Monika’s Story

After developing Thyroid Eye Disease, Monika underwent multiple surgeries, including decompression and strabismus, to manage her symptoms. Despite challenges that affected her daily life, she remained determined to adapt and find support. Wanting to help others, she founded a self-help group, creating a strong community for those facing similar struggles.

This is my TED | Monika’s Story

I’ve had decompression surgeries, strabismus surgeries, and I had to have sinus surgeries, because after the decompression surgeries, I developed sinus infections in the jaw because there was no longer any space between my jaw and orbital bone, which caused inflammations.

This is being treated by an ENT specialist. Additionally, I have a neurologist because I experienced severe facial pain, which often leads to dizziness. That’s just how it is, unfortunately.

Challenges on My Thyroid Eye Disease (TED) Journey

After my thyroid surgery, unfortunately, my eyes got worse again. My vision was so impaired. I couldn’t see colours anymore. I saw everything in just black and white. That was, that was my worst experience.
My ophthalmologist at the hospital told me, we have to act immediately, or you’ll go blind. I had another decompression surgery, again the orbital bone, because it had become clear that I wasn't seeing well with the right eye. Now I have another plate here in my temple.

Unfortunately, strabismus operations followed, because through this procedure, I ended up cross-eyed and my eyes were all over the place. Finally, I had an upper eyelid surgery. However, before that eyelid surgery, my left eye had shifted further down—it was positioned somewhere here.
Consequently, the facial surgeon decided to lift my eye and reposition it forwards.

Life Before TED

Before I received the diagnosis of this hyperthyroidism, I was a real workaholic. I worked a lot and was never sick. I had no thyroid issues before that. Until 2011, when I had swollen legs, my hair was thinning significantly, falling out, then I lost weight. And via a blood test, it was determined that I had hyperthyroidism.

I had swollen eyes, very dry eyes, because they were tearing excessively. I worked a lot in front of a screen, using computers but I noticed then, it was no longer possible. I needed a lot of breaks in between. Additionally, there was the air conditioning in the office, which made things worse and worse. Driving was already a problem, as well as reading at all. It got worse week by week.

I was referred by the hospital to an ophthalmologist because they said this ophthalmologist was familiar with the condition (TED). And he told me that once my thyroid was operated on, my eyes would get better. Unfortunately, that wasn’t the case.

The ophthalmologist told me that it was TED. In Austria, it is categorized under Basedow’s/Graves’ disease.

** TED and Graves’ disease are two distinct conditions that require separate treatment. **

Because I had never been sick before I simply didn’t want to acknowledge it. Even though they kept trying to explain its importance and that this illness was not to be taken lightly.

Embracing Change and Empowering Others

I used to be very active in sports, for example, but I couldn’t do that anymore. I also couldn’t ski anymore because I noticed that my vision also affected me negatively.

What has been very helpful for me is the self-help group, which I founded. I had the impression I was the only one dealing with this, but over time, I realized that many others are affected, too.

We are about 160 people in the group. Most of them are women; we have very few men. I stay in closer contact with around 30 people. Every two months, we organize a round table at a restaurant. The atmosphere at the restaurant is very relaxed, and we chat not only about the illness but also about very personal things.

I always say, please, take what you are learning here in the group seriously, and don’t underestimate it. I don’t want anyone to go through what I went through.

You need time for your illness, not for work, but for your illness.

Quick fact:

While TED is most commonly seen in people living with Graves’ disease, it is a separate condition that requires different treatment. Despite being two separate conditions, TED is sometimes called various names that may include Graves’ or thyroid, including:

• Graves’ eye disease
• Graves’ ophthalmopathy (GO)
• Graves’ orbitopathy
• Graves’ disease eyes
• Thyroid-associated orbitopathy (TAO)
• Thyroid ophthalmopathy

If you come across any of these terms, know they all refer to Thyroid Eye Disease (TED).

This story reflects the personal experience of one individual living with TED. It is not intended to represent all people with TED.

Symptoms, severity, treatment decisions and outcomes can differ from person to person. Always seek advice from a healthcare professional about your own situation.