# Hyper symp Normal bloodwork but TSI present



## ucfknights16 (Jul 20, 2011)

Hi everyone 

I suppose I should start with some background. I experienced a lot of digestive issues when I was 18. I wasn't IBS, but everything was much much faster. Then, that developed into intense social anxiety that I couldnt control. I'm not normally an anxious person and quite social, so this is a weird symptom. I'm now 22 and things have only gotten worse. It's a miracle I even graduated college in 3 years but I did it. Now I'm taking a year off from school before I go to law school, so I am investigating this even further. As time has gone on, more symptoms have manifested themselves. such as:

Anxiety/nervousness that doesnt respond well to benzos
Heat intolerance
Extreme sweating indoors and outdoors (generalized)
Frequent bowel movements
Fatigue
Metal fog/Concentration problems
Knee join pain and leg pain
Trouble falling asleep, but not insomnia
High blood pressure, high heart rate
I play lots of sports and tire out way too quickly. Shortness of breath
Very thirsty, drink water all the time, thus urinate way too often
Muscle weakness - my workouts suck. I cant even go to the gym anymore

I had a few tests on thyroid done through my university.

TSH 1.460 (0.55-4.78)
T3 Uptake: 39.2% (22.5-37.0%)
T4: 9.6 (4.5-10.9)

**Vitamin D was also quite low

Then I saw this didnt even include free t3, which is essential for diagnosing hyper, so I ordered a test throught an online lab:

Free T3: 3.9 (2.0-4.4)
Reverse T3: 232 (90-350)

Well, turns out this didn't really say much, so I did another round of tests to include everything through a lab since my doctors wont.

TSH 2.520 (.45-4.5)
Total T4 8.4 (4.5-12.0)
**Specimen was lipemic. This may adversely affect results***
T3 Uptake 36% (24-39%)
Free Thyroid Index 3.0 (1.2-4.9)
Free T4 1.3 (.82-1.77)
Free T3 3.6 (2.0-4.4)

*TSI 36% (0-139%)*

So my numbers have fluctuated so much towards hypo and yet I have TSI present in my blood in a significant amount. I still have a bunch of hyper symptoms, but I have been gaining weight lately so maybe thats why my TSH shot up

What is going on? My understanding is that NO TSI should be in my blood, but I doubt I would be clinically graves. No noticeable eye bulging is going on. I do have basically every symptom of hypethyroid though.


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## Andros (Aug 26, 2009)

ucfknights16 said:


> Hi everyone
> 
> I suppose I should start with some background. I experienced a lot of digestive issues when I was 18. I wasn't IBS, but everything was much much faster. Then, that developed into intense social anxiety that I couldnt control. I'm not normally an anxious person and quite social, so this is a weird symptom. I'm now 22 and things have only gotten worse. It's a miracle I even graduated college in 3 years but I did it. Now I'm taking a year off from school before I go to law school, so I am investigating this even further. As time has gone on, more symptoms have manifested themselves. such as:
> 
> ...


Welcome!

T3 uptake is rarely useful except when you see this.
T3 Uptake: 39.2% (22.5-37.0%)

It is high and that points to hyper.
T3 Resin Uptake (hyper if high)
http://www.nlm.nih.gov/medlineplus/ency/article/003688.htm

You should have no and I do mean no TSI;that also points to hyper.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Here is what is going on.

TSI is stimulating immunoglobulin; along comes this guy here (TBII Thyrotrophin Binding Inhibiting Immunoglobulin) who is messing around with your receptor sites. There are also blocking antibodies and immunoglobulins.

This causes your normal thyroid panel TSH, FREE T3 and FREE T4 to come in in the normal range given by your lab. They are receiving mixed signals in the body's attempt to "right" it's self.

Another sign is low vitamin D; your body is down regulating it because once again, the body is fighting back. Vitamin D is known to trigger and encourage antibodies and autoantibodies.
Vitamin D
http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php

My humble opinion is that you should request RAIU (radioactive uptake) to get the rate of uptake and also to see if there are signs of cancer.

And before you do that; it would be a good thing to get all iodine out of your diet a few weeks prior to the uptake.

You are one smart cookie! I have a hard time explaining to others that Graves' is a clinical evaluation. You just put a smile on my hard-working heart!

Hope the above is helpful.


