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.
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.
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 fine—tricky 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.