[Anonymous]

#1080905

Hi Kdub,

The information you got from your opthalmologist is good. The one study that dealt with this issue showed that about 15% of patients experienced “temporary worsening” of TED symptoms after RAI (neither term, “temporary” or “worsening,” very well defined), and 0% of patients who took a short course of steroids experienced any worsening of TED symptoms after RAI.

The question then is, are you willing to risk the side effects of steroids to protect your eyes, in case you are one of the 15%? That’s a judgment call for you and your physicians to make. There can be significant side effects from steroids, so this is a decision that needs to be made (you’ll pardon the pun, please) with your eyes wide open.

I had two RAIs (the first one was not *quite* large enough). I had a little bit of eye discomfort beforehand, but no bulging or otherwise obvious symptoms. My endo did not feel that it would be necessary to take steroids. After the first RAI, I had a period of about three months where my eyes were grittier, and may have bulged a tiny bit. Nothing that anyone could have seen except me. After that period, everything went back as it had been (occasional discomfort, but nothing more). After my second RAI, no effect whatsoever. That’s just to let you know what happened to ME, not to imply that it’s what would happen to YOU.

One more thing — taking the steroids will protect your eyes after the RAI, that’s true. It is not a “cure-all” for ever contracting the more serious version of TED. Keep in mind that a very small percentage of Graves’ patients (5% or so? somebody correct me if I’m way off) ends up with the most dramatic symptoms of TED. It is, however, a separate disease that follows its own course, with no direct relationship to the progress or treatment of the thyroid disease. So even if you did the RAI with steroids and experienced no worsening of symptoms, it would not necessarily mean that you were now “exempt” from TED. TED can come on at any time. Most cases present within one year (before or after) the thyroid disease, but there are those that occur outside that window, so we have to consider that it’s always possible.

I hope that helps, and I wish you luck in making your decision, AND with your treatment!

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1080906

Yes, the steroids have been shown to stop the progression of the TED with RAI. Ironically, although I had surgery for my thyroid, I am having mild radiation for my cancer and will go on the steriods for about 14 days. It is not that bac. Just be prepared to be hungry and if you drink…. you will be a cheap date. LOL I had a half a class of wine with dinner and looked at my friend and wanted to know who slipped vodka in the wine as I was already buzzed……

You will be just fine and a short time really doesn’t leave any lingering effects. Good luck.

[Anonymous]

#1021712

Hi everyone!
Thanks for the advice for my post around Mar. 30 or 31st. It was helpful. I have decided to go ahead with the RAI. I don’t have much of a choice given that I found no relief from one ATD after a year of treatment and I am allergic to the other ATD. As many of you know it gets tiring and frustrating not finding any relief and I am hoping that I will be one of the lucky ones who finds relief with RAI. However, I have one concern that I hope someone out there can help me with. I do have mild TED. I do not have any blurry or double vision, but I do have a slight bulging of the eyes and the usual dry/gritty feeling. For the most part I function find as long as I keep my eyes moist. I saw my opthamologist before the decision to go ahead with the RAI. He felt that my symptoms were not that bad and that monitoring my eyes for the time being was good enough. He felt that the RAI would probably not have done any good anyways. When I decided to go ahead with the RAI my endo advised me to tell the opthamologist. The opthamologist understands that I need to go ahead with the RAI, but he also informed me that RAI can make TED worse in some patients. He said that a short course of steriods started a few days before the RAI and continued for a week or two after can help some TED patients. Has anyone had the same experience or can anyone offer up any adive or opinions on RAI/TED/Steriods? I obviously want to feel better, but I am not sure I want to do it at the expense of possibly making my eyes worse.

Thanks much!
Kdub

[Anonymous]

#1080907

Hi all,

So I finally saw the orbital aculoplastics dr. yesterday to get my baseline exam for the TED. He is suggesting that I take the steriods before my RAI to prevent any TED. Has anyone heard of this, to prevent? He told me my eyes though extremly dry ( I have no tears) are not TED yet but I could see changes any where from 2-20 years after RAI. I am happy to say the least that my dryness is not TED. I just was wondering if the steriods really help to prevent? Alos he mentioned something called sjugrens syndrom that alot of people with an autoimmuned disease gets. He said it is another automimmune disease that makes eyes dry and mouth dry. Have you heard of this? thanks all for any light you can give I am having my uptake scan done on the 27th and then am being schedualed for RAI and just want to make a good decision.

[Anonymous]

#1080908

Hi standingfirm,

We have heard a lot about using steroids to prevent any potential worsening of TED symptoms with RAI. The only study that provided any statistics on this indicated that about 16% of RAI patients experienced some “temporary worsening” of TED symptoms, but “temporary” was not specifically defined. The same study indicated that 0% of RAI patients who took a concurrent course of steroids experienced the temporary worsening.

One thing to consider is that there are certain serious side effects to steroids. It’s best to have a very frank discussion with your doctor about the potential benefits vs. risk. My endo did not recommend steroids for me because I had no significant TED symptoms. I did experience a period of a few months’ discomfort when my eyes were more dry than usual, and I believe there might have been increased swelling in the muscles, but it did go away. Remember, though, that I have virtually NO symptoms of TED to begin with. I’ve been lucky and my tissues are only slightly affected.

I have not heard the possibility of the RAI affecting TED symptoms past the first few months after RAI.

Sjogren’s was suspected in a friend of mine, and it is an autoimmune disease in which the body is overall more dry (eyes included). I haven’t heard of it being particularly linked to Graves’ patients, though once a person has one autoimmune disease, there is a slightly higher risk of getting another. Perhaps that’s the connection. I’m not sure how you test for Sjogren’s or treat it. That’s for the experts on the Sjogren’s board.

I hope that helps! Good luck on your treatment, please let us know how everything is going!

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1080909

Just an added note to Ski’s informative response:

Taking steroids concurrently with RAI has not been shown (to my knowledge at least) to “prevent” TED. A patient could, in fact, do this and then, a year or two (or more?) later develop TED. To be clear: RAI does not “cause” TED. TED is another autoimmune disease. The study that showed the data about taking steroids at the same time as RAI suggested that RAI can stimulate an immune system response. In patients who have preexisting TED, however minor, the added immune system response can cause a temporary worsening of the symptoms of the TED.

Bobbi — NGDF Online Facilitator

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