# New/Confusing Tests



## namaste (Nov 19, 2010)

Hi- I'm a 40 year old female. A year ago, I was running 25 miles a week. Now I'm down to walking.

*Symptoms:* 25 lb weight loss in past year (w/o trying). I am 5'11. A year ago I was a size 8, now I can almost fit a size 2; rapid heart rate (resting heart rate in bed about 105), with some tachycardia nearly every day; depression, anxiety attacks, mood swings; debilitating PMS; With weight loss, I developed lots of pain in hips and neck; developed bursitis in both hips due to loss of muscle mass.

Weakness, esp with stairs or strenuous exercise; some short term memory issues; focus issues; sleep issues- getting to sleep, staying asleep; hair loss at top hairline, and hair overall has gotten very brittle and straight- won't even curl with an iron.

I have had, for most of my life, orthostatic hypotension. Sitting down, or bend over- then come up- feel faint, dizzy, see stars. Blacked out only once.

*TESTS: * TSH- .43 
Regular T3 and T4 came back normal. Radioactive Iodine Uptake came back positive (high), indicating hyperthyroidism.

*Family Doc said:* "You have Grave's Disease," and sends me to an Endo.

*Endo says:* "You don't have hyperthyroidism, your TSH isn't low enough. But we'll run some more tests."

*MORE TESTS: * More sensitive T3, T4- all came back normal. Thyroid Stimulating Immunoglobulins (TSI): Positive at 225% (normal range says 0-139). Echo/Cardiogram- comes back fine.

*Endo says:* TSH is sole determining factor, despite positive Radioactive Iodine Uptake, despite TSI high.

Says I'm not even a borderline hyperthyroid case.

Says I'm at risk for hyperthyroidism, but don't have it currently. He ends with, *"I don't know what's wrong with you."* Refers me back to family doc.

Very frustrated at this point. Tired of poor health. I've been tested for chronic fatigue, fibro, lupus, rheum arthritis, ankylosing spondilitis, celiac sprue, addison's, and have had one cortisol test.

My BP has always been low at 100/60; cholesterol 150, LDL 66. Heart rate has always been high, in the 80's. Now, resting and reading a book in bed, 105. I do have other autoimmune: Meniere's, Raynaud's.

Mom has Hashi's.

While this endo seems smart, he is older and old school. I am reading conflicting things about normal TSH levels.
*
Should I get a second opinion? *


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## GD Women (Mar 5, 2007)

Doctor is correct about thyroid. Hypos and hyper have different diagnos levels so what you read my not be correct.

TSH 0.3-3.0 is just a suggested target level for already diagnosed and treated patients
http://www.aace.com/pub/pdf/guidelines/hypo_hyper.pdf

People are getting this mixed up with diagnose level - its just a suggest treatment level or target level.

Hyper subclinical TSH .1 Once a suppressed TSH level has been detected a reassessment is appropriate to ensure that the suppressed TSH level is persistent rather than transite. Therefore, our suggestion is to reassess the TSH level along with T4 and T3 estimates in 2 to 4 months. If a sustained TSH suppression (<0.1 uIU/mL is established, then management should be based on an individual program.
endocrinetoday misquoted AACE Guidelines re TSH .3
"Comment by E -- January 7, 2009 08:13 AM

Other things could be going on to cause your symptoms. You didn't list all three levels with Labs reference range so can't comment any further, with the exception of the following:

"The symptoms of both hyperthyroidism and hypothyroidism are non-specific and can be mimicked by other conditions. Thus the practice of prescribing thyroid treatment on a clinical basis alone without biochemical confirmation carries potential risks". - New England Journal Of Medicine

If you have some of symptoms and don't have a wholesome diet, take nutritional supplements, exercise to tolerance, get physical treatment as needed and abstain from taking metabolism-slowing drugs each day (such as beta-blockers, muscle relaxants, and narcotics) raises the possibility that your symptoms are caused by the issue addressed abovr. For example, if you don't take nutritional supplements, nutritional deficiencies may the cause of your symptoms. In that case, taking nutritional supplements would relieve the symptoms. You should consider the use of thyroid hormone only when you can honestly say that you do all the above.

If you do all the above, it's suggested you find an alternative doctor who is cooperative and collaborative. The doctor should be competent at differentiating medical disorders that might be causing your symptoms. For example, low adrenal function is a common cause of some of the symptoms 
A doctor competent at diagnosis can help you determine the cause-whether it's hypothyroidism or some other disorder.

It never hurts for a second opinion or 5, if one can afford it.

There are doctors out there willing to treat by symptoms alone, but I wouldn't consider the doctor a good one, next to a butcher.

