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Losing It – A Thyroid Story

keep calm and eat cookies

Three weeks ago, I lost my thyroid. The whole thing. Never thought I’d put total thyroidectomy on the calendar.

During a regular checkup, my primary care doctor felt a lump on the right side of my thyroid, so she referred me to an endocrinologist. Last February, I got an ultrasound and had several fine needle biopsies, which came back indeterminate. But let’s hear it for advances in technology. Veracyte, a San Francisco startup, can determine pathology on the molecular level. Benign in February. Great, because I didn’t want to think about needles and tests anymore.

Six months later

I didn’t feel well. I knew something was up during the ultrasound followup. The tech said nothing, but spent a lot of time getting images on the left side. Then a biopsy in late August came back from Veracyte as “suspicious for malignancy.” The endocrinologist referred me to an experienced surgeon. He was warm and friendly in a way that you wouldn’t expect from a surgeon. Scheduling a surgery date felt surreal.

Getting ready

“Do you have any questions?” asked an anesthesiologist at pre-op testing.

“Will I be able to go to the Stevie Wonder concert?”

Doctor nodded yes. “You might not feel like dancing, but you’ll be okay.”

No outside food is allowed at the concert, which isn’t a big deal unless you made a resolution involving chocolate. Every evening, I have a brownie at eight. To smuggle or not . . . maybe security will see my scar and take pity on me.

Nope. Forget the brownie.

You asked about a concert?

Yes, I did. Something about bucket lists. Unknowns. And my favorite song, I Wish.

The big day

Surgery went well. But when I woke up, I begged for ice packs. On my head. The back of my neck. Never been so warm in my life. I stayed overnight in the hospital and admit that getting breakfast in bed the next morning was pretty great. I really should get out more.

A few days later

When a surgeon calls you at home on a weekend . . . all I could think was “oh, shit.” He called to confirm it was papillary thyroid cancer and said surgical margins were clear. Surgical margins clear, he repeated. I was holding the phone and yet, not speaking. Part of it was post-surgery hoarseness, but mostly just shock.

Three weeks post-op

It’s been an adjustment, for sure. They say it takes four to six weeks for thyroid replacement medicine to kick in. From what I’ve heard, it can take some time for people to get their ideal dose. Doctors estimate starting dose based on weight, but err on the side of under dosing.

Four weeks post-op

I followed up with the endocrinologist. You’d think that having celiac disease would have prepared me for a medical professional who was totally dismissive. But no. Prior to all this, I had no idea what many patients go through after surgery. Then I started googling. An excellent piece: Your thyroid may be talking, but is the doctor listening?

I have an appointment with a different endo in December. Fingers crossed.

Sorry for the rant.

I feel lucky in many ways. Thyroid cancers are among the most treatable and it was caught early. And I got to hear Stevie Wonder in concert. I said I wouldn’t be dancing, but couldn’t help myself. Thoroughly exhausted the day after. But it was the best concert ever. Just thinking about all the great moments makes me feel better.

Comments

  1. Hi Linda–I’ve been wondering what you’ve been up to. I hoped it was something fun! I’m so glad you’re doing well after this ordeal, but gosh darn it, I wish you hadn’t had to go through it! I would have mailed you some cookies or something had I known. 😉 Sending you lots of healing hugs and visualizing you having a blast at the Stevie Wonder concert!

    xoxo,
    Shirley

  2. Hope you heal up and feel great soon! Sorry for the ordeal, but it sounds like your surgeon is amazing and knows exactly what to do.

  3. Jodi from NE Ohio says:

    OMG……your story sounds a lot like mine. I had a total thyroidectomy in October 2013 at the age of 45. They could not say definitively if it was Papillary Thyroid Cancer until it was out and sure enough it was. It all started with a kidney infection in April 2013 and it has been hell since. They did an endoscopy while I was in the hospital for the 3rd time and found out I have celiac disease. I’ve been gf since October 2013 and still adjusting. I love to bake and cook, now it’s just a bigger challenge.
    Yes, it does take time to find your right dose. I’m still working on that. Sometimes my doctor has to up it and sometimes lower it, it just depends on so many things. Make sure you are taking your calcium, my doctor was adamant about that! Also, your iron and vitamin D levels are very important, keep an eye on them.

    Best of luck and God bless you,
    Jodi Walters

    • Thank you, Jodi! They started checking calcium levels, etc in the hospital. Thanks for leaving a comment about that, though. I read horror stories online about the parathyroids getting jostled around, and the effect of low calcium levels after this surgery. Thank goodness I was referred to a good surgeon. Wishing you all the best as well!

  4. Glad to hear you are doing okay! Enjoy the concert!!

  5. Lisa Baker says:

    Linda,
    I’m glad they found it early. I hope you’re back to normal soon.
    The un-Baker, Lisa

  6. It took less than 5 weeks for the replacement hormone to kick in for me. It did take time to get the right amount. So glad that they got it early.

  7. So sorry to hear about your thyroid surgery, thankfully they found it before it was too late, hope you are feeling better soon.