Ask the Googler

The diagnosing ophthalmologist had shared his (very limited knowledge) of TED, the endocrinologist wasn’t much better and Vanderbilt was taking forever and I needed info, so I turned to the Googler. (I typically do not do this until I have the majority of the info from my actual physicians so I have a little better idea of what is real and fake info. I am well aware of the dangers of internet doctoring but I already knew I didn’t have the cancers so I ignored that Google result). I was able to find some info (very little regarding TED & Hashimoto’s. The vast majority were Graves & TED. I have Hashimoto’s) and I found ONE Facebook group (again, vast majority have Graves). The group isn’t very large but has members from all over the world so I have to pay attention to where the poster lives as there is a big difference in the way this is treated in America and Europe. I am careful about visiting the group because honestly, it can get super depressing super quick. It’s like every worse case scenario, horrible side effect & rare reoccurrence are all in this group and I just can’t see that all of the time. Over the next several weeks I was able to gather a fair amount seemingly accurate information though.

It took about 4 weeks from the CT until I got a call from Vanderbilt but they got me in just a few days later. We weren’t sure what to expect, or how long it would take.

We were there 3 hours, I was seen by 3 different “technician” type folks, plus the doctor, that all did a different test and each did multiple tests.

.

.

.

Lights on.

Lights off.

Up.

Down.

Left.

Right.

Waiting room 1.

Click when you see the lights.

Keep your chin down.

Waiting room 2.

somewhere near the beginning they needed to do tests without the prism. Instinctively when you put your glasses on and open your eyes, you expect to see clearly. I took off my glasses, she took off the prism, I put my glasses on and opened my eyes. I gasped and reached behind me for Stevens hand and tried to speak. I couldn’t see anything close to clearly. The double vision was so bad. I couldn’t begin to make sense out of what I was seeing. He squeezed my hand and the PA was super sweet while I tried to pull it together. I kept apologizing and she was reassuring me that such a vision change is a valid reason to cry. 

Glasses off.

Eye drops.

Wait.

Eye drops.

Wait.

Glasses on

Waiting room 1.

Waiting room 2.

Back to 1.

Measure pressures.

Stay in 1.

Move to 2.

.

.

.

I met with the PA for Dr S (ocular plastic surgeon) and then Dr L (neuro ophthalmologist). Dr L came and got us from the waiting room and everyone I had met with that day files in behind us. We talked for a few minutes and he again confirmed the diagnosis. He asked me to tell him what I knew about TED. I told him what I knew and how I knew it and we were all pleasantly surprised that my information was pretty much right. This appointment established my baseline and the treatment plan was to follow every 3 months with the first surgery possibly being in February/March of 2019. American “protocol” is to wait 12-24 months for the disease to burn out, then the first surgery. Dr L suspected they would operate at the 12 month mark for me since we were unable to find a prism to completely eliminate the DV & my left eye is very involved but that I would need to be evaluated by Dr S. He said that if I have any significant changes or vision loss that the plan would be escalated or they may try steroids & radiation (not preferred) depending on the what we were dealing with. But the vision loss can become permanent and they don’t want to wait to act. So we made follow up appts to repeat the tests and meet with both physicians.

Which brings us to present day......

I did all of the testing (minus a few of the drops) and the waiting room 1/waiting room 2 shuffle. Dr L saw me first and asked if I had seen Dr S yet that day (no, I see her after you) and his response (with a furrowed brow) was that he assumed not because she would have found him immediately regarding the test results. I went on to tell him I need new glasses (see how I ignored something important again) and....he cuts me off and says you can’t get new glasses now because they won’t hold for long and based on these tests you are headed to surgery soon. He asked me about the status of my blood clots (short answer..still on blood thinners, lab number increased instead of decreased), shuffled his papers together, said follow me. Took us to waiting room 2, went around the corner and found Dr S. A few minutes later he walked by, said she would explain everything, see you next time. We weren’t sure what to think. I was excited at the idea of surgery. My mind was skipping ahead to seeing well, looking normal, regaining my confidence and independence. I’m thinking about when it makes the most sense to do it...holidays...Isaiah & Amber’s wedding..finances. My mind was spinning with details and ignoring the seriousness. Vision loss. And I’m planning. Special talent, I’m tellin ya.

