Ectopic thyroid
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Ectopic thyroid
| Sat, 10-21-2006 - 11:18pm |
Anyone have information on ectopic thyroids? My 11 year old son appears to have his thyroid on the base of his tongue and nothing in his neck. This was discovered during a routine physical and ENT has ordered thyroid scan, CT neck scan, chest x-ray and blood work. Haven't received results but I viewed all tests and from research this appears very rare. It is large and CT scan showed that it is close to blocking windpipe. What type of doctor do I use. Does anyone have this condition. I live in NC but close to VA. Any advice would help.
Thanks,
Joyce
Thanks,
Joyce
Thanks,
Joyce
Thanks,
Joyce

Hi Joyce,
This is something new to me.
Thanks,
Joyce
Hello Joyce, I'm new here so I don't know how often messages are viewed, but I wanted to tell you that my son was born with a "lingual" thyroid.
Lisa S.
My son also has this problem. He is 8 almost 9. He also has the gland only growing on his tongue and no other tissue anywhere else. We have had an MRI and a CT scan done. He has regular blood work. He sees an ENT and an Endocrinologist. This condition is more rare in boys and is mostly found in babies and women. My son's thyroid is 1.5 inches in diameter. We see a team of doctors at our Children's hospital. We live in British Columbia Canada. We have been told that we have two options. Radioactive iodine or surgery. The problem with surgery is that it is embedded into his tongue, and they would have to go through his neck (tracheotomy) to access the gland as is is right below the uvula. They are worried about damaging his tongue muscle and vocal cords. Also, the chance of hemorrhage is great. He recently has sprouted a nodule on the gland. When he gets a cold we find that the gland swells up and makes breathing difficult. Our specialist has found only one doctor that has dealt with this condition and he unfortunately is located in France! We will hopefully have some new information in a couple of weeks.
Wow! That's sounds exactly like my son. He hit puberty, put on 20 lbs and the thyroid was picked up in a routine physical. Luckily, we have found a doctor(endrocrinologist) at Children's Hospital in VA who has had 3 previous cases. This is his first male patient. We were given 3 options. Surgury was not even an option for my son because his extended down his throat 2.5 X 1.5. Don't even want to think about radiation...friend with thyroid cancer has to sign release because after 3 doses leukemia is a risk factor.
Dr. Rohn has had success medically using Levoxyl. We started at 125 mcg and now he takes 88 mcg daily. The thyroid has visible shrank and his levels (blood work) are wonderful. No side effects. So far everything seems to be working. We also were told that there isn't a surgeon in the US who has every preformed this operation before. The chief of surgery at Duke in NC told me that no one should even attempt this surgery until is it smaller is size. Maybe you could also medically treat your son's thyroid.
Free feel to contact me.
Joyce
Thank you so much for your reply. I will look into the levoxyl route. Our main problem right now is that the thyroid seems to have a mind of it's own. We have been trying for months to shrink it and if anything it gets bigger. We are so afraid with regards to any surgery and we are not keen on the radioactive therapy either. I have been searching for any info on radioactive iodine and the other problem being is my son hasn't reached puberty. Right now my son is holding his own. Somedays he gets moody but the latest of his symptons is dizziness. I am sure this is because of the "overdose" of medication they are giving him in a major attempt to control the growth of the thyroid.
I wish your son all the best and look forward to hearing any updates. I will keep you posted as well but we are not expected to return to Children's hospital until September.
Sincerely,
Jen
Joyce
Take care,
Jen