Thyroid Awareness Day & My Personal Journey with Thyroid Disease

by Debbie Steinbock
May 2015

In honor of World Thyroid Awareness Day on May 25th, I wanted to share my own personal journey with thyroid disease. For any of you reading who have known me for a while, you know I am a big fan of Oprah. (My yearly Debbie’s Favorite Things is a direct rip-off from her 🙂 ) Back in the days of the Oprah Winfrey show, Oprah would explain that the show’s purpose for sharing a person’s painful story was not to make a showcase of  that person’s life, but rather in the hopes of helping someone else’s. That is my hope. To educate and to lessen the time spent suffering of someone who may not know they have thyroid disease.

Please note: I wrote this as “my story” but wanted to include information that might be helpful to some on thyroid symptoms, proper thyroid testing, and resources. Please be sure to click on the links I provided throughout if you want more information.

I believe my thyroid problems started during my pregnancy in early 2010. The prior two years were filled with both amazing highs and lows and, looking back, I now see that I went into my pregnancy feeling very depleted. Most of my pregnancy I felt exhausted and “not me”. Given that I had never been pregnant before, I didn’t know how I was “supposed” to feel. Our beautiful daughter, Mia, was born in September of 2010 and for the first several weeks I was on a high. I was so madly in love with her- and everything I had always wanted in my life was quite literally in my hands. Those first few weeks of motherhood are a whirlwind. I am not sure that I really had the time to feel what I was feeling but I knew something felt different. My midwife checked my thyroid at my 3-week postpartum appointment and my TSH (the most common thyroid screening test and the only test they had ordered that day) was a very normal 1.12.

The following 3-months, I witnessed my hair falling out by the handfuls, my depleted energy, and my inability to sleep at night despite being exhausted. 

That was mostly chalked up to the hormonal shifts after birth and the challenges of being a new mom. I even rationalized it in my own head: In the less than 2-years since I met my husband, we married, did a full house remodel, I became a step-mom to two young children, had a miscarriage, then a full-term pregnancy, and then a newborn. That must have been why I felt as I did, right? It would have been a lot for anyone!

By the time my daughter was 4-months old, two things happened in the same week that became my “ah-ha” moments. First, my mom came for a visit and while she was in town she repeatedly offered that I take some time for myself while Mia slept: go to the mall, go on a hike, or take a yoga class. It wasn’t that I didn’t want to do so, it was literally that I couldn’t. I couldn’t possibly not use the time while Mia was napping to lay down myself. I was crushed- a tired I never knew before. As someone who always had enough energy for two people, this didn’t seem “me” and it didn’t feel right. Secondly, during this same week, I got together with a few friends who all had babies the same age as my daughter. I sat there listening as they talked about how much easier life was now that their babies were sleeping and on more of a regular routine. That day I came home and asked my husband: “why is it is getting easier for everyone else and it feels harder and harder for me?” A light bulb went off for him and we went in that week to have my thyroid checked again. Now my TSH came back at 18.09! (Note: The “normal” reference range for TSH at most labs is 0.45 – 5.5 but according to most thyroid specialists, a TSH between 1 and 2 is ideal).

Further testing revealed that I had Hashimoto’s Disease: autoimmune hypothyroidism. There are two antibodies that indicate an autoimmune attack on the thyroid gland: TPO Ab and Tg Ab and both of mine were elevated. I called my midwife to ask if those antibodies were run 3-months prior and I learned that antibody tests are generally ordered only if the TSH is out of “normal” range (and still many doctors do not order them at all). While in theory I can see why that makes sense, what I can tell you now after almost five years and countless hours of research later is that my antibodies probably would have been elevated months or years before. Knowing this may have saved me so much needless suffering. Many people have elevated antibodies indicating an autoimmune attack on their thyroid for years before it is reflected in their TSH. Furthermore, it has been shown that treating the thyroid when just the antibodies are elevated leads to a better long-term outcome.

So, now I had an answer and although I didn’t know it at the time, I was about to embark on the second major health journey of my life.

My doctor at the time started me on a natural thyroid hormone to make up for the lack of hormone that mine was no longer making due to the Hashimoto’s. When my TSH was still 4.79 a month later- and I didn’t feel any better- the dose was doubled. This unfortunately sent me into months of being over-treated and HYPERthyroid (my TSH came back around 0.2 for many months).

On top of all my original symptoms, now my eyes burned, my heart raced, my insomnia worsened and I felt like I could never get my body to calm down or relax. Imagine trying to drive a car with your foot on the gas and the brake simultaneously- I felt both wired and tired at the same time. Visually, it was like someone pulled a sheer curtain down in front of my eyes- nothing in the world looked or felt right to me any longer. I felt like I was in the world but not engaged in it anymore. Was I going crazy? What had happened to me?

