Information Living with thyroid disorders Joe - congenital hypothyroidism I was born in Sheffield in 1992 and was diagnosed with congenital hypothyroidism (CHT) aged just one week old. This was after routine new-born screening and then a physical examination after a positive blood test which found that I didn’t have any formed thyroid gland whatsoever. I had already become slightly jaundiced and was particularly sleepy (even for a baby). I began lifelong levothyroxine treatment immediately. It was a very anxious time for my parents and close family, most of whom had never even heard of a thyroid gland, let alone the problems that can occur when one malfunctions! They recall a lack of information being available to them at the time. I was referred to a paediatric endocrinologist at Sheffield Children’s Hospital and my hypothyroidism was generally very well controlled throughout my childhood. My mum or dad would make sure I took my levothyroxine every morning by giving it to me first thing before breakfast. I enjoyed playing football and most other sports. Growing up in the Peak District I have a love of the outdoors. Thanks to the care I received, I was able to do the things I enjoyed just like everybody else my age and I progressed well at school. However, my condition was kept very much a secret - in hindsight this was not a good thing and I should have embraced the importance of my condition from a young age, as I’m sure this would have been the case if I’d had a more ‘common’ health condition. I visited Sheffield Children’s Hospital to see my specialist very frequently, especially in the first few years of my life. These visits were every two weeks early on and then became every month and then every two to three months as I grew into childhood and developed normally. The visits became less frequent and after the age of five I only had to be seen annually. The care I received was excellent. The specialist always listened to my own or my parents’ concerns and was very clear about my progress and whether I needed a dose change or not. My memories of visiting him are very happy. I have memories of slight under-treatment and over-treatment, which were rectified. The doctor reassured me throughout the symptoms I experienced and they were always resolved. I continued to see him until I was around 15 years old, when I was placed under the care of a GP. Unfortunately, the good care I’d received in my childhood didn’t continue under the GP and this resulted in a huge decline in the control of my CHT. I began feeling very unpleasant physical, psychological and emotional symptoms in my final year of school, which wiped me out and meant I withdrew from social interaction and stopped me progressing academically. These symptoms included severe headaches, lethargy and anxiety. I also stopped playing football (my passion), and loss interest in life. I ultimately failed my GCSEs and left school with no qualifications. The GP, however, completely and utterly failed to recognise that my now, uncontrolled condition, was the cause. My symptoms worsened as I turned 16. I was lethargic, had a short temper, headaches, bowel issues, dizziness and I was very anxious, apathetic and depressed. I couldn’t hold down a job and my self-esteem hit rock bottom. By Christmas 2009, at the age of 17, I was very poorly. Instead of the GP performing a thyroid blood test, I was given antidepressants, sent on my way and the symptoms I had been experiencing for such a long time progressed further. The antidepressants changed my personality and my behaviour became reckless and self-destructive. I’d do anything to make myself feel better and began to self-medicate in an effort to forget my symptoms or the feelings I had. This continued for two to three years. I requested a change of GP and this proved to be pivotal. As soon as I told the new GP of my symptoms and the problems I’d been having, a TSH test was conducted - my T4 was nearly undetectable and my TSH had reached a value of 100. My dose was increased but the problems continued. My hair then became very patchy and was falling out so I began to shave it off completely. My new GP was excellent and referred me urgently to an endocrinologist at Sheffield Hallamshire Hospital. He discovered that my levothyroxine wasn’t being absorbed and that it wasn’t merely the dose that was the problem. He asserted, in no uncertain terms, that I needed to take immediate action to avoid potentially serious long-term effects. My dose was reduced to 125 mcg whilst we agreed that I had to take my levothyroxine well away from any food, supplements or other medicines. A blood test was then conducted and my TSH was slightly raised. In response to this the doctor raised my levothyroxine to 175mg. We settled on this dosage and I’m delighted to say that I’ve been well ever since. The symptoms I was plagued with for three years are long gone and my TSH/T4 levels have been consistent for four years. This would never have been possible had I not complied with the specialist’s advice, whilst also educating myself so that I could understand the functions of the thyroid and levothyroxine. Now adequately treated at 19, I was able to retake my GCSEs and then my A Levels aged 20-22, achieving 3 A*s and progressing to university to study Physical Activity, Health & Sport which is my passion. I could also now work, and have worked for Sheffield United FC, Doncaster Rovers FC and Sheffield Wednesday (my team)! In my roles I have worked with over a thousand young people aged 15-17 on the National Citizen Service programme. Alongside my studies and work I have been able to do what I love and play sport again, even competing in boxing for four years! Boxing helped give me discipline and served as a great metaphor for overcoming the illness that I’d had. I also love running, swimming, walking, participating in most sports and fly-fishing! I live a very active life once again and can now make up for lost time.