DISCLAIMER: I am NOT a medical or health professional, this is ONLY to share my own experience and should not replace professional medical or health advice.

First diagnosis

My thyroid journey started in 2009, around the age of 16. I had already been struggling with severe gut issues for about 4 years and was seeing yet another doctor to find out what was wrong.

This time, there was something in my lab work. But something seemingly unrelated to my gut. I was told I was borderline hypothyroid, which meant the butterfly-shaped thyroid gland in my throat was not making enough thyroid hormone—hormones that help regulate my metabolism, among other important things.

For 16-year-old me, this was traumatic. To be told I possibly have a disease I’d have to take medicine for, for the rest of my life—I already had so many fears about my gut issues and how it was affecting me, the news hit me hard.

I had an ultrasound that revealed a small nodule on my left thyroid, which now meant I’d be getting ultrasound check-ups every year to monitor its growth.

Gut issues

In my mind, though, I was still hung up on all my gut issues that no one seemed to have a solution for, or even care about. I was constantly sent home with stool softeners, laxatives, or just told to start taking benefiber/metamucil or eat more foods with fiber.

It was frustrating to say the least, and it felt like nobody believed what I knew was happening in my own body—not even my parents.

I was researching as much as I could on what was available on the internet in 2005 and was finding things like, “IBS” and “leaky gut syndrome” and was laughed at for thinking I had them.

Four years later, I was getting this diagnosis of “hypothyroidism,” and I was convinced the two issues were somehow related.

Twenties life goes on

Naturally with leaving for college, serving a church mission abroad, and all the other ups and downs of life in your twenties, my health was kind of shoved to the side.

After my second year at university, I decided to go on a church service mission, and once I was back, decided to start a gut health diet. I’ll have to look for the name of the program, but basically, it required an incredibly strict diet of low fodmap, and made-from-scratch foods (which became very time-intensive and expensive).

Naturally, once school started up again, this diet quickly fell by the wayside and although I did feel a lot better and was seeing some positive results from the diet, I just couldn’t realistically continue it.

As the course of the school year went on, I had a few trips to the ER with MRI scans that showed nothing remarkable, except….a backed-up colon, which was simply treated with an orange drink that was supposed to help me go — what?

Also during that time, I did have one weird pap smear result that ended up not being anything, along with a fungal infection. Other than that, I was too busy to find doctors or really research anything about my health and my lifestyle was not the healthiest.

Naturopathic doctor

Probably a year before I graduated, I decided to really buckle down on trying to find answers and found a naturopathic doctor in SLC I started seeing for help. He had me take some tests to assess whether I had any parasites, candida, etc., and had me take different antifungals.

I felt like they were helping a little, but I was paying for everything out of pocket, and the results were so subtle and minimal, that I quickly decided I needed to stop seeing him.

Post-grad life

It was more of the same after graduation, I was so stressed about finding a job, I didn’t have time to think about my health. After working a high-stress, late-night job for about nine months, I decided to quit and started a new job that was much better but still very stressful.

That was also around the time I met my now-husband. And dating while working full-time, although incredibly rewarding, brought a lot of different stresses with it too.

I believe it was a combination of lots of stress, toxin build-up from years of accumulation, and unhealthy lifestyle choices (like not getting any sleep and not eating the healthiest foods when I wasn’t on my diets), that led to what happened next.

Married life

Within about a year of getting married, I started noticing the nodule in my thyroid. Before, I could feel it was there, but it never felt heavy or really bothered me.

Suddenly, it was feeling really big and was actually starting to feel heavy in my neck and making swallowing difficult. It was at this point I finally decided to see my GP and had an ultrasound.

Nodule growth

They found the nodule had grown considerably and they wanted a biopsy. With so many other things going on in life, and also because I just didn’t believe anything was wrong and I thought it was probably unnecessary, I put off getting the biopsy for like a whole year (so bad!).

When I finally became ok with the idea of someone putting a needle in my neck (which felt weird but actually wasn’t that bad!), I got it done and the result was: “indeterminate.” Which told us nothing and meant more tests. After changing hospitals and getting a second biopsy, with another “indeterminate” result, they put it through genetic testing, which came back as the equivalent of “indeterminate” as well.

I was told that meant it was like a 97% chance or something that the nodule was benign. Which was good enough for me, but my husband was skeptical. His logic being 97% means there’s still a 3% or whatever the percentage was, chance that it IS cancerous.

I HATE the idea of surgery and the doctor telling me that it was my choice whether I wanted to leave it in or take it out pretty much meant it was just going to stay in there. I didn’t want to do anything to my body unnecessarily.

My husband and parents, on the other hand, were apparently really hoping that I would just take it out.

Shrink the nodule

I was trying to do all I could to shrink the nodule via functional medicine throughout all of this, doing elimination diets, and cutting out gluten (in case it was Hashimotos) just to see if it was something I could treat with diet and nutrition. I did find out I had SIBO from a SIBO breath test but didn’t make much headway with shrinking the nodule.

