Zoë’s story

My name is Zoë and I wanted to share my story of my journey with hyperthyroidism.

I was 12 when I got diagnosed with autoimmune hyperthyroidism (Graves’ disease). I honestly didn’t notice anything was wrong for a while. The first time I noticed something was wrong was when we had family friends over for lunch. I was running around outside with their children when suddenly I felt really short of breath. I went inside to get my inhaler as I just thought that I wasn’t very fit. Then my mum, who is a doctor, came through and realised that my heart was beating much faster than it should. I had been wearing a Fitbit for about a year so we went back and checked what my heart rate had been like. It showed that for about three months it had been getting gradually higher and higher. This led my mum to book an appointment with the GP. I have a strong family history of thyroid disorders but I could tell that the GP was sceptical because of my age, but they sent me for a blood test to check a number of possibilities.

On the day the results were due back I was at school and began feeling incredibly ill. I went home and my mum contacted the doctor who said that the results showed my thyroid was overactive. The doctor had been in touch with the hospital and I got an urgent appointment that same day. I went to the hospital where there was a consultant and a couple of junior doctors in the room. One of them explained everything I could possibly want to know about the thyroid, my condition, and what was going to happen. I went home that day with a prescription for carbimazole and propranolol with the hope of controlling my thyroid and heart rate. 

For a while after this I had to get blood tests every few weeks and had regular appointments with my consultant endocrinologist. I was quite unstable for a while before I managed to go into remission. I was tried off the tablets for three months but unfortunately I relapsed. This meant that we had to explore other treatment options as long-term carbimazole wasn’t an option and it wasn’t doing a very good job at controlling it anyway.

As I was only 13, it was decided that the most appropriate option was going to be a total thyroidectomy. This was during the lockdowns so I had to wait for a while before I managed to get my surgery in September 2021 when I was 14.

Leading up to the surgery there was relatively little preparation apart from having to take calcium tablets for a couple of weeks. On the day of my surgery,  I went to the hospital in the morning where I met the nurses, the anaesthetist and the surgeon. They all explained what was going to happen, along with the potential risks of the surgery. I got into my gown and was wheeled off to the operating theatre.The original plan was for medicine to be given through a vein to put me to sleep, however, I have very bad veins so they struggled to get a cannula in. They ended up using gas and a mask to put me to sleep to try and cause minimal distress. I don’t really remember waking up but I do remember not feeling great which wasn’t very pleasant.

After a while back on the ward I began to feel a bit better and was able to eat something. Unfortunately, my calcium level dropped. This is a possible complication of the surgery so I had to stay in hospital for an extra day which wasn’t great. On discharge, I was given a new medication called levothyroxine and some calcium tablets to take home. 

Since the surgery (which was two years ago now) I have been completely stable on levothyroxine. My calcium level returned to normal within a couple of months. I have to get blood tests every six months until I am 18 when it will be every year.

A big fear of mine was what the scar was going to look like and, honestly, seeing it after my surgery filled me with even more fear. However, it has been two years and the scar is there but it has faded so much and pretty fast too.

I am eternally grateful to all the medical professionals who helped me. It is a scary process. You can’t avoid that; but it won’t always be so scary. I have to live with this for the rest of my life but it doesn’t affect my day-to-day life. As long as I continue to take my medication each morning I can live my life as I wish!

 

 

More information

Living with hyperthyroidism 

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