Check out your symptoms more thoroughly and extensive which will take time, money and patients but well worth it in the end with a final diagnose of whatever.

And keep checking thyroid levels on an annual bases - you might not be thyroid right now but may be so in the future.

Good luck.


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## lavender (Jul 13, 2010)

I would ask your family doc for a different referral.

The presence of TSI indicates that there is an auto-immune attack on your thyroid. I have Graves, and my TSI was very similar during my thyroid storm. Your symptoms also sound very similar to the ones I had leading up to my thyroid storm. Graves can swing in and out of remission. So, it is possible that your thyroid levels are "normal" but that you still have Graves Disease.

high RAIU means that your thyroid is overworking.

Do you have copies of your labs and can you post them with reference ranges? That might be more telling.

At the very least, I would ask your family doc to keep a close eye on your thyroid levels, but I would ask for a second opinion.

Elevated heart rate that comes with Graves is nothing to mess with. I ignored my heart symptoms for several months because my Family Doc kept telling me my heart was fine, I was just feeling it more, and then I ended up in the hospital for a few days over it. Not something I would mess around with. Please, don't try to exercise while your heart is working so hard already! You don't want to stress it out more than it already is.


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## namaste (Nov 19, 2010)

Thanks for the input. I feel I'm getting such conflicting info.

But I feel like there is definitely something not right in my body.

I've seen so many docs, and had so many tests that to say things are discouraging is an understatement!

I am only down to walking now, so I never get my heart rate up that high. My echo cardiogram came back totally normal.

Mostly my heart feels like it's working too hard (it feels like you could take my pulse off my eyelashes, everything on my body seems to pound along with my heart!). I notice my high heart rate and tachy stuff more at bedtime.

The other thing I forgot to mention is that for years, sometimes I find swallowing food a challenge. Feels like something is in the way. But any manual external exam docs have done- they say they feel nothing.

*TESTS/RANGES:*

*TSH:* .43 (lab range .49-4.67) *Low* (other labs say .43 is w/in normal)
*Thryoglobulin Antibodies:* <20 (lab range <20) *Normal*
*Peroxidase Antibodies:* <10 (lab range <35) *Normal*
*T3 Uptake: * 35 (lab range 22-35%) *Normal *
*T4 Total (Thyroxine)*: 7.9 (lab range 4.5-12.5) *Normal*
*Free T4 Index (T7): * 2.8 (lab range 1.4-3.8) *Normal*
*Thyroid Scan and Uptake: * @ 6 hours- 33% (lab range 4-20) *High*
@24 hours- 44% (lab range 8-32) *High*
*TSI:* 227% (lab range 0-139) *High*
*Total T3:* 103 (lab range 80-200) *Normal*
*Free T4:* .87 (lab range .60-1.65) *Normal*

Thanks...


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## Andros (Aug 26, 2009)

namaste said:


> Hi- I'm a 40 year old female. A year ago, I was running 25 miles a week. Now I'm down to walking.
> 
> *Symptoms:* 25 lb weight loss in past year (w/o trying). I am 5'11. A year ago I was a size 8, now I can almost fit a size 2; rapid heart rate (resting heart rate in bed about 105), with some tachycardia nearly every day; depression, anxiety attacks, mood swings; debilitating PMS; With weight loss, I developed lots of pain in hips and neck; developed bursitis in both hips due to loss of muscle mass.
> 
> ...


Oh, man!!!!!!!!!!!!!!!!!!! You are extremely hyperthyroid! I cannot believe these doctors. You poor thing.

You MUST find a doctor to treat you. Your TSH does not reflect because there are binding, blocking and stimulating immunoglobulins and antibodies. For god's sakes; how do these doctors get a license to practice?

Can you tell I am angry?? Angry for you, that is what!

Here is info on TSI. The healthy person should have none, zilch, zero.

TSI

Results and Values
What do the test results mean?
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

And here is info on Thyroid Storm because I fear you are on the verge of it.

Thyroid Storm
http://www.clivir.com/lessons/show/thyroid-storm-symptoms-causes-and-treatment.html

And these lab tests! Only the T3 and T4, not the FREE T3 and FREE T4? OMG!! Too scary to believe.

Here is info on the difference between T4, T3 and FREE T3, FREE T4.

Understanding thyroid lab tests.....http://www.amarillomed.com/howto

If for any reason you think you are going into Thyroid Storm, get to the ER fast.

Meanwhile, I am so worried. Please let us all know that you have found a doctor to treat you for hyperthyroid!!!