I think there was another ultrasound at some point, and it showed that the nodule had actually grown, despite my dietary/nutrition efforts.

It was at this point that I did begin to worry about it continuing to grow since they kept mentioning it would only get harder to take out the longer we left the nodule in there.

Thyroid Lobectomy

That’s when I started seriously considering surgery and scheduled pre-ops with different surgeons. One of the big stresses, unfortunately, was money.

The second doctor had an office of great staff, was very transparent with us about cost, and the doctor himself came recommended by my endocrinologist. All of these factors helped me to feel better about moving forward. At the end of our pre-op his scheduler “tentatively” scheduled my left thyroid lobectomy for June 21, which she assured me I could cancel as late as the day before.

Surgery Day

In my mind, “tentative” was exactly what this was, but as the date came closer and closer, I suddenly felt like I should just go ahead and get it over with.

My “tentative” date became my actual date and I somehow found myself in hospital robes, sitting under a pile of warm blankets on a gurney in the surgical center.

I had so many fears. Was I going to be completely knocked out during surgery? I made the mistake of reading horror stories of people waking up during surgery—I kept telling the anesthesiologists that I wanted to be OUT.

The IV was surprisingly probably the worst part.

Post-surgery

As I slowly woke up, I was SO relieved to find that everything had gone smoothly. I was alive, I was ok, and I still had my voice (which was a risk they warned me of before surgery since your vocal cords are in the same area).

Although the anesthesia took a while to wear off, I recovered well at home and basically just slept the first day. The next day, I realized how tight it was in my neck, and how hard it was to swallow and talk, or just move my neck in general.

They sent me home with pain meds, but it wasn’t really a pain I felt, it was more of just a general discomfort—especially at night. Although I slept the whole first day, I actually had a hard time sleeping the next couple nights.

For one thing, it was hard to really get comfortable, and had to try a variety of pillow configurations. The other thing was post-surgery anxiety and panic attacks, which I had no idea was even a thing.

I feel totally fine about everything now, so I’m surprised I was feeling that way looking back, but it really felt like I was recovering from a trauma, even though I knew everything went great and I was ok.

Taking off the steri-strips

About a week or two after surgery, this started to go away, though. Weirdly, the next thing I had awful anxiety about was taking the steri-strips off my incision.

I have no idea why I was so freaked out by this, but I was really scared to see my incision. My stitches were dissolvable, and the earliest appointment I could get for my follow-up was two weeks after, and my instructions said to take off the strips 10 days after surgery, so I got in a nice steam shower and literally had to just “rip off the bandaid” to get myself to take them off.

Thankfully, the incision looked amazing and I was so relieved my surgeon had done such a good job.

Scar Protection

It’s been hard protecting my scar from the sun during the middle of summer, but you’re supposed to put on sunblock or wear something over it to protect for a year after surgery because the new skin is very sensitive.

I was given a couple of recommendations for scar-care products too including Mederma (I got the day and night creams) and a couple of others I’ll have to look up names for.

I also started massaging my incision at night as recommended, to help with keeping the scar from being raised on my skin and to help with scar tissue healing.

Apparently, the huge “ball” you feel like you have in your throat, making swallowing so uncomfortable is all scar tissue. PROBABLY TMI, but I also found out in my follow-up that it’s normal to feel like you can’t move your neck at all because they have to cut through muscle during surgery.

Pathology report

Things were looking up, I got my first pathology report with a glowing “benign” and I really thought I was home-free.

Until I get the second pathology report. Apparently, they wanted to get a second opinion because the nodule structure was a bit strange. The result was: “hurthle cell carcinoma,” or thyroid cancer.

My heart dropped when my surgeon delivered the news. I already had a follow-up scheduled with him and my endocrinologist the week following, so I was hoping and praying for some positive answers.

I was told during my surgeon’s follow-up that I would most likely not need a second surgery and should be good to go, but they wanted us to be advised by my endocrinologist.

I had already made up my mind that everything was taken care of when we met with my endocrinologist. His advice was totally opposite from the surgeon’s though.

He wanted not only a second surgery to completely remove my thyroid, but he wanted to be aggressive about treatment because apparently, Hurthle cell cancer is one of the rare (only found in 3% of thyroid cancer cases), aggressively-spreading types of thyroid cancer. So, after more lab tests, another ultrasound, and a second surgery, he recommended we consider an MRI brain scan and radioactive iodine treatment.

This news was so completely opposite to what I had already accepted, I felt like my whole world was being turned upside down. I agreed though, that it was probably riskier to leave the whole thyroid in and went ahead and scheduled my second surgery.

I’m currently waiting to see if I can get in to see another endocrinologist, just to have as many opinions and information to make this decision and will update after surgery!