What were your symptoms?

There were many different things that appeared all at once.  For a couple of weeks I was very tired, had no energy and couldn’t eat. Every time I lay down it felt like something was pressing on my chest and one of my eyes was protruding. 

How was your condition picked up and diagnosed?

I attended A&E in May 2019 with a tight chest and fast heartbeat but they put it down to anxiety.  I had lost a lot of weight. I had gone down a clothes size so had to rebuy all my clothes in a smaller size. For a good few weeks, I had felt really tired and had been sweating heavily during the night. It was so bad at one point that I had to use different pillows and change bedding throughout the night. Also, when I lay down it felt like something was sitting on my chest forcing me down.

After struggling with day-to-day activities due to fatigue, and noticing one of my eyes was looking enlarged, I made the decision to take myself to the walk-in centre in Sheffield.  I waited several hours in the clinic and was almost at the point of leaving due to the waiting time. Thankfully I was persuaded not to by the doctor who checked my heart rate and told me it was over 150. This pretty much saved my life!

I was then sent to A&E immediately where they did extensive tests due to the amount of symptoms I had. They discovered I had over a litre of fluid around my heart. This had built up to protect it from my body attacking it and I had to have it drained within hours. This is when the doctors diagnosed Graves’ disease and thyroid eye disease.

Did you know much about thyroid disorders before your diagnosis?

I knew pretty much nothing about thyroid disorders.

What treatment have you undergone?

After months of appointments with my endocrinologist, I was offered the option of either radioiodine (RAI) treatment or surgery (total thyroidectomy).  After taking on board my endocrinologist’s advice, and speaking with my family, I chose to go with a total thyroidectomy.

I had my surgery two days before lockdown in 2020. After my operation, I had an internal bleed which happens in less than 1% of surgeries but I happened to be in that 1% bracket! So I had to go back into surgery three hours after my original operation. Two weeks later the biopsy results showed it had actually been thyroid cancer.

What part of your diagnosis and treatment have you found especially difficult?

I have found it tricky to get to the right dose of levothyroxine. It’s also been a challenge trying to keep in shape and not to put weight on.  I have also struggled to come to terms with my mood swings. My eyes are also not the same as they were prior to becoming poorly.

Was there anything that particularly helped you understand more about your condition or to feel better supported?

The staff at Sheffield endocrinology department took the time to explain things to me when things just weren’t sinking in. They also offered me time to speak to my parents and partner and supported me via appointments, phone calls and online support hubs. They also helped me to know that it’s ok not to be ok and that when I felt down about things it was ok to ask for help .

Is there anything you would like to say to others who may be on a similar journey?

Don’t be afraid to ask for help. If you don’t feel right get yourself checked. You know your body best! If your weight is falling off without any effort; if you’re unexpectedly tired all the time and have no energy;  if your eyes look different; if your heart rate isn’t normal then go and get yourself checked out. As The Beatles sang ‘I get by with a little help from my friends.’

More information

Living with hyperthyroidism 

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