THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME The need for regular monitoring of Thyroid levels in people with Down syndrome

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME Where is my thyroid gland located? The thyroid gland is a butterfly-shaped gland that is situated in the front of the neck, below the Adam’s apple.

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME How is thyroid hormone generated? Brain & Pituitary gland The thyroid hormone is released in the body through a carefully regulated mechanism The signal (Thyroid stimulating hormone or TSH) for the gland to produce an inactive form of the hormone (T4) is received via the brain and pituitary gland. The thyroid gland uses iodine from food to produce the inactive hormone T4. T4 is then converted to the active thyroid hormone (T3) which enters the bloodstream and liver to regulate various tissues in the body. Brain Release of TSH Liver Heart Thyroid gland Muscle Iodine Release of inactive T4 Regulates various body organs T4 converted to T3 T3 Bloodstream T4 converted to T3 Liver

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME What does the thyroid hormone do in the body? BRAIN & DEVELOPMENT Thyroid gland EYES HEART BODY METABOLISM INTESTINES SKIN The thyroid hormone helps to regulate the functions of the following body parts:

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME What happens when too much or too little thyroid is produced in the body? Hypothyroidism Underactive thyroid gland Gland does not make enough thyroid hormone Detected by measuring TSH and free T4 levels High TSH Normal or low T4 T3 usually normal till very severe Hyperthyoidism Overactive thyroid gland Gland makes more thyroid hormone than the body needs Detected by measuring TSH and free T4 levels Low TSH High or normal T4 High or normal T3 To interpret thyroid values in certain situations, please see an ENDOCRINOLOGIST (hormone doctor) and do not self-assess Thyroid levels from a blood test.

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME What does too much or not enough thyroid hormone affect your child? Too little thyroid hormone Stunted growth of teeth & bones Delayed onset of puberty Dry skin Hair loss Slow heart rate Weight gain Digestive & feeding problems (e.g. constipation) Too much thyroid hormone Moody, emotional & prone to tears Increased appetite & weight loss Changes in behavior & school performance Diarrhea Trembling hands Muscle soreness Fatigue Bulging eyes

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME Why is hypothyroidism a concern in children with Down syndrome? Children with Down syndrome have a higher chance of being born with Hypothyroidism There is also an increased risk of developing Hypothyroidism with age Hypothyroidism is more common than Hyperthyroidism in people with DS Thyroid problems in Down’s syndrome are commonly caused by autoimmunity, occurring when the body starts attacking its own thyroid gland, causing it to work less effectively, and produces less thyroid hormone

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME Why is thyroid testing so important in children with Down syndrome? Normal thyroid levels are very important for normal growth and development of the body If hypothyroidism develops, growth and development will slow and halt Early diagnosis will allow for early treatment Typically treatment consists of thyroid hormone replacement in form of tablets Tablets will restore thyroid status and hence child will continue to grow normally

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME How frequently should my child’s thyroid levels be tested? At birth, and every 6 months thereafter until age of 4 After age of 4 years assess thyroid levels every 6 – 12 months Check for TSH, Free T4, thyroid antibodies (TPO) through a simple blood test Earlier monitoring is recommended if any symptoms of hypothyroidism are seen – constipation, less activity, hair loss, skin dryness Too much Correct levels Not enough

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME What if my doctor says thyroid levels normal but my child has symptoms that suggest a thyroid problem? This is a very common issue! Symptoms of thyroid dysfunction are not specific to low or high levels of the hormone Constipation, growth restriction, and difficulty walking are common in children with Down syndrome, even with NORMAL thyroid function This makes it difficult in some cases to diagnose a real thyroid problem. Regular screening for thyroid problems is thus very important for children with Down’s syndrome

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME What if thyroid levels are borderline, but my doctor says it’s normal for their age? TSH values change with age – they’re highest at birth, and decrease slowly over the first 10 years of life to adult levels At birth TSH can be up to 10 mIU/L (sometimes even 20-40) Up to age of 10 years, levels of 8-10 mIU/ml of TSH are considered “normal”

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME My child has “Borderline” TSH levels, what do I do? Your doctor will assess other parameters (T3, T4 and thyroid antibodies), and how TSH levels change over time Ideal to keep TSH between < 4 mIU/Ml in growing children Monitoring thyroid levels regularly even if your TSH levels appear normal is very important

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME What is thyroid replacement therapy? Thyroid replacement is given in the form of Thyroid tablets, which contain T4 The tablet is safe – the only problem that occurs is from improper dosage – over- or under-replacement Once on stable dose of thyroid tablet, you need to check TSH and free T4 levels once every 4-6 months

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME Can I prevent thyroid problems? To some extent yes… Avoid weight gain by regular physical exercise that is appropriate for your child Maintain good nutrition, especially foods rich in Vitamin D and Iodine Iodine is essential for the thyroid gland to generate the hormone, and includes Iodized salt, seafood, eggs, potatoes, bananas, beans Vitamin D deficiency has been linked to auto-immune thyroid problems, and sources include sunlight, dairy products, seafood, orange juice And also no… Hereditary or genetic factors play a strong role

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME Who should I talk to about thyroid-related concerns? Please consult your Pediatrician for your child’s routine thyroid assessment Note - Please also download and use the Down syndrome passport to keep track of your child’s thyroid levels and routine medical check-ups from birth to adulthood It is ideal to see an Endocrinologist (hormone doctor) once ever 1-2 years to monitor thyroid function

THYROID HORMONE MONITORING IN PEOPLE WITH DOWN SYNDROME Extra Information This content has been developed in collaboration with the Down Syndrome Federation of India (DSFI) The contents of this presentation have been adapted from Endocrinologist Dr. Jayashree Gopal’s presentation at the India International Down Syndrome conference held in 2017 Dr. Jayashree Gopal is a Senior Consultant Endocrinologist & Diabetologist, consulting at Apollo Hospitals & DiabEndoIndia, Chennai DSFI is a parent support group started by Dr. Surekha Ramachandran in order to help persons with Down syndrome and their families to come to terms with Down syndrome http://www.downsyndrome.in/about-dsfi.php Nayi Disha Resource Centre is an online information resource platform that supports families of persons with Intellectual and Developmental Disabilities (IDD). http://www.nayi-disha.org