My Hashimoto’s Story

My Hashimoto's Story

My Hashimoto’s story began well over a decade before I’d even heard of Hashimoto’s Disease…

Symptoms Prior to My Diagnosis

I can actually identify autoimmune symptoms years and years and years before my diagnosis.

The earliest autoimmune symptoms I can identify start in my late teens.  However, I’d say my symptoms really started disrupting my life over 12 years ago when I was pregnant with my son. 

While pregnant with my son (my second pregnancy), I experienced a number of symptoms including feeling unwell and sick all the time, horrible pain in my pelvic area, Gestational diabetes, and recurring UTIs. 

Days after having my son, I found myself rushed to the ER where I found myself admitted to the hospital with Sepsis as well as a kidney infection.  I spent days in the hospital on Morphine and heavy antibiotics, then went home on a PICC line and catheter.  My husband learned to administer my IV meds at certain intervals throughout the day, including the middle of the night.  I also received visits from a home nurse.  Thanks to modern medicine, I eventually recovered. 

I went on to experience postpartum depression, and started experiencing a number of mystery symptoms not long after.  My most bothersome symptoms at the time?  Joint pain, fatigue, and losing my hair. 

I opened up to my mom about my symptoms at one point, and she mentioned seeing a Dr. Oz where he explained the benefits of going gluten free.  Willing to try anything, I gave a gluten free diet a try. 

Eliminating gluten helped improve my symptoms for a number of years until eventually more symptoms gradually popped up.

Explaining Away My Symptoms

At first I attributed my various symptoms to being a busy mom and stress.  I had two little kids, I worked from home, and we felt financial stress at the time.  I found myself in a completely new phase of life and I wrote my symptoms off to how it must feel to be an busy woman, wife, and mom.

Then, years passed and my kids started getting older.  They started having more activities.  I started homeschooling them in addition to working part time from home.  Between my gradually worsening symptoms and my crazy schedule, I felt like I could not keep my head above water.  I felt overwhelmed and had no frame of reference when it came to chronic illness or autoimmune disease.  Those were not even on my radar at the time.

As my health symptoms grew progressively worse over the years, it felt incredibly hard for me because I felt weak.  Previously, I prided myself on being all kinds of strong.  I did marathons, mud runs, worked out all the time, I homeschooled my kids, worked from home, spent hours each week volunteering in my church…I did ALL the things.  And I loved it.  I loved feeling strong.  “Strong” felt like part of my identity, so I struggled to cope with my body apparently weakening more and more each year.  Ironically, the need to feel and appear strong led me to push my body past its limits year after year after year, and to try to hide my symptoms and how sick I felt.  I did not want to appear weak to anyone, including myself.

Seeking Answers

I came from a very western medicine philosophy and mindset.  Further, I always felt very trusting of doctors.  Up until my diagnosis, my doctor’s words felt final.

I did go to the doctor regularly over the last few years leading up to my rock bottom.  I’d tell him my symptoms, and I’d even tell him I thought my thyroid might be the cause since I knew thyroid issues ran on both sides of my family.  My doctor would run blood tests, and then a few days later report the “good news” that I was fine.  I felt anything but fine.  In fact, I felt horrible, but I trusted him.  Little did I know my doctor only ran the TSH test and not a full thyroid panel.  I later discovered my doctor used a liberal range for the TSH test.

After going back to my doctor a number of times over the years, I felt like I lost my mind.  I rationalized that my doctor told me he found nothing wrong, so that I needed to act like I felt nothing wrong. 

Big mistake.  I pushed myself and I pushed myself and I pushed myself until I literally could no longer push myself.  Until there was no doubt left in my mind something was wrong with my body. 

At that point, I became very afraid and I frequently thought I felt like I might be dying.  I’d look at my husband and not understand how he could do ALL the things and have so much energy.  I felt so ashamed.  I think I felt just about every negative emotion out there about myself.  To make matters worse, I was so incredibly hard on myself.  I felt betrayed by my body, so I consistently spoke negatively to myself.

How Did I Cope For So Many Years?

Since I trusted western medicine and my doctor had no answers and no medicine for me, I leaned on coping mechanisms to get me through the day.

My coping mechanisms? 

Intense workouts to prove my strength.  After the temporary high from my intense workout, I always felt worse.  I had no clue exercise intolerance existed, let alone what it meant.

Emotional eating. 

Popping Ibuprofen almost daily.  Ibuprofen took the edge off of my joint pain, body aches, and low-grade fevers. 

Caffeine in the form of Cherry Coke and Diet Coke.   For years, my day revolved around when I could justify drinking another Cherry Coke.  I tried to time my soda drinking to give me enough energy to make it through the day. 

The year prior to hitting rock bottom, I made the decision to give up my caffeine addiction and quit soda out.  Within months, my symptoms felt worse without the caffeine to get me through the day.

Finding My Diagnosis

In the months prior to my diagnosis, at my rock bottom, my symptoms included horrible fatigue, brain fog, daily low-grade fevers, feeling like I had a storm going on inside my body, joint pain, muscle pain, cold intolerance, heart palpitations, chest pain, and anxiety.

I hit my rock bottom towards the end of 2017.  I felt pretty rough the summer of 2017, then by the end of the year, I struggled to barely function.

By November 2017, I felt desperate to find answers.  Earlier that year, I worked with a professional through some emotional trauma, and she mentioned I should see a naturopath for my health issues.  I hesitated.  Our insurance does not cover naturopath costs, and I had no guarantee I’d even find answers there.  But my desperation won over.

