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)

[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