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Thyroid  (Expert Forum)
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obital decompression or radiation for thyroid eyes
Answered by
Mark Lupo, M.D. - Thyroid Nodules, Thyroid Cancer, hyperthyroidism, hypothyroidism, Thyroid Ultrasound
Thyroid & Endocrine Center of Florida Sarasota - FL
Questions in the Thyroid forum are answered by Dr. Mark Lupo. Topics covered include goiter, graves disease, Hashimoto's thyroiditis, hyperthyroid, hypothyroid, thyroid cancers, thyroiditis, and thyroid stimulating hormone (TSH).
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MedHelp Member's Question

obital decompression or radiation for thyroid eyes

by lookin4aclue, May 17, 2006 12:00AM
I saw an endo yesterday he stated he thought that I should have orbital decompression done, but also mentioned radiation, I am hoping someone can tell me the risks of these two.  I am on prednisone and can't seem to taper off without inflamation, and they are causing serious side effects.  My levels are in normal ranges but my antibodies(TSI)are high at 296 and norm is 130 or lower.  He also said that there was awhile back something about removing the whole thyroid might help, but wasn't sure.  I need more information on these procedures, and he didn't seem to have much.
Doctor's Answer

by Mark Lupo, M.D., May 18, 2006 12:00AM
If the pred is helping the inflammation then would consider orbital radiation first, then surgery as a last resort.  Thyroidectomy followed by I-131 may help -- would need to continue steroids through both of these, re-eval the eyes then procede with radiation or surgery.  The key is to work with an ophthalmologist with expertise in thyroid eye.
Member Comments (35)

by NURSELPN, May 19, 2006 12:00AM
To: lookin4aclue
http://www.nanosweb.org/patient_info/brochures/ThyroidEyeDisease.htm



http://www.thyroid-fed.org/publications/ted.html

http://www.thyroid-fed.org/publications/treat.html

by lookin4aclue, May 19, 2006 12:00AM
I have been seeing an opthamalogist, and he has been treating me for TED but he doesn't seem to know much and refured me to the endo to see what he might think.  There are no doctors within the area I live that have much knowledge of TED treatment.  The eye specialist has been in contact with the orbital surgen that is four hours away, and that is the only reason that I was put on the steriods.  I have had RAI in 2002 already will that interfear with the thyroidectomy?  Isn't the I-131 the same as what I had taken?  What good would that do if I have had one dose and still have such an active case of Graves?  Will that make it to where I would have to up my doses of Armour, because I already seem to be taking a pretty large dose?  Any help here is great.  If all levels are within range and TSI is elevated does that mean that I should be looking for other Graves symptoms to arise?  Doesn't that mean that Graves is active?  I have already had to many complications from this Graves stuff.  My child was born 6 months ago with graves thanks to the antibodies I passed to it.  I wonder if the TSI being elevated has to do with being able to detect both the TED and the antibodies I passed to my child.  Lots of questions I know and I don't exspect anyone to answer all of them but they sure would be of great help to me.  So if you could answer what you can, I would be very greatful for it!  Thank you for answering what you have.

by GravesLady, May 19, 2006 12:00AM
To: lookin4aclue
1 131 is the same as RAI.  It is not rare for some to have a second or thrid RAI treatment, some as many as four but no more than five. There should be no reason for your past RAI to interfere with a thyroidectomy.  

There is no treatment for antibodies.  The only thing that can be done, is to get rid of the thyroid so antibodies can't attack it.  Even the smallest amount of thyroid left the antibodies can attack, but perhaps not as severe or destructive as in a total thyroid.

The laryngeal nerves  and  parathyroid glands are located very close to the thyroid, so as not to damage these during surgery a small portion of the thyroid is left .  Then RAI is done to disable the remaining thyroid that is left.  

TED is an autoimmune disorder which has its own antibodies closely related to thyroid antibodies. Thyroid antibodies can aggravate TED (among other things such as smoking, etc.) therefore by getting rid of the thyroid  through surgery and then disabling the remaining with RAI, antibodies cannot attack the thyroid (a thyroid thats not there) therefore worsening the condition of TED.  However in some cases the condition progresses regardless of what is done to the thyroid gland (because TED has its own antibodies), therefore there is no satisfactory treatment.   Options other than getting hyper/hyper under control which helps some, are strong drugs such as steroids or immunosuppressive drugs to prevent the unlikely occurrence of optic nerve swelling and blindness, and  orbital decompression or radiotherapy.

In other words, TED has its own antibodies that directly attack the eyes and its going to do what its going to do, wherever it wants to do it, and, as many times as it wants to do it. Each attack is dealt with and treated as it comes. Its just a matter of luck.  



Good Luck.





by lookin4aclue, May 19, 2006 12:00AM
To: Graveslady
Thank you for taking the time to explain that to me.  It's helping me understand that.  Is there something that you could suggest that I read to learn more about the thyroid issues of Graves and the TED and skin as well.  I think I might be dealing with that as well, and you seem to be very knowleadgeable in the Graves area.  Thanks again.

by GravesLady, May 19, 2006 12:00AM
To: lookin4aclue
I can not suggest here what to read.  Do internet search and read as much as possible to educate yourself.  Reputable medical sites are best and stay away from the anti-BB forums - ones with agendas.



by NURSELPN, May 20, 2006 12:00AM
To: lookin4aclue
lookin4aclue,



You do not need another RAI (I-131 treatment). If I read your post correctly, you said that your taking a thyroid supplement & your thyroid lab is normal & that only your TSI is elevated. The TSI is the graves antibody produced by the immune system which attacks the thyroid making it over produce thyroid hormones, therefore making you hyper.. They destroyed most oif not all of your thyroid with the RAI treatment so that it will not react to the TSI antibody. TED can be made worse by RAI or it may occur after RAI esp. if you were not brought to a normal thyroid lab state before you were given RAI or if you were not treated with Prednisone ( a steroid which supresses your immune system ) after you had your RAI treatment. You also should not be allowed to go into a hypo state after RAI, this will also induce TED.



MY thyroid lab is also normal & my TSI is still elevated at 195 with normal being <25. I had RAI 15 months ago & within 3 months my TSH was 89 & I developed a full blown case of TED. I just had orbital decompression surgery on March 21. I also had to travel 4 hours as ocular plastic surgerons experienced with thyroid eye