[obnursenh]

#1060641

Hi all –

I was dx with Graves just about 18 months ago now. Have been on methimazole, varying doses, since then. As my endo says – my thyroid is a tricky one! We get me in normal, but it never lasts. Recently my levels were as off as they were at diagnosis, and yes I am closely monitored with labs monthly at minimum.

In the late winter, early spring, I began to experience some eye symptoms that I believe are thyroid related. Double vision upon waking that lasts 5-20 minutes on average; sometimes when it resolves it’s fine but other days I feel like I’m fighting it and my eyes get so tired. I have dryness too. My endo also believes this is thyroid related and I am seeing a specialist at Mass Eye & Ear next month. As anyone knows, the waiting is the hardest part – I am curious:

How will they determine it to be thyroid related for sure?
What are the treatment options?
Should I just have the thyroid irradiated to eliminate the issue or will that not help at this point?

Thanks in advance for any info or support you can provide!!

[Liz1967]

#1183843

Mass Eye and Ear is a great facility. The ophthalmologists there will know. I have TED and my double vision started out like yours, with it clearing after half hour or so in morning and returning if tired. This lasted a couple of months and then it did become constant. I had a total thyroidectomy. There are some studies that indicate that in some cases, this will prevent or even help the eye disease. The thyroid radiation can actually make it worse or cause it to happen. I would avoid it. There are options for the eye disease but mostly you try to wait it out and treat symptoms. You can get prisms for the double vision, eyedrops for the dryness and taping eyes shut at night for lid retraction. Mine was pretty bad so I had steroids, orbital radiation and just finished bilateral orbital decompressions. I have had Graves and eye disease for two years. You are going to be seeing good doctors at Mass Eye and that is the most important thing, to find the right specialists. Good luck!

[Kimberly]

#1183844

Hello – I’m sorry to hear that you are dealing with this. Hopefully, others who have experienced thyroid eye disease will also chime in, but University of Michigan Kellogg Eye Center has a nice web site that talks about diagnosis and treatment.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.kellogg.umich.edu/patientcare/conditions/graves.disease.html

There is also a nice site for the International Thyroid Eye Disease Society at thyroideyedisease.org, but that one seems to be down for maintenance at the moment. Hopefully, it will be back up soon.

You can also check out the GDATF’s YouTube channel, as we have several videos on thyroid eye disease:

https://www.youtube.com/user/GravesAndThyroid/videos

In terms of treatment options, patients who undergo RAI actually have an increased risk of worsening thyroid eye disease. One recent study found that patients who underwent thyroidectomy had less risk of TED. Of course, Graves’ disease is *very* individual – you can still get TED after thyroidectomy, and not everyone who does RAI gets TED.

Mass Eye & Ear actually hosts several support group meetings for patients with Graves’ & TED. They are on hold for the summer, but should have another meeting in the fall. If you’d like to e-mail Ellen at info@gdatf.org, she can add you to the notification list to let you know when the next meeting is coming up.

Wishing you all the best!

[obnursenh]

#1183845

Thank you, friends.

Your responses coupled with some of my own research of medical journals and in the Mass Eye and Ear site have answered so many questions. Unfortunately I am more nervous than ever.

Total thyroidectomy?
Eye surgeries?

Two and a half weeks to my appointment. And I guess I don’t expect a lot of actual answers then. Any ideas what I can expect at this appointment?

Freaking out inside.

[gatorgirly]

#1183846

I haven’t posted here in a long time but just wanted to say you’ll be in really great hands at MEEI. I live in Boston and have gone to several of the support group sessions Kimberly mentioned, as well. The MGH and MEEI doctors who join us are great!

There isn’t enough research about thyroidectomy vs. radioactive iodine in order to base your decision on what might happen with your eyes, but it will be good to establish a baseline and have an ophthalmologist who is experienced with TED give you some recommendations. They should also carefully review your endocrinology records and if possible, discuss your treatment plan with your endocrinologist. Since you haven’t chosen a permanent treatment yet for your Graves’ (and sounds like you will have to – I too had a very tricky thyroid and so I couldn’t stay on meds, ended up doing RAI…and unfortunately getting TED six months later).

What you might expect at the appointment:
Discussing your thyroid history
Discussing any changes in vision, eye problems
Typical vision tests
Visual field test – you sit at this dome-like machine and it tests how much peripheral vision you have, and checks for any “blind” or weak spots
Exophthalmometer – a tool that measures how much each eye protrudes
Eye pressure test – just that puff of air into each eye
Optic nerve imaging – kind of like a photo of what’s behind your eyeballs
Photographs from a few different angles
Being sent for more labs – some doctors want to run their own or check different

The last two are the best way to track changes in the actual eye protrusion, and if they are not offered to you, you should ask for them even if the doctor thinks you do not have TED.

Good luck!

[JEH]

#1183847

My doc advised me in 1998 that there was an outside chance that irradiating my glad could result in thyroid storm that would release a load of hormone that could exacerbate my TED. I chose instead to go with Tapazole and my eyes are essentially fine all these years later. If I were you, I would check this information out with all available resources before going the radiation route.

Jane

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