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.

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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.

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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 .......