For Families and Carers : Thyroid

Where is the thyroid gland and what does it do?


The thyroid gland is in the front of your neck just below the Adam’s apple. The gland produces a number of different hormones; the main ones being thyroxine (T4) and triiodothyronine (T3). These hormones help the cells in the body work properly. They help to regulate the body’s energy levels and they play a part in physical and mental development.

What can go wrong with the thyroid gland?


• The thyroid gland can be underactive (hypothyroidism) which means not enough thyroxine is made to meet the body’s needs.

• The thyroid gland can be overactive (hyperthyroidism) which means more thyroxine is made than the body actually needs.

Are thyroid problems more common in people with Down’s syndrome and if yes, why?


Thyroid problems are more common in children and adults with Down’s syndrome than in the general population. People with Down’s syndrome usually tend to develop hypothyroidism but sometimes they can have hyperthyroidism although this is much less common.

Hypothyroidism can be present from birth but this does not happen very often. It is more likely that people with Down’s syndrome will develop hypothyroidism as they get older. This usually happens as a result of autoimmunity (the body’s defence system attacks itself, this is sometimes also called Hashimoto’s hypothyroidism) although there can be other causes.

What are the symptoms to look out for?


These are many and the balance of symptoms may be different from person to person if they have a thyroid problem. Here are some examples:

Hypothyroidism – Slowing down, dry hair, weight gain, slow pulse, constipation, abnormal periods, tiredness, rough skin, hair loss, mental deterioration, deafness, anaemia.

Hyperthyroidism – weight loss, increased appetite, changes in behaviour, tremors, diarrhoea , irritability, swelling of the thyroid gland, breathlessness, thinning hair, bulging eyes, palpitations.

There can, of course, be other reasons for these symptoms to occur other than because someone has a thyroid problem. If someone with Down’s syndrome is showing some of these symptoms; it’s always a good idea to get them checked out with their GP.

However, relying on being able to spot the symptoms that indicate that someone may be unwell isn’t enough. It’s sometimes more difficult to diagnose thyroid problems in people with Down’s syndrome than in the general population. This is why regular screening for people with Down’s syndrome is recommended.

Should people with Down’s syndrome be screened regularly for thyroid problems?


People with Down’s syndrome need regular screening blood tests throughout their lives. Babies born with Down’s syndrome should have a routine blood spot test in the first six weeks of life followed by a screening blood test when they reach their first birthday. For a screening blood test, blood will need to be taken from a vein. Children with Down’s syndrome should have a screening blood test at least every two years.

If the doctor thinks there are signs to indicate your child may have a thyroid problem they may want to carry out more regular checks. Some doctors prefer to take a blood sample from the vein every year or so.

It is possible to carry out limited thyroid testing using a few drops of finger prick blood instead of a larger amount from a vein. If this screening method is used it should be repeated every year. There is more information about thyroid function tests in our thyroid booklet .

We know that some children and adults with Down’s syndrome will find having a blood test difficult. We have put together some tips that may improve the experience of children and adults with Down’s syndrome when having a blood sample taken.  Take a look at our information about giving blood samples here.

Because we know that the chance of developing Hypothyroidism increases with age, we recommend adults with Down’s syndrome are screened for thyroid problems every year at their Annual Health Check. Further information about Annual Health Checks can be found here

How are Thyroid problems treated?


Hypothyroidism can be treated with thyroxine replacement medication; this is usually in tablet form. Hyperthyroidism can be treated with anti-thyroid medication to stop the over production of thyroid hormones. In some cases surgery to remove part of the gland or the use of radioactive iodine to reduce the gland’s functioning might be required.

Resources


DSA

Thyroid Disorder – A Guide For Parents can be downloaded free of charge here

Information for GPs about thyroid problems can be downloaded free of charge here

Other resources

An easy read leaflet about hypothyroidism can be downloaded free of charge here

An easy read leaflet about hyperthyroidism can be downloaded free of charge here