Total Thyroidectomy – My Story
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Before I had my thyroidectomy in 2020 I searched high and low for information about what to expect afterward. And I didn’t just mean after the surgery itself, but life. What would my quality of life be, how would I expect to feel, would I gain even more weight?
While I found a few stories on YouTube, I didn’t find much else beyond doctors telling the internet what a thyroidectomy will do or how it is performed.
I truly felt like I was going into the procedure alone.
*Disclaimer – in no way am I a doctor or medical professional. We highly recommend you talk with your own doctors to find the best option for your situation. This is not medical advice and is just my own personal story of total thyroidectomy.
Background
Diagnoses
I was 21 when I was diagnosed with Hypothyroidism. My symptoms first looked like a lazy college student because I was skipping class due to the inability to do anything but sleep. I also had constant brain fog and truly started to believe I was going insane.
It took months for a diagnosis, but once I had one there was a relief to the majority of my symptoms after I was put on synthetic thyroid hormones.
Misdiagnoses
Fast forward a few years later and my diagnosis was changed from hypothyroid to Hashimoto’s after I lost almost 100lbs and asked my doctor if I could go off of the medication.
If you are unfamiliar with this term, the general breakdown is that Hashimoto’s Disease is an autoimmune disease that attacks the thyroid.
Little did I know that I was actually in a hyperthyroid flareup. Something that doesn’t get talked about much within the Hashi’s community.
My flareup lasted about 3 years, which meant 3 years of living a lie and thinking I was getting better.
Hahaha! I didn’t know it was a flare-up at the time, but I think it might have come at the right time in my life because I started to exercise. This is when I felt the dreaded lump.
Thyroid Nodule or Thyroid Cancer?
The majority of thyroid nodules grow outwards at least this is what the internet told me at the time.
But I was the only one who could feel this lump. It was like a marble pushing on my neck muscles and popping back into place. The feeling started off when I was at the gym swimming, so naturally, I thought I pulled a muscle. However, it never really went away, nor did it hurt.
At my thyroid checkups, I asked numerous times about this lump I felt. They performed the palliative neck test where they ask you to swallow, but no doctor could feel what I was talking about.
Then one day, my new doctor ordered an ultrasound. The results showed a 1.6x2cm thyroid goiter on my left side.
A biopsy was done, but unfortunately, it came back undetermined and I lost my job 3 days later.
Fast forward to 2019. I was living in a new state with new insurance so I had to find my 3rd doctor. The feeling in my neck became constant and to the point, I struggled to turn my neck at all to the left.
Thankfully she listened to me. A new ultrasound was ordered and a biopsy was done. The same results came back undetermined for the biopsy, but to our surprise, the goiter was now 3cm x4.6cm.
It was a big old girl!
Knowing that conservative methods did not help me in the past, we talked about a partial thyroidectomy.
The Decision
I was referred to an endocrinology surgeon to discuss what needed to be done.
My doctor explained to me what would happen and what complications might happen. We also discussed lifelong problems.
Because we relied on the ultrasound as a guide to the final decision for either a partial or total thyroidectomy it was much easier to say yes to a total thyroidectomy despite not knowing exactly what to expect after.
I had already been on Synthroid for over 10 years and I knew there would not likely be a chance of going off of it. For many, this seemed to be a deciding factor, but when you have a routine down of when and how to take it you really see no difference in dosage sizes.
So we opted for a full thyroidectomy because 1) there were 3 other nodules on the right side (more of that later) 2) after surgery didn’t change my life at all 3) I really didn’t want to go through this for a second time when the right side flared.
These were my reasons for the decision, but everyone has a different experience. I highly recommend talking with your doctors about what is best for you.
The Surgery
My surgery went pretty well. The thyroid came out, I had a bunch of lymph nodes removed, however, my parathyroid needed a little extra care and was moved to a new location lower in my neck. My doctor also tested my vocal cord nerves while in surgery with a nerve stimulator.
All in all, I was in surgery for about 3 hours.
The Final Results
After surgery, the surgeon explained to Peter how the goiter was actually twice as large as expected and was cutting off my airway on the left side by 90%. This explained the weird wheezing I had developed over the last two years.
I didn’t get all the biopsy results back until my stitches came out and it was truly a surprise for both me and my doctors.
The largest nodule was completely benign. However, there was a small 0.4cm nodule on the right side that came back positive for papillary thyroid microcarcinoma cells. None of us paid this nodule any attention because it didn’t bother me!
Thankfully I didn’t need the radioactive iodine treatment, but not everyone is so lucky.
Recovering from Thyroidectomy
My recovery went pretty smoothly. I didn’t have an appetite so I lost about 12lbs in the two weeks post-op. Trust me, it wasn’t from a lack of Peter trying to get me to eat, I just didn’t want anything. So I lived off of protein shakes, pineapple popsicles, and potatoes during that time.
I was able to swallow fine, it just hurt like a sore throat.
Quality of Life After Total Thyroidectomy
One of my biggest fears was gaining even more weight. As the majority of the stories, you see show people complaining about weight gain.
While this is a possibility, science has shown it’s not as likely as we think.
For me personally, I have lost about 20lbs since surgery, and while I have a lot more to go, it’s still a beginning.
My diet however has drastically changed to help with the weight loss.
“Perimeter shopping” as we call it is the new normal in our house.
From fruit and veggies to chicken and turkey, it has been a lifestyle change for sure.
Overall for my situation, I’m glad I got the total thyroidectomy. I have more energy and less brain fog.
Granted the biggest downside is hitting us now.
Thyroidectomy and Trying to Conceive
That’s right, we hope to have a little bambino sometime in our lives, but the road to said baby isn’t your typical story.
Because I don’t have the thyroid hormones anymore I needed to wait to get my levels at a point where we can try to conceive.
When we did this, everything got put on hold again because we needed to address the PCOS situation.
It is frustrating, discouraging, heartbreaking to watch friends and individuals who really don’t want their kids have them while we are given red lights left and right on even trying.
This puts us in a weird location between infertility and trying to conceive that isn’t really talked about because while yes it is a form of “preparing my body” it is also a form of infertility despite not even being able to let the little swimmers try their job.
Thankfully, I have a great GYN who listens to me & is diligent about ensuring I am healthy enough not only to get pregnant but stay pregnant. But I will tell you, there have been a lot of tears shed when lab work doesn’t come back in our favor.
Since we are still on this journey I don’t really have much to comment on it besides for women trying to conceive after a thyroidectomy should make sure your hormone levels are safe for you.
Now granted I’m not a medical professional so please check with your doctor on this.
Final Thoughts
Having a total thyroidectomy is life-changing. For some it’s for the worse, others like myself would do it over again without any question if needed.
I weighed my pros and cons on the situation and what my life looked like with and without the thyroid. And ultimately that was what helped me make my final decision.
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