# "Normal" Labs, but still having hyper symptoms.



## Prudence (Oct 30, 2012)

I'm hoping someone can shed a little light on this for me.

I have Graves' Disease. Symptoms started two years ago, and during the worst of it, my TSH and Free T4 always came back normal. (though TSH was borderline-.25 to .40 a lot) Someone finally looked into more tests for me, found my total T4 was high. Was on medication for over a year, and I opted for the RAI uptake earlier this year in February because I felt the meds weren't cutting it. My TSH at the time was 1.2 (and my Free T4 was 1.6-about what it had always stayed through this whole thing)

Scan came back fairly high at 74% and I was given a dose of the radiation, finally felt great a couple months later, my TSH was slowing going hypo, yada yada. Then this July, I felt terrible again-my TSH had gone from being about a solid 4 back to a 1 (and .9 and .8) and I was given beta blockers because they felt I was going back to hyper. Now it's been staying at about a solid 1 since then, and they've checked me for other things-adrenaline problems, hormone problems, pituitary problems, neurological diseases-everything has come back clear. I asked them if I could have another scan just to check-because my numbers were the same before when I had it the first time and it showed a definite problem-but they're suddenly dragging their feet about it.

My question is, is this somewhat common? To have a scan show your thyroid is indeed hyper, but your labs tell you otherwise? These doctors seem much more knowledgeable than the last ones I had, but at the same time, a lot of my blood work never gets checked because they claim if one test shows it's normal, they cancel the other tests-for example, if one T4 is normal under a thyroid panel, they won't bother checking the T3 or the other T4. (and same with checking me for antibodies. I was told I had it done ages ago with no anti-bodies present, but then the doctor I was under at the time changed his answer and said it actually wasn't done because my Free T4 was normal.) And these new ones won't re-check.

I'm scheduling an appointment soon (they wanted me to wait until January, and I don't think so, not feeling like I do) and kind of want to know what exactly to ask for. Should I ask for a scan? Should I ask for antibody test? Should I ask for Total T4 instead of Free? Should I ask for everything? I'm just so frustrated with this-they know my history, they know how the scan turned out while my labs were normal, so why are they doing this to me again?


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## Andros (Aug 26, 2009)

Prudence said:


> I'm hoping someone can shed a little light on this for me.
> 
> I have Graves' Disease. Symptoms started two years ago, and during the worst of it, my TSH and Free T4 always came back normal. (though TSH was borderline-.25 to .40 a lot) Someone finally looked into more tests for me, found my total T4 was high. Was on medication for over a year, and I opted for the RAI uptake earlier this year in February because I felt the meds weren't cutting it. My TSH at the time was 1.2 (and my Free T4 was 1.6-about what it had always stayed through this whole thing)
> 
> ...












Sadly, another RAIU is in order. I had to have RAI 3 times. This happens in advanced cases as for you know, they can only give so many millicuries at a time.

I don't think you should wait either.

Here is some info that you should know about ..................

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

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583


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## Prudence (Oct 30, 2012)

Thank you for the welcome, Andros! I was told that it can be fairly common to need two or even three treatments-it just seems the doctor I see and the nurse that works under him disagree on what to do. The doctor doesn't think it's my thyroid (he said that last time before the scan-gee, look what happened) but won't dismiss it for sure-he just wants to wait, yet the nurse I see more often told me that I should of honestly been hypo by now by all the patients he's seen who had a successful RAI treatment and it sounds like I really should go for another scan. I think I'll ask to see the nurse since he tends to follow my labs/symptoms more closely than my doctor, and go from there. I'm just curious how many people still have a lab result (or two) ring up just fine while the scan shows a definite problem.


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## Lovlkn (Dec 20, 2009)

Prudence,

You should ask for Free T-4 and Free T-3.

Good luck and I hope the 2nd dose works for you.


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## Andros (Aug 26, 2009)

Prudence said:


> Thank you for the welcome, Andros! I was told that it can be fairly common to need two or even three treatments-it just seems the doctor I see and the nurse that works under him disagree on what to do. The doctor doesn't think it's my thyroid (he said that last time before the scan-gee, look what happened) but won't dismiss it for sure-he just wants to wait, yet the nurse I see more often told me that I should of honestly been hypo by now by all the patients he's seen who had a successful RAI treatment and it sounds like I really should go for another scan. I think I'll ask to see the nurse since he tends to follow my labs/symptoms more closely than my doctor, and go from there. I'm just curious how many people still have a lab result (or two) ring up just fine while the scan shows a definite problem.


Of course re the labs because the antibodies are keeping the numbers in line. That is the job of the binding, blocking and stimulating antibodies. There is an all out war going on in your body.

Yes, see the nurse and let us know.

You need immediate help. You could always go into a thyroid storm and that scenario is NOT a good one.


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## Prudence (Oct 30, 2012)

Lovlkn said:


> Prudence,
> 
> You should ask for Free T-4 and Free T-3.
> 
> Good luck and I hope the 2nd dose works for you.


My Free T4 has always been "normal"-in a lab range of .8 to 1.8, it's always been between 1.6 to 1.8, basically. But my thyroid still lit up like a Christmas tree (their words) through all of these normal labs. T3 I have no idea of, honestly. The lab doesn't seem to look at it when TSH and T4 is fine. Those seem to be the two tests that only come back no matter how many other thyroid tests I get. Very frustrating, I don't know if it's the lab itself that does this? Maybe I should go straight to the hospital lab instead of the collection building that's closer-or ask for just the T3 alone.

