My two-year-old son’s struggle with hypothyroidism

This little boy struggled for two years with obvious signs and symptoms before finally receiving a diagnosis of hypothyroidism.

Written by Sally White

My son was born under a super moon on September 11th. The midwife thought he was going to be born in his sac – my waters broke at the last minute and with spectacular force. This dramatic arrival was the first sign that Alex was going to be something special.

The next sign came before we’d even taken him home. Under the British system, the NHS test your newborn’s hearing before you can be discharged. This was the first of many tests my child will fail and the first sign of worry.

By the age of three months, Alex had been side-swiped by a series of horrendous colds. We kept going back for more hearing tests but he never passed them: he was always blocked up with snot.

Alex’s first year of life is a blur of snoring, snot, chills, colds, feeding problems, and a nagging worry that he couldn’t pass the darn hearing test.

By fifteen months, Alex had been fitted with hearing aids. It was like the batteries got put in him: his face lit up when he heard my voice for the first time.

As time went on, comments were made: ‘He’s very passive, isn’t he?’, or ‘gosh, he’s tiny’ or ‘my child looks such a brute next to him’. People would suggest disorders, make unhelpful comparisons, look at him with their head tilted on one side. I wanted to bash their heads in. I’m his MOTHER. I KNOW something’s not right. I’m DEALING with it.

And I was. Trying to. Trying to navigate the labyrinth of the over-worked, under-invested NHS. I saw three different paediatricians who suggested adenoid problems, hyper-mobility, absorption problems, vitamin deficiency. Some blamed his deafness for his quiet, passive, still ways.

Eventually, at the age of two, Alex had his bloods taken to test his chromosomes. There was a strong suggestion that his wide-bridged nose may be a symptom of a *whisper it* genetic condition.

The blood tests took five months to come back. I woke every morning feeling sick. I tried to picture a future with an ill child. My husband and I didn’t talk about it: I wanted to, he didn’t see the point. The future was white-noise and worry.

Then, one day in November, I’m in the city about to meet a friend when a text comes through. It’s from my husband. It’s the all-clear from Alex’s tests. I fell in to the arms of my friend and wept. Wracking, dramatic tears. She just held me. Without any questions, she steered me to the nearest cafe. I started to laugh and cry and hiccup as I explained it to her.  A waitress appeared by our side: ‘I gather you’re celebrating, here’s a bottle of prosecco on the house’. It was 9.30am. We drank the lot.

Ok. So a genetic/chromosome problem had been ruled out. Phew. But I still had a child who’d dropped off the bottom of the height/weight chart. He was in the 0.09 percentile for his age. He couldn’t sit up until 15 months. He wouldn’t walk until he was over two years old. I become house-bound. I didn’t want to see anyone. Even friends’ babies that much younger than mine were far more advanced than Alex. The only thing Alex excelled at was swimming but even then he would get so cold so quickly and his tummy muscles were so weak he struggled to swim for long.

By the time he was two and a half we were under the care of two paediatricians, a dietician because he wouldn’t gain weight, a psychologist because he wouldn’t eat, a speech therapist because he wouldn’t talk, a physiotherapist because he was so weak, an Ears, Nose, Throat consultant because he had glue ear (when the middle ear becomes filled with fluid), a dermatologist for his dry, scaly skin and audiology for his hearing aids. Looking back through my calendar I realise I had taken him to 32 appointments in six months.

I was still working as a secondary English teacher (I even got promoted to assistant head of year – a testament to the support my school gave me and the faith they had in me). My husband was busy working as a criminal barrister (the ones who wear funny wigs in courts for you American readers!). We also had a five year old who was starting school and no family nearby.

It was flipping exhausting.

Finally, I limped in to the paediatrician’s and said, loud and clear, something I should’ve said two years before: ‘My husband is six foot four, my older boy is whopping, I am no titch. There is no reason for Alex to be so small. Please test his hormones.’

The paediatrician took a long pause. I practically heard her eyes roll. I could hear her think ‘oh great here’s another neurotic middle class mother who’s been on the internet’. But what she said was: ‘Well, it’s worth a try’.

Two days later, we had a letter from endocrinology. Alex had a severely underactive thyroid and low zinc levels. He needs 5ml of Levothyroxine and a zinc tablet.

What?!

That simple?!

All this while I had stayed well away from the internet. When googling a child’s symptoms, the internet can take you to some dark dark places. But armed with this info, I went to the NHS website. Underactive thyroid: symptoms: constipation, slow growth, development delay, dry skin, muscle weakness. HOW HAD NO ONE TWIGGED?

We got the diagnosis in March. Since then, Alex has grown nine centimetres. Before, he was growing 1cm every six months. They’ve scanned his bones and he has the bone age of a 18month old which means his body was compensating and he will just carry on growing when others stop. He has only had one cold since (which was unimaginable before – I remember my husband and I dancing in the kitchen last year because Alex had had a whole three days without a cold. He had woken up snotty the next day). He has since also had grommets put in and can now hear (that was two weeks ago and he still wanders about in awe: ‘what dat noise, mummy?!’). He’s still very small but he is a changed boy.

What have I learnt? You have to fight. Ask for everything. Every test. Every referral. Every cream, pill, supplement, and second opinion. I’ve learnt that you have to stop apologizing: to your child for failing them, to your friends for how small your kid is, to your husband for crying on him. Stop. I’ve learnt that you have to say thank you: to your friends for listening to your darkest thoughts, to your parents for babysitting so you can have some couple time, to the NHS for doing what they can.

And I’ve also learnt a LOT about the thyroid and all the tinker mischief it can cause when it underperforms!

Come and find out more about me and the family and all the chaos, joy and nonsense that goes with parenting at my website wife of a wig wearer.