# Graves vs ? in 13 year old daughter (long)



## docbree (Sep 17, 2011)

Hi -

My name is Brenda and my daughter, who is now 13, has had a goiter since she was 4 years old. Initially, a radioactive uptake scan and antibody tests were all normal, but about 6 months after her pediatrician 1st noticed the goiter, her T4 and T3 levels dropped. She never had any repeat antibody tests and I was never given an actual diagnosis - but I assume she has Hashimoto's. She has been stable on 25ug of synthroid for 8 years.

I don't know if this has anything to do with it, but about 2 months ago, she had her 1st period. She also started complaining about her goiter getting larger and more uncomfortable. We had routine labs (she has them done every 6 months) in July and her T4 and free T4 were high, but TSH was low. Endo instructed us to decrease to 1/2 tab synthroid and retest in one month.

Second set of labs - the T4 and free T4 were even higher, but TSH now only 0.011. We are awaiting thyroid antibody and TSI test results - and in the mean time I am pulling out my hair worried that she has Graves disease (autoimmune diseases run in our family). The endo said she could have Graves, or just a temporary hyperthyroid flare up.

Does anyone know the stats on these conditions - which is more likely? I am worried sick and feel so bad for her.

Thanks for any feedback.

Worried mom in Texas:sad0049:


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## Andros (Aug 26, 2009)

docbree said:


> Hi -
> 
> My name is Brenda and my daughter, who is now 13, has had a goiter since she was 4 years old. Initially, a radioactive uptake scan and antibody tests were all normal, but about 6 months after her pediatrician 1st noticed the goiter, her T4 and T3 levels dropped. She never had any repeat antibody tests and I was never given an actual diagnosis - but I assume she has Hashimoto's. She has been stable on 25ug of synthroid for 8 years.
> 
> ...


Wow!! Poor kid! I am glad they did the TSI and I really think they should do RAIU as well.

These are additional tests I would recommend.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

About TSI, Thyroid Stimulating Immunoglobulin (just for your edification in case you need a reference)

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

I don't know which one might be more likely. Sad to say, but true.


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## AZgirl (Nov 11, 2010)

FT4 and FT3 and TSH indicate Graves, but TSI (or TRab) and RAIU test positive for Graves.  Im concerned why the doc. didnt take her OFF the Synthroid!!!!!!! even the half dosage,,, that will raise her FT3and FT4 and lower her TSH!!!!! inwhich in this case, she already has them raised,,,Idont understand doctors honestly! I will say, in all the message boards i come across with youngsters doing drug therapy in treating graves, a lot of them reached remission. ~not all but a lot


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## docbree (Sep 17, 2011)

Hi Andros -

Thank you so much for your reply, the flowers and the recommendations. 
I will let you know the results when they come back (hopefully by the end of the week). Thank you also for the informational links. She will have a thyroid panel done in several weeks (the endo wants to wait since she was just taken off synthroid 10 days ago). I think an ANA is a good idea (esp since I have RA). Will talk to Dr about that and the other tests you recommended.

It really helps just to know that we are not alone.

- Hannah's mom


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## docbree (Sep 17, 2011)

Hi AZGirl -

Thanks for your reply.

Thankfully, she is off of the synthroid now after her most recent bloodwork (about 10 days). I hope and pray this is just a temporary flare... 
I am frustrated by the lack of communication and information from her endo. She never even told me that she suspected Graves disease - my daughter figured it out by getting on the internet and looking up the tests that had been ordered. I called the Dr. and she confirmed that was her suspicion.

Keeping my fingers crossed,

Brenda


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## Andros (Aug 26, 2009)

docbree said:


> Hi Andros -
> 
> Thank you so much for your reply, the flowers and the recommendations.
> I will let you know the results when they come back (hopefully by the end of the week). Thank you also for the informational links. She will have a thyroid panel done in several weeks (the endo wants to wait since she was just taken off synthroid 10 days ago). I think an ANA is a good idea (esp since I have RA). Will talk to Dr about that and the other tests you recommended.
> ...


You are welcome and I hope we can provide some helpful information. One thing I know for sure is that we can provide a lot of support. We have really wonderful folks here and you and your daughter have just added to that.


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## docbree (Sep 17, 2011)

Ok - now I am even more confused. Right before we went to bed last night, I listened to my answering machine and my daughter's nurse had left a message: all her antibody tests were "negative." No plans for treatment, additional testing, etc. were mentioned (although she is scheduled to recheck T4, free T4, TSH and free T3 in 3 weeks). The tests they ran were: TSI, TPO and thyroglobulin. Her thyroid gland is noticably bigger than last week. What could be the cause? What should I do?


