I made it!

celebrating making it to 70

Today is my 70th birthday, putting me at the leading edge of the Baby Boomers. We are a huge group on the verge of change—much of it to do with our health. Our biggest challenge is navigating the healthcare culture and coming out intact rather than broken. I have firsthand experience with that, and over the next while I’ll be sharing what I’ve learned.

This is not a blog about tips, though I will give you some. It is not about which experts have the right answers, though I’ll point you to valuable resources. It is really a blog about mindsets and viewpoints that serve us, and what it takes to make your own life when faced with a disempowering system.

I hope you will come to understand the importance of self-awareness and how we think. That’s why you’ll often see the word “perspective” in my writing. These perspectives have come from my experience in navigating the healthcare culture to figure out how to help my body return to normal functioning.

As with all stories, there are many ways in. For now we’ll start with my greatly enlarged thyroid. This is me, cutting the cake on my 52nd birthday at Schumacher College in Devon, England. Long hair was a somewhat-effective camouflage strategy.

52nd birthday

This next photo shows me two months later, ready to set out for five weeks of travel around the Mediterranean. Not surprisingly, I have very few pictures with my neck exposed, but here I was preparing for hot weather so there it is.

dressed for Italy

Five years after that, the thyroid was coming out.  “Simple,” the surgeon said. “I’ll remove it completely and give you thyroid replacement hormone to take daily.”

You likely won’t be surprised to hear that it wasn’t so simple.

The surgery went finetricky because of the degree of enlargement, but she was an excellent surgeon and got the job done. I will be forever grateful for her skill and care in stitching the large L-shaped incision. Today only a silvery line remains, barely noticeable. I don’t think the surgery could have gone better, but…

The hormone replacement was another story completely. She prescribed Synthroid, which is considered the gold standard these days. Within 2 months, I had gained 20 pounds and my waist increased by 5 inches (that is not a typo). Ever-expanding rolls of fat started appearing above and below my non-existent waistline. I was blimping up like the Michelin Man and this felt completely out of my control, no matter what I did or didn’t do.

By the end of the third month, my left knee was so fiery and swollen that I’d be wakened at night if the bed sheet or my other leg touched it.

I became weak in ways I never would have imagined. I could no longer lift a 1-litre bottle of olive oil with one hand, and stopped storing it in the cupboard above the stove because I was afraid I’d drop it and break the glass stovetop. I had to ask my pharmacy to stop putting childproof caps on my thyroid prescription. That was a shock, and also humbling.

By then I was back teaching my college class in consumer issues. I had to take the elevator to my classroom because I could no longer climb stairs. I couldn’t write on the blackboard without making errors and forgetting how to spell words. Foggy brain was a new experience for me. It was humiliating and disconcerting.

Standing for 80 minutes in shoes with heels had become impossible. I had barely enough energy to make it through a class, and none extra to put into standing on heels.

Driving my car was becoming frightening. I began feeling overwhelmed by the traffic around me, even on familiar streets. When I had to make a left turn, I’d triple-check and still be afraid of making a disastrous mistake. I found myself planning routes that avoided left turns even if they were the longer way around. I felt 95, and wondered how long it would be before I’d end up in a nursing home.

I was 57 years old. I thought: This cannot be right. This cannot be normal. What is wrong here?

That was January 2004, so I had a computer and internet access by then. I began to research. Knee pain, bursitis; blood pressure (did I mention my usually normal blood pressure had gone sky high); weight gain, Syndrome X; thyroid replacement medications and their effectiveness, side effects, and alternatives.

This desperate searching turned up one small study of people with total thyroidectomies who had experienced brain fog while being treated with Synthroid. Subjects were given desiccated thyroid tablets instead of Synthroid to see if it made a difference. It did. I was encouraged for the first time in five months.

This study turned up just in time for me to take a copy to my regularly scheduled appointment that afternoon. I was very tense waiting for my doctor. I knew deep down there was a lot at stake here. I had to convince her to prescribe this alternate medication, even though it is rarely used these days. It felt like a matter of life or death.

The exam room door opened, and she greeted me with a big smile. “I’m glad to see you doing so well. Your test results are exactly where they should be.”

Stunned, I blurted out, “Then why do I feel like I’m dying?” 

I’ve often thought how lucky it was that I didn’t wait another ten years until I was 67 to have my thyroid removed. More from that perspective next week. In the meantime, questions and conversation are welcome.

4 thoughts on “I made it!

  1. Wow you have me on the edge of my seat! I am so sorry this happened to you. I have a bunch of “why” questions …why did you not address it before it got so BIG? Why did it get so big? Why did you not get a second opinion? Why was surgery the best solution? Etc etc of course I. I can guess on the answers because you are no different than most including me where a crisis with my Heath seems to have to happen before I take any action but find hours to help my mom , kids or husband with a health issue they have.

    • Great questions Wendy, and I’m guessing others might also be wondering about the backstory. It got me thinking, why do I do what I do?

      In this case, it was the belief that there had to be a better way, coupled with the knowledge that all the parts of our bodies are there for good reason and it’s best to keep them if we can.

      The enlargement was discovered in 1987. That was pre-Internet, and I had no previous experience with serious illness. The first specialist gave me six weeks of Synthroid (didn’t work) and then offered surgery. I thought there had to be another way and asked for a referral to someone else. By then I’d done some reading about thyroid support, so I asked the new specialist about trying an alternative prescription like desiccated thyroid. His reply: “If that’s what you want, you’ll have to find out about it yourself. We don’t do that.” Clearly, I was going to be on my own in resolving this.

      The pictures in this blog were taken eleven years after the initial discovery by my GP. While I was in England that year, I consulted a holistic nutritionist who had cured herself of MS. I learned many things beyond my university nutrition training, but nothing that reversed the thyroid enlargement.

      Back in Canada, I continued to investigate and try as many angles as I could. Periodically, the doctor ordered scans to make sure there was no malignancy… and still had nothing more to offer. In 2003, I felt I’d reached the end of what I could do. It was time. And I was fortunate to find a highly recommended surgeon who I trusted.

      If my thyroid had been removed by the first specialist in 1987, I would have skipped the years of living with a disfiguring enlargement. But he would have undoubtedly prescribed Synthroid, which doesn’t compute in my body, and I would have been at a disadvantage with no Internet to facilitate learning about alternatives that could be used instead of Synthroid.

      I would never have said,”This is an experience I’d like to have.” But I’m also aware that I’ve learned a lot and experienced considerable personal growth because of it.

      One of the takeaways is that we each do what we do for our own reasons. I’ve learned that observation of my responses to difficult experiences provides information and potential for growth.

      I wonder what awareness others have gained from their personal adversities?

  2. Thanks for the back story. I’m a big picture thinker & that really helped to understand better your story.
    I also like how you are framing your story to confronting adversity & moving forward with the benefit of lessons learned & the desire to view challenges as stepping stones not stumbling blocks so to speak . I too have chosen to see my failures & adversity in such a way & I have had many of those ! I wonder if only optimists & realists can do that so “cup half full ” people ? Anyway those are the people I want to surround myself with these days & ones that are ok about telling their stories so I too can learn from their mistakes & in doing so enable & enrich my life. So your story is valuable as well as enjoyable to me & thank you for the stepping out with it.

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