Daily Mail News Article about TED
As some of you are already aware, I’m working with TEDct to help raise awareness of Thyroid Eye Disease (“TED”) and the impact this has on people’s lives. My objective is to help raise awareness of TED and assist this incredible charity in funding more research, supporting TED patients, and providing access to more information, support, and earlier diagnoses. This can help others access early treatment, which could prevent the disease from fully developing and potentially avoiding the multiple major, complicated, and painful surgeries that can be associated with it.
I also want to emphasise the importance of taking accountability for your own health and the need to advocate for yourself. This has been crucial to me over the last 21 months.
The earlier a TED patient receives a diagnosis and treatment, the more likely they are to avoid the disease’s full progression and the associated complications.
You can also read many other TED patient’s stories and experiences directly on the TEDct webpage which is linked here: TEDct patient stories
My Story
From mid-2022 to mid-2023, I went through an overwhelming period of stress for various reasons. This caused me to lose weight, experience severe insomnia, and develop a variety of physical symptoms. I couldn’t remember the last time I woke up without feeling pain, mentally drained, and at times, completely lacking confidence.
My symptoms were physically and mentally debilitating—hair loss, weight loss, muscle fatigue, brain fog, severe exhaustion.
Despite knowing I was stressed, I had valid reasons for it and dismissed my symptoms thinking they would pass once my stress subsided. But then panic attacks started—severe ones, with no obvious triggers. Waking up in the middle of the night, shaking, sweating, feeling like I was going to die. Not once had I experienced anything like this before, and after several visits to the GP who suggested antidepressants (which I declined, since I didn’t feel depressed), I started to wonder if I was losing my mind. It was only after I presented my Apple Watch’s report of an increased resting heart rate (which had jumped from 59bpm to over 120bpm) to my GP they then diagnosed me with severe anxiety and prescribed beta blockers, which I reluctantly agreed to try. Having never suffered from anxiety before now, I didn’t really believe in the diagnosis I had been given.
Then came a devastating bereavement, and my physical symptoms worsened. My foot and leg became severely swollen, which led me to insist to the GP that something more serious was wrong. I was told that I was just experiencing depression, which didn’t feel right. Eventually a female GP listened to me and heard my concerns. She ran tests to rule out early menopause. That’s when I learned I had an extremely overactive thyroid, which needed immediate treatment.
The diagnosis felt like a relief; at least now I knew I wasn’t going crazy. I was started on thyroid medication, and within weeks, I felt better than I had in years—sleeping well, physically improving, and mentally clear. But this was just the beginning of an even bigger health challenge.
Medication Complications
After my thyroid levels were stabilised, I developed swelling and joint pain in my hands and feet. A rheumatologist diagnosed me with anti-thyroid drug-induced rheumatoid arthritis, adding arthritis to my already growing list of health issues. The medication for my Graves’ disease was necessary, but the side effects were devastating and I had no choice but to continue on with the medication.
Further Complications
In September 2023, I developed a small water blister in the white of my right eye. What seemed like a minor issue quickly became excruciating, leading to a diagnosis of Thyroid Eye Disease (TED) in both eyes. I had never heard of TED, and I was given very little information, told to wait to be referred to a TED clinic, but there weren’t any available locally.
The TED diagnosis sent me into a panic. I started researching it and was terrified to learn it could lead to blindness if left untreated. There was very little information available, and what I did find was conflicting. I called around, spoke to private health insurance providers, and navigated a maze of referrals before finally finding a specialist (an ophthalmologist who was also a practicing oculoplastic surgeon) who could take me on as a patient.
When I saw the oculoplastic surgeon in October 2023, it was confirmed that I had moderate-to-severe TED in both eyes with protrusion just in my right eye. The surgeon said she hoped I would keep my sight, which was the first real clue to how serious this disease could be.
TED is a self-limiting disease that can take anywhere from 18 months to 2 years to run its course and ‘burn out’. But some patients suffer for decades, and there’s no way to predict how long it might last or how bad it could get.
In my case, stress, coupled with the emotional trauma of a recent bereavement, triggered the TED. I had already progressed too far into the disease to benefit from early treatments, which could have slowed the disease’s development and prevented damage like eye bulging. My only option now was to wait until the disease “burned out,” and then assess the damage and repair it, which could take anywhere from several months to years.
The only treatment to help with the constant pain of TED is lubricant eye drops several time an hour throughout the day and taping my eye closed with lubricant eye gel at night to sleep.
A Year of Struggle
By January 2024, my right eye had protruded significantly, which made my appearance more noticeable and harder to accept. I needed to wear protective glasses when leaving the house, which led to some difficult moments in public as there is no market for protective glasses to keep the light, dust and wind out of the eyes, but leaving the house without the protection is impossible due to the pain that comes with TED.
I was advised by the hospital to try skiing goggles or onion goggles, so in the end my local optician helped me find some mountaineering glasses which I could at least try to pass off as a fashion statement and hopefully draw less attention to my facial disfigurement.
My confidence plummeted, and I stopped socialising as I struggled to cope with the new reality of living with TED. By now, I also had double vision due to muscle damage in my eye orbits, making it unsafe for me to drive or travel independently.
This, paired with some cruel comments from strangers about my appearance, especially with the need to wear protective glasses, made it difficult to cope emotionally.
Meanwhile, I continued to battle Graves’ disease and its treatment side effects, including worsening rheumatoid arthritis from the medication.
Thyroidectomy and Further Medication Complications
By March 2024, I had explored the possibility of a total thyroidectomy, which could reduce my risk of developing TED again by as much as 95%. After discussions with both my endocrinologist and oculoplastic surgeon, I made the decision to proceed. The surgery took place in May 2024, and while it was successful, it came with its own set of challenges.
In the days after the surgery, I developed an allergic reaction to the levothyroxine medication I had to take post-surgery, leading to agonizing skin reactions. I researched this issue through the TEDct group and online and discovered I was allergic to the tablet form of levothyroxine. I presented my research to my GP to evidence why I felt I was allergic to the levothyroxine in tablet form and I requested that I was prescribed with a liquid form of the medication that has no other ingredients added. There were multiple ingredients in the tablet form which also had also featured in the anti thyroid medications that I had also been allergic to prior to my thyroid being removed. I was told this was impossible and was offered antidepressants to help me manage the side effects of the agonising skin issue I had developed.
The reason I was unable to receive the medication I needed was because of the cost…the tablet form costs £1.50 for 30 days supply and the liquid form costs £204 for 20 days supply. I was happy to pay for this medication myself to test it to validate whether it would clear up my skin, but I was told I could not have the medication full stop because if it did work, I would then be costing the NHS a higher amount for the rest of my life due to this not being a temporary and curable condition. By this time, I was deliriously tired as I couldn’t sleep due to the pain and burning of my skin. I wanted to stop taking the levothyroxine full stop, but this wasn’t an option as I needed the medication to stay alive. I felt like I was trapped in a living nightmare (this was on top of dealing with TED). I went back to the doctors the next morning with more research printed out to evidence why I needed to at least try the liquid form of the medication and begged for just a trial on it, as I believed would help me (if it didn’t work, I would have been happy to go back to the tablets). I had also found an online supplier who could get me the medication in the liquid form from Thailand, which was my plan b (although I didn’t really want to go through this route as I knew it was risky to source medication outside of the NHS).
The GP reluctantly gave me a one time prescription and told me it was never going to work, and that I must then go back to the tablets , or go down my plan b of sourcing the medication myself outside of the UK NHS (his words were “it’s your body, so your choice as to what you think you need to do for your health”). Within 24 hours of trying the new medication, my skin completely cleared up which provided me with huge relief.
In the meantime, I had started setting up appointments to access the medication privately, which I would have been able to do, but it would have taken a few weeks to set up, as I needed to go back through an endocrinologist privately, pay for all the baseline tests and then wait for the results before they could prescribe. The private route would cost approximately £2,000 a month initially, due to all the tests I’d also need, and longer term I could then bring down the costs.
I could afford this whilst I was working, but I needed to plan how to continue to fund this once we retired, so we started exploring other possibilities such as downsizing the house or moving abroad where we could access the medication at a more reasonable cost to sustain the cost of the medication long term.
Eventually, I managed to see the GP who had helped me get my thyroid diagnosis in the first place and after she saw my notes and photos of my skin, she immediately wrote me a repeat prescription for the liquid levothyroxine. She also reassured me that I did have the right to be prescribed with the medication I needed and that I didn’t need to fund this privately.
Ongoing Journey and Surgeries
As my recovery from the thyroidectomy continued, my double vision worsened, and I had to adjust to losing even more of my independence.
By September 2024, I finally received the news that my TED was moving into the inactive phase meaning that we could then proceed with corrective surgery to repair the damage to my right eye.
My first eye surgery took place in January 2025, involving an orbital decompression to give my eye more space, along with de-bulking the eye area to improve symmetry. The orbital decompression involved drilling and shaving 4 millimetres of bone from my eye orbit, and removing 3 of the bony walls surrounding my eye.
Despite the initial relief, my recovery was tough, and I faced new challenges, including numbness on one side of my face and loss of feeling temperatures inside my mouth due to my facial nerves being exposed during the surgery.
In March 2025, I underwent my first eyelid surgery to address the eyelid retraction (damage to my eyelid muscles) caused by TED. While the surgery was successful, I still face challenges with eye closure and symmetry, meaning more surgeries will need to take place to enable me to close my eye and eventually I hope to stop needing the constant eye drops, gels and having to tape my eye closed at nighttime.
Gratitude and Advocacy
Despite how dark, scary, and sometimes depressing this period has been for me, it has also helped me grow as a person. I’ve learned how to ask for help, and I’ve been reminded of how very lucky I am to have the most incredible friends, family and colleagues (plus an amazing employer).
As highlighted in this article, TED patients are 3 times more likely to commit suicide than non TED patients, and many TED patients are also batting Graves disease alongside TED, which is also a very debilitating and difficult disease to manage.
As it stands today, the NHS doesn’t offer TED patients mental health support to help manage the psychological impact of this disease, which for me has been a lot more challenging than the physical pain and impact.
I encourage you all to please do whatever you can to support this charity, whether it’s sharing this post and information, or your own story if you are also a TED patient. Or if you would like to get involved in fundraising, please fundraise in any way that you’re able to (it could be a sponsored walk/sporting event, a bake sale, a local raffle, a Facebook birthday fundraiser, anything of your choice) and have donations directed to this crowdfunding programme.
I am going wing walking in September (yes I’m being strapped to the outside of an aeroplane!) and I would like to dedicate this unique challenge to help raise awareness and funds for TEDct. If you would like to support myself and other TED patients on our journey, please do donate to this incredible cause.
They say a picture says a thousand words, here are some photos of my journey from the start through to today.
Photos added in date order of my journey from before having TED to now.
So far I’ve had 3 surgeries:
May 10th 2024 - Total Thyroidectomy January 18th 2025 - Orbital Decompression March 29th 2025 - Eyelid Lowering Surgery