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## lavender (Jul 13, 2010)

namaste said:


> Mostly my heart feels like it's working too hard (it feels like you could take my pulse off my eyelashes, everything on my body seems to pound along with my heart!). I notice my high heart rate and tachy stuff more at bedtime.


This is exactly how I felt in the months leading up to my thyroid storm, even before my T4 was elevated. There was a thunder storm one night after I got out of the hospital, and with every clap of thunder, it felt like my heart was going to beat right out of my chest, even though my ekg was "normal." I am concerned for you.

Uptake and Scan shows that your thyroid is working better than it should, therefore hyper.

Your Free T3 has also not been checked. Mine was elevated much more than my Free T4 when I was in thyroid storm. If your Free T3 is elevated, that would explain your symptoms.

Your endo is not doing you justice. I would ask for another opinion. If you start to feel symptoms of thyroid storm, go to an ER and tell them what has been going on with your thyroid. Many ERs do not routinely check for thyroid, and others on this board have been dismissed because their thyroids were not checked. I got really good care in the ER, I think in part because I was able to clearly tell them what was going on with my thyroid.


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## namaste (Nov 19, 2010)

Thanks for the reply!

Your thunderstorm... is my dog.

Whenever I am laying in bed, the house is quiet, and the dog barks explosively at some noise, I feel like my heart is about to beat right out of my chest!

I actually ask myself: "Is this what a heart attack feels like?"

You're right, I haven't had a "Free T3".

My first one says "T3 Uptake" and the one the endo ordered says "T3 ICMA". But not "Free T3".

You're the first person to bring that up.

I don't know why the endo did not test for this one.

I am concerned because a few people have said that my history is similar to their's just before a thyroid storm- just like you said.

I did call the endo's office today and told them I still think there's something going on... and that if he didn't think there was anything more he could do with me, I was likely going to see a new endo for a second opinion.

I then called my family doc and told them that the endo disagreed with their dx of Grave's based on my RI uptake test.

They said they were going to talk to doc about my most recent labs that endo ran, and get back to me.

They may be calling with a new endo referral.

Only prob is, it could take months to get into a new one.

I am not very familiar with Thyroid storm symptoms, but am going to read them now.

Thanks again!


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## namaste (Nov 19, 2010)

Wow. I read about Thyroid Storm. How can you tell between that and an anxiety attack?

Things that caught my eye: I saw a new pain management specialist for the bursitis in my hips, caused by weight loss/muscle mass loss. He did a full work up on me and told me my reflexes were WAY over-responsive.

I just noticed one of the Thyroid Storm side effects is hyperreflexia.

I have been having what I assumed were anxiety attacks in the past week or so. Specifically, two in the past 48 hours. I am in the middle of a move, so things are, in fact, stressful.

I felt my heart pound like crazy, and feels like I have to throw up. I often run weird fevers. But I did have one last night, hours after one of these attacks.

When I have episodes like these panic attacks, or whenever I have episodes or rapid heart rate or tachycardia, it often has the strange sensation of rising up to my throat... like my heart has moved up inside my throat. I don't know what that means.

Can you describe what your thyroid storm was like? (I'll check the other boards, too).

Thanks!


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## lavender (Jul 13, 2010)

I thought my heart was going to just Explode for a long time, but I thought I was just being a hypochondriac. Even after I was hospitalized, it took me a long time to accept how sick I had become. That's part of what keeps me posting here. Since I can't go back and change what happened to me, I may be able to help someone else out.

See if you can get on a cancellation list with the new endo if your family doc will give you the referral, that way you may get in a bit sooner. Ending up in the ER may get you bumped up on the endo's priority list, but I would rather not see that happen.

And see if the family doc will run your Free T3 in the meantime. I would recommend asking for Free T3, Free T4 and TSH. Looking at the list of labs the endo ordered, I can't believe he didn't order Free T3! Some docs don't order it because it's more expensive than TSH and Free T4, but it's standard if signs are pointing toward hyper.

You can also ask the family doc to put you on a beta-blocker to help with the racing/pounding heart in the meantime.

In the meantime, take it easy with yourself. your heart is already stressed enough!


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## namaste (Nov 19, 2010)

Yeah, I've had the "maybe it's all in my head" thoughts, especially now that they've done an echo and treadmill on my heart, and I was told it came back unremarkable.

The endo did re-test my TSH. It was the same as the first time it was taken 7 weeks prior: .43

I'll ask about the Free T3.

If one of those "anxiety attack" feelings come up again, I think I'll just go to the weekend clinic.

Thanks!


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## lavender (Jul 13, 2010)

Sounds like a god plan. Beta Blockers can help slow down that heart.


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