What I learned living with Graves disease

In August 2018, my regular health checkup showed a spike in my thyroid activity for the first time.

I had started experiencing symptoms in May. At first, there were slight but noticeable changes to my eating habits and my appetite. I was eating larger and more unhealthy meals, and I was losing weight. But it was Ramadan at the time, and I was fasting, so it was hard to tell that anything was wrong. The first real symptom I definitely noticed was the shaking. I was shaking everywhere. The tremors in my legs were uncontrollable. I started to have some difficulty even standing in the shower for longer than a few minutes. My hands were shaking too.

I attributed all of it to a poor diet and a lack of exercise. I'd had started going to the gym for the first time earlier that year, but I'd stopped after a few months and slipped back into my old habits.

When the blood test showed later that my thyroid function was, in fact, abnormal, I went to see a physician. The abnormality was still nothing to worry about, the spike was not that high. The physician dismissed the issue and said it'd probably “go away on its own", but he wanted to repeat the blood test just in case. The test I'd done was a personal subscription with the health service Thriva. My doctor wanted to do an official one.

Three blood tests and several months later, my thyroid was getting more and more out of control, and so were my symptoms. I was becoming voracious. I was eating thousands upon thousands of calories a day—and losing weight! I'd also developed an appetite for juice and simple sugar that was unfamiliar to me. I was consuming a quart of juice each day. My bathroom habits also changed drastically. And the tremors and the shaking intensified.

But then a new symptom kicked in. My heart rate was steadily rising, and I wasn't paying attention. I started getting out of breath just moving around my apartment. After heading out of my building, I would need to rest on the bench first for a few minutes before crossing the street to the supermarket. It had gotten to the point where I couldn't move for five minutes at a time without sometimes feeling like my heart was about to give out.

At the time, I didn't have a fitness watch, and wasn't aware of what my heart rate was. All I knew was that I was constantly out of breath. I constantly felt like I was drowning. I started to experience anxiety I'd never experienced before in my life. An overwhelming sense of panic was accompanying me throughout the day. Before then, I had never dealt with anxiety on that level. I had my baggage, sure. But I was never an anxious person by nature. Now, I was crying myself to sleep almost every night and not understanding why. I'd have sudden visions of something horrible happening, or a family member dying.

I blamed myself for all of it. I was out of breath because I was eating too much, I was walking out of spin class 20 minutes in because I was in bad physical shape, I was having an emotional breakdown because I had neglected myself mentally and spiritually. It was my fault that I couldn't function.

September came, and I signed up for a fitness retreat for two weeks. It was a holistic camp where you'd get a plant-based diet of 1,000 calories, and exercise something like four hours a day. There were also stretching, yoga, and mindfulness classes, and cleansing rituals where you would get a chance to rid yourself of what's holding you back emotionally. It was expensive, but I was desperate. I wanted to go somewhere and come back a new person.

To this day, I have no idea how I managed to get through these two weeks on this illness. When I went, of course, I had no idea I had Graves disease. I just thought I was in bad shape, and that I needed to get in better shape. So I went there, and I dieted, and I exercised nonstop for two weeks, and when I couldn't manage to get through one of the exercise sessions, or when I would feel like I was about to pass out or throw up, I'd blame myself. Nevertheless, I pulled through. And I came back home simply in awe of the results I was seeing. By then, I was even more convinced that all I needed was the right diet and exercise plan. It was after that trip that I got my first Apple Watch, hoping to track my exercise.

But I came back home to London, and my same problems were there, waiting for me. As soon as I started eating my normal diet, my symptoms started getting worse and worse.

The doctor visits continued. The tests were repeated. But for some reason, I was never physically examined. The medical center I'm registered with employs "locum" or freelance doctors, so you get a different one every time. None of the doctors I saw thought to take a look at my thyroid. No one even took my pulse. No one thought to run an antibodies test to see if there was an underlying autoimmune problem. I was still told it'd go away on its own.

One day in December, I was watching TV when my Apple watch said that my heart rate was too high, and suggested I see a doctor.

The next day, I was supposed to be flying back home to Cairo for a visit. During the drive home from Cairo airport, my mom was having a hard time concentrating on what I was saying because I was so out of breath just talking. She took me to the doctor the next day, and I was diagnosed on the spot. I had Graves disease.

Graves is an autoimmune disease. It means my immune system makes antibodies against some of my thyroid gland cells, which causes the thyroid gland to grow, and to produce excessive amounts of thyroid hormone. Graves is a chronic disease. There are treatments that work to different extents on different people, but no known cure.

I was immediately put on beta blockers and thyroid medication. By then, my heart rate was 130bpm while sleeping. If I'd try to move, it would jump to 160bpm or higher. I was miserable.

I was put on a higher-than-usual dose of beta blockers and for a lot longer than the recommended period of time, and that meant I couldn't do any work. I had to take two months sick leave from my job.

I was back in London and now following up with a specialist, who was actually good, actually knew who I was and remembered my history, and actually took the time to physically examine me on each visit.

My weight shot up drastically. I gained over 20 pounds before I knew it. That much was expected. Frustrating, but expected.

Some of my other symptoms—the tremors, the constant panic, the extreme sensitivity to heat, they eventually disappeared. Other symptoms appeared. I was losing hair. A lot of hair. But what's more was that the texture of my hair was different. It became weirdly crunchy. Different strands of hair were now very different in thickness and in texture. Some strands started to lose color. I was experiencing as much hair breakage as hair loss.

It took me two full years to get off the thyroid medication. During those two years, I would relapse every time I would go on a lower dose. I'd have to up back my dose and start all over again. In December of 2020, I was able to maintain normal thyroid function for the first time without medication.

This is where I'm at right now: my thyroid is operating normally, but my thyroid antibodies are through the roof. It's been that way for almost an entire year now. It means that my immune system is exhausting itself producing a ton of antibodies against my thyroid, but so far my thyroid doesn't seem to be adversely affected by that.

I'm officially free from hyperactive thyroid. But that's as far as medical help could take me. I still have an autoimmune disorder, the disease that created my thyroid problem to begin with. And no one has been able to tell me with any certainty what caused that disease, or what I can do to treat it.

They also never told me about the symptoms I would continue to have even after my thyroid was back to normal.

I'm not a medical professional. All of this is simply my own personal experience. But here are some of the things I now know about my body and what it's going through.

Yes, the hair loss is because of Graves. And no, it won't go away just because my thyroid is back to normal. A lot of things won't automatically go back to normal.

When I first started to experience this hair loss, some doctors had shrugged it off as stress-induced. Others said that hair loss was not uncommon for Graves patients, and that I'd get my hair back once I got my thyroid in order. Others said it had nothing to do with Graves—I was simply going bald. According to them, I had genetic baldness, and it just happened to kick in at the same time I was struggling with Graves. They recommended minoxidil, which I would need to keep taking for life, and which would only result in me acquiring back some of my hair, along with a variety of unpleasant side effects.

I refused to accept that, and refused to be put on minoxidil. There was one doctor back then, a GP, who said something that really helped me: "If you have a thyroid issue, don't let anyone tell you they have a definitive diagnosis for your hair loss."

Over the course of this year, I started reading more about metabolism and inflammatory disorders, and I discovered that hair loss and dry hair are autoimmune symptoms that don't go away by fixing the more superficial issues, like thyroid issues.

Other changes to your body also remain. Fatigue. Inconsistent energy levels. Brain fog. Trouble concentrating. Extremely brittle nails. And a lot of anxiety. There were also other changes that no one really talks about, like noticeable changes to my voice.

I also believe that the stress and hormonal changes caused by Graves led another chronic illness I had, Polycystic Ovary Disease, to become active again.

An anti-inflammatory diet could be the cure.

Because I was in the habit of doing a blood test every six months, I already knew long ago that my inflammation markers were high, and that my levels of Omega-3 fatty acids were insufficient. Moreover, my Omega-6 markers were through the roof. While you're supposed to have roughly as much Omega-6 in your body as Omega-3, I had 34 times as much!

But I never prioritized fixing all of that until I started making the connection between this chronic state of inflammation and my Graves disease, my ovary disease, and my high levels of body fat.

Then I came across the book Why We Eat (Too Much) by Andrew Jenkinson, and everything started to make sense. After that, I started reading everything I could find on the subject.

The premise is simple. My metabolism is broken, my body is in a state of inflammation, and that's why my immune system is lashing out. If I fix my metabolism, I can fix my immune system.

Inflammation is caused by processed foods, refined grains, added sugars, and inflammatory fats. Inflammatory fats include Omega-6 polyunsaturated oils, such as sunflower oil or canola oil, and margarine. It also doesn't help that most of the meat we're consuming is also fed grains instead of their normal diet of grass. This makes the meat we consume much higher in Omega-6 than it would be in its natural state.

Most of the fish we consume is also raised in fish farms and fed a diet of grains instead of eating other fish.

An anti-inflammatory diet involves cutting out all inflammatory foods, and trying as much as possible to eat grass-fed meats and wild-caught fish. If you want to stick to an anti-inflammatory diet, you'll have to cook your own food most of the time, as it's pretty difficult to avoid inflammatory oils when eating out.

This discovery is probably the reason I did so well on that health retreat—I was consuming a diet of entirely unprocessed foods, with no grains or sugars. It's the only reason I can think of for why my disease took a backseat for those two weeks.

The second part of the equation for fixing your metabolism is intermittent fasting, or time-restricted eating. Eating fewer meals within a smaller window of time during the day manages your body's insulin levels, eventually allowing your metabolism to heal.

That's about it. I started taking Omega-3 supplements and making small and gradual changes to my diet. My Omega-3 levels are now significantly higher, and my Omega-6 significantly lower—my ratio is now 11:1 instead of 34:1. I can feel the drastic difference it has made to my energy levels and my concentration.

But I'm far from done. Getting off sugar and wheat is really, really hard. When I manage to do it for a few days at a time, I feel like a different person. It really is almost like an allergy. I'm allergic to these foods. They make me lethargic, foggy, and even sometimes downright depressed. I never realized the effect sugar had on my mood swings until I went without it.

I'm still at the beginning, but I have a lot of hope that this will work. And I'm willing to bet it will work for other types of autoimmune diseases. If you're out there with Graves, or Hashimotos, or Crohn's disease, or whatever else: don't despair. There's a science out there that's finally taking shape, science that's coming to help us.