#15 Hashi & Me: meet Vera

Hashi & Me is a series of stories for people with Hashimoto’s told by people with Hashimoto’s and other thyroid problems. In each piece, one of us will share our experience with Hashimoto’s, our personal findings and tips. We believe one person’s experience can be useful for others, especially to newly diagnosed people.

This week meet Vera, the founder of Hashimoto Netherlands. She coaches Hashimoto’s patients in living well and offers an online program ‘Happy with Hashimoto’ (currently only available in Dutch).

How and when did you discover you had Hashimoto’s? Tell us your story.

My life with Hashimoto probably started around 2000, when I was in my early twenties. I experienced many vague symptoms—like fatigue, brain fog, hair loss (Alopecia) and unexplained mood swings.

As an event manager I was used to working long hours. I didn’t pay any attention to good nutrition or good quality sleep. The adrenaline of deadlines was addictive and my symptoms would pass as soon as I would take things a bit slower. Or so I thought.

In 2009 I was no longer able to ignore or rationalize my pains and symptoms. In a few months I had gained 25 kilos and I was too sick and tired to even lift my arms. It was only then that I finally got the diagnosis of ‘hypothyroid,’ and the doctors started me on thyroid medication. According to my doctor I would have to take these pills for the rest of my life and would have to get used to these vague symptoms because they were my new normal. And so I did.

But despite my new way of life in my ‘new normal,’ I kept crashing. My life was just a fraction of what it used to be. In 2015 I had enough, I thought there had to be a better way to live. My search for knowledge began—first on the Internet, then in books and finally I went back to school to get my education in autoimmunity, hormones, stress and nutrition. Finally I began to understand what was going on. I changed my food intake, my lifestyle and my beliefs on disease. Slowly and steadily I got better and got my life back.

What did you learn since? Do you have some tips or findings to share with other Hashimoto’s people?

In spite of what doctors are telling you, you don’t need to learn to live with all the symptoms of hypothyroidism. There are things you can do to get your energy back and live a full life. It will take some time and effort, but it’s worth it!

Start off by getting the right diagnosis. Always ask for the results of your blood tests. Get acquainted with the numbers. Which numbers make you feel best? The standard reference range may not work well for you.

Not all doctors know how to read these reference ranges. Mine did not; for five years I had a TSH of 0,02 and every time I felt bad, they would give me even more thyroid hormones, keeping me overdosed for a long time.

So, know your numbers. The right nutrition plan for you plays a big part in your recovery. As soon as I quit eating gluten, my brain started working again. That’s when I realised I had to rethink my food intake. Nowadays I am 100% gluten free and try to not to eat any dairy, soy or sugar. I also go easy on the caffeine and alcohol. Lots of fresh foods give me energy and make me feel alive. So I would advise: find out what makes you feel better.

Sleep is another great gift I got from this disease. Without plenty of quality sleep your body can’t recover, so sleep must become your priority and most favourite hobby. Everybody knows that too much stress is bad for you, but somehow it’s part of our routine. Busy schedules are totally normal and generally accepted, and this busyness and stress is what hinders our thyroid hormones in providing us with energy. Relaxation, self care and stress reduction should also be a priority.

What does your day with Hashimoto’s look like?

Everyday I wake up between 6:45AM and 7:15AM. Since I don’t use an alarm clock, the time varies.

I start the day with taking my meds and drinking a large glass of warm water. I wait at least one hour before I take my morning coffee and wait an additional 3 hours before I take my supplements. As I work from home, I’m quite flexible with my schedule. Whenever I can, I take a break and walk, go for a run or join a yoga class in town. I know I should work out with weights more, but I just don’t like it.

I eat healthy and drink plenty of water. I only eat when I am hungry and sometimes do a 24 hours fast just to give my digestive track a break. On these fasting days my mind is razor-sharp, which is a bonus. I’m happy to love my job. Every day I talk to people with Hashimoto’s and I’m very grateful I can make life easier for so many people. The downfall of doing what you love is that I sometimes work too much. I’m still learning. When I’m tired at the end of the day, I go to bed early or take a relaxing Epsom bath. I know the only reason I can live at my own pace is because of the fact that my boyfriend is very supportive and we don’t have kids. I’m very lucky.

What was the biggest struggle and biggest victory you experienced?

My biggest struggle was finding my balance and keeping my energy in check, my biggest victory was when I really started listening to my body.

As a go-getter it’s hard for me to stop, just relax and do nothing. I always feel the need to be productive—to be learning, building, doing, or be useful. But this attitude is what kept me ill for so long. My thyroid stepped on the break for me. Thankfully that has changed now. I’m more relaxed, enjoying life more, and my thyroid and immune system seem to relax with me.

What advice would you give to someone newly diagnosed to ease their first steps with Hashimoto’s?

Don’t get overwhelmed by all the information available on the Internet and don’t believe the guru’s promise of full remission with just one supplement or that program to follow.

What works for one might not work for you, and that’s okay. Take your time. Take small steps. And track what you are doing—BOOST Thyroid App is a perfect example for this.

Don’t lose yourself in working hard on getting better. Working hard on beating this disease might just be counterproductive, and make it worse. Slow down, be quiet and listen to your body; it needs love and attention. Don’t resent it, but make peace with your body and listen. It tells you what you need and what is working for you and what not. Cooperate with your disease and you will find your energy again.