Insight and hope beyond a diagnosis.

Editors’ note: The In Her Shoes column gives transparency to personal life experiences and perspectives that you or friends may be living with. Hashimoto’s Thyroiditis is an autoimmune disease that affects 5 out of 100 people. Women are eight times more likely to have it than men. This edition of In Her Shoes interviews a woman who has Hashimoto’s and is also a nutritionist specializing in Hashimoto’s and thyroid health.

Name: Aimee McNew

Age: early 30s

For those who are unaware, can you give us a brief description of Hashimoto’s Thyroiditis. What are the symptoms of it, how is it affecting the body, and what is your journey with it?

I started having severe symptoms of Hashimoto’s when I was 18. I was so tired some days that I couldn’t get out of bed, even after sleeping for 12 hours. I was gaining weight and couldn’t lose it no matter what I tried. I was depressed and scared. I would often worry I was dying of a rare disease, because no one could seem to determine what was wrong with me, and I felt absolutely miserable. No one checked me for Hashimoto’s because I was “too young” to have it. Ten years after my symptoms began, at the age of 28, I was finally diagnosed with Hashimoto’s Thyroiditis, an autoimmune disease where the immune system mistakenly gets told to target and destroy the thyroid.

Your thyroid is a butterfly-shaped organ that sits at the base of your neck and regulates metabolism, energy levels, and even contributes to your mood. Many people are familiar with hypothyroidism, where your thyroid doesn’t make or convert enough hormone, so you feel tired, cold, brain-fogged, and emotionally down. The same thing happens with Hashimoto’s, but it is caused by autoimmune factors. That is, your immune system is causing an attack on the thyroid, as opposed to the thyroid simply failing to work properly. Men and women both have the symptoms of Hashimoto’s when they get it, but it seems to hit women harder because of how it influences reproductive hormones, of which women have more than men. Hashimoto’s can make periods worse, PMS terrible, and can masquerade as a number of other chronic disorders like fibromyalgia and rheumatoid arthritis.

Women are eight times more likely to get Hashimoto’s than men, and it can begin to impact them anywhere from teens to post-menopause, though during one’s forties and fifties is most common. Once you get an autoimmune disease, it can’t be cured, and you can’t undo the damage that has been done to your organ. But you can still get into remission and find relief and regain a normal life.

Hashimoto’s is one of those “silent burdens” that so many women carry. It’s not like a broken bone or cancer, where the effects of the disease are visible, but it can be very disruptive to a woman’s life. Can you speak about this to a woman who has been diagnosed and struggling with the overwhelming nature of it all? What can help her start to feel better, or at least feel less overwhelmed?

Getting diagnosed with Hashimoto’s, or having all those symptoms and struggling to get an accurate diagnosis, is immensely frustrating. My friends and I who’ve dealt with infertility or other chronic disorders like to say there’s no point in competing in the “pain olympics” because everyone loses. Whether or not your Hashimoto’s symptoms are the worst they could possibly be, or just a little distracting, any type of chronic health issue feels huge and frustrating. If it’s affecting your mood and mental health, it can feel even more impossible to tackle on top of that. It’s okay to be scared, but this is why you need to find a support team who will help you but also encourage you. That’s a huge part of medical care and even being a nutritionist. I clearly outline a plan for my clients, but I also listen to their fears, encourage them, and relate with them. Feeling alone is one of the worst parts of a chronic health problem, and even though so many women have them, we often feel isolated while we’re going through it. But you don’t have to feel alone, so if you feel that way, ask for support. Set up an appointment with your doctor to ask more questions; find a nutritionist experienced with thyroid health to create a manageable plan that is personalized for your particular set of symptoms and concerns; even consider seeing a therapist, since getting diagnosed with anything can be stressful and cause grief. I’ve done all of the above, both for my initial diagnosis and when I’ve experienced a flare.

You’ve had Hashimoto’s Disease and you’re also a nutritionist and a writer and educator on the disease. What ultimately led you into working as a nutritionist and an educator on the disease?

In the last five years I’ve seen a major shift in how Hashimoto’s is being treated. People who present with thyroid symptoms are being tested sooner, but that wasn’t the case for me. A few years before I was officially diagnosed, I started doing my own research. I went down the rabbit hole of reading dozens of books, hundreds of research papers, and anything else I could get my hands on. While I didn’t suspect Hashimoto’s, I concluded that my deep fatigue had to be a cellular energy problem. I dramatically altered my diet and started eating only healthy protein, vegetables, and certain fruits, like berries and apples. I drank tons of water. I stopped eating sugar in any form, and took supplements to address gut health and inflammation.

While I wouldn’t really recommend going the extreme route that I did, it is the path that ultimately led me into formal study to become a nutritionist.

