Kathryn’s Story

After giving birth, Kathryn began experiencing eye symptoms she initially dismissed, only to later receive a life-changing diagnosis of Thyroid Eye Disease. The journey to diagnosis was challenging, with misdiagnoses and delays, leaving her feeling isolated and anxious. Despite the difficulties, she adapted, found resilience, and now shares her story to help others navigate the condition.

This is my TED | Kathryn’s Story

I had encountered Thyroid Eye Disease when I've been trying to research something on the internet and I just remember thinking at the time how absolutely horrific it looked; and that thankfully that wouldn't happen to me because I had Hashimoto's which made my thyroid underactive and it was really unlikely that I would ever get that condition and that it only happened to people with Graves' disease.

Shortly after I gave birth to my son, I noticed that my eyes were becoming really sore, really gritty and dry and puffy and that something unusual was happening. I didn't think at the time that it would be Thyroid Eye Disease.

After a couple of weeks, I still had those symptoms. So, I realised that there was something wrong and, I guess, the difficult part was finding out what that was. Eventually, I ended up with a diagnosis of Graves' disease, which had developed probably during pregnancy and postpartum, and that led to Thyroid Eye Disease.

Spotting the Signs of Thyroid Eye Disease (TED)

The main symptom that presented for me in terms of physical symptoms was I had double vision, and I was noticing that my eyes were changing quite quickly. They were extremely red, bloodshot. The conjunctiva in the corners was huge. It was like a big jelly in the corners of my eyes. I've always suffered from hay fever, but not to that extent. My eyes started to become more prominent, and I could literally see that unfolding in front of me on a daily basis. It was progressing, I could see it progressing. So, I knew that's what was happening to me and it was really frightening.

The Difficulty of Getting a Diagnosis

My journey to diagnosis felt like forever and I just remember sitting in my car and Googling on my phone and just realising that's got to be Thyroid Eye Disease. I'd gone to my GP but still the GP didn't think it would be Thyroid Eye Disease. And it seemed that every medical professional who I saw suggested that perhaps it was an allergy or, you know, perhaps it was hay fever which would be immune related, and it was clearly something like that.

I was already seeing an endocrine specialist for my Hashimoto's thyroiditis. I hadn't seen him for a long time because I hadn't really experienced any issues. He recommended a specialist to me who is a consultant ophthalmologist and oculoplastic surgeon and operates at Moorfields Eye Hospital in London. And so I got in touch with his office and he actually himself responded to my email and said he would see me that day if I could get to a hospital in South London.

So I jumped in a taxi and, and went for my appointment. And I was really, really grateful and thankful that I was finally seeing somebody who could tell me the truth. He told me in no uncertain terms, ‘Of course, you have Thyroid Eye Disease.’ And I cried.

So, you know, it was such a relief to have it confirmed and to know that I would finally get some help. But it was a devastating diagnosis.

The Impact of TED: My Advice for Patients

In terms of how Thyroid Eye Disease affected my daily life, I'd say that for me the biggest impact was probably on my mental health. It changed me.

And initially in those first early weeks I found it was very isolating. It didn't stop me being independent and looking after my son, but it was an inconvenience not to be able to drive. I could still read, and I could still do my job. I wear glasses for some things, and I couldn't really wear glasses because my eyes ended up protruding so far that they actually like touched the lenses. So that was uncomfortable and annoying.

From a kind of introvert perspective, waking up every morning, seeing these changes, it was incredibly frightening. I was devastated. I think there was so much social anxiety that came with it. I didn't feel like myself.

My advice to someone who's just been diagnosed with Thyroid Eye Disease is to believe that there is hope and to remain resilient and to exercise some self-comfort. Just don't be too alarmed. Hang in there, be prepared to advocate for yourself and don't stop until you have got the diagnosis and a treatment plan. Make sure that you keep going and ask questions, read as much as you can, and just try to meet the right people who can help you.

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.