For some (like me) the thyroid hormone replacement, although desperately needed, unmasked how weak my adrenal function was. The last several years of my life were a recipe for adrenal fatigue. Furthermore, the natural thyroid hormone I was taking contained T3, the “active” thyroid hormone and at the time that was something my adrenals could not handle-especially in amounts greater than my body needed! So, I was then switched to synthetic T4 only (the most conventional thyroid treatment), but I still did not feel better. I was slowly weaned down and then ultimately off of any thyroid replacement medication.

To be honest, there was a part of me that didn’t want to take any medication anyway. In my first healing journey, that truly was one of the best decisions I made to reclaim my health.   Now off of medications, my lab numbers “looked” ok. My TSH hovered around 3 and my free hormones were all in the mid-to-upper half of the reference range. But the problem was, I still didn’t feel ok. One of the books I read early on was called “Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal?” I remember telling my husband that I was the human version of that book title.

I was 15-months postpartum and was now able to focus on my body without worrying about what I couldn’t take due to nursing.  Out of desperation to finally feel better, I went to a new doctor who had just moved to town and she would change my life forever- but not in the way I had originally hoped. The story of my next few years is so confusing and personal- and way more than I can get into in the scope of this post. To sum it up, this well-intentioned doctor, in an attempt to help me, quite literally flattened my already depleted body. The treatments she prescribed were too many, too strong, and too harsh (and many simply unwarranted). I wound up with most systems of my body crying out for help: stomach, adrenals, pancreas, brain, immune system, etc. I only worked with her for 8 weeks and have spent the next 3+ years working back from the physical and emotional scars my body endured.

Now this journey became about so much more than healing my thyroid, it was about healing ME.

I wish I could say that I embraced this new realization from the start. I tried to. I would look towards all the other painful events in my life and remind myself of the gifts that ultimately came from them. What if I could accept now that a gift would eventually come from this too? I wanted to but it was too hard. In those early weeks and months it was about figuring out how to keep our life afloat after going from feeling terrible to T–E–R–R–I–B–L–E. But we ultimately made it through that and it took every ounce of strength left inside of me to do so.

I was angry (what did this doctor do to me to make me go from bad to worse?), I was ashamed (how did WE of all people let this happen?), I was compassionate with myself at times (wasn’t it ok to trust her?)-but ultimately I was terrified (will I always feel like this?). Because I felt so broken, my goal was no longer to simply get my health back to what it was before. I knew I would never be the same again. I now found myself at the very bottom and I ultimately took this as my opportunity to create a new ME when I re-emerged.

When I say I would never be the same again, I don’t mean that my physical wounds would leave me permanently “damaged”, although I did question that. Mostly I mean that this experience was so big and so painful in every way that it cracked me wide open, and I would never be the same person again.

That was the gift of this journey.

I still had to figure out what I needed to do for my thyroid- and really, my body as a whole. But in reality, it became a spiritual journey for me. My darkest fears, my anxieties, my uncertainties, my insecurities were all staring me in the face. The person who I always was (healthy, highly successful, “put together”, rarely in need of anyone’s help) was now gone. So, who was I? I could no longer hide, no longer avoid looking at everything I had believed was me for the past 36 years.  Instead I decided to ask myself if this was how I still wanted to be.

I had to (and still do) deal with my internal voices that I always assumed had my best interest at heart.  The ones that told me to push harder, achieve more, make sure everyone likes me, do what everyone else needs, and love myself based on what I could produce, and be hard on myself if I ever for a moment fell short.  I started to meditate every single day. I read dozens of books about the mind-body connection and became willing to look at my fears, anxieties, perfectionism, upbringing, etc. in a way that I never had before. I decided that I would consciously re-craft my career, my commitments, my whole life, in a way that supported me and allowed me to continue to heal.

I finally began to slowly heal, both physically and emotionally.

I did ultimately find that the right dose and the right brand of natural thyroid hormone helped me regain much of my physical health. But that was the tip of the iceberg. Yes, we can also talk about balancing the adrenals, stabilizing blood-sugar, taking the right nutrients, and further supporting my digestion-but that’s for yet another (long!) post as well.

Whereas my first healing journey through Crohn’s was about waking up to how I ate and what I put in my body, this second one was truly about waking up: cultivating an awareness of my life in a whole new way. My journey towards mindfulness.

I learned that for me personally, less is more- in nearly every single way. And although this second journey took longer than the timeline I would have chosen, I am physically and emotionally well. In some ways, I am more well then I have ever been before. I am gentler on myself. I am more present. I often catch myself effortlessly doing things that I know only a year ago would have been too much. Again, that is the gift. I never appreciated things like having good energy or getting a good night’s sleep before. Or a long and fulfilling day at work- or at play- these were things I took for granted, as most of us do because we think they are a “given”.

One of the biggest things I struggled with along this path is seeing my health as some destination I was climbing towards. More realistically, I was climbing and gripping and clawing in desperation. When would I finally be there?

Now, I am continually humbled by the journey I am on. Yes, I prefer the times of coasting in comfort and ease over the dips of hardship and set-back. I am human. But I am working to allow myself to get to know them all well-and to allow all of them to live comfortably in the new healthier ME that was reborn in this process.