Information Living with thyroid disorders Xylia - congenital hypothyroidism I was diagnosed at nine days so obviously I don’t remember anything but my Mum remembers a phone call to make an appointment with the hospital. She says it was all sorted out the day they phoned to say my TSH levels were raised. Luckily she wasn’t too worried about what was going to happen as she’d been dealing with hypothyroidism since her mid-teens, so none of the concepts were new. Mostly though she was glad it had been caught right away, as she’d been hypothyroid for years before finally being diagnosed. That had a huge impact on her life, so she was glad that the same wasn’t going to happen to me. Mum says that looking back at it there had been signs that something wasn’t right,. For example, the midwives thought their thermometer was broken, as my body temperature was so low, so they tried another thermometer and the temp still came up low. I don’t find it too difficult to manage the symptoms. If I get cold I put on more layers, I let teachers and sports coaches know what symptoms might occur when my levels are off, so they can help spot things, and also to give a bit of an explanation for when they are. If I think I have a lot of hypothyroid symptoms I try to go for blood tests sooner than scheduled. I’m trying to take my medication by myself but my mum still asks if I’ve taken my meds, and sometimes I haven’t so I take them then. I tried using a box with days on them, to organise the tablets, but a friend knocked it over, so now the little boxes are everywhere! So I’ve been trying to remember from the normal prescription boxes. I'm 14 now and my thyroid condition does affect my school and social life, but not much and only when I get too tired or too cold. Sometimes hospital appointments and blood tests mean having to leave school. My friends wonder about all these appointments, and how often I get blood tests and why, so sometimes I explain to them. I’ve also had to explain to some teachers who don’t believe I could have hypothyroidism because I’m too young or too skinny. I think it would be really useful if someone developed an app to help keep track of taking medicines, knowing when appointments are, transitioning from being a kid whose parent takes care of everything to becoming responsible for that sort of thing yourself. Having a symptom tracker, to see if it is worth booking a sooner blood test, and alarms to remind me to take or reorder medicines would definitely help me.