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Treatment for a non working lingual thyroid --- surgery or ???
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Treatment for a non working lingual thyroid --- surgery or ???

I have been diagnosed with a lingual thyroid about the size of a large marble, I went for a uptake and scan and it showed it to be in the area of non functioning thyroid and in the mid line base of the tongue.  Now, I can not seem to locate alot of info on this and the treatments of it.  I have found a doc that is going to look into helping me and treating it as a cancer, but with it non working it wont take up the roi like it should to kill the thyroid tissue.  Has anyone ever had this and what treatment did you do???? Thanks alot.
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Avatar_f_tn
From what I have read and understand, which is not much, most cases require no treatment or thyroxin medication. Biopsy should be considered with caution because of the potential for hemorrhage, infection or release of large amounts of hormone into the vascular system (thyroid storm).

However, surgical excision or radioiodine therapy are effective treatments for lingual thyroid. If you are lacking thyroid tissue in the neck, the lingual thyroid can be excised and autotransplanted to the muscles of the neck. Occasional patients with parathyroid tissue associated with their lingual thyroid have developed tetany after their inadvertent removal.

It is suggested that no treatment should be attempted until an 131   iodine radioisotope scan has determined that there is adequate thyroid tissue in the neck and you have had this done.

Which treatment would depend on the symptoms and your overall health.

You need a specialist and/or surgeon who deals with a lot of this type of thyroid condition.

Good Luck!

GL
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Avatar_n_tn
with cancer its surgery before RAI, less chance of spreading any cancer then if its just RAI, they will probably just skip the RAI process all together.  Just popped in because this is a rare case to see on the boards and am also a fellow hoosier.
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From what I have digested from my endo appt Thursday, I have to have a endoscopy of the throat then if no complications or other causes then he is thinking about 2 doses of TSH then the radioactive iodine to kill the tissue.  And he is also going to talk to the tumor surgeon to see if he thinks he is going in the right direction or if he would rather take it out.  He has done the only other patient they have knowledge of in the state.   Endo is going to treat it as if it was cancer.  But insurance wont pay from what I have heard unless he codes it as cancer.,,,

I have no tissue anywhere else except the tongue.  They did a biopsy in Jan, but the ent was not familiar with this problem.  It showd polypoid squamous cell epitheum w/ inflammation.  ENT thinks he didnt go in deep enough after he ran the scope throught my nose in april... so i am really lost.  is it cancer hidding or what .  i just know i cant breath when i lay flat or place my chin on my chest like movements.  something needs to happen.

It took me several phone calls to find someone who actually knew what I was talking about when i said I have a  lingual thyroid, and I need a endo to help.  
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Avatar_n_tn
Hey Kim

I also have a lingual thyroid.

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Avatar_n_tn
You can email me direct at ***@**** about our lingual thyroids.

Lingual thyroid Nanny
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Avatar_n_tn
Kim

I tried to post my email address for you but it's blocked, you can go through medhelp and ask them to forward my email address to you directly.

Sorry medhelp I forgot the rule about not posting email addresses, but please pass mine on to Indiana Kim.
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Avatar_n_tn
have u tried`a doc at univ of chicago  r u close to chicago  indiana area
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Avatar_f_tn
today i was looking on the internet too see if there was any association between sore throat (my throat often feels swollen) and thyroid (since i've had some problems related to it). i've found this link that talks about lingual thyroid (i did not know it existed before) http://www.ghorayeb.com/LingualThyroid.html and it shows a photo (the second one) that indicate the epiglottis as lingual thyroid...
since you have lingual thyroid ...does it really look like the second photo of that link?
i am asking this since my throat looks like that and i always thought it was just my epiglottis that was visible (perhaps it shouldn't be visible....).
hope to hear back from you...
thanks
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Avatar_f_tn
I have a lingual thyroid which was found when I was 4 yrs old. It's been non symptomatic until I reached my late 30's. It is now underactive and since being on levothyroxine the lingual tissue has shrunken in size. I get weird sensations in the area in my throat but I guess I will have to learn to live with this x
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Avatar_f_tn
I would love to hear from others who have a lingual thyroid like me if like me yl know how rare a condition this is x
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