Information Living with thyroid disorders Congenital hypothyroidism case study James was diagnosed with congenital hypothyroidism when he was a baby. His mother Clare talks about the experience: We thought our newborn son was perfect. Then the midwife told us the heel prick test had shown up a problem. It felt like the worst news in the world. Even the scan was traumatic: James was so tiny and watching the big machine being lowered down onto him was a shock. I kept asking myself ‘Why has this happened?’ but no one knew what had caused it. As new parents, the most important thing you need to be told is that it is controllable and your child is not going to die! James is now an energetic boy. He’s absolutely normal, excellent in sport and has loads of energy. He just takes his pills every day and doesn't give it a second thought. He’s fine as long as he is checked regularly. I’m trying to get him to recognise the signs so he can judge how he feels for himself. This is not to worry him but to help him to learn. Danielle was born with congenital hypothyroidism and is now a mother of a healthy little boy I was diagnosed with hypothyroidism when I was around 6 weeks old, at a time when testing at birth wasn't carried out. My parents were concerned that I wasn't active or growing quickly, and the GP suggested a test. As a baby I was given levothyroxine in liquid form, but I only remember later on, having two pills crushed and put in with cereal. I quite liked the little ritual and though I was aware of my condition, I didn't see it as an illness, and certainly didn't feel I was different to my friends. However, when on holiday, for example, I was frustrated when being made to get completely dry after swimming and before I could go and play, as the difficulty in keeping warm would make me shiver uncontrollably. On the whole, I had no fear of doctors, hospital or needles, and apart from a brief phase of getting almost hysterical, I was happy to go for blood tests - I still have an interest in medicine which I think started then. I certainly felt well-informed and was never worried by the idea of having hypothyroidism as it was always clearly explained that it is treated very simply with daily tablets. As a teenager I had phases of poor compliance, which were serious enough to affect my health. The resulting forgetfulness probably exacerbated the problem and although the doctors wanted to manage my hypothyroidism carefully during that time, in retrospect I don't feel I took the condition seriously. In my twenties I was still guilty of forgetting a dose here and there, although I never felt the symptoms of under-replacement particularly badly. On one occasion the GP remarked that he was very surprised to see a very lively and energetic person in front of him given the very low T4 and very high (20 to 50) TSH levels on the recent blood test. When we were trying to conceive, I discovered that it could take longer as a result of the condition, though I was pregnant within a year of trying, and I found it helpful to read about other women's experiences of having hypothyroidism and having children. Of all the things I could do for my baby's health, being diligent with taking thyroxine would be the most important and since I conceived, my attitude has been different as it's no longer just myself I'm responsible for. I was under consultant care throughout pregnancy and had frequent blood tests and extra growth scans, which thankfully showed that the baby was growing and developing normally. I gave birth to Joseph, a perfect little baby boy (7lb 13 oz). When it came to his heel prick test results I was confident that if he did have hypothyroidism, it would be fine and we would know how to make sure he was healthy. He isn't hypothyroid, and I've since found out that the form I have isn't thought to be hereditary. With good GP care and access to clear information about the condition, and how it affects pregnancy and the growing baby, starting a family has been the same adventure as anybody else's, and hypothyroidism hasn't caused us any worry, Joseph being successfully breastfed for six months and is a very healthy boy with no allergies or other issues, and is an exceptionally smiley and good-natured baby! We're very lucky.