After a short wait, Dr S comes and get us. Pleasantries exchanged, I answer a gazillion questions about my ridiculously complicated medical file. I need to have orbital decompression surgery, it seems the muscles have thickened more and are compressing the optic nerve. This explains why when it was time to cover my right eye and read the letters on the wall using my left, I saw nothing but the light from the projector. No letters. How about now? Nope. How about now? No. Now? Nothing. Okay, what about now? E! Yup, the big E at the top of the chart. 

My eye has swollen and is bulging so much that the lid doesn’t close all of the way. So this is why my eyes hurt so bad in the middle of the night. They are drying out because they aren’t covered. I have gel now for that. It helps tremendously.

There’s a problem though, because of the blood clots and my health they don’t want to operate. It’s a risk they don’t want to take unless necessary. So, we are taking the European approach which is high dose steroids and possible radiation. Thanks to my own researching I was already familiar with this and knew some questions to ask. Tomorrow I will begin a 6 week series of IV Solumedrol (500mg) infusions followed by 6 weeks of infusions of 250mg Solumedrol. We were able to find an infusion clinic here in Knoxville, and only 7 minutes from my office, where I will go weekly. They said it takes about an hour and I will be able to go to work after. The side effects sound like they are about the same as oral steroids, but way more. Oral steroids for me cause sleeplessness, red, warm, puffy cheeks, generally hot all of the time (and I already have hot flashes thanks to the blood clots eliminating estrogen pills), irritability and my stomach is a bottomless pit. So yea, this should a really interesting season in our house.

I will have had 4 infusions when I am re-evaluated at Vanderbilt in August. I will have seen my hematologist the day before so I’ll have updated blood clot labs and we will make plans for the next step then. It all hinges on the test results.....Could be stay the course, could add radiation, could plan the surgery. It is all very much up in the air.
Which makes it really hard for me to plan ....... 

Blood Clots Don’t Cause Double Vision?

So how did I get here??

At the end of January I started experiencing some shortness of breath. I was knee deep in dealing with Steven having the flu and the worst back flare up he’d ever had (which led to a back surgery in March) and kept ignoring it. It seemed to me that my vision was getting worse as my breathing was worsening so I decided they had to be related (this is one of my special talents, finding ways to ignore things). When I finally went to the doctor, he told me that nope, that’s not a thing and I need to get to an eye doctor. The breathing deal went downhill quickly and I landed in the hospital for a week with bilateral PE’s. The double vision got worse and worse and I found myself closing my left eye the majority of the time. After I got home I made an appointment with an ophthalmologist to see what the deal was.

My eyes and vision were tested in more ways than I ever imagined possible. He kept asking me about my thyroid and clarifying that I have Hashimoto’s and not Graves. Finally, he told me that he was ordering a CT of my orbits to confirm but he was pretty certain I have TED. He gave me a little bit of info about it but was quick to say the folks that treat this would explain more. He was able to fit me for a prism that sticks on to my glasses lens (that day was the last day I’ve worn contacts) and eliminates the majority of the double vision. He was clear that he couldn’t treat me and that he wasn’t sure anyone in town could.

I saw my endocrinologist who was stunned to agree with the diagnosis. He told me that he was sending me to Vanderbilt for treatment. He’d only ever had 1 other patient develop TED and she was treated there with great results.

The CT results confirmed the diagnosis and I was referred to the Vanderbilt Eye Institute. I’ve had 2 visits there and my next post will get the backstory caught up and I can write like I need to. I find myself already forgetting different aspects (I’m a complex medical mess and sometimes details muddle together). 

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.