Now, seven years after my official diagnosis, I have been in remission for six of them. My antibodies as of last week are 1 and 2—anything under 15 is considered to be good. While I’ll be on thyroid medication for the rest of my life, I don’t even mind because I feel so much healthier now than I did in my teens or twenties. The thirties aren’t scary to me because they’ve meant health, wellness, and a vibrant life I never thought I’d have. That’s the sort of hope and healing I want to help my clients achieve.

There is a lot of information out there about Hashimoto’s. Who are your trusted sources for thyroid health and why?

Of course, I’m not a doctor—and I certainly would never claim to replace one. My integrative MD has been an instrumental part of my healing, and I credit much of my health to her. She has put me on a medicine, food, and lifestyle regimen . Together we’ve also utilized many supplements—sometimes, I’ll email her about one I’ve read about, other times, I’ll tell her what’s going on, and she’ll suggest one or two to try.

Hashimoto’s might be typical in some ways, but no one is just one set of symptoms. In addition to Hashimoto’s, I have four other autoimmune disorders (all of which I am also in remission from right now), and so some of the work has been addressing factors from those, too. Having a good, communicative relationship with your doctor is essential.

As a nutritionist, I’ll also say that we can be very helpful to healing, in addition to your doctor. I’ve worked with hundreds of women who have Hashimoto’s as a support to their doctor.

Anyone who has done a cursory Google search on Hashimoto’s will see that there are tons of resources on the Internet about Hashimoto’s. I even wrote a book on it. If you’re new to Hashimoto’s, it’s overwhelming. Some people do better by educating themselves, others read all these books and feel like the journey to healing is so long that they might as well not begin. I honestly value a good doctor and personalized care over online resources; if you don’t have a doctor who you feel comfortable with, it’s time to find a new one.

How can a friend support another friend who has been recently diagnosed or who lives with Hashimoto's? What is unhelpful for women to hear when they have Hashimoto’s or thyroid struggles?

If you have a friend who has been diagnosed with Hashimoto’s, it’s not helpful to tell her that it’s the most common autoimmune disease. Even though it’s common, and many others are dealing with it, that doesn’t minimize the major impact it is having on her life today. Don’t act like she should be able to pull it together, or should just sleep more to feel less tired, or should just take antidepressants to fix this. She may need those, which is for her doctor to decide, but she may also just need thyroid hormone to rebalance what’s missing. Hashimoto’s is complex and multifaceted. Even if you have it, your friend’s Hashimoto’s could look and feel different. The best thing to say—for any health challenge or struggle—is, “I’m so sorry, how can I help?” And then let them tell you. If they aren’t sure how you could help, just be there.

As women, we doubt ourselves a lot. When it comes to thyroid disease, it seems like a lot of the symptoms could easily be dismissed as things like too much stress, a need for a better diet, or just getting more sleep. And a lot of patients have the unfortunate experience of their doctors’ saying, “Your thyroid levels are fine. You’re healthy” when they clearly don’t feel themselves. How did you get through those times of questioning and doubt? And what would you say to other women experiencing it?

This is the hard one. This is why it took me ten years to get a right diagnosis, because when I spoke to doctors, they kept assuming my issues were something else because of my age. I didn’t know at the time how to ask for the right tests to be run. If you feel off and your symptoms overlap with thyroid problems, you have the right to ask for the full thyroid panel to be run.

Most doctors only run TSH to assess thyroid hormone, but you really need to know your Free T3, Free T4, and thyroid antibodies. If you’re feeling terrible and all your thyroid labs come back normal, which is possible, don’t give up. That just means you need to explore other causes.

In my experience working with women, if you’re feeling fatigued, gaining weight, or just don’t feel yourself, there’s always something “off.” It might be your thyroid, it could be your reproductive hormones, it could be the start of menopause, it could be high cortisol from stress. If you see a doctor who dismisses your feelings and won’t look for answers, that’s just a sign that it’s time to find a new care team. You don’t deserve to feel terrible all the time because it is not normal.

Here at Verily, we love our Daily Doses—quotes or phrases that motivate or inspire us. Do you have a mantra or phrase that helps you to have hope in the hard days?

“Sometimes the best self-care is saying, ‘no.’” I don’t know if it’s attributable to anyone, but it became my mantra while I was healing from severe fatigue. I am the type of person who hates disappointing people and felt guilty if I told someone “no.” In the last decade, I’ve gotten very good at saying “no” to some things so I can say “yes” to taking care of myself. Now that I am healthy, I still say no to many things because avoiding burnout is a key to avoiding flare-ups for me. Another one I love is, “Self-care is not selfish.” If you’re burdened by health problems, you need to take care of yourself. If you’re a mother, a wife, an employee, a friend, you’re better equipped to live life if you’ve taken care of yourself in the process. It doesn’t mean you’re taking anything away from anyone else; it means you’re optimizing how much of yourself you can give in the future. We are more vibrant, healthy, and present in life when we’re not feeling tired, ill, and plagued by horrible symptoms.