Thanks for the input, guys. I was waiting on any word from them for a go-ahead on another scan since their other blood work tests came back fine, but it was still a "see you in January." I'm going to call Monday, I guess.


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## Prudence (Oct 30, 2012)

Sorry for the lack of an update-I finally convinced them to take a look again, and I'm scheduled for later this month. I really hope this goes well!


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## Andros (Aug 26, 2009)

Prudence said:


> I'm hoping someone can shed a little light on this for me.
> 
> I have Graves' Disease. Symptoms started two years ago, and during the worst of it, my TSH and Free T4 always came back normal. (though TSH was borderline-.25 to .40 a lot) Someone finally looked into more tests for me, found my total T4 was high. Was on medication for over a year, and I opted for the RAI uptake earlier this year in February because I felt the meds weren't cutting it. My TSH at the time was 1.2 (and my Free T4 was 1.6-about what it had always stayed through this whole thing)
> 
> ...












This is not uncommon. I personally had to have RAI 3 times and the labs are skewed due to antibody activity. There are binding, blocking and stimulating antibodies to the receptor sites.

Getting another RAIU would be wise.


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## Sandbar (Nov 6, 2012)

A few quick thoughts, my FT3 was above range while my FT4 was in range but near the top when I was diagnosed. FT3 is a useful test. TSI is the definitive Graves test. Good luck Prudence!


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## Prudence (Oct 30, 2012)

A long overdue update due to my test being pushed back, but! My uptake and scan showed that I definitely still have an overactive thyroid happening-granted, it's not as high as it was last time (last February, my final labs showed 74% uptake and this time around it was 48%) but still a problem. I've opted to go ahead and get another RAI treatment-what they think is that I was given the "standard" dose of 15 millicuries last time when they were debating to actually give me 25, and what they should of done is give me the higher dose. Hoping this time around, the dose does it's job! Thanks all for the help-glad to see it's not just me who has gone through this.


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## Andros (Aug 26, 2009)

Prudence said:


> A long overdue update due to my test being pushed back, but! My uptake and scan showed that I definitely still have an overactive thyroid happening-granted, it's not as high as it was last time (last February, my final labs showed 74% uptake and this time around it was 48%) but still a problem. I've opted to go ahead and get another RAI treatment-what they think is that I was given the "standard" dose of 15 millicuries last time when they were debating to actually give me 25, and what they should of done is give me the higher dose. Hoping this time around, the dose does it's job! Thanks all for the help-glad to see it's not just me who has gone through this.


It is better to go w/lower doses as you don't want to fry something that should not be fried. I had RAI 3 times. This sometimes happens in advanced cases.

Another reason why early diagnosis and intervention would have been good.

When are you scheduled?


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## Prudence (Oct 30, 2012)

Just had it Tuesday. I can understand wanting to err on the side of caution, but glad that someone finally looked at me again.


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## Lovlkn (Dec 20, 2009)

> My Free T4 has always been "normal"-in a lab range of .8 to 1.8, it's always been between 1.6 to 1.8, basically.


When my FT=4 is top range, like yours - I feel extremely hyper.

Sometimes top range is too much for some people.


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## Andros (Aug 26, 2009)

Prudence said:


> A long overdue update due to my test being pushed back, but! My uptake and scan showed that I definitely still have an overactive thyroid happening-granted, it's not as high as it was last time (last February, my final labs showed 74% uptake and this time around it was 48%) but still a problem. I've opted to go ahead and get another RAI treatment-what they think is that I was given the "standard" dose of 15 millicuries last time when they were debating to actually give me 25, and what they should of done is give me the higher dose. Hoping this time around, the dose does it's job! Thanks all for the help-glad to see it's not just me who has gone through this.


Join the club; I had RAI 3 times. Try to not have any iodine containing foods and supplements prior. Did they tell you this; I hope?

This is normal in advanced cases of hyper as they only want to kill the thyroid; not the patient. They will probably do 15 again. But that is fine; better safe than sorry. Right?


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## Prudence (Oct 30, 2012)

I did indeed have 25 this time instead of 15-now they're saying I'm oficially hypo, but didn't give me my lab result, and didn't recommend any kind of thyroid pill yet. I still feel crummy-I'm still sweaty, dizzy, and I still tremor slightly-do symptoms tend to overlap when this is going on? It's only been a month since I had the RAI done and just wondering if it's my thyroid still trying to figure things out.


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## JPGreco (Mar 2, 2012)

Hi Prudence, I'm going in for my second dose of RAI as well. First dose was 15, this time I'm slated for 20. I had/have an apparent very severe case of Graves (though never had TSI tested to be 100% on that diagnosis, but I do have anitbodies).

Anyways, I've learned 1 thing through all of this that I should have known better since I already applied it elsewhere. Never back down. If you want something tested, do whatever it takes to get your doc to sign off on it. For me, its going to be once I get close to normal or hypo that I will insist on Free's being tested instead of totals. The doc doesn't know it, but won't have a choice in the matter since I will not back down or I'll change docs. Get the questions you want answered and don't accept incomplete answers to your health.

Good luck and I hope this second round does the trick for you


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