Louise

My TED story. A bit of background info, I was diagnosed with severe hyperthyroidism by chance in December 2016 when I was seen by a rheumatologist for a routine appointment for my rheumatoid arthritis, he happened to ask if I had any new symptoms.

I told him I had a tremor in my hands and couldn’t control it. After examining my thyroid he said it could be a thyroid condition as my thyroid seemed enlarged, or it could be Parkinson’s disease! He ordered bloods to be done urgently.

A couple of days later I got a call from my rheumatologist saying he’d done an urgent referral for an ultrasound scan, referral to an endocrinologist and my GP had been advised to start me on carbimazole, and to start immediately.

Fast forward seven or so months to June 2017. By this time I was having eye issues, they felt dry, were red, watering constantly, very sore, and I had pain on eye movement when my head was still, occasional blurred vision and they were very puffy.

I saw my GP who advised me to see an optician, the optician advised me to see my GP! I have now discovered this is a typical scenario as thyroid eye disease is most likely to be misdiagnosed or missed all together.

No advice other than to use drops as I had dry eyes, no mention of TED. I had seen from the Thyroid Eye Disease Support UK Facebook group people having eye symptoms, but as far as I was aware I didn’t have Graves’ disease.

I had seen my ENT surgeon and had already been listed for a TT. I contacted my Endo team to see if Graves’ and TED was a possibility, my blood tests confirmed I had Graves’ after being seen in July 2017. Thankfully following an urgent referral to the joint Thyroid/TED Clinic at my Eye Clinic, they confirmed I had early TED too.

It was a relief to know what was going on but also very scary too. I was a smoker at that time and was advised to stop smoking, to take Selenium supplements for 6 months, and I had some eye drops prescribed for dry eyes. I was referred for a non urgent CT orbit scan at the first appointment too.

I had a total thyroidectomy (TT) 2 weeks after the Eye Clinic and TED/Graves diagnosis in August 2017 and stopped smoking 6 months later (almost 5 years ago) I’m now a vaper on minimal nicotine vape juice.

My TED doctor is happy for me to continue vaping so I’m happy too. I had several follow ups with the TED clinic but was discharged as my TED was stable after a while. I’d say I was discharged about 18 months post TT.

I saw my Endo again as although my TED appeared “burnt out” the lasting effects were impacting my life, bothering me psychologically. I asked for a referral back to the TED clinic. They were uneven, one had a more open and staring appearance to the other. That’s all I could see when I looked in the mirror, eyes that didn’t belong to me, they were really affecting my confidence, I absolutely hated how I looked and was having difficulty coping with my adjusted looks.

When I was eventually seen I was offered the option of surgery to improve this and had this done. The two procedures I was offered were to have either a Mullerectomy or levator recession (both lid lowering surgeries). I opted for the levator recession surgery after speaking with others who had experienced the surgeries.

I had the operation in October 2020. Although the final results of the surgery have not taken me back to my original looks, it has improved my appearance somewhat. Sadly it does still really bother me, but once again I was discharged. With the pandemic hitting I’ve just left it at that and not sought a referral again.

If you would like to connect with other TED warriors who are going through similar experiences, our Facebook forum Thyroid Eye Disease Support UK now has more than 800 members and you are welcome to join us.

Do you need to talk about TED? You can call our TED Helpline 9am-9pm every day including weekends and bank holidays.