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## ucfknights16 (Jul 20, 2011)

Hi Andros! Thank you for the reply.  It's been tough getting in to see an endo, due to only symptoms being present with normal bloodwork. Now that I have positive TSI, will I be able to see one easily?

Is it possible I've caught an early graves? I have no eye bulging. Or is hashitoxicosis/thyroid cancer more likely?


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## Andros (Aug 26, 2009)

ucfknights16 said:


> Hi Andros! Thank you for the reply.  It's been tough getting in to see an endo, due to only symptoms being present with normal bloodwork. Now that I have positive TSI, will I be able to see one easily?
> 
> Is it possible I've caught an early graves? I have no eye bulging. Or is hashitoxicosis/thyroid cancer more likely?


I always like to say that Hashi's and Graves' are like "Sisters in the 'Hood!" They are closely associated and many who have been diagnosed with Hashi's do go on to develop Graves'.

However, I have my ways and I feel the only definitive diagnosis for Hashi's is FNA whereupon the pathologist looks for Hurthle Cells that are indigenous to Hashimoto's.

In my mind, everything else is a guess but sometimes a good guess based on the reoccurance of certain lab results (High TPO) and sonograms (nodular, grapelike.)

If you are male, the anti is upped in that you definitely need to rule out cancer.

men more likely to have cancer than women
http://www.umm.edu/endocrin/thytum.htm

Thyroid cancer, cold nodules, men, uptake etc.
http://www.aafp.org/afp/2003/0201/p559.html

You don't necessarily need an endo but you do need a doctor (any doctor) who understands this stuff and has your best interests at heart.


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## lainey (Aug 26, 2010)

ucfknights16 said:


> Hi Andros! Thank you for the reply.  It's been tough getting in to see an endo, due to only symptoms being present with normal bloodwork. Now that I have positive TSI, will I be able to see one easily?
> 
> Is it possible I've caught an early graves? I have no eye bulging. Or is hashitoxicosis/thyroid cancer more likely?


Please keep in mind that most endos are not likely to treat you until you are clinical in the sense that your blood work shows hyperthyroidism. Having TSI alone is not going to be enough for most of them, your lab values are going to have to match.

This works for the antithyroid antibodies as well. The doctor can run the thyroid peroxidase antibodies to determine if hashi's could be at work. Your most recent TSH, free T4 and free T3 are quite normal. This likely puts you in a position of watch and wait.

You can ask for further testing such as a sonogram or uptake scan to see if there are structural issues with your thyroid. Results showing an enlarged thyroid or nodules can lead to further investigation.


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## ucfknights16 (Jul 20, 2011)

Just set up the appointment with the endo.  August 9th. I'll be sure to let you guys know what happens.

I'll ask for the RAIU or ultrasound. Which one is better? Not using radiation sounds better to me, but you guys have more experience than myself.


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## Andros (Aug 26, 2009)

ucfknights16 said:


> Just set up the appointment with the endo.  August 9th. I'll be sure to let you guys know what happens.
> 
> I'll ask for the RAIU or ultrasound. Which one is better? Not using radiation sounds better to me, but you guys have more experience than myself.


In my humble opinion, RAIU is best. Ultrasound sometimes does not get the small stuff not to mention it would be good to know what your rate of uptake is.

And, if that is the course (RAIU) please stop all iodine now. That includes supplements and foods. You want to get a good uptake.


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## ucfknights16 (Jul 20, 2011)

Hello again! Just got back from my university because I graduated over the weekend with my bachelors!  Of course I had possibly the worst sweating I've ever been through in my life haha.

My appointment with my endo is tomorrow. About a week ago I saw some hashi antibody tests on sale on an online lab website so I went ahead and did it and got the results:

TPO Ab - 11 (0-34)

Antithyroglobulin Ab - <20 (0-40)

How should I interpret this? It seems pretty normal but I'm not sure if TPO should be 0 like TSI should.

I'm so worried about my appointment tomorrow . I'm afraid my doctor is just going to downplay my symptoms and not even do any screening like an ultrasound or RAIU. I'm gonna be so ****ed off if that happens and I have no idea where to turn if I really am on the wrong track :/. Ughhhhh Sorry for my mini rant, I'm just nervous


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## Andros (Aug 26, 2009)

ucfknights16 said:


> Hello again! Just got back from my university because I graduated over the weekend with my bachelors!  Of course I had possibly the worst sweating I've ever been through in my life haha.
> 
> My appointment with my endo is tomorrow. About a week ago I saw some hashi antibody tests on sale on an online lab website so I went ahead and did it and got the results:
> 
> ...


