Charlotte developed Thyroid Eye Disease (TED) as the result of her Graves’ disease, which was diagnosed when she was seven year’s old. Below, she and her parents, Liz and Jon, describe what it is like.
Liz and Jon:
'Charlotte lost a lot of weight. Clothes that had fitted her became loose and she looked very thin in her swimming costume. She was also getting taller very quickly which at first led us to think her weight loss was the result of a growth spurt. Charlotte was constantly hungry although eating all the time and she became very weak, finding her bag too heavy to carry to school, and had difficulty keeping up in swimming lessons. She could not walk very far without becoming exhausted. We were always looking back and asking her to catch up.
'Charlotte had a hand tremor which was not obvious at first, but we did notice her handwriting getting bigger and messier. I’m afraid before we knew what was wrong with her (and even sometime after we did know), we were nagging Charlotte to take more care with her writing and asking why it was not as neat as it had been a few months ago.
'We noticed Charlotte needed to visit the toilet in the night which she had not had to do for some years. She was always hot, usually wearing t-shirts when everyone else was wearing jumpers in autumn and winter. Her heart was beating very rapidly, it could be felt when cuddling her and she had enormous trouble resting, needing to come into our bed in the night but not really knowing what was wrong. We also noticed high emotions which were out of character for Charlotte, flying off the handle and becoming disproportionately upset.
'The symptoms present very gradually, building up over time and sometimes it is someone else who notices them. We would say to other parents, don’t feel guilty for not seeing them sooner, it is very hard when you see a child every day to see the changes.
'Charlotte’s Grandma suspected her symptoms were thyroid-related. We took her to the GP who agreed and arranged blood tests and an appointment with a paediatric endocrinologist. This appointment was within two weeks and the paediatric endocrinologist said he thought it was probably Graves’ disease and started her on beta-blockers, then carbimazole before switching to 'block and replace' (see Hyperthyroidism Treatment - About Antithyroid Drug Therapy) which has worked much better.
'For the following couple of months we had appointments for ultrasound scans to confirm the diagnosis and get baseline measurements. The scans are very hard for a hyperthyroid child. It is difficult to stay still enough when you feel jittery and we all found the radioactive injections a little bit scary.
'The first 18 months were very up and down. Charlotte was sometimes stable, sometimes hypothyroid, which meant she was tired, tearful and depressed, and sometimes hyperthyroid again. It has only been recently with block and replace that we have had real stability.
'Charlotte’s eye symptoms are thankfully mild but dealing with the ophthalmology aspect of the disease has been frustrating. Initially we saw a local ophthalmologist who knew little of Graves’ disease and had not treated children with it. The ophthalmologist prescribed some drops for dry eyes and performed some basic eye tests. We were then referred to the Moorfields Eye Hospital in London one year after Charlotte had been diagnosed with TED. There we saw some excellent optometrists but did not see an ophthalmologist with knowledge of TED until another year and many more visits to our local hospital had passed. Our first meeting with an ophthalmologist with experience with TED was 29 months after diagnosis. We would very much have liked to have been able to have seen him at the beginning.
'She still has mild TED, which means that her eyes are sensitive and itchy occasionally. They protrude slightly and she has double vision at the periphery.
'Our advice to other parents would be to try not to feel too guilty about how much you have nagged your child to pay attention, keep still, improve their writing, keep up on walks etc. Now that you know it was the hyperthyroidism, you can put your energy into talking to them as much as you can and helping them to understand what they are feeling and not into beating yourself up!
'Expect some grieving at the start. It can take a while but your child will get better with the medication. We found taking in the diagnosis and the changes it brings in your child very hard and upsetting at first but Charlotte is much, much better now.
'Remember to explain to your child’s school about the condition. While they are hyperthyroid, your child may need extra snacks at school. Take time to learn about the condition and the medicines. I recommend joining the British Thyroid Foundation.'
Charlotte, aged 10:
'When I was ill, I felt over-active, dizzy and restless. I was very hot and sweaty and got tired very easily when I went swimming. I was hungry and thirsty all the time. I had trouble sleeping because I was hot and restless and kept having to go to the loo at night! I could also get angry very easily. At school, I found that words were jumbled up on the board and it strained my eyes. My eyes were sensitive and itchy and watered in the wind.
'Now I feel strong and healthy and I have a normal appetite. I’m a normal size, I sleep well and school work is easier.
'My eyes still water and I still get double vision if I look out of the side of my eye, like when I look out of the car window. I still get angry as well. My advice to someone with a thyroid condition is to count to ten when you are angry and tell your friends how you feel so they understand you are not cross with them. You also need to explain to your school about what is wrong and work out what to say when people ask about your neck or eyes being different. Trust the doctors - the medicines will make you feel better.'