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## Andros (Aug 26, 2009)

docbree said:


> Ok - now I am even more confused. Right before we went to bed last night, I listened to my answering machine and my daughter's nurse had left a message: all her antibody tests were "negative." No plans for treatment, additional testing, etc. were mentioned (although she is scheduled to recheck T4, free T4, TSH and free T3 in 3 weeks). The tests they ran were: TSI, TPO and thyroglobulin. Her thyroid gland is noticably bigger than last week. What could be the cause? What should I do?


First thing to do, if you don't mind is get copies of the labs. We need results and the ranges.

Negative means no sign of the above. People don't use the right words. They say negative when they are in the range. That is not negative, that is "in the range provided by the lab" which is only to establish a baseline and to detect movement.

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

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)

Thyroglobulin Ab
A negative test is normal, 0. A negative test means no antibodies to thyroglobulin are found in your blood.

http://www.nlm.nih.gov/medlineplus/ency/article/003557.htm
(The normal thyroid has Thyroglobulin in low titers but should not have Thyroglobulin Ab)

And if the thyroid has grown that fast in a week; definitely RAIU (radioactive uptake scan.)

Take a deep breath; we are here for you and your daughter and we will help all we can. You may have to take her not to a pediatrician but a regular doctor. GP or whatever.


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## docbree (Sep 17, 2011)

Thanks for that information - I will try to get the labs tomorrow (she won't email or fax them). I spoke with her nurse today - and they are going to schedule a RAIU if her thyroid panel still indicates hyperthyroidism when it is repeated on Oct 4th. We have an appt on Oct 6th for her Dr. to look at her goiter and to go over the bloodwork and plans.

I will post labs as I get them.

If I am not happy with the next visit - I am thinking about changing Dr's - but I am encouraged that she is considering RAIU scan.

... taking a deep breath, now


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## docbree (Sep 17, 2011)

Ok - finally got my daughter's antibody tests:

TPO Ab < 6 (ref range 0-20)
Antithyroiglobulin Ab <20 (ref range 0 -40)
TSI 46% (ref 0 - 139%)

Please let me know what you think!

Also an update:

She is doing well, and her thyroid seems to be going down a little (she thinks it's my imagination), she doesn't seem to be losing more weight and her heart rate is down a little.


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## Andros (Aug 26, 2009)

docbree said:


> Ok - finally got my daughter's antibody tests:
> 
> TPO Ab < 6 (ref range 0-20)
> Antithyroiglobulin Ab <20 (ref range 0 -40)
> ...


Bearing mind that the healthy body should have none of the above, the TPO Ab and Antithyroglobulin Ab are below the range but they "are" there. These antibodies wax and wane as you will come to find out.

TSI is significant and once again, there should be absolutely none.

I am very very glad to hear they are going to schedule RAIU; very glad. Truth be told, TSI should cause them to order RAIU, not the thyroid panel which is in a total dither because of the binding, blocking and stimulating antibodies.


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## docbree (Sep 17, 2011)

An update on my daughter:
TSH from Friday - now < .006; T4, free T4 a little higher; T3 3.63 
She is having 24 hour RAIU tomorrow and Wed; will meet w. Dr Thurs to discuss results
Please keep her in your thoughts
Thanks,Brenda


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## Andros (Aug 26, 2009)

docbree said:


> An update on my daughter:
> TSH from Friday - now < .006; T4, free T4 a little higher; T3 3.63
> She is having 24 hour RAIU tomorrow and Wed; will meet w. Dr Thurs to discuss results
> Please keep her in your thoughts
> Thanks,Brenda


Will do, Brenda!!! And please let us know the outcome when you can!


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## docbree (Sep 17, 2011)

Thanks, Andros. We got Hannah's RAIU results today, and her uptake was only 1.2%. No Graves disease  Her doctor said she has a "raging thyroiditis." I asked if this was a thyrotoxic phase of Hashimoto's (things I learned on these message boards) and she said yes. Any resources (books, etc) you can recommend on this topic will be greatly appreciated. I have learned a lot from this site - but would still like to know more.
Thanks again for all the support,
Brenda


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## lainey (Aug 26, 2010)

Actually, we have a thread from a poster who had this twice, and was/is working on their third round of it. It is informative reading:
http://www.thyroidboards.com/showthread.php?t=3476

You really aren't going to read a lot of books about the management of thyroiditis. It is very difficult to medicate a patient in this situation, as the levels do change, and sometimes quickly on their own--while thyroid medications take weeks to work. It is primarily watch and wait, until the levels stabilize in one direction or the other.


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