Everyone has TPO but they should not have TPO Ab.

Here is info on that.

TPO Ab
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

TPO Ab should be negative, 0
http://www.medlabs.com.jo/docs/Leaflet-17.pdf
(The normal thyroid has TPO but should not have antibodies to TPO)

I hate to play dirty but sometimes it is necessary. I would mention cancer several times "if" it comes to that.

You have your lab records. We both know something is not right. Especially w/ the TSI.


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## Lovlkn (Dec 20, 2009)

If the endo does nothing re-test in 2 months and then again and develop some history of labs and maybe you will catch your body when it is showing irregular lab results. Nothing catches a doctors eye better than lab history.

I tried for 18 months for a diagnosis telling the doctors I thought I had a thyroid issue and don't you know when I finally got the doc to run thyroid labs they were all normal due to stimulating and blocking antibodies. It didn't stop me, just a minor delay until I finally got the Graves DX.


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## ucfknights16 (Jul 20, 2011)

Well, my appointment went pretty much as I expected.

I described my symptoms and he felt my thyroid and did a reflex test. Everything was normal to him but he decided to do an ultrasound just to make sure since I had symptoms. I think he literally had to seeing me in a shirt drenched in sweat from just sitting in an office. The ultrasound was according to him, perfect. He said the combination of my labs, reflex test, and ultrasound allow him to confirm with 100% certainty I do not have Graves and 99% chance I do not have hyperthyroid.

I kept asking him about the TSI, specifically about what's considered normal. I said that healthy people are 0-2% and it wouldn't make sense for healthy individuals to have antibodies and he would not believe that. He went on to describe how lab ranges work and said that anything in between 0 and 139 percent is considered healthy.

We concluded with him ordering a 2 hour glucose tolerance test, plasma metanephrines, and a 24 hour 5 HIAA test. The test for tumors were done I guess because my grandmother had a pituitary tumor. He said if nothing comes of these 3 tests, then I am diagnosed with nothing and there is nothing he can do except run a thyroid panel once a year. I am very disappointed with this result.

He may very well be right, but I am still skeptical. I will concede that my bloodwork is normal, my reflexes were fine, and the ultrasound looked good, but how can I have TSI in my blood and it not affect the stimulation of my thyroid?


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## lainey (Aug 26, 2010)

Unfortunately, Lovlkn is right. Really, as long as you have access to a lab, you're not going to get any treatment until your blood work for thyroid justifies it. Testing may help uncover it.

Right now, however, your blood work does not warrant treatment.

Blocking and stimulating antibodies can act in concert for quite some time. You wouldn't be the first person this has happened to unfortunately, nor the first to have symptoms long before they were "eligible" for treatment.

No structural changes in the thyroid per the ultrasound is a good thing.

Keep on with the followup.


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## Andros (Aug 26, 2009)

ucfknights16 said:


> Well, my appointment went pretty much as I expected.
> 
> I described my symptoms and he felt my thyroid and did a reflex test. Everything was normal to him but he decided to do an ultrasound just to make sure since I had symptoms. I think he literally had to seeing me in a shirt drenched in sweat from just sitting in an office. The ultrasound was according to him, perfect. He said the combination of my labs, reflex test, and ultrasound allow him to confirm with 100% certainty I do not have Graves and 99% chance I do not have hyperthyroid.
> 
> ...


I am sorry; you need a better doctor. You should not have any TSI; period. The range is used only to detect movement and establish a baseline.

What kind of sonogram did he do in his office? He did it or a techie did it?

Did he listen to your heart? How was your pulse, your blood pressure?

I know I am not happy; not in the least little bit. You were summarily dismissed. End of story.


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## ucfknights16 (Jul 20, 2011)

lainey said:


> Unfortunately, Lovlkn is right. Really, as long as you have access to a lab, you're not going to get any treatment until your blood work for thyroid justifies it. Testing may help uncover it.
> 
> Right now, however, your blood work does not warrant treatment.
> 
> ...


