Graves' Disease Support Group

I just wanted to clarify that I am not getting the Radio Active Iodine Pill to completely destroy my thyroid. I'm getting 10 treatments of a small dosage of radidation to shrink the swollen tissue behind my eyes.

I haven't heard of something specifically for the eyes. I've only heard of the rai that kills off the therapy. I've heard a lot of people say that brought on the eye disease or made it much much worse. I'm surprised that something so similar would be a treatment I guess! I hope it goes well for you. I'm sure someone on here will have some information

External beam radiation of Graves' ophtalmopathy has been around for quite a while. If an eye or both eyes get so uncomfortably out of their orbits, or if a patient can't close her lids, or if the eye movement impares vision, (and the eyes can't be operated on yet because of their "hot" phase), the eye radiation is prescribed.

I googled "radiation therapy for ted" and it came with a detailed book text (Google actually shows text now from within a book) - "Thyroid Eye Disease" by Jonathan Dutton et al. Wow, you can read in detail of how the radiation impacts eye muscles.

Another member from here had it done and had great results. If you were to message cc9393 Im sure she would love to talk to you about it. It was the only thing that would work..and it stopped the TED in its tracks. I believe this treatment is reserved for those people where nothing else works. I cant remember if she had any ill side effects but I do remember her telling me how wonderful it was to be able to function again.

I dont know to much about this topic. But Good Luck 2morrow :) You'll be in my prayers

Thank you all for your responses.
Tryingtosmile, thank you for the prayers. I really need them!!! I'm scared.

I will try to contact cc9393 for info. I hope it will stop the TED progression.

I will definately read what I can in "Thyroid Eye Disease" by Jonathan Dutton

THANKS again for your support!!! :)

Hi Celia,
How are you doing since your treatment? Hope you feel some improvement quickly!!
Happy Holidays to you!!

Karla (( gravely Ill ))

Hi, I found this and thought it would be helpful to you

Orbital radiotherapy is the other non-surgical mainstay in the management of GO20,93. The rationale for its use and the indications are quite similar to those of glucocorticoids; in addition, irradiation exploits the radiosensitivity of T lymphocytes which infiltrate the orbit101. Irradiation is currently carried out by linear accelerators, using a cumulative dose of 20 Gray fractionated in 10 daily 2-Gray doses over a 2-week period103, although other regimens (and lower doses) might be equally effective104. Favorable responses are observed in about 60% of treated patients102. Recent years have witnessed a lively debate on the true effectiveness of orbital radiotherapy104, and, compared to a previous survey of 1996, a recent questionnaire-based survey promoted by EUGOGO in Europe, showed that, among treatments for moderate-to-severe GO, there was greater use of steroids and lesser use of irradiation87. However,the results of several randomized studies confirmed, with one exception, its efficacy103,105-108. In addition, orbital radiotherapy is a safe procedure devoid of relevant short-term and long-term side effects or complications109,110. Preexistent retinopathy associated with diabetes mellitus or hypertension represents a contraindication to its use109,110. As for glucocorticoids, orbital radiotherapy is mostly effective on soft tissue inflammatory changes and recent-onset extraocular muscle dysfunction102. Orbital radiotherapy can be used either alone or in combination with glucocorticoids20. The association exploits the prompter effect of glucocorticoids and the more sustained action of irradiation; in two randomized prospective studies, combined therapy proved to be more effective than either treatment alone111,112.

I hope this helps...Kathy

Kathy and Karla,
Thank you for the information. I've had 2 treatments and I can definitely see a difference. My lid retraction has improved. The white above my eyes has decreased, well it’s almost gone. But I have to say. I'm still a little scared though. My eyes hurt a little, and I'm not sure if that is normal. I am going to call the doctor on Monday. I still have some eye muscle problems, so the pupil is not in the right position. I’m not sure if this will improve with the radiation therapy. I’m just happy that things are not getting worse! :)

Thanks for your support and Happy Holidays!!!!!

sorry, I forgot to mention in the message I sent to you that you will have eye pain and that is normal. You will also get "hot" tears which is normal and just shows that it is working. I had the hot tears for months and then they just stopped but the strangest thing happened...I suddenly got the hot tears over the summer one evening and the next day my upwards vision improved then a few weeks later it happened again and my vision to the left improved. I asked my doc and although he couldnt say for sure that the hot tears was the radiation but he did say that the radiation can work for months and even up to a year after the thrapy. Pretty amazing stuff!! I would risk cataracts for this any day!