Searchable abstracts of presentations at key conferences in endocrinology
Endocrine Abstracts (2012) 28 N1.3

SFEBES2012 Nurse Session Thyroid eye disease (3 abstracts)

My thyroid eye disease journey

Julie McLaren


Committee Member, TEDct, Bristol, United Kingdom.


At 39 I was diagnosed with Thyroid Eye Disease (TED) and commenced on Prednisolone by my Endocrinology team. There followed 18 months under my local Eye Hospital. I was started on Azathioprine. The Prednisolone was then gradually decreased to nil and then the Azathioprine decreased to nil. Now that my TED was inactive I transferred to Moorfields Eye Hospital (MEH). In 1 year I had bilateral lateral wall decompressions, bilateral upper lid surgery & bilateral lower lid surgery. I was lucky - I kept working during my treatment, but I had to reduce work place stressors. My employers had to put up with me taking time off for hospital appointments and weeks off post-operatively. I was also able to keep driving. I coped psychologically, but it wasn’t easy. On top of the awful eye symptoms, hurtful phrases such as “Are you pregnant?” & “cosmetic surgery” don’t help. People do not understand. Family, friends and Consultants at MEH helped get me through, but the Thyroid Eye Disease Charitable Trust (TEDct) really helped too - the information gained meant I was prepared for the various stages in my TED journey, but also the chance to meet fellow sufferers to share hope & advice was invaluable. Further surgery to remove an excess crease from my right upper lid occurred at MEH. My TED journey is now at an end, although I still have some residual features. However for patients just beginning their TED journey, my message to all nurses & doctors involved in their care is simple - while treating the physical side of this disease, don’t forget the emotional side. Please give patients a TEDct leaflet - the patient will decide whether to join or not, but the support & advice that can be gained is immense.

Declaration of interest: Conflict of Interest: It is not a research project. I am a committee member of TEDct.

Funding: No specific grant from any funding agency in the public, commercial or not-for-profit sector.

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