Thanks for coming to my TED Talk

I’ve decided to resurrect The Pod as a way to keep a record for my own reference and maybe it’ll help someone else dealing with Thyroid Eye Disease (TED). Finding info online (that is not super technical) is pretty difficult but I did find a group on Facebook that’s helped & maybe this will be another reference for someone. This initial post is going to be long but will have a lot of the details needed to understand what I’m talking about going forward.

Disclaimer: this is my personal experience, from my point of view, told in my own words. 

Thyroid Eye Disease (TED) is a relatively rare complication of Graves Disease (associated with an overactive thyroid). TED is more rare in patients with Hashimoto’s Disease (associated with under active thyroid). The same antibodies that attack the thyroid also “like” eye muscles. When these antibodies attack the eye, it causes the muscles to become inflamed and enlarged. This results in the eyeball being pushed forward from the eye socket, limits the movement of the eye, causes the eyes not to completely close, severe double vision, dry eye, eyes watering and extreme sensitivity to light. This isn’t all of the side effects, and the biggest one not listed above is vision loss (due to the inflammation compressing the optic nerve).

TED is not necessarily a result of uncontrolled thyroid disease (mine has been stabilized with medication since I was diagnosed in 2015). TED is very misunderstood, even in the medical field. I have educated at least 4 doctors since March and 2 of them had never even heard of it before. 

Diagnosis is done through an extremely thorough eye exam and confirmed via CT scan. Treatment for TED in America is mainly surgical, almost always 2 surgeries and a third depending on how the eye lids are sitting after the first two. The first surgery is Orbital Decompression which removes bones around the eye socket to make room for the enlarged eye ball. The second surgery is strabismus which moves the eye muscles and realigns the eyes so that they move together. The surgeries can’t begin until the disease has stabilized. This usually takes between 12-18 months. During this time you are examined every 3 months to measure the pressure in your eyes and your vision.  The time table for treatment to begin changes if at one of your follow up visits there is any vision loss or if the pressure behind your eye is too high.  Both of these could lead to permanent vision loss.  

This is one of those things that takes specialists to treat....the 2 main providers I have are Dr. L, a Neuro Ophthalmologist (the head of my treatment team) and Dr. S, a Ocular Plastic Surgeon. This isn’t something I could receive treatment for locally (I was diagnosed here and referred out). I live right outside of the 3rd most populous city in Tennessee and still have to go 170 miles away. I am super grateful it’s not farther and we have the means to make the trips (and I gotta say I sure love road trippin’ with my husband).  

I think I've covered all of the major parts of this deal and going forward I plan on this blog being more of my personal experiences than a medical class.  

Thanks for coming by....feel free to leave a comment and let me know you were here!

oh...ignore the About Me section on the side, it's about 85% accurate.  I haven't done this blogging thing in a hot minute and have yet to figure out how to update that section.