In May 2012, I was diagnosed with hypothyroidism (also known as ‘under-active thyroid’).
Initially I didn’t to tell anyone because:
- I’m British. We don’t burden other people with our problems.
- It’s treatable. You’re told that you just need to replace the hormone you’re lacking by taking a pill every day. It might take a few months but once you’re on the right dose everything should be normal again.
- Who would be interested?
Well (b) is wrong. At best it’s only part of the story. Hypothyroidism is a condition. Illnesses and diseases are cured, conditions are managed and I’m finding that it’s a long, continuous process.
I can also answer (c) – it’s people in the same situation as me. Twelve months after diagnosis, and despite finally being on what I knew within myself to be the right dose (confirmed by blood tests), I was still feeling tired, rough and ill a lot of the time.
So you go online and look for answers. And what really helps is reading the experiences of people who are in the same position as you – discovering that you’re not alone in your symptoms and hearing from others as to what’s helped them.
Thank goodness for the internet! It’s vastly increased the ability for people to connect and learn from each other. There are people writing on forums and in blog posts, describing what they’re going through and how they’re feeling. There are also organisations such as ThyroidUK who have collected the experiences of others over the years into useful guidance.
The doctors seem to take notice of evidence from random controlled trials above what their patients are describing as symptoms. But I’m a great believer in the power of many voices. My experience may not mean much in itself. But if enough people are describing the same thing, then that becomes worthy of investigation.
So I will add my voice to the sum of online knowledge in the hope that it will help others. And one day an interested researcher may come along and analyse this freely available data, add to the evidence base and improve the treatment and outcomes for people with thyroid conditions.
If you want to help and you’re a UK citizen, please sign this petition:
Fund research into T3 and/or natural desiccated thyroid treatment for hypothyroidism