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

2. 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.

3. 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

4. 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:

5. 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.

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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”

12. 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

13. 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

14. 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

15. 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

16. 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
Nayi Disha Resource Centre is an online information resource platform that supports families of persons with Intellectual and Developmental Disabilities (IDD).