The Never Ending Experience

Having thyroid eye disease (TED) and a thyroid disease is really crazy. I feel like sometimes I feel really good and other times I do not. When I feel like everything is going right, my lab results come back not so great. It is so weird. You can literally do everything your doctor is telling you, and follow all their rules, and still, it feels like your body is fighting against you. It’s such a strange experience, and it is sometimes hard to explain to others.

The never ending experience of doctors appointments and changes

I have been seeing my endocrinologist for years now and I love her! Every time I have an appointment with her, I find myself getting very nervous and anxious. What are my blood test results going to say? Am I going to have to increase my levothyroxine or decrease it? What is she going to say? Are the results not going to be good?

I recently had an appointment where I thought everything was fine but it turns out I was almost back in Hypothyroid again. My doctor said to me that she wanted to increase my pills. I was taking 6 and a half a pills and now I am back to 7 pills during the week. When I was first diagnosed with Graves’ disease and later thyroid eye disease I had no idea what a ride this would be. I mean, it has been years and I am still getting my medications changed. It has been years and I still get worried every time I have a doctors' appointment.

Progress of my eyes

As far as my eyes are concerned, they are getting better! She took a look at them and even agreed. My parents have also said they have noticed a huge improvement. So what have I been doing? I gave them time since mine was a more mild case, which I am grateful for. That was also the advice from the doctors I saw.

So as far as what my eyes look like from the outside they are getting better, but I find that they still feel uncomfortable at times. Sometimes they feel like they are burning and other times they water a lot. It certainly does not help my TED that I have seasonal allergies. What I find helps me a lot when dealing with watery and painful eyes is over-the-counter eye drops. I have tried a bunch of different brands and I actually like most of them. My eyes immediately feel better once I put some drops in them. The soothing sensation that the drops bring my eyes really helps me, especially since for work, I am constantly staring at a computer screen.

Ups and downs of TED

I’ve written before that these diseases often feel like a rollercoaster and I will probably be saying that for the rest of my life. There are ups and there are downs. There are times when you feel like you are turning the corner, and then there are times when maybe you feel hopeless, and that is okay, feel all the feels! It is something that constantly has to be monitored and you have to tell yourself that it will be okay.

Are you currently going through an "up" or "down" period in your thyroid eye disease journey? You are not alone. This community is here to provide support. Click the button below to share your experience with our community.