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Wellness

What Living with Hashimoto's Taught Me

By
Jennifer DeSimone
on
October 1, 2019

Living with symptoms of a mysterious disease can be scary and disheartening, but it doesn't have to be that way.

I am going to preface this article by saying I'm going to be an open book here. I've spoken to so many people who have reached out to me struggling with Hashimoto's or another auto-immune disease, and it is to no one's service for me to hold back. So, here we go.....

Hashimoto's changed everything

In my mid 20's everything changed...and not in a way I wanted it to.

Seemingly out of the blue I began to gain weight, be (extra) moody, feel exhausted and cold all the time, get sick easily...oh and my hair started falling out.

Every doctor I went to said the same thing. Exercise more. Go to bed earlier. Take this prescription for depression.

I knew in my core that I wasn't depressed but something was still off.

After an incident where I thought I had prolapsed, I made an emergency appointment with my OBGYN. She asked me every question under the sun and every time I said "yes" she nodded. She sent me for an intensive blood work panel, telling me she had a hunch it was my thyroid, and what came back was some weird sounding thing: 

Hashimoto's Thyroiditis.

You may not have Hashimoto's but if you're experiencing similar symptoms or experiences with doctors, this article is for YOU.

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Anatomy of a thyroid

What is Hashimoto's?

Hashimoto's in its simplest terms is an auto-immune disease that affects the thyroid. In my non-medical understanding, the body literally attacks your thryoid and your thyroid just doesn't work.

Why this is important is because your thyroid produces two main hormones which pretty much control and regulate everything in your body.

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Diagnosis

I was sort of in denial and honestly did not take it seriously. I saw an endocrinologist, had a sonogram of my thyroid, got on hormone replacement, went gluten free and for a while I felt better.

I had my blood drawn every few months, tweaked medication as needed, had the nodule on my thyroid re-scanned.

I read about diets, and hormones, and how getting pregnant wouldn't be super easy (and in some cases impossible), and I kept living my life. I put my diagnosis in the back of my mind where it lived. 

I continued to travel, work, and do all the things.

And then sh*t really hit the fan.

Last year I started feeling all the symptoms come back and I knew something was up. I came back to the States and went for an endocrinology visit. My TSH levels were all off and the nodule on my thyroid had more blood than normal, meaning I had to have a biopsy for cancer.

I had the biopsy (negative thank God), but things got real. I was living with a disease in my body that at any time could take over my life. I changed my diet (more below), I read everything I could, and I took the approach that I had to heal.

I created a team of doctors including a primary, an endocrinologist, an E.N.T., and a cardiologist (as my Hashimoto's flared my blood pressure). I went to appointment after appointment, filled out the same papers, got poked and tested, and cried a lot. But I got more answers than I had ever had.

What Hashimoto's has taught me:

1. Advocate for YOUR health

I went to countless doctors who didn't take me or my symptoms seriously. Women in particular are taken less seriously and if you are a woman of color, you're taken even less seriously.

Do not let one doctor dismiss you or your symptoms. Find another doctor. Keep advocating for your health. There will be a doctor out there who will listen, take you seriosuly, and treat you properly (or get you to a specialist who will).

2. Find support & talk about your challenges

The process is really f*cking hard and discouraging as f*ck. I have shed more tears after doctor appointments than I can even remember. But once I found support I never felt alone.

Many cities have thyroid groups that you can join. These people have been there, know what doctors to see, and have empathy. Find these groups and reach out! 

Surround yourself with people who may not understand your disease but understand you. If you say "I don't feel good" they don't make a joke or say its in your head. They respect you and support you. They listen when you need to talk.

Your relationships will be affected - especially those closest to you. I am so grateful I have a husband who gets when I need to go to sleep at 8 pm and reminds me to take my supplements. Find these people and thank them for being there.

Read the best of the best out there to learn more. My favorite guru is Izabella Wentz. Not only is she a woman, she's a pharmacist who also has Hashi's and combines exploration, diet, lifestyle changes, and medication to heal. Find these experts whom you connect with, and learn from them.

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Books by Izabella Wentz

3. Experiment

With everything!! Diet, supplements, and yes, even your beauty regime.

In the last year, I cut many foods out including eggs, soy, dairy and gluten....and added some in like grass-fed beef, collagen, adaptogens, and bone broth. I felt amazing - energy through the roof AND my hair started coming back! 

I also got rid of everything with chemicals from my makeup to soaps & lotions to household cleaners. It can be more expensive but chemicals act as disrupters. And lets be honest, that extra $2 for a bar of soap looks like a bargain when you're thinking of ways to avoid cancer.

Find your balance between holistic lifestyle changes and medication.

4. Own it

This is the most important lesson.

One of my favorite actresses is Gina Rodriguez. I connect with her on so many levels, one of which is that she lives with Hashimoto's.

In a recent Vogue article, she said “I rejected the fact that I had a disease".

When I read this, EVERYTHING changed.

For the first time in my life I acknowledged that I have a disease. With that, comes responsibility to take care of myself, set boundaries, and do what I need to do to live the healthiest version of myself.

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Gina Rodriguez in Vogue

That means being open with my story and supporting others.

And hoping that along the journey others find the support they need.

Because here's the thing: at the end of the day, you have this one life and you deserve to live your life in the healthiest possible way, empowered and without fear.

I'll end with this one last note:

Remember how I mentioned how pregnancy would be hard? After I got married, fears of not getting pregnant were on my mind. Even though I did experience a miscarriage, I became pregnant. 

While the pregnancy hasn't been easy and was high risk to start, its proof that in some way by owning my disease, by advocating for myself, for experimenting...for doing all the things, what was meant to happen happened, despite the hurdles my diagnosis presented.

I am in no way saying that this will be everyone's experience nor diminish the pain that others will face when they can't heal or get pregnant, but rather saying that you are in control of your disease. I have no idea what this disease will bring down the line, but I stand empowered to battle it. This makes all the difference.

If you'd made it this far, I hope you take away this one gem with you: You are not your disease, you are so much more and you get to write the story of your life.

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Still living my best life. Pictured here in Bali!
Jennifer DeSimone
Currently based in Austin, Jennifer is the Chief of Community for U30X. She has a passion for creating connections, community, and opportunities for more empathy. In her spare time you can find her on her yoga mat, whipping up something yummy in the kitchen, or reading a good book.

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