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Mary Shomon

Radioactive Iodine (RAI) Is a Risk for Thyroid Eye Disease

By October 14, 2009

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According to new research just published, radioactive iodine (RAI) treatment - also known as radioiodine or iodine-131 treatment -- for Graves' hyperthyroidism patients is a major risk factor for developing thyroid eye disease -- called thyroid-associated ophthalmopathy. Among those patients, smokers are at the highest risk.

In the study, a total of 163 patients with a Graves' hyperthyroidism diagnosis received either radioactive iodine treatment, or 18 months of medical treatment. The researchers found that development of thyroid eye disease, and worsening of existing thyroid eye problems, were significantly more common in the patients received radioactive iodine treatment.

Overall, the researchers also found that new onset of thyroid eye disease was a greater risk in those patients who had the radioactive iodine, versus other treatments.

And for the patients, smoking was the greatest risk factor of all for thyroid eye disease. Smokers who had RAI had had the highest risk of thyroid eye disease.

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Träisk, Frank et. al. "Thyroid-Associated Ophthalmopathy after Treatment for Graves' Hyperthyroidism with Antithyroid Drugs or Iodine-131" Journal of Clinical Endocrinology & Metabolism, 2009;94:3700-3707. Online

October 16, 2009 at 6:58 am
(1) Diana says:

Oh my I had that radiation treatment for hyperthyroid and then got Graves disease. Very bad double vision. Just had muscle eye surgery after 6 years of double vision and it is almost corrected perfectly. Will never be the same though as far as my vision goes. :-(

October 16, 2009 at 9:07 am
(2) Jeannie says:

Thanks for the infomation I had radioactive iodine treatment in the later part of the 70′s, and been dealing with Graves Disease since then. I had muscel eye surgery in 1989 but I still have problems with my eyes and vision. Been living with this for 30 years. I don’t know what normal is.

October 16, 2009 at 9:21 am
(3) Gwen says:

I’ve had thyrod problems for over 20 yrs and now they are going to remove it, for about a year I’ve been having problems on and off with my right eye, seeing dots and now seeing long lines, even in the dark, I’ve had an eye exam and everything was ok, Do you think the tyroid has anything to do with this?

October 16, 2009 at 11:31 am
(4) gillian says:

Have heard that smoking can worsen thyroid eye disease. When I had thyroid problems (Grave’s disease), I smoked heavily and developed thyroid eye disease yet no-one told me that my smoking was aggravating it. As difficult as it is to stop smoking (I have since kicked the habit and have not smoked for eight years), I was so unhappy about how bad I looked that I would have tried to stop then. I had plastic surgery to remove the heavy bags around my eyes but my one eye still protudes a bit – although it no longer worries me. I spend a fortune on eye lubricants – a special cream at night and special eyedrops each morning and sometimes evenings too. Otherwise, don’t even think about it anymore.

October 16, 2009 at 5:16 pm
(5) Judy says:

I regret listening to the endo when I came down with Graves. I had RAI, with assurances from him that it would not increase my risk for cancer… I have had vision problems since, and have found that gas permeable (not soft) contact lenses helped stabilize my vision. Conveniently, he didn’t mention that it might mess up my vision as a risk factor. Now, I wish I had tried homeopathic remedies for the Graves instead…

October 16, 2009 at 5:19 pm
(6) gia says:

I had thyroid cancer, my thyroid removed, and then RAI. Two years later, I was diagnosed with Leukemia. I am recovering from this round of cancer, and I am doing great. I was wondering how many other people out there got a secondary cancer possibly due to the RAI treatment.

October 17, 2009 at 10:42 am
(7) Maggi says:

How can you have RAI and THEN get Graves? You get rid of the gland with RAI and develope Hypothyroidism, not Hyper or Graves. I had RAI in 98 for hyper thyroid. I dont’ have cancer from it and also I smoke, and other than some cataracts which are in first stages, no eye problems as of yet. I am 54.

October 17, 2009 at 8:17 pm
(8) Katharine says:

I took RAI 131 for the uptake test and I often wonder if it was what affected my eyes. I have no idea how much they gave me but once I found out what it was I did regret letting them give it to me. I didn’t know at the time that they could check for graves with the sonogram I had taken and the symptoms as well as the blood test. I’m sorry I took it.

October 7, 2011 at 4:12 am
(9) sandy says:

Hello Katherine,

I was diagnosed with Graves a month ago. Before going to take the I-123, i should have asked the side effects…right after the uptake, my eye started getting red and I developed some fatty white thing in the eye…it’s been there for weeks…at this point I am not going to take RAI 1-131…did any one have any eye effects after I-123 uptake???

October 17, 2009 at 9:01 pm
(10) Kirsten says:

I went through RAI for Graves disease in 1994 – by 1999 I was on the table with a neuro-opthamologist performing an orbital decompression. I don’t recall reading about the problems that the thyriod eyes can create, but I know for me – the surfaces of my eyes were drying so badly they were becoming damaged. The surgery could not be performed until they determined that the eye “bulging” was not worsening still. So, this meant that I went 2-3 years having to put ointment in my eyes every night and taping them shut to prevent the drying. Jeannie, I am so with you on not knowing what “normal” is anymore :)

October 18, 2009 at 10:36 pm
(11) katie says:

1. Gwen, your dots and dashes are ‘floaters’ and have been associated with diabetes. Check you diet and sugar levels.
2. I was diagnosed with Graves Disease in 1993 and was not allowed to take the radioactive option as I was in child-bearing age. Changed Endo a few years later after several re-occurances of hyperthyroidism and was allowed to take the treatment. Older age is effection my eye condition – needing glasses occassionally for reading and for driving. Otherwise all seems OK.

October 23, 2009 at 6:38 pm
(12) Maneesha says:

I took the radioactive iodine in 2008,after that passed through all the stages of hypothyroidism- sometimes thyroid getting very low sometimes just perfect and sometimes slightly low.
since last year I have been facing problema with my left eye-it shows swelling in whitish area which did’nt leave me even after two surgeries-it appears again and again.I am wondering-could it be due to the ablation i took.

October 7, 2011 at 4:15 am
(13) sandhya says:

Dear Maneesha,

I am diagnosed with Graves disease. Can you please expalin your experience with RAI?

November 12, 2009 at 3:36 pm
(14) Erin says:

I am glad I found this article. I had RAI for Graves in 12/06. In April 2009 I developed double vision, blurriness and light sensitivity. I am getting a couple of opinions about surgery opinions and am very curious if makes a difference. I don’t feel like i have much choice now. My vision is almost to the point where I should not be driving or working. Very scarey.

December 3, 2009 at 7:16 pm
(15) Dee says:

RAI is given for Graves Disease (overactive thyroid) to shrink the thyroid gland. Once the gland is shrink, the thyroid is then underactive. After becoming underactive, usually patients are given Synthroid to supplement, however, be sure that the dosage is not too much for you – in my case, I was getting the same eye symptoms I had when I was overactive (red, itchy, irritated eyes), but did get relief when my dosage was reduced.

July 31, 2010 at 10:42 pm
(16) Bess says:

I was diagnosed with Graves back in 2003 after a couple of bloodworks. Took PTO and Beta Blockers for a while. Doctor suggested I do the radioactive iodine pill as to taking medicine and adjusting it. Said it was cheaper and quicker. Nothing was said about any side affects. Took nothing for about a year. Then I got TED. Had the orbital decompression in 2007 on both, then eyelid reconstruction. Left eyelid didn’t cooperate and double vision in left eye. I use the lubricant every night. Going in for muscle surgery next, doctor says he won’t be agressive. Then eventually another surgery to correct the left eyelid again hoping it will reduce dryness by allowing it to close all the way. I take Synthroid every day. I wish they had told me the possibility of TED from the rad and so much for not taking medicine all the time and checking thyroid levels for adjustments. What a bunch of crap, I feel like someone they practiced on.

August 17, 2010 at 4:18 pm
(17) Meg says:

I was diagnosed with hyperthyrodism and Graves disease in 2000 and was told that Radioactive iodine was the easiest way to take care of it. Now it has been 10 years, and granted I do not take my thyroid supplement exactly as prescribed (I forget to take it all the time) but I have noticed my right eye starting to droop when I am focusing while driving etc. I am just now starting a rotation of doctor’s visits to the opthalmologist, neurologist and primary care to figure it all out. I wish someone told me about the side effects because I think I would have thought twice about the radioactive iodine and probably would have tried to regulate it with medication first.

October 29, 2010 at 3:44 pm
(18) Friend to Friend says:

What is protocol or recourse or restitution for those of
us that were given RAI treatment and not told the dangers
or precautions of radioactive iodine chemical thyroidectemy?
I have suffered greatly since the day I took the capsules
in 1984. This is now 2010. Some patients do not have the
money to keep going to doctors or hire lawyers.

February 22, 2011 at 4:12 pm
(19) polly says:

i had my first bout of hyperthyroidism 10 yrs ago and it has popped back into my life on and off since, i have just been diagnosed with eye thyroid disease and reading all these comments on here am more confused than ever. i have just had scans and waiting for results. i am geting pains at back of head is this a symptom, double vision in a morning and when im tired floaters on eyes also help ???

June 28, 2011 at 2:08 pm
(20) Melinda says:

I have graves diasease and the eye diasease. They suggest for me to have my thyroid removed. 3 day stay in hosiptal and an inssion across my neck. My eyes are always red and budgly and watery. Wondering if I should have it removed or try the radio active iodine treatment. I understand you take the meds by mouth and a large machine comes down and gives radiation on yourn thyroid and you are out in the same day. Any suggestions

August 8, 2012 at 11:02 pm
(21) Mary Garon says:

I had the RAI approximately 16 years ago. I had been diagnosed with Graves and one eye was bulging considerable. After RAI the eye did not bulge as much (it has remained only slightly protruding more than the other eye) however I had had red eyes ever since. My doctor always says it is not related to Graves but I have always suspected that it is.

January 9, 2014 at 4:15 pm
(22) San says:

I had Graves disease and thyroid eye disease 10 years ago. About two years I was used therapy in Medrol (methylprednisolone) for eyes. I had a total five courses.My doctor prescribe very huge dose -it’s been about 60 pills per day!!! Then reduced gradually.At the end I got a side effect of glaucoma. My thyroid had been removed completely. I sincerely suggest avoiding treatments with Medrol.

February 22, 2014 at 5:52 am
(23) John S. says:

I’ve been diagnosed with severe “HYPERthyroidism,” which IS “GRAVES disease” You do not acquire Graves disease after removing or radiating an overactive thyroid. Graves is TREATED by removal or ablation. Presently I’ve only been treated with a thyroid suppressing pharmaceutical: I have not had any radioactive iodine or surgery. Another point, for those of you suspecting that the Radioactive Iodine “ablation” or thyroid removal “causes” thyroid-associated ophthalmopathy, I question whether that is the case. My thyroid is still intact. It has not been ablated. However, I am on medication and I have obviously developed “thyroid-associated ophthalmopathy.” I say obviously because the appearance of my eyes is so repulsive that I scare people merely by looking at them. Whether you have surgery or ablation or neither: bulgy, red, dry eyes just seems to be part of the the disease.

March 22, 2014 at 8:31 pm
(24) jw says:

I have hyperthyroidism and am trying to decide the best treatment method My eyes are dry, red and the lids are swollen. Pulse is high. I’m thinking surgery might be the safest route. What do you all think?

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