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My daughter is 9, she has Down syndrome and Autism, she is totally non-verbal. She was hypo awhie back, was on meds and became hyper on them and doc took her off. She was okay for awhile and now she’s hyper. Her labs are as follows:
TSI 259 ( range <=122)
Thyroxine 14.9 ( range 6-12.3)
Thryoid stimulating hormone 0.05 ( range 0.34-5.60)
TPO 45.4 (range 0.0-0.9)
Doc says she has Graves’ Disease. We were going to do the uptake and scan, but she will not swallow a pill, she uses a g-tube and they said not to putting liquid in the tube. Also, the RAI seclusion would kill her and we have 2 other young children in the house. He’s is recommending surgery instead of RAI and the anti-thyroid medication. We are concerned the meds will not be good because of her risk of getting sick and lowering her WBC count.
Do her levels show Graves? Doc says because the TSI is so high and climbing, this most recent test was higher than the one 3 months ago, she has Graves and it is not just a phase. I am worried because of the eye issues too. She does not seem to have bulging eyes, but I have not way of knowing if she’s seeing double or if her vision is blurry.
We are leaning towards surgery, but the surgeon is not sure because she’s not had a patient come in who has NOT had a thyroid scan and only labs, but I thought an elevated TSI meant Graves? I know the medication is probably the less invasive, but we never know if she’s sick until she has major symptoms. And I’ve read that with children, they need up to 4 years of these medications, which is a long time to be worried about her NOT getting sick.
Just looking for input and advice.
Thank you,
MeganHello – I’m sorry to hear your little one is going through this. We are fellow patients here, not doctors, so we aren’t allowed to interpret labs or give medical advice — but the following will hopefully provide you with some general info and resources.
The latest medical guidance (which you can find in the “Treatment Options” thread in the announcements section at the top of the forum) notes that antibody testing can be used for diagnosis of Graves’ in lieu of the RAIU uptake & scan. However, the recommendation there is to use a different antibody test (TRAb instead of TSI). This might be worth reviewing with your daughter’s doctor.
We have a couple of nice videos on children and Graves’ on our YouTube channel. One of them specifically goes through the pros and cons of the different treatment options. I’m having issues with the link at the moment, but you can go to youtube.com and do a search for our screen name, which is GravesAndThyroid.
Also, there is a Facebook group that was started by two of our members who have children with Graves’. This is not an official group moderated or controlled by the Graves’ Disease and Thyroid Foundation, but includes many parents who have come together to share their personal experiences. They are located at http://www.facebook.com/groups/265484340175004/. It’s a closed group, but you can request to join, and the organizers will approve you if you let them know you are a parent of a Graves’ patient.
(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
Take care!
Hi,
Thank you for your reply! So, is positive TSI alone not an indicator for Graves? I am going to request to join the group on FB and check out the you tube videos. Thank you so much!
MeganI think the facebook site will be very supportive and helpful for you. Sooo sorry that she and your family have to deal with graves’ and all the it entails, along with everything else!
ShirleyHi Megan – I would ask your doc on the TSI/TRAb question. My own doctor tests TSI (which is specific to the Graves’ antibodies that cause stimulation of the thyroid), although the latest medical guidance mentions using TRAb.
Take care!
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