Question about TSI Test for Graves Disease

[zhunt]

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)

[Lkenzal]

I'm dealing with the same symptoms you explained and am currently awaiting further bloodwork. My TSI is 50 and I don't really know what that means. I think there is a lot of bad information out there regarding thyroid issues. The best place I've found for information and feedback is Stop The Thyroid Madness, and the related Thyroid yahoo group (they have a link on their page).

[zhunt]

Well my numbers continued to go up into normal range and I continued to be sick as a dog with hyper symptoms... they calmed down in late July and I did much better as August progressed. Now here we are in September, my new endo is really good, I like him and am so glad my old one left the area.

I was expecting my numbers to just stay normal and assumed that all the torment with hyper symptoms was just my thyroid waking back up.

But I'm hypothyroid again. Which explains why I feel better and not like I am on crack, but...

I thought Subacute Thyroiditis was a resolving thing, and I do not understand why my body didn't tolerate normal thyroid levels. So scared. Help me understand this. I have researched and re-researched this all to death and there is so very little info on subacute thyroiditis.

[goolarra]

Have you tried magnesium for constipation?  You want to take mag oxide for constipation (though not if you want to raise your mag level).

I have an arrhythmia, too.  Which one do you have?  Mine is WPW syndrome.

Those deciliters aren't very big, are they?  I'm sure you're still feeling very hypo.  Your labs really haven't changed much since the ones you posted on 3/30/15:

TSH: 4.340 (Ref: 0.36 - 3.74 uIU/mL)
Free T4: 0.73 (Ref: 0.76 - 1.46 ng/dL)

How long does he expect it to take to normalize?  These last two labs seem to be pretty stable to me.

[zhunt]

Also gained some weight. Not too much but enough to shoot down my self esteem, and while I have this wonderful dream of getting my heart in shape thru exercise, I just can't tolerate exercise. Always tired, weak, feel like I'm 90. In fact, my 96 year old grandma is in better shape than me. I'm 28!!!

[zhunt]

My goodness the constipation has been the worst of this hypothyroidism. I did taper off the atenolol, just because I guess, since I'm in my 20s, I don't want to be on meds.... but I do have a preexisting heart arrhythmia so I'm checking in with my cardiologist tomorrow.

Latest labs for ya:

TSH 4.430 (Ref: 0.36 - 3.74 uIU/mL) H
Free T4 0.77  (Ref: 0.76 - 1.46 ng/dL)

My endocrinologist had the nerve to tell me that my thyroid is now fine despite the fact that I am literally a deciliter away from still being hypo. WhileI'm sure she is right that my thyroid will continue to normalize (until it blows up again one of these days?) I wonder what my T3 is. Who knows. So irritated with this  textbook close-minded doctor. If I could switch I would but I live in a very rural area and struggle to travel... next labs end of May.

[goolarra]

Well, you are hypo.  Of course, hypo can increase anxiety, too.  All you can do is try cutting back on your atenolol.  Save the piece you cut off...you can always take it later!  LOL  Being hypo is also lowering your BP and HR.

[zhunt]

Hey there - me again, and again, slow at responding. I'd thought of an online lab but can not afford it at all. sigh. My Psychiatrist offered to monitor my thyroid including free T3s, so that is nice. But I was only able to get my TSH and FT4 done last week as that was the only form I had on me.

I got my most recent labs back from last week and I'm officially hypo. I honestly feel like I can deal with the hypo symptoms, since they are supposed to be temporary with subacute thyroiditis, but I'm like ridiculously terrified that I'm going into Myxedema coma. lol, sounds like a stretch, but I spent all year with recurrent c. difficile infections which ultimately resulted in needing a transplant to cure, but I am always at risk of relapse, especially now that my thyroid is out of whack. My body has been through the wringer, to say the least, and I'm on the atenolol still, yet my anxiety is through the roof, because my pulse is too low, and I'm dizzy. My BP is on the low side, too.

Pulse is hanging around in the 50s, and that is scary. BP, has been as low as 85/50.

Tomorrow, I'm going to make a small cut to my atenolol. And, I'm probably going to have some rebound adrenaline kicking in. I'm scared. Thoughts? :(

Here's my latest labs:

TSH: 4.340 (Ref: 0.36 - 3.74 uIU/mL)
Free T4: 0.73 (Ref: 0.76 - 1.46 ng/dL)

[goolarra]

Have you considered ordering your labs from an online lab?  You pay for those yourself, but you get what you want, when you want it.

Well, I guess if they only treat T4, there IS no need to test FT3 or TT3!  I wonder how many patients are nodding off in their waiting room?  LOL

You're not dependent on atenolol.  As you said, it helps with the anxiety.  Once that goes away, I'm sure you'll be able to wean off the atenolol successfully.

