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Case Studies - Childhood Thyroid Disorders

sharing storyWe are collecting case studies from people who have become well through taking thyroid medication, and from people who are still suffering symptoms of thyroid disease despite taking thyroid medication.

If you would like us to use your story as a case study, you can submit it to us online here

Sarah's Story

I found out I had hypothyroidism when I was 14 years old.  My mum started to notice that I was getting very tired, had severe mood swings, was gaining a lot of weight, had really bad greasy hair and was sleeping quite a lot.  At first, we put it down to school and the stress of work I was doing.

When the doctor told us, we weren’t sure at all what it was and had never heard of it.  I started off on 25mcg of thyroxine and was checked every few months to get my levels right and was sent to the hospital to see a specialist who could explain it better to us.

We met with the specialist, who explained to us that my thyroid gland had been attacked by my antibodies when I contracted jaundice at age 11 years through an accident which occurred at school.  He explained what the tablets were and what they were doing for me and it all came clear to us.

Once I understood I got into a routine of taking my tablets regularly and if I didn’t, I soon knew as I felt awful and tired.  The only downside I have had is that I am struggling to lose weight.

I am now 21 years old and I still take 150mcg levothyroxine a day.  Apart from the weight loss problems I have never looked back!

27/01/2012

Rose's Story

I was about 4 or 5 years old when my symptoms appeared and going to primary school, where there was a slight incline to walk up in order to get to the car park.  I could not manage this without getting out of breath.  My mum took me to a doctor who prescribed 2 asthma pumps (which incidentally I never used).

I began to notice my younger sister was getting to be the same height as me. This is not unusual but as she grew, I did not.  I did not grow in height for about 2 years but gained weight, not to the point of being obese or very overweight, but fairly chunky.  I did look in proportion for my size.

I was always quite tired and exhausted.  My mum thought my hormones may have something to do with this as I had had a 'show' for my first period.  We had been to the doctors several times and he had fobbed us off just by looking at me, not properly examining me at all, saying I was perfectly healthy and my mum should not worry.  The back of my neck and between my shoulder blades had become covered with a fine layer of hair.

At this point, I was now 10 or 11. My mum changed our doctors’ surgery as she wanted answers.  The crunch came when Christmas 2003 arrived and I just sat in a world of my own. My voice was husky and barely audible. I loved Christmas and can remember most of them but not this one.  My mum and dad started researching information on the computer and began to realise I may have a thyroid condition.

We went to see the doctor who asked what the symptoms were and my mum told him what we were researching and he took one look and said it was a possibility.  We were relieved that finally someone was listening and not just fobbing us off as hypochondriacs!  

A full blood test was taken. The results came and the doctors, 2 of them, came in to the consulting room at the surgery and told us that my thyroid gland had indeed been underactive but because of the wait, 5 years to get it diagnosed, it had completely collapsed, leaving me with no energy levels at all. The doctor also said that another 6 months and I would not be here at all.

Once I had begun to take medication, levothyroxine, after a few weeks things began to change for me.  Suddenly I became skinny again and my neck looked normal.

I still have circulation problems. My hair on my back all but disappeared. My eyesight, which had become steadily worse, began to stabilise slightly.

Possible ending….
I want other parents to be aware that this can happen to their children.

14/05/2010

 

My daughter was diagnosed with CFS/ME in 2002 following an initial viral illness in 2000.

She has been treated with various programmes, including CBT and graded exercise, but continues to be debilitated by her illness. Her symptoms are similar to those of hypothyroidism.

I have been battling with the paediatricians to try and get a referral to an endocrinologist, as there is a family history of hypothyroidism (her father).

Over the past 4 years her TSH has been gradually creeping up from 3.6 in 2006 to 4.8 in March this year.  Today, I have finally managed to persuade the Consultant to refer her.  She had bloods taken today and we are waiting for the results.  I fully expect her TSH levels to be above the magic number 5.0!

My daughter is now nearly 17 years old and has been ill for 11 years.  She has lost out on her childhood and teenage years.  This is an appalling thing for a child to put up with.

17/08/2011

Rachel's Story

My son was diagnosed at 12 days old with congenital hypothyroidism dyshormonogenesis. His thyroid gland does not work at all. He is now 19 months old and is responding well to thyroxine medication.

We found the whole experience as a family very upsetting to have such a
diagnosis since we knew nothing at all about the condition but thanks to the medical team involved including a fantastic consultant (who has now retired unfortunately), we are now experts in it! We found the scans that our son had to have at first very upsetting but things settled down in time and the worst part now is the regular blood tests.

Would be happy to talk to other families going through similar situations with children or be interested in any support groups for parents.

 (Contact us here to ask for Rachel’s contact details)

July 2011