It’s five months since I suffered a relapse of Graves’ Disease. This autoimmune condition primarily affects women and mainly targets the thyroid gland, bombarding it with antibodies that cause it to become overactive.

When the thyroid is overactive, it triggers muscle breakdown, leading to a loss of strength. It speeds up digestion, causing weight loss—but not in a good way. It also affects the brain, leading to depression and brain fog. Ultimately, the acceleration of all bodily systems results in extreme fatigue.

When I was first diagnosed with an overactive thyroid in 2021, I felt elated. I had convinced myself that my symptoms were signs that my mechanical aortic heart valve was failing, so finding out it was “only” my thyroid was a relief. Elation is not an emotion I’ve experienced in the past five months. Graves’ Disease does its worst in a matter of weeks, but recovery takes months.

How I’m Doing

The first sign of relapse was a loss of strength.  I regularly lift heavy weights in the gym, so I noticed immediately. For others, it might be something subtler—struggling with everyday tasks. Since Graves’ Disease is most common in women aged 30–50, a group often responsible for caregiving, it might show up as difficulty picking up a child or helping an elderly relative. Everyday tasks such as carrying shopping or housework become more difficult. Even getting out of a chair may be more challenging. Strength is essential for daily life.

I went from deadlifting over 100kg to barely managing 60kg. I was devastated. The first time around, I was just grateful to be recovering and moving in the right direction. This time, I’m just bored with the whole process. But I persist. Last week, I managed a 115kg deadlift. Thankfully, muscle memory is real. Even though it feels like starting from scratch, the neural pathways built over years of training help regain proficiency faster.

My aerobic fitness is taking longer to recover. My VO2 max dropped from 31+ to 26, though I’m now back at 30. However, I’ve had to go back on beta blockers due to palpitations and a high heart rate variability. I don’t know whether this is due to Graves’ Disease or personal stress, but beta blockers make it difficult to train at the intensity needed to improve endurance. It feels as if there is a brake on. My latest 5K time was 46:34. Not great. But I persevere.

I’ve also put on weight. An overactive thyroid speeds up metabolism, leading to weight loss, while at the same time altering brain chemistry so you crave carbohydrates. Before treatment, I could eat as if it were Christmas Day, every day, and still lose weight. Then treatment begins—the metabolism slows, but the carb cravings remain. The scales start moving in the opposite direction. Fortunately, most of my weight gain is muscle, but I’m also carrying some excess fat that needs to go.

Brain Fog and Depression

My cognition is back to full strength, but I’m still a little depressed. I suspect that has more to do with external factors than Graves’ Disease. I can’t blame everything on my thyroid.

Side effects of the medication 

As well as weight gain the other unpleasant side effect of Carbimazole that I’m experiencing is the inability to taste food. Even water tastes odd. But at the same time my tongue is super sensitive to hot spices. It is really weird. I experienced a loss of taste the last time I was on Carbimazole but not this bad. Just as well I’m not a food critic. 

The Challenge of Getting the Right Treatment

I thought I was being efficient by having my thyroid and liver function (I’m on medication for arthritis that can damage the liver) blood tests done at the same time—saving both my time and NHS resources. One appointment instead of two. That backfired. A few days later, I received a vague message: “The results of your recent test have come back to the surgery, and the doctor has requested that you have a repeat blood test in six months.”

Which test? Both need repeating every two months. I suspect GPs look at results in isolation rather than cross-referencing with patient history. My thyroid levels may be back in range, but does that mean I need to adjust my medication? A week later, I’m still none the wiser.

I wasn’t too worried as I had a telephone appointment booked for 6:20 pm a couple of days later only for the GP to call at 5:00 pm when I couldn’t take the call. Appointment lost.

I am also having difficulty getting referred to an endocrinologist as the hospital where I was previously treated is no longer taking referrals. I’ve now contacted PALS to see if they can intervene.

When being ill is a full time job 

Sometimes, it feels like my whole life revolves around managing my health. I’m fortunate to have the time to focus on recovery, and I actually enjoy much of what it takes to regain my fitness. I love going to the gym—and although I’m not so happy being the slowest runner, at least I’m out in the fresh air. For my mental well-being, I read, write, and paint.

And yet, the impact of this disease has left me feeling diminished. And possibly my loss of self worth has contributed to recent events. If you don’t value yourself the chances are nobody else will.

A friend with multiple autoimmune conditions recently posted: I am more than my  health conditions. A timely truth. It’s time to rise again.