I agree. It would have been nice if he had run more antibody tests, but I guess I'll just have to do my own lab work every 4 months or so until I am "clinical". Maybe try selenium and gluten free for a bit too.


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## ucfknights16 (Jul 20, 2011)

Andros said:


> I am sorry; you need a better doctor. You should not have any TSI; period. The range is used only to detect movement and establish a baseline.
> 
> What kind of sonogram did he do in his office? He did it or a techie did it?
> 
> ...


He explained the range to me as 1000 healthy people get blood work done and then they base the healthy ranges off that. He used the ranges of things like sodium as an example. Sure, everyone is supposed to have sodium though.

How is this any different than individuals with HIV? If they have any antibodies, aren't they considered HIV? There's no "healthy" level of HIV antibodies that normal people have in the blood.

Sonogram was done by a tech while the doctor watched. Lasted about 3-5 minutes. Then he brought up one of the pictures and showed me around the thyroid and why everything looked perfect. No radiologist looked at it, which I am not sure if thats necessary or not.

Nurse came in, said she could hear my heart beating so she asked some questions about that. It was around 110 and she did not take blood pressure, despite the fact I have sporadically high blood pressure as a listed symptom. Doctor didn't check my heartbeat or listen to it. He focused on reflexes and feeling for inflammation.


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## Andros (Aug 26, 2009)

ucfknights16 said:


> He explained the range to me as 1000 healthy people get blood work done and then they base the healthy ranges off that. He used the ranges of things like sodium as an example. Sure, everyone is supposed to have sodium though.
> 
> How is this any different than individuals with HIV? If they have any antibodies, aren't they considered HIV? There's no "healthy" level of HIV antibodies that normal people have in the blood.
> 
> ...


That is only "sometimes" true about the ranges. There are many many antibodies and immunoglobulins that should not be present at all in the healthy person and as I stated, those ranges are to establish a baseline 
and to detect movement either up or down.

They are actually taken from a cohort of ill persons known to have these antibodies and immunoglobulins. Aaaaaaaaaaaaaaargh.

You are right about HIV and a "whole bunch of stuff!"


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## ucfknights16 (Jul 20, 2011)

Andros said:


> That is only "sometimes" true about the ranges. There are many many antibodies and immunoglobulins that should not be present at all in the healthy person and as I stated, those ranges are to establish a baseline
> and to detect movement either up or down.
> 
> They are actually taken from a cohort of ill persons known to have these antibodies and immunoglobulins. Aaaaaaaaaaaaaaargh.
> ...


Yeah, this is really frustrating. I'm not really sure where to go from here? Would 200mcg selenium and a gluten-free diet do anything? We probably are not allowed to talk about doctors, but I'll travel anywhere in FL or GA to find the right guy. I guess PM me if anyone knows of any.

Until then, I suppose it's wait and see. Thank you to everyone who helped me  I owe ya guys one


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## Andros (Aug 26, 2009)

ucfknights16 said:


> Yeah, this is really frustrating. I'm not really sure where to go from here? Would 200mcg selenium and a gluten-free diet do anything? We probably are not allowed to talk about doctors, but I'll travel anywhere in FL or GA to find the right guy. I guess PM me if anyone knows of any.
> 
> Until then, I suppose it's wait and see. Thank you to everyone who helped me  I owe ya guys one


Go here; these folks know every good doc (and bad) in the Atlanta, Metro area!

http://health.groups.yahoo.com/group/Georgia_Thyroid_Groups/messages

Certainly you should do things to help yourself. Selenium and gluten-free are very good steps. Hubby and I do both ourselves.

We can always PM Doctors. So do check your Private Message box. Others may reply.


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## ucfknights16 (Jul 20, 2011)

Hi everyone! I'm back again. I still haven't had any resolution with this issue. Still normal/boderline hypo thyroid panels but I continue to have lower range antibody levels. Feel like my sweating and anxiety are only getting worse :/.

Just got my TSI done again and it's at 32%. Last time it was at 36% so no change. Are there any other conditions that can cause this type of autoimmune reaction for the thyroid? I would say Celiac but I've been tested for that before and it was negative.

I did get a male hormone panel also, which came back with a low total and free testosterone. Any link between the two? Feel like I'm grasping for straws but I'm tired of feeling like this with no help from doctors


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