How to calculate percentage of range (using your FT4 from 1/15 as an example):
1 - upper limit of range - lower limit of range  1.46 - 0.76 = 0.70
2 - your result - lower limit of range  0.99 - 0.76 = 0.23
3 - divide result 2 by result 1 and multiply by 100  0.23 / 0.70 * 100 = 33%

I understand your frustration.  Has your doctor talked at all about a low dose of meds to see if you feel better?

[zhunt]

Nope, can't order it myself. I'm due to have my next round of labs on the 18th, but I'm starting to feel pretty off, so I called today to ask if I could get them checked maybe a little sooner. They said, after hanging up  a few times on me and then saying it was my fault, that they will have to ask the dr and they MIGHT get back with me tomorrow. Which, I know they won't; they're not in on Fridays.

Additionally the doc will NOT order the FT3 -or- the Total T3. They keep insisting that my T3 has been fine for the last draws, so there is no need to, plus they only treat T4.

I'm getting REALLY irritated. I'm moody, I'm depressed, my sleep is suffering, I'm having anxiety, I have no idea what's going on with my thyroid. They also noted that my most recent followup I was experiencing "extreme anxiety" and I was not. at all. My labs were within range and I felt pretty good.  They keep questioning why I'm still on the atenolol, but they can seriously shove it because my Psychiatrist is now prescribing that because they got me dependent on it and my pulse freaks out without it now. It does help with anxiety.

I remember us discussing most people feel good when they are 50% - 70% of range. How do you calculate that? Just curious and thank you so so much. Sorry if I sound moody, lol I am so frustrated right now. I live on the Pennsylvania-Ohio birderline and there like ten Endocrinologists just across the border, who do not accept my PA insurance. There are only two endos here in PA within a 50 mile radius, and one is the one I'm seeing, the other has horrible reviews on healthgrades. Really trying to figure out what the heck to do.

[goolarra]

WPW is Wolff-Parkinson-White syndrome.  It's a mis-wired heart that makes me susceptible to tachycardia.

I'm sorry she's being so stubborn about FT3.  Could you add it to the lab order yourself?

When hypo, some people have a hard time staying asleep.  

FT3 and FT4 have both come down a lot.  FT3 is only 29% of range.  FT4 is 33% of range.  TSH, on the other hand, is very low.  It hasn't changed a lot since your initial post.  

How are you feeling?  Your labs are getting to the point where you could consider some hormone replacement, but only if you're not feeling well.

[zhunt]

Hey goolarra! Ack sorry for getting back to this late but I have to agree with you and wanted to thank you again and again for being supportive thru this.

What is WPW Syndrome?

Like I was telling Jenn I did see a cardio a few years back for benign sinus tachycardia/POTS. They wanted me on Bystolic but I never took it. Here I am now dependent on atenolol, and it really does keep my HR between 75 - 95ish BPM. I tried to make a tiny, 12.5mg cut to it and had major rebound tachy and even panic attacks. My endocrinologist, who is notorious for pawning people off, told me if I can't just stop it or at least cut the dose in half (I'm on 50mg x1 daily) then it must be an anxiety issue, and so my Psychiatrist is prescribing it now. Endo won't renew RX.

Really wishing I could find a more cooperative endo, but had no such luck looking. :( Also, she doesn't order Free T3. For the last few lab draws, I had to request the FT3, and she would reluctantly go along with it, but at my follow up appt, she INSISTED that she will no longer be ordering the FT3. I asked her, several times, politely, if she could please continue to order it. She'd say, "Why? We don't treat FT3. We treat FT4." My response was, I just want to know what it is! (And from what I understand it's the hormone that causes the most symptoms...)
Still, wouldn't budge. Next round of labs are in a few weeks and are just the FT4, TSH and Total T3. sigh. Followup with her is in a few months.


At that time I was feeling pretty good. My vivid dreams seem to have lessened, so I don't know if that was the atenolol or just some lingering thyroid hormone causing me increased dreams (that was one of my hyper symptoms).

But of late I've been waking much earlier than usual. I was not expecting that. Wondering if I'm hypo now, and if so, why might I be waking early - thought I was supposed to turn into a zombie, lol.

Here are January's labs, taken a few days before I saw her.

1/30/2015

ESR 19
FT3 2.71 (2.18 - 3.98 pg/mL)
FT4 0.99 (0.76 - 1.46 ng/dL)
TSH 0.017 (0.36 - 3.74 uIU/mL)
TT3 95 (76 to 181 ng/dl)

[zhunt]

PS I prolly will go check in with one at some point tho.. I guess

[zhunt]

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...

[Jenn1302]

I would definitely consult a cardiologist.

[goolarra]

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?

[zhunt]

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.

[Jenn1302]

These numbers are definitely above the normal range. I would get a second opinion.

[goolarra]

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.

[goolarra]

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?  

[goolarra]

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.

[zhunt]

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!

[zhunt]

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.

[zhunt]

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?

[Guppy70]

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.