to the artificial hormone presence

2. It's been about 3 months and even if I test for hypo (I get my tests ina couple days, will report back here with results) I am still having symptoms of hyper. I'd imagine that thyroid supplements would make these symptoms worse?
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Avatar universal
Hey guppy! How long did you feel hyper? Just the two months? I ask because I'm at the three month mark and I still have a lot of hyper symptoms (palps, heart races in the am before I take my atenolol, frequent bowel movements, lingering anxiety but not as severe)

Also my diagnosis of subacute thyroiditis confuses me because I didn't have a fever, I didn't have flu like symptoms or a virus preceding this. I wasn't pregnant. I have no idea what brought it on. But it was confirmed by the combination od low RAIU uptake with high thyroid hormone levels in blood during the thyrotoxic phase... I did have TPO, Tg, and TSI antibodies tested. I had TPO and TSI antibodies present but they were low.
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Avatar universal
Hey... I have my labs from Wednesday. I don't understand why my hospital's free reference ranges are so much different than many other's free ref ranges...? I know they use different sets of "healthy" people to determine normal ranges, but I don't understand why one hosp may consider my  Free T3 result result to be normal while my hospital considers it high. ? Either way tho I'm still having hyper symptoms. Ever since my last menstrual period about 3 weeks ago... but endo office staff tells me these numbers wouldn't give me symptoms still.

Free T4: 1.51 (Ref: 0.76 - 1.46)
Free T3: 4.44 (Ref: 2.18 - 3.98) <--- I had to ask for this test. doc doesn't find it important (??)
Total T3: 161 (Ref: 76 - 181)
ESR: 16 (Ref: 1-28mm/h) <-- I also requested this one to see if it would be elevated as in the case of Subacute Thyroiditis. Maybe it was when I was at the peak, but it's not right now, making me question if I have the painful/viral SAT or if I have the mysterious silent lymphocytic SAT.

Anyway if these are so normal as my doctor says, why do I still feel hyper? :( My heart still races in the AM, tremors all day, anxiety, frequent BMs - formed but frequent. I pooped five freaking times today!
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Avatar universal
Hi there.  I'm sorry, I see you posted back there a few days ago.  I had computer problems last week and hadn't seen your response.

Reference ranges do vary lab to lab.  Part of it depends on the test kits the lab uses to do the tests, part on the population, etc.  However, unless the reference range is way out of whack compared to what we usually see, we have to use what they give us.  Both your FT3 and FT4 reference ranges are close to what we typically see.

"... but endo office staff tells me these numbers wouldn't give me symptoms still."  In a word, baloney!  Both FT3 and FT4 are above range.  That indicates that you are hyper.  We all have our individual reference ranges.  Some people will feel hyper in the upper part of the population range or even in the middle (I do).  Symptoms are the ultimate indicator.

You're right, ESR should be "markedly" elevated if you have Subacute Granulomatous Thyroiditis (deQuervain's).  That and lack of pain don't fit.  I agree with you that Subacute Lymphocytic Thyroiditis is a better fit.

The fact that your doctor doesn't think FT3 is important indicates to me that he's not a very good thyroid doctor.  That's confirmed if you had to ask for ESR as well.

Your depressed RAIU would seem to rule out Graves'.

I don't find your labs inconsistent with your symptoms at all.  I think you should be feeling hyper with those numbers.  It sounds like you need a doctor who understands the finer points of diagnosing thyroid issues.

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Avatar universal
Hi there.  I'm sorry, I see you posted back there a few days ago.  I had computer problems last week and hadn't seen your response.

Reference ranges do vary lab to lab.  Part of it depends on the test kits the lab uses to do the tests, part on the population, etc.  However, unless the reference range is way out of whack compared to what we usually see, we have to use what they give us.  Both your FT3 and FT4 reference ranges are close to what we typically see.

"... but endo office staff tells me these numbers wouldn't give me symptoms still."  In a word, baloney!  Both FT3 and FT4 are above range.  That indicates that you are hyper.  We all have our individual reference ranges.  Some people will feel hyper in the upper part of the population range or even in the middle (I do).  Symptoms are the ultimate indicator.

I agree with you that normal ESR (should be "markedly" elevated with SGT) and lack of pain seem more consistent with SLT.  Depressed RAIU pretty much rules out Graves'.  

Since you had to ask your doctor to order ESR and FT3, I'm not getting the impression that he's a very good thyroid doctor.  He doesn't seem to understand the finer points of thyroid diagnosis.  Perhaps a new doctor is in order?  
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Avatar universal
OMG, I feel like I'm going a little out of my mind!  I posted my first response, but when I looked at the thread again, it was gone.  By the time I posted the second response, it was back.  Then I posted a comment very similar to this one, and it disappeared.  Let's see what happens this time.  Sorry for the duplication.
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Avatar universal
These numbers are definitely above the normal range. I would get a second opinion.
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Hey! Been a while but just checking back in to let you know, that your responses have meant a lot to me. It took a few weeks, but I think my thyroid numbers continued to go down after I posted this and I gradually felt better and saw improvement. I'm guessing I'm either euthyroid now, and heading hypo, if not hypo already, but not having too much trouble. Being hyper was like being in hell, constantly.
I get my numbers checked this week, it will be my most recent labs since the ones I posted here. My endo for the most part doesn't seem to take the atenolol very seriously or the adrenergic effects that obviously was causing my anxiety so bad. She is known to be very good here, better than other endos, but, not sure if she understands just how bad the hyperthyroidism and/or adrenaline can really disable a person. When I asked about tapering down the atenolol, she said I could cut the 50mg dose in half, and when I tried that, I was pretty sure I was going to have a heart attack. I've been on it since Oct 27th. Further compounding this issue is that prior to the thyroid issues I was diagnosed with Inappropriate Sinus Tachycardia and Postural Orthostatic Tachycardia Syndrome, and even tho I'm pretty sure my thyroid levels are better, I still have tachycardia in the morning before I take my atenolol. I feel like this is going to really suck when I come off of it. I'm going to ask for it to beprescribed in two 25mg tabs so that I can make the smallest cuts possible, and my PCP says I may need to stay on some dose of it because of the pre-existing tachy issues. (when undiagnosed hyper my HR was about 180 BPM), now it's 90-100BPM in the AM and after I take my atenolol it goes down to about 80-85 BPM. at one point it was in the 60s, probably when I was first sensitive to the drug. The only negative side effect I have from the atenolol is vivid dreams at night, sometimes nightmares that wake me, and disturbs my sleep. Again, this might be dose related, so maybe I should taper down, but not come all the way off. I don't know how my endo is going to feel about this, but I'm thinking about consulting with a cardiologist (who diagnosed my IST and POTS back in 2007). I'm really, really scared of withdrawal of the atenolol. Thoughts, very much appreciated. Will make an update after I get the results and have my appt with my endo on Feb 2nd.
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Avatar universal
I agree with you...I'll take hypo over hyper any day and just have a nice nap!  LOL

I've been on atenolol for what must be close to seven years now.  I, too have an underlying heart issue, WPW Syndrome.  Since I finally got on a stable dose of meds, it's been over four years since I had an episode of SVT.  I may no longer need the atenolol, and I've talked to my endo about discontinuing it.  He said I could, but he also said "why mess with what's working?".  At the end of the day, I had to agree with him.

So, do you want to get off it, or is it your doctor who wants you off?
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Avatar universal
I would definitely consult a cardiologist.
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Avatar universal
I'd seen Cardiologists in the past, they ran a gamut of testing and found that I had benign sinus tachycardia, benign slight murmur, and postural orthostatic tachycardia (rapid hr on standing).

They offered BBs, Bystolic but I refused, didn't want to be on meds. Now I find my body stuck on them to maintain a normal HR between 75 and 95 BPM. My Psychiatrist is keeping me on the atenolol for anxiety help. Endocrinologist thinks it's anxiety, lol. Ignorant... I'm not anxious at all, only when I was thyrotoxic...
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Avatar universal
PS I prolly will go check in with one at some point tho.. I guess
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