(7 minute read)
Me: ‘What could have caused this?’
GP: ‘It’s autoimmune.’
No name. Not the best start.
Me: ‘So it’s not caused by anything else then?’
GP: ‘No, it’s autoimmune’.
The GP was telling me about Seren’s blood results right before I was due to give my lecture on Research Methods to my undergraduates. I didn’t have time to think and in my confusion, I wondered if maybe there wasn’t a name for what Seren had. Anyway, I needed to be in the mode of qualitative research methods talk. But I couldn’t help myself. As I prepared all the equipment to set up for my lecture I grabbed my phone out of my bag and typed into Google, ‘autoimmune underactive thyroid’.
Google: ‘Hashimoto’s Disease’; ‘Hashimoto’s disease – symptoms and causes’; Hashimoto’s thyroiditis: symptoms, causes and treatments’.
So it’s called Hashimoto’s then. More helpful than GP. I now have a name. I actually knew of the name and knew it was associated with the thyroid but just hadn’t remembered the name at that time. It’s in my family, I knew that much. The disease is named after the Japanese surgeon who discovered it in 1912: Hakaru Hashimoto (Lygina and Latyi, 2021). According to Volpė (1989), he had his own surgical clinic in his hometown of Igamachi and would visit patients using a rickshaw to get there. He performed surgery in people’s homes and wouldn’t charge his poorer patients.
I like him already.
I’m telling you this because we should all know more about these amazing scientists who discovered the diseases some of us suffer from. Way ahead of the development of science, if it were not for Dr Hakaru Hashimoto’s efforts, the study of autoimmune pathologies would be impossible. It was his work that not only identified thyroid disease but also demonstrated the ‘existence of autoimmune reactivity of the body as a whole’ (Lygina and Latyi, 2021: 20).
So why hadn’t the GP just told me the name? The GP kept explaining to me that Seren would be referred to the Endocrinologist and I could ask all my questions to the specialist.
Great, when will that be then? Next week?
The GP said that in the meantime, Seren would start on 50mg of Levothyroxine to bring down her TSH levels and kick start her thyroid into producing the necessary hormones.
I was really looking forward to seeing the Endocrinologist because Seren’s suffering was beginning to worsen. The symptoms began on her 10th birthday, the 8th January and it was now the middle of February. People were commenting that she looked yellow. Seren herself noticed it: ‘Mum do I look yellow to you?’
‘Ermmmmm. Well… maybe it’s the light?’
Of course, an underactive thyroid explained it since everything slows down, including the liver. All of that happened before she had her blood tests and I was getting scared. The dark circles around her eyes were now a prominent feature and she was thin. She was yellow and it was painfully clear that something wasn’t right.
But her digestive problems were the worst. The stomachaches after eating were agony and she sat there each evening banging her back with her thin arm trying to get up the trapped wind. She would howl for hours in discomfort and there was nothing we could do except sit there and watch. Betsy, my happy-go-lucky, constantly joking and up to mischief 7-year-old, started looking bewildered seeing Seren in such a mess. She kept asking ‘What’s wrong with Seren?’ And before we had any answers I had to reply with ‘I don’t know.’ I noticed that she couldn’t tolerate rice and the gluten free breads and pastas have rice flour or rice starch in them. Removing those did seem to help.
Once we got the blood results back, I quickly received the referral letter for the Endocrinologist. We would get to see the person who knows everything there is to know about thyroid problems. And the date for the appointment was………………………
Now that Seren was on the Levothyroxine, maybe it wouldn’t be so bad to wait because we thought things would be bound to improve once the medication kicked in. But Seren’s attendance at school was beginning to suffer and all I can say is thank goodness I work mostly at home. The days when I had to go in, she went to work with Chris where she sat all day in his office. Apart from anything else, Seren was so tired. Even after a few weeks of being on the Levothyroxine, we weren’t really seeing an improvement. We had to wait for the second lot of bloods to be done to see if her TSH levels were coming down and also to see if she had the peroxidase (TPO) antibodies that diagnose autoimmune Hashimoto’s. We also saw a dietician to see if we could do anything else to help Seren. She basically told me that I was doing all the right things but suggested that Seren needed to start eating gluten again for the upcoming celiac screening to be accurate. She also suggested Seren eat some Oreos and chocolate milk.
One of my loves in life is nutrition and although I’m not by any means a strict parent when it comes to treats, I just couldn’t see how packing Seren with sugar was a good thing right now. I had to say something. The dietician quickly defended the suggestion as a way of getting some fat into Seren but I asked why not avocado and nuts then?
Listen to me, what a know it all. But you know what I mean, it doesn’t seem right.
Eating gluten again was nothing short of an absolute nightmare for Seren. She lasted 10 days, lost four pounds and was constantly nauseas or in pain. She refused to carry on and of course, I didn’t blame her one bit. She was now beginning to look truly awful. Not yellow anymore but a ghastly grey colour. I was now constantly back and forth to the GP, speaking to a variety of them. There really wasn’t much they could do to help Seren. Her next lot of bloods showed that the Levothyroxine was working – her TSH levels had now come down to 71 mU/L but when you think they should be under 5 mU/L she still had a long way to go. The test also revealed that she had more than 600 ui/ML of peroxidase (TPO) antibodies, which one of the GPs explained was the indicator for autoimmune disease – that is, Hashimoto’s. The normal antibody range should be less than 34 iu/ML. The celiac screen was negative but of course we knew it didn’t mean anything because she hadn’t eaten it recently or on a regular basis for six weeks.
The next GP I spoke to recommended we increase Seren’s Levothyroxine to 75 mg to help bring down her TSH levels further. But here’s where things got really confusing. The GP said that her hypothyroidism didn’t necessarily mean Hashimoto’s and that it could be caused by a virus or indeed maybe another autoimmune disease.
Oh my god, what does that mean?
So what the heck are we dealing with here? The whole thing felt like it was becoming ridiculous now. Seren’s health appeared to be worsening, not improving and no one could tell me conclusively what was actually causing the hypothyroidism – was it Hashimoto’s or was it some other autoimmune disease? Or a virus that triggered it? Spectators were keen to blame Covid but she got Covid three days after her symptoms appeared and as I would later learn, her extremely high TSH levels were a good indicator that this problem had been going on for ‘years’.
This was the turning point that was to pave the way for change in our lives. If I really wanted to get to the bottom of this I needed to know what the diagnosis was. I was beginning to get really curious as to why gluten had such an effect on Seren. Why would there be such a reaction now and not before? What was the link to Hashimoto’s, if any? And why? Was it a clue to her thyroid problems? What about the rice too? Although I didn’t believe it was Covid that triggered it (because the timeline just didn’t fit), perhaps something else did? Whatever it was, I was about to put my research skills to use and find every single damn research article there was on this subject and pinpoint a health professional who really had some expertise on this. And it started with finding out what it was we were actually dealing with. Within a few days we drove two hours to see a private Paediatric Endocrinologist to get a diagnosis.
One thing was clear: if I wanted to help Seren then we would have to find our own way. No one was forthcoming in helping us to steer this ship. From now on I would take over and do it my way. More than two months had passed since Seren had been to gymnastics and I knew there was no possibility of that happening any time soon. I realised this was no quick fix. I had to be patient and accept that slowly really is the fastest way to get to where you want to be. It can be a sluggish process because we are forced by others and circumstances to go slowly but also, no big discoveries or achievements are ever made quickly. But I was prepared to do the work to begin unravelling how on earth our 10-year-old daughter could end up having her life so quickly and unpleasantly interrupted like this.
Lygina, E. A. and Latyi, V. V. (2021) ‘Life and Heritage of Hakaru Hashimoto’, Clinical and Experimental Thyroidology, 17(2): 20-23.
Volpe, R. (2009) ‘The Life of Dr. Hakaru Hashimoto’, Autoimmunity, 3(4): 243-45.