Grave’s Disease Relapse

So my thyroid has relapsed and become hyperactive again. Well, technically, it never stopped being hyperactive, it was just under control with low dose carbimazole. Unfortunately, something changed recently and the low dose carbimazole I was taking was no longer enough. Even though the odds of a relapse is quite high (about 30% to 70%; and 50% of patients relapsing within the first 1 to 4 years after stopping medication), I was hopeful that I wouldn’t be a statistic. Looks like the odds were not in my favour.

I was diagnosed about two years ago and was still under control with low dose carbimazole as of December 2025. I wasn’t allowed to stop medication completely because a blood test showed I was still positive for thyroid antibodies. Somewhere between that December 2025 and March 2026, my thyroid state changed. Unlike the first time, I noticed the signs although they were more subtle.

The first sign was probably the fact that I had an elbow injury that wasn’t resolving with treatment. We were doing all the right things that was helping it, but never quite resolving the problem. The last time my thyroid was problematic, I had a knee problem that kept troubling me. Still, I didn’t connect the dots at this point.

Hyperthyroidism can significantly affect the musculoskeletal system, causing joint problems and muscle weakness. The most common musculoskeletal symptom of hyperthyroidism is proximal muscle weakness (weakness in muscles closer to the body’s center, such as the shoulders, upper arms, thighs). Since weak muscles do not properly stabilise joints, this can lead to increased pressure and pain, particularly in the shoulders and hips.

What FMR noticed first was my hairloss. It was not so significant that it was triggering alarm bells so I ignored it. Next was the heat intolerance. Since it occured during a period when the weather had been particularly hot, I ignored it as well. Then there was the noticeable increase in resting heart rate. It was consistently elevated by about 10 beats over two weeks but I was also under a lot of stress and I hadn’t been sleeping too well so maybe that was it. After that was the skin rash – the kind that flared all over my body and didn’t go away even with antihistamines. Finally, there was the struggle to recover during workouts. When one workout sent my heart rate up over 200bpm, I knew with fairly high certainty that it was back. I went to get my blood work done, still hopeful I was wrong.

But I wasn’t.

Hyperthyroidism is not a difficult condition to live with, especially once it’s under control. Even so, I felt discouraged when the relapse was confirmed because the muscle weakness, the joint pain, and generalised fatigue really put me out. While the meds were bringing my hormones under control, there was a period of adjustment that made me feel like I wasn’t myself. The thought of having to build my strength and fitness back again was discouraging.

There are three ways to treat Graves Disease:

• Medication – carbimazole. The way I’ve been treated.
• Radioactive Iodine – RAI.
• Surgery – removal of the thyroid gland.

RAI and Surgery ensures there are no more relapses in the future but it also means being on replacement thyroid hormones for the rest of your life. Between the two options, RAI is the safer bet because surgery for anything always carries risks. Since we’re dealing with a structure in the neck where a lot of other important structures exist, there’s an additional layer of risk.

Regarding RAI, there are also issues. Since it needs the thyroid to pick up the radioactive iodine to be effective, the fact the I’ve been on long term carbimazole means the first round of treatment is likely to fail. Since it’s radiation, I’ll have to wait another three months to repeat treatment if it fails. So we’re back to a higher dose of carbimazole for treatment.

A Side Note on Biotin and Hyperthyroidism

When I saw the doctor, he asked if I was taking biotin supplements. I wasn’t, but I could easily have been on it because biotin is a common supplement taken for hair, skin and nails. Given the effect of hyperthyroidism on hair, it is not uncommon for patients to take biotin in attempt to resolve hair issues.

What’s wrong with taking biotin?

Although, Biotin (Vitamin B7) does not treat or cause hyperthyroidism, high-dose supplements can significantly interfere with thyroid laboratory tests, causing results to mimic an overactive thyroid. According to the American Thyroid Association and Health Sciences Authority (HSA), biotin causes false readings by inducing artificially high T3/T4 and low TSH levels. In patients who are being treated for thyroid conditions, this interference can lead to incorrect medication dosage adjustments.