I looked up local naturopaths in my area, and made an appointment with one.  She ordered a whole slew of all different kinds of tests.  Within a month, she referred me to get an ultrasound of some of my organs, including my thyroid.

The ultrasound results showed damage to my thyroid tissue, so I went to see an endocrinologist in January of 2018.  During my first visit with my endocrinologist, he diagnosed me with Hashimoto’s based on my ultrasound alone.  I did ask him to do a blood test as well to confirm the diagnosis, which he did, and my TPO blood test confirmed the diagnosis.

For more insight on the stages of Hashimoto’s, I recommend this article by Izabella Wentz.  This book is also a great resource.

How it Felt to Finally Have Answers

Honestly, my diagnosis stunned me to a certain degree.  I remember sitting across from my endocrinologist and being shocked that he so quickly and easily figured out what my diagnosis.  That I finally, after years of wondering, held an answer. 

I distinctly remember listening as he explained Hashimoto’s Thyroiditis to me.  I remember initially feeling happy and hopeful – NOW I can move forward, NOW I can start to feel better NOW I can put this whole nightmare behind me.

Right?

Wrong.

That happy and hopeful feeling lasted about all of maybe 5 minutes until my endocrinologist told me there was nothing to be done for it. 

I remember asking him “Isn’t there some way I can eat to feel better?  Or live?”  I remember him saying there’s no evidence showing any certain kind of diet helps.  However, he did say some patients found improvement on a gluten free diet.  I chuckled and said, “I’ve been on a gluten free diet for years and I’m like this.”

My endocrinologist further explained he thought I’d need to be on medicine soon, and that I’d be on it for the rest of my life. 

At that point I felt angry, and felt like saying, “wait, hold up a minute, you’re telling me I feel like crap, lost the life I once had, can barely get out of bed, have to rest after taking a shower, feel too sick to go to my son’s baseball games, and that there’s nothing I can do????  I feel like I’m dying here, doc.”

I didn’t say any of those things though.  Because I really liked the doctor, and he patiently answered my questions the best he knew how.

After my anger subsided, I got stubborn.  I remember getting up and walking out of his office determined to find a way to prove him wrong.  That day I became a warrior.  I walked out of his thinking “no way in heck I am just accepting that load of crap.  I am not going to live like this.  Nope.  No way.  Not gonna happen.  This is not how my story ends.”

Enter the Autoimmune Protocol (AIP)

Within days of my diagnosis, my naturopath gave me a list of foods I should eat and foods I should not eat based on my diagnosis.  It had no label on it, but I went home and did my own online research based on the list.  Through my online search, I found the autoimmune protocol (AIP) through Dr. Sarah Ballantyne’s website and work

I grasped on to the hope that AIP may help me find relief from my symptoms.  However, I also felt overwhelmed and scared.  As a cheat day loving emotional eater, I felt unsure if I could really adopt the AIP.  But I just felt so sick and tired of being sick and tired, so I decided to go for it.  After all, I rationalized, what did I have to lose?!

I started AIP that day, and never looked back.

Did I find immediate relief on AIP?

I did not find immediate relief on AIP.  In fact, I felt worse before I felt better the first days on AIP.  I want to say within a couple of weeks I saw gradual improvements, then I saw more substantial improvements after that.  I continued seeing improvements for months while on AIP.

While I do have a number of successful reintroductions, I still love to eat a nutrient dense AIP diet because of how amazing I feel when I do.  But I will say, there are so many ins and outs of the autoimmune protocol, and it’s important to understand we are all unique.  I found troubleshooting the AIP diet to be instrumental in my journey, as well as paying particularly close attention to the lifestyle aspects of the AIP.  I found that sleep, stress, movement, nature, connection, and reducing toxins to be incredibly important to my autoimmune wellness journey.

Moving Forward

As heartbreaking and trying as it felt to battle years of undiagnosed chronic illness, I am grateful for everything I learned.  I’ve grown in ways I never thought possible.  I’ve learned to love deeper, belly laugh harder, and appreciate life more fully.  Last, but not least, my journey led me to you.

I am so incredibly honored to share my Hashimoto’s story with you, and to walk this Hashimoto’s path with you.  At the beginning of my Hashimoto’s story, I felt so alone.  I felt like nobody understood.  Both as my health deteriorated and as I became to overhaul my nutrition, lifestyle, and mindset. 

I remember telling my husband that I know I must not be the only one going through this.  The only one who feels like this.  I wanted to speak up and to raise awareness, and to find you.  To tell you I know it feels like the life you loved is over, but it’s going to be okay. 

There may be no cure, but changing the way you eat, live, and think can feel like a cure.

Finding JOY while learning to live well with autoimmune disease is not easy, but it is 100% worth it.

You got this.

And I got your back.

Reach out anytime you need a listening ear, have questions, or just need some encouragement from someone who gets it.

I get it.

And you’re not crazy.

Comments (2)

Charlotte.ikelberry@alumni.ou.edu'
Charlotte Ikelberry

I have frontal fibrosing alopecia. I need to stick to AIP better. Because of you, I no longer feel so alone. I also pushed through exhaustion, and also homeschooled my children for 9 years.

Shanna Nemrow

Thank you so much for sharing Charlotte! I am so happy to connect with you, and honored to walk this path with you! Sounds like we have a lot in common!

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