After months of managing symptoms and rebuilding my health following a Graves’ disease relapse, I’m now moving toward the next stage of treatment: radioactive iodine therapy (RAI). In this post, I’ll share my personal experience, what led to this decision, and what I’ve learned so far about RAI as a treatment for hyperthyroidism caused by Graves’ disease. If you’re living with Graves’ or supporting someone who is, I hope my story helps shed light on what this part of the journey can look like.

My Diagnosis Story

I was first diagnosed with Graves’ disease in 2021. At the time, I thought my heart problems had returned: palpitations, shortness of breath, a rising resting heart rate. I was relieved, bordering on elated, when it turned out to be an overactive thyroid.

After further tests, I was diagnosed with Graves’ disease, the most common cause of hyperthyroidism. Graves’ is an autoimmune condition, meaning the immune system attacks the thyroid gland. It can go into remission, but it’s a chronic illness – it doesn’t go away completely.

I was fortunate to experience 18 months of remission, but in late 2023, I relapsed.

Relapse and Recovery

Autoimmune conditions often flare in response to stress, and that’s exactly what happened. Unlike my first episode, which progressed slowly, this time I became severely unwell in a matter of days. Because I knew the signs, I managed the situation at home with some leftover Carbimazole (the standard treatment for hyperthyroidism) until I could see my GP.

The GP restarted my Carbimazole and prescribed beta blockers for my heart symptoms, which included atrial fibrillation. But there was a major hurdle: no endocrinologist referral, as they weren’t accepting new ones at the time.

Six Months to See a Specialist

It took six months and a complaint to PALS (Patient Advice and Liaison Service) to finally get an endocrinologist appointment. In the meantime, I monitored my own blood results and adjusted my medication accordingly – a decision I wouldn’t normally advocate. As I have previously written about, my GP doesn’t seem to have a great amount of knowledge on treating Graves’ disease and I have been through the process before. I also have a background as a nurse and a midwife.

Still, I wouldn’t recommend this approach for others. It highlights how fragmented care can be, especially when test results are reviewed by someone unfamiliar with your specific history. A “normal” lab result doesn’t always mean “no action required” – sometimes it means the medication should be reduced. Miss that, and the thyroid can move from overactive to underactive.

Exploring Treatment Options

When I finally saw the endocrinologist, he asked, “Do you want a permanent solution?”

I didn’t hesitate: “Yes, I do”.

There are three main treatment paths for Graves’ disease:

1. Long-Term Low-Dose Medication

Some patients opt to stay on a small dose of Carbimazole indefinitely. It avoids more invasive treatments, but it also means staying under specialist care. Many endocrinologists are hesitant to support this long-term, partly due to NHS resource constraints.

2. Radioactive Iodine Therapy (RAI)

Radioactive Iodine therapy (RAI) involves swallowing a radioactive capsule that destroys all or part of the thyroid gland. It’s a targeted treatment that usually leads to hypothyroidism (an underactive thyroid), which is managed with daily thyroxine. The downside is that you need to isolate for several days after treatment because the radiation can be harmful to others, including pets. I’m not sure how that will go down with my dog.

3. Thyroidectomy

Surgical removal of the thyroid, often preferred if thyroid eye disease is present or if RAI isn’t suitable.

Why I Chose RAI

There were a few key reasons why I decided on radioactive iodine therapy:

• Relapse risk: Even on a low dose of medication, relapse is still possible. I never want to experience that level of illness again.
• Heart health: My cardiologist describes my heart as “not completely normal,” so avoiding unnecessary stress on it is important.
• Liver concerns: I’ve been on Leflunomide for psoriatic arthritis for over 20 years. It’s effective but can affect liver function. So can Carbimazole. Since restarting it, some of my liver enzymes have been elevated, and my white blood cell count is slightly abnormal. Managing two immune-suppressing drugs long-term just isn’t viable.

And worryingly, none of these risks were flagged to me by a medical professional – I discovered them through my own research.

Where I’m At Now

Right now, I’m in a good place. My symptoms are under control. I’ve regained my strength and stamina. I’m waiting for a date for RAI therapy and looking forward to closing this chapter – while acknowledging that Graves’ disease will always be a part of my life.

I’ll continue to share updates as I go through treatment. If you’re living with Graves’ or supporting someone who is, know that you’re not alone—and that it’s okay to advocate for yourself, to ask questions, and to seek a solution that feels right for you.