Sand between my toes!

11 April 2010

Underactive Thyroid in Down Syndrome (Hypothyroidism)

Sherrie Hewson one of ITV's Loose Women confided in the Daily Mail about how devasted, terrified and completely exhausted she was and feared the worst after a history of heart problems in her family.  

After taking a blood test she was diagnosed with Hypothyroidism, a common illness found in 1 in 50 of women in the UK, and about 1 in a 1000 of men.

Percentage wise babies with DS have a higher chance of having an underactive thyroid and this may not be found out till later in life as it might not have been evident when the Guthrie test was given at birth (Guthrie test is the pin prick test on all babies at birth)
However, I recently had a call from a Mum who was very upset that her three year old had been asked to have a blood test, by traditional methods, ie from a vein, every year, even though it was negative at birth and also each time he had had subsequent tests?  When I told her that she could tell them not to take the test, even though it is recommended by the medical profession to do so on a yearly basis, she seemed surprised and slightly apprehensive at this suggestion.  But then whose son is he? Now I am all for taking advise from professionals and weighing it up with the pros and cons, but if you are unhappy about any treatment that your child with DS is getting.  Say so!  They are your children. The same goes for all invasive medical treatment.
SJ was not diagnosed with an underactive thryoid until she was thirteen, it was her teaching assistants that spotted it, saying she was falling asleep or very tired in some lessons.  I thought she might be trying to get out of lessons she didn't like, such as Maths, but she was tired in other lessons that she really liked, such as Geography and Science.  So we had a blood test and yes she did have the condition.  It took us about a year to eighteen months to get to the right dosage.  Combined with the start of her periods the result was that she began to put on a lot of weight.  

So we are off to the local beach where there is a long straight flat road to continue our riding a bike lessons, she is not particularly happy about this, but hey, life isn't perfect and I know that she will be thrilled when she can ride her bike.  Wish me luck!

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