“True strength is keeping yourself together
when everyone would understand if you fell apart.”
I’ve often thought it’s a good thing my body fell apart when I was in my fifties, not my sixties. If I had been 67, I might have bought into the cultural story that I was just getting old and this was to be expected. However, at 57, I kept thinking This can’t be right. This can’t be normal.
Thirteen years of navigating the healthcare culture has made me aware of its many disempowering premises. Perhaps the most insidious is