What were your symptoms?


Before all this started I was at my physical peak. I was regularly lifting weights, I’d shed a load of weight, and I was casually running 10k every weekend - I was feeling on top of the world! Then things started to go downhill. I was finding it difficult to sleep, my 10k runs turned into 2k runs, and the weight kept falling off - I was constantly tired and sweating all the time. To make things worse, the brain fog crept in, making it hard to focus on my work as a computer programmer. Even my interactions with people changed; I didn't quite feel like myself, something just felt 'off.'


However, the toughest battle was with anxiety. It was like my body had a perpetual 'on' switch. At my lowest point, I'd wake up from my sleep having panic attacks, waking up with a racing heart and that primal 'fight or flight' response. It felt like being trapped in a room with a tiger after three sleepless nights.


How was your condition picked up on and diagnosed?


The most frustrating part of this journey was not knowing what was wrong with me. At first, I tried to dismiss the symptoms as just 'having a bad day...week, or month,' but as the disease progressed, it became impossible to ignore.


Given that Graves' disease is less common in men, the doctors seemed a bit perplexed. They initially chalked up my symptoms to anxiety. My GP prescribed me sertraline, an anti-anxiety medication, for months before we finally did a blood test. Unfortunately, it only made things harder because nothing improved – in fact, they got much worse.


After a while my symptoms were so bad that I collapsed in the kitchen, my pulse racing at 120bpm. The GP finally did a blood test. The results confirmed an undetectable TSH level, and I was promptly referred to an endocrinologist. Looking back, I wish I had been more assertive, but it's challenging to advocate for yourself when you're feeling unwell.


Did you know much about thyroid disorders before/at diagnosis?


I knew what a thyroid was, but I didn't truly grasp its function and significance. After my diagnosis, I dove headfirst into research to understand its role in our bodies better.


What treatment have you undergone and how do you feel now?


After three years of fluctuating thyroid levels and using carbimazole, I experienced a brief period of 'remission.' Unfortunately, it was short-lived, and I found myself back on medication. Finally, after years of battling fluctuating thyroid levels, I decided it was time for more definitive action.


Seven months ago, I underwent Radioactive Iodine (RAI) treatment. My body responded rapidly, but not without its challenges. Within six weeks, I went extremely hypothyroid with a TSH level of 80. It wasn't a walk in the park. I felt lethargic, sluggish, and depressed for a while.


Following that, I was immediately put on levothyroxine, starting at 25 mcg and gradually increasing to 150 mcg over seven months. It's been a rollercoaster, but I'm optimistic that I'll eventually find the right dosage and continue living a healthy life. While things are still a bit wobbly I’m much better than I was. There's been a bit of weight gain, but I know that I'll be able to lose it again when I'm back to my usual self.


What part of your diagnosis and treatment have you found especially difficult?


Waiting six weeks between each blood test has been particularly challenging. It takes time for medication adjustments to show their effects, so often, it's a waiting game, hoping for improvements. Additionally, the fatigue sometimes stops me from going to the gym or enjoying a day out at times.


Was there anything that particularly helped you understand more about your condition or to feel better supported?


Simply talking to people has been a tremendous source of comfort. It's astonishing how many individuals have faced similar autoimmune diseases or illnesses and can share their own experiences.


Creating an action plan has been instrumental too. I maintain a detailed record of my thyroid levels, take my medication consistently, and stay on top of hospital appointments and blood tests. I was also candid with my employer about my condition, and they were incredibly understanding. Taking ownership of the disease rather than letting it control my life has been empowering.


Is there anything you would like to say to others who may be on a similar journey?


My top piece of advice is this: You are unwell. Your body is unwell. It's essential to understand that your mental and physical well-being will have different benchmarks now, and it's okay to not feel okay. You're not dying, you're not going crazy – you have a legitimate reason to feel this way, and it's tough. Be kind to yourself and look forward to your recovery. It does get better.

More information

Living with hyperthyroidism 

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