The mental trauma of TED is not recognised

My story began in April 2022 when I was first diagnosed with Graves’ disease.

I had been suffering with stiff muscles, palpitations, getting incredibly hot, tremors and muscle pains for about a year prior to this point but had not been able to physically see my GP due to no face to face appointments. I finally managed to get a phone appointment in February 2022 after calling and calling at 8:30 to wait in the queue and then eventually speak to someone. On the call, the GP casually prescribed me an inhaler as I explained I was short of breath coming upstairs.

I am a fit (ultra runner) and at the time 39 year old young woman. My mum is a nurse and was concerned that without listening to my chest I’d been given steroid drugs for my breathing. I didn’t use the inhaler very much as I felt something else was “off” and pushed to get a blood test.

Confident Victoria, just before TED struck

My bloods came back showing hyperthyroidism. I was referred to the hospital in April 2022 and told I could expect a 3 month wait. I didn’t get seen by an endocrinologist until September 2022. As I was concerned about waiting, I paid to see a private endocrinologist at the Priory Hospital in Birmingham. The doctor there gave me carbimazole which I started straight away. This was in May 2022.

My symptoms of Graves’ disease continued and the muscle pain in particular became overwhelming for me to manage. As a normally very fit woman who loves running, I felt disabled. I couldn’t walk up stairs without pain and couldn’t do any sport. I was offered no support from the GP or the private doctor, who after the first appointment – didn’t let me ask any follow up questions without another paid for appointment, which I was struggling to afford. On carbimazole I suffered from bruising, rashes, sickness, constant headaches and very bad stomach pain. Reporting this to the hospital they just said to carry on with it but it was very hard. To continue to work in a full time job whilst feeling this way was absolute hell.

At this point and recurrently through my journey I have felt like I didn’t want to carry on and some days, felt sad to have to wake up and fight another day. It is hard.

In September 2022 the consultant finally listened to my complaint that the carbimazole was making me feel so bad and did a blood test. My white blood cell count had dropped through the floor and I was picking up every cold and flu bug around. I was switched to PTU and finally all of the horrible Carbimazole side effects stopped. I started to feel a tiny a bit better but had no changes to my muscle pains.

Three months later, in July 2022 I began to notice changes in my eyes. At first I simply had lower eye bags that looked like I’d just not slept in weeks and weeks. But after a couple of weeks, my top eye lids became very puffy and I started to feel very self conscious and anxious.

I didn’t recognise myself anymore

I self-diagnosed my TED, however I didn’t see an ophthalmologist until November 2022. By this point, my eyes were very swollen on both the top and bottom lids. I went from a confident “quite like how I look” person to hating my face, hiding from mirrors and avoiding speaking to anyone who could get close to my face. All my photos avoided my eyes. I’d crop them out or take photos of just my body and legs if I wanted to record an outfit etc or send a selfie. I found work extremely challenging. I am an architect and work at a university teaching students, so much of my job is face to face. I absolutely hated letting people see my eyes. Seeing the endocrinologist in November 22 upset me the most when she said “your concerns are only aesthetic”.

I really feel that the medical team who have worked with me have no understanding of the impact of TED on mental health. I have cried and cried over this. There is so little support for TED.

Evidently Graves’ disease has had a significant impact on me. I had hoped to have children and already was getting a bit late for this but I’ve had to deal with the fact that Graves’ may impact this too. Having TED alongside Graves’, attacking my face and the person I recognise, has hit me hard.

I’ve been offered no treatment at all for TED from the hospital and have my appointment with the NHS ophthalmologist on 6 February to discuss where I’m at. Reaching out to them on email or by phone, they are not helpful at all.

It’s important to recognise with TED how traumatic it is. Every morning, waking up and not knowing what your face will look like in the morning. Not knowing if your eyes will be swollen or red. Not knowing when it will get better, but having to keep going with work and “normal” life.

TED is truly awful.

If you are a TED sufferer and need support please visit our facebook group Thyroid Eye Disease Support UK