Jackie's story

Jackie’s TED story is ongoing. Here, she writes about the experience, how the disease has affected her confidence and shares her views on surgery.

"I had breast cancer in 2002 and 2007. The treatment was a double mastectomy with reconstruction, chemotherapy and Herceptin for a year the second time. I was also diagnosed with a faulty gene namely TP53. In May 2010 I was diagnosed with an overactive thyroid. When the radioiodine I was given in December 2010 did not work, my thyroid was removed and my eyes started to deteriorate in 2011. I was referred to the thyroid eye clinic in February 2011 and diagnosed with an early onset of Thyroid Eye Disease.

By the summer my eyes were getting worse. They were very itchy and I was given drops and lubricant by the eye clinic. By the end of that year it was very noticeable that my eyes were bulging. In 2012 I was going backwards and forwards to the eye clinic and every time I was just given more viscotears and lubricant. I was suffering from migraines and the pressure behind my eyes was sometimes unbearable. The Thyroid Eye Disease was progressing. My confidence was at rock bottom and when I attended the clinic more often than not I cried in front of the consultants because of my frustration.

In the summer of 2012 I got a private consultation at the local hospital to see if there was anything they could do. However, the consultant told me that my consultant was the best at what he did and any surgery should be carried out by him. When I next saw the Doctor at the NHS hospital I asked him about decompression surgery. He was very reluctant to do it but I told him that I couldn’t handle the TED anymore and it was taking over my life. He decided that he would do the surgery.

I had the first eye done in December 2012 which went fine and I had the second eye done in February 2013. The results are fantastic. No more headaches, no more red eyes and I’m not putting drops in my eyes tentimes a day. One eye has goneback a bit further than the other however, it’s not particularly noticeable and I feel much more confident now with the way my eyes look.

However, I have been left with double vision. I attended the clinic a month after my second operation, asked about surgery to correct the double vision and they told me it was too early as I needed to let my eyes heal first. At the moment, once again, the Thyroid Eye Disease is taking over my life but I will not let this beat me. If I can be of any help to other patients who are considering this surgery I would recommend it."


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