#1 Hashi & Me: meet Eva from Berlin

Hashi & Me is a series of stories for people with Hashimoto’s told by people with Hashimoto’s. 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 the talented Eva, a journalist from Berlin.

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

My name is Eva and I work as a freelance journalist. I’m originally from Sweden but I’ve been living in Berlin for the past nine years.

About a year after I’d arrived in Berlin, I was working at a startup and I quickly advanced into a new role as a marketing manager. With no previous experience, I was feeling the pressure to step up to the task. At the same time, I was beginning to feel increasingly fatigued. I was gaining weight, though I was rarely hungry. My face was puffy. I’d be so exhausted after work, I just wanted to nap. The slightest perceived adversity would make me want to sit down on the floor and have a cry. My skin turned dry and yellow, my heels developing big cracks. My hair got brittle, my calves swelled up, joints ached. I started having problems with my wrists, so it was hard for me to use a computer mouse. My fingers went numb. I found it difficult to focus, with my brain in a perpetual fog. Often I would begin a sentence, then not remembering what I wanted to say. I felt stupid. My balance was deteriorating, so that I was afraid of falling off my office chair or falling while walking home from work. My periods were extremely heavy and I would bleed during sex, so I went to see the gynaecologist, who couldn’t find anything. I went to the orthopaedic specialist for my joint pain, same there. I complained to my GP about tiredness and other symptoms. No one connected the dots. And somehow even I didn’t realise that I was ill, though I constantly had the feeling that something was wrong.

No one connected the dots. And somehow even I didn’t realise that I was ill, though I constantly had the feeling that something was wrong.

Then, one day, my sister mentioned that her friend had been diagnosed with a thyroid underfunction. She thought my symptoms sounded similar. I immediately went to my GP, we did a bloodtest and voila. Hashimoto’s. My doctor put me on 50 mcg of levothyroxine. That was too little, so she raised it to 100. That totally backfired. Suddenly, I was in perpetual alert mode, my adrenaline rushing. I would experience heart palpitations and had trouble sleeping. I developed anxiety and social phobias. We lowered to 88 mcg and then step by step, using drops instead of tablets, raised the dosage. In spite of the medication, I fell into a depression which took me almost a year to get out of.

Seven years later, I’m on 100 mcg and I have my levels checked every six months or so. I’ve also had a few ultrasounds of my ever diminishing thyroid. I generally feel fine, but I do off and on have issues that may or may not be related to the thyroid — like fatigue, concentration issues, anxiety and mood swings. Last month, I went to an endocrinologist here in Berlin for the first time. He’s run a number of tests to make sure I don’t have other deficiencies or issues commonly related to Hashimoto’s and is now monitoring me over a longer time to see how I’m doing with my current treatment. He is also open to other options, such as medicating with T4 and T3, instead of only T4. Turns out I have iron and vitamin D deficiencies, so that may explain some symptoms.

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

I stopped eating sugar (as far as possible) and most carbs for about 3 years. This helped me get rid of the extra weight that I’d put on while sick and which hadn’t budged since. I do think diet can have a huge impact on your health as a Hashi patient, but it’s sometimes hard to know what to eat and not. The internet is a bit of a rabbit hole filled with so much, often contradictory, advice that it can be overwhelming.

For a long time, I hated taking my medication every morning as it felt like a reminder I’d never be the same again. I started taking it at night instead, which worked for me although my new doctor now wants me to go back to the mornings. Either way, the feeling that I would never be returned to normal has subsided over the years. Not that I think I got all my abilities back, but I’ve decided that time changes a person either way, and so I’ve accepted the difference.

Do insist on having a specialist check you out. There are a number of deficiencies and other issues that are more common with Hashimoto’s patients. And also insist on having regular blood tests, at least every six months. Not everyone remains stable over time. Oh and if you are pregnant or trying to conceive, it’s SUPER important to let your doctor know so that they can adjust your dosis. Your baby may suffer otherwise.

Do insist on having a specialist check you out. There are a number of deficiencies and other issues that are more common with Hashimoto’s patients.

How does your day with Hashimoto’s look like?

I wake up around 8 and take my pill, then shower and so on so that I have 30 mins between medication and breakfast. I try to have a healthy and fairly low carb breakfast, with full fat yoghurt, nuts, seeds and berries. I’m experimenting with cutting down on caffeine as I’ve read it has a bad effect on hormones, so I drink tea or decaf. I’ve noticed a huge difference in wellbeing if I spend some time outside each day, preferably in the morning, so I’ve started taking morning walks so I get daylight and vitamin D. I take supplements: vitamin D, iron and omega 3.

I’ve noticed a huge difference in wellbeing if I spend some time outside each day, preferably in the morning.

I work best in the mornings and after lunch I rarely put in more than 2–3 hours, then my energy for the day is spent. As a freelancer I do sometimes have to work on weekends, so I think it evens out. Anyway I am of the opinion no one should work more than six hours a day, then productivity goes down. Life quality should come first! I try to get enough exercise, preferably 3 times a week. Since my thyroid levels are a bit unpredictable, if I’m more on the hyper side cardio can make my heart race so I tend to do more low intensity things like climbing or yoga.

Currently I like to have a snooze in the afternoon, though in the summer time I need it less. I meet friends and do social stuff about every other day in the week. I also make time to just chill at home. I am much more easily overwhelmed by stress these days, so I am trying to establish a meditation practice. I go to bed around 11, read until midnight. I need at lead 8 hours of sleep to be ok the next day, or I’m jet lagged!

What were the biggest struggle and biggest victory you experienced?

The biggest struggle was getting used to the fact that I have a chronic disease. At first, I read everything I could find on the subject and got a thousand different ideas for alternative therapies and diets. But at some point, I realised it was making me depressed. I have a condition, but I didn’t want to BE that condition.

The biggest struggle was getting used to the fact that I have a chronic disease. (…) I have a condition, but I didn’t want to BE that condition.

Before I got diagnosed, I feel like a lot of people around me didn’t understand the severity of my symptoms. I got a lot of comments like “everybody’s tired”. Even once I had a diagnosis I felt most people didn’t get it. That can still annoy me. Perhaps it’s because thyroid issues are more common in women that people don’t know about much them and fail to take them seriously?

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

Make sure a specialist sees you at least once. Find a balance between keeping yourself informed and trusting your doctor’s advice. Be patient with your body and trust that you will get better. It can take some time, but you’re no longer alone and feeling bad, not knowing why. That’s a great thing!