Bilal Bham

On 17th November 2022, I had eye decompression surgery for my Thyroid Eye Disease (TED). Here is a snapshot of my journey.

In 2016, I had been ill several times with various viral infections, so I went to my physician for a blood test. Looking at my results, he said to pay attention to my thyroid-stimulating hormone (TSH) levels because they were slightly low.

I am big into living a healthy lifestyle, eating clean, and gymming 5 mornings a week. In the summer of 2017, I was feeling incredibly tired at the gym, my right eye movement was lagging behind my left, and I was very sensitive to sunlight. I went to my physician for another blood test, and it came back with my TSH levels being below the upper limit of normal. I was referred to an endocrinologist and eventually an oculoplastic surgeon. A blood test for TSH showed a further decrease, and an increase in T3 and T4 hormones, confirming that I had an overactive thyroid, i.e., hyperthyroidism, was diagnosed with Graves’s Disease, and many months later, TED. I was put on 20 mg of carbimazole which made an immediate difference to my energy levels in the gym; within a week, I was back to flying in the gym! Over the next 18 months, I had my dose halved to 10 mg, and then 5 mg, as my TSH levels were increasing and my T3 and T4 levels were decreasing, all the way back to normal levels.

I was offered a thyroidectomy, but I didn’t want a part of my body being removed, live with thyroid hormone replacement therapy, and have a scar on my throat. I was also offered radiofrequency ablation, but I declined the offer.

At this point in 2019, my right eyelid was severely retracted, and my right eyeball was protruding noticeably. I was having problems blinking with a grainy feeling in my eye, problems with sleeping because my right eyelid wasn’t shutting properly, and waking up with red marks on my eye from nightly abrasions. I was offered orbital (eye) decompression surgery. Towards the end of 2019, I was given putative dates for surgery, but then covid 19 happened, and all elective surgeries in the NHS were put on hold.

On Thursday 17th November 2022, I finally underwent eye decompression surgery. My 4-hour surgery, which turned out to be major (I avoided reading about it beforehand because I trusted my surgeon and didn’t want to chicken out!), helped improve both the look and feel of my right eye and its closing during blinking and sleeping.

However, now, in July 2025, I am still recovering from some of the after-effects of such an invasive surgery, the main symptom being numbness around my right temple. Unfortunately, the protrusion of my right eye, albeit less than previous, returned only 8 months after surgery in the summer of 2023. My blood tests showed no significant decreases in my TSH levels or increases in my T3 and T4 levels, but I did have slightly more restricted movements in my right eye, and my diplopia (double vision) when looking to my extreme left, worsened. Although everything is now stable, you can see from the photo on the right that I just took for this article, my right eye is still larger than the left.

There is some fantastic research being performed by pharma and biotech companies with one product on the market in the US and more to come. Still, unfortunately, we didn’t and don’t have anything yet available in the UK, hence why surgery was my only option. I hope that some of these products, following rigorous testing, and successful clinical trials, are granted marketing approval in the UK soon. This would mean surgeons performing fewer such surgeries so they can focus on other patients, and people like me would not have the physical and mental burden of enduring such invasive surgeries with extended recovery periods to enjoy an improved quality of life.

A special thanks to the NHS for taking such good care of me 🙂

Bilal Bham is a registered Diverse Supplier helping biotech, pharma, and medical devices companies bring their products to market and patients through regulatory submissions and medical communications. The full article can be found here.

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If you would like to connect with other TED warriors who are going through similar experiences, our Facebook forum Thyroid Eye Disease Support UK now has more than 2000 members and you are welcome to join us.

There will be an online TED patient information event on 5 September 2025. Please visit The British Thyroid Foundation for more information.