Roughly two years ago - only a few days before my fourteenth birthday - I found myself sitting in the office of my local GP with a racing pulse, bulging neck, bug eyes, and shaky hands. It wasn’t that I’d swallowed a tennis ball and it had got stuck half way down my throat, I actually had Graves’ Disease, only I didn’t know it, yet. The doctor explained kindly and patiently that after careful consideration of the blood test and ultrasound it was by now apparent that I had a problem with my thyroid. She explained the symptoms, and to each I nodded in agreement - high pulse, nervousness, shaky hands, headaches, depression, sore eyes, swollen neck, the list went on. She smiled and told me things would look up and she was going to refer me to a specialist at the Children’s Hospital.

After this a lot of things were suddenly drawn into sharp perspective. I had been very sick for a very long time. In hindsight it can be drawn right the way back to when we went on a trip to India in January 1998, when I became so exhausted that I couldn’t enjoy myself. I thought it was jetlag or something and that going back to school would be a relief. I was wrong, things only became harder and I lived my life struggling through each day like my head was wrapped in cotton wool and I couldn’t access various bits of it at the vital times.

I never thought anything was wrong with me, I only thought that it was adolescence and that everyone was going through the same thing, so why should I complain? I couldn’t play sport, but going to a school that demanded hundred percent participation from everyone in Saturday morning sport, I had to. I twisted my ankle. And then three weeks later I blacked out while riding a horse and fell off and got concussion. That was what started it all - the trips to the doctors - one doctor wrongly diagnosed me and gave me Valium to stop my pulse from beating so rapidly.

But finally I found a doctor who immediately saw what was wrong and sent me along my way to the Children’s Hospital. It was a week after my fourteenth birthday when my endocrinologist first laid eyes on me, then a pathetic little girl whose body was so toxic with this disease that it was necessary to work quickly. My blood tests had shown that I was extremely sick with the disease. She started me out on nine tablets a day for two weeks and then I went back to see her and she kept up the dosage for a further two weeks, then I was to go down to six tablets and then four and then I would see her again after a month. Supposedly this was to make me much, much better. It did help, but not enough.

We battled on for months, struggling to find the right dosage. My doctor was becoming increasingly pessimistic that we would ever find the right amount of medication to bring me down to normal. I went back every month and had a blood test that tested my T3, T4 and TSH. By December some improvement had been made, but not enough, so my doctor put me on a dose of one thyroxine tablet a day and four tablets of propylthiouracil. It didn’t work, so she upped the dosage of my tablets.

In February that year I went on school camp for a week, by then I was taking six tablets of propylthiouracil a day and one tablet of thyroxine. Things were tough at school, because people looked at me and were afraid of me. They saw someone who had a chronic illness and they figured that if it could happen to me then why couldn’t it happen to them? My friends stuck by my side, but they didn’t really want to hear about it either, it made them uncomfortable, so I kept my trap shut and bore it. On other occasions, though, they were proud of my big neck and bulgy eyes and shaky hands. One of them used to think it was funny how she could feel my neck beating if she put her fingertips on my thyroid gland. Another used to monitor the way my hands shook to see if I was getting better.

But then in March 1999 my doctor became fed up with fiddling around with doses of medication. By about that time I was taking twelve tablets of various stuff a day, and a one point it went up to fifteen. My blood tests were showing fickle results. My T4 was relatively normal, being around eighteen or nineteen, while my T3 was so extraordinarily high - at around thirty - that it wasn’t funny. So, my doctor said, there were two options - battle on, or going in for the chop and have surgery. She didn’t really put it that way, she basically said it was time to have surgery, but in the end those were the options.

So we went off to see a surgeon on the third floor of the Children’s Hospital. He explained the procedure to us, and we went away to think about it. After a while we agreed on a date - the thirteenth of April. And then all that was left was to wait. A couple of days before surgery I was put on iodine to help prevent bleeding afterwards.

And then on the day I walked into the day center and sat down in a little room where about five different doctors came to tell me what would be happening - the surgical registrar, the endocrine registrar, my own doctor, the anaesthetist, and a nurse. I was nervous, but I was brave, I didn’t let it overcome me. Then at around three in the afternoon they took me down to the place where I got into a surgical gown and the next thing I knew I was wheeled into a little room where there were two stony faced men looking down at me and telling me that they would see me in an hour. The last thing I remember thinking was ‘this stuff will never put me to sleep’.

Two hours later I woke up and the pain was unbearable, I couldn’t help but shake my head around to try and get rid of it. There were kind people telling me to relax and when I opened my eyes I could see a fuzzy looking pair sitting on a seat near me - my parents. They wheeled me along a lot of corridors and into a room where I must have fallen asleep because the next thing I knew my brother was there with my parents. I asked him what time it was and he told me it was eight. I remember thinking that I couldn’t believe he’d missed Drew Carey to come and see me (he later told me he recorded it).

For the next day I was fairly sick. The following night a family friend came around to see me and I was too sick to really talk to her. My mum was worried because I had a fever and my face had become extremely puffy. That was just extra bleeding inside that would go down. I had a massive scar on my neck, I couldn’t talk, and everything just seemed too hard. I couldn’t eat but I had a drip pumping fluids, morphine, and some extra calcium into me. By Thursday they took me off everything but the morphine and started to try and eat. I threw up a few times and then the kind endocrine registrar came around to see me and asked me if I could feel any tingling. It was a funny thing, but I hadn’t noticed it until he told me that and then suddenly I realised that that’s what the problem was.

Days went by, people dropped in but I couldn’t really talk to them and I just wished they’d go away. There were some problems. My voice wasn’t getting better and I had a calcium deficiency and my blood tests showed my thyroid was slightly underactive. My surgeon told me I could go home on Friday, the endocrinologist thought different. They took me off the drip calcium on Saturday and by Sunday morning my calcium was so low that I could barely feel anything when I touched it and my bones were beginning to feel very bendy.

So for the next few days they took lots of blood tests. I thought I would kick the walls down I wanted to get out of there so much. On Tuesday they moved me down to the adolescents’ ward where I stayed a night and thought I would be in there for a lot longer when finally the endocrine registrar came down and told me I could go home that day. I could have hugged him, but I didn’t, I just smiled and said thank you. When I got home I burst into tears.

For the next two weeks I stayed at home. And then gradually I went back to school for small amounts of time. I didn’t go back to school properly until July, after the school holidays. I became very depressed, I was convinced I was still sick, and I still believe I was. But my doctor wouldn’t do anything about it. She said I was tired because I was depressed, and sent me to another doctor she knew who was supposed to talk to me about things. He didn’t help in the slightest only told me I needed to go on anti-depressants, so I smiled at him, nodded, told him I would be in touch, turned my back and never looked back.

I learnt to deal with it myself. For a long time it was very hard, but I managed. Today I still have the scar on my neck, nearly a year and a half later, and I’m still tired all the time, and I still get very depressed about things. But I’m managing, and although I think that surgery wasn’t necessarily the right step to take, I’m glad I had it purely because it meant something was actually getting done about how sick I was.

Top