[cannwynn]

#1060586

Hello – I’m new to this site and thankful to have found it. I have a question regarding TED. For years, I was diagnosed with Ocular Myasthenia droopy eyelid & double vision (1993) before I got RAI. Double vision spounts off and on. The last 3 years, I have had double vision and have been treated with IV Steriods. November 2014, I finally asked my neuro-muscular doctor why my eyes were so irritated, red, dry (looked like I had a rough night). She commented that probably allergies. I didn’t agree. I contacted a neuro-opthalmologist and he said I have TED. I was shocked! I wondered if I could have just gotten it or if I’ve had it all along. Another auto-immune disease….hmmmm My last IV Steriod injection was Jan. 9, 10, & 11 – 1 gram. My double vision cleared up after about a week or so and now I’m noticing it seems to be coming back. It comes back gradually. My question is if I truly have TED, will it get worse. I’ve read some of the stories on here and it sounds really scary. Will my eyes start to protrude and require eye surgery? I see my ophthalmologist next Wednesday and I will ask him but my question to you all is how does this start/progress?

[Kimberly]

#1183533

Hello and welcome – the question of how TED will progress is a difficult one to answer. A statistic from the American Thyroid Association says that less than 5% of Graves’ patients will progress to more serious issues with TED.

The #1 most controllable risk factor is not smoking and not being around second-hand smoke. Smokers are more likely to experience severe TED symptoms and don’t respond as well to treatment. (Although TED can strike anyone – nonsmokers can still have severe cases).

You might also talk to your doctor at your upcoming appointment about selenium. There was a study in Italy that showed that selenium supplements (100 micrograms twice a day) might have a positive impact on mild TED. However, the study was done in an area known to be selenium-deficient, so more research will be needed to determine whether this might be helpful to other patients. I know there is at least one study going on in the U.S. to see if that might help patients here.

As for the steroid therapy, that does not cure TED, but only provides temporary relief of symptoms. However, for patients who are experiencing more severe symptoms, the benefits can be worth the risks.

Take care – and please keep us posted!

[snelsen]

#1183534

I had severe TED. Have IV pred as you did. As Kimberly said, it “lasts” just a short while.
You can see my history at the bottom of my post.

Be sure your ophthalmologist is familiar with TED. Probably a good idea to have that doc refer you to a neuro-ophthalmologist. That is who consistently followed me.
All the surgeries you see, I really had to have. I found double vision terrible to live with! The grafts from my mouth to my lower lids were a disaster, and I am sorry I did that. recovery slow and hard, and poor outcome.
The OD I had to have,and could now do the same on the other eye, but I have had so many procedures, I am DONE.

I wear sunglasses, a visor, use lots of eye drops, and have to tape one eye closed when I sleep. But fortunately, I am definitely an exception. Few people have severe tED. Especially 5 decades after having Graves.

Do write after you see the eye doc.
Shirley

[cannwynn]

#1183535

Hello Kimberly & Shirley. Thank you very much for replying. I will post an update soon. I had to reschedule my eye doctor appointment due to other issues. I will provide an update soon with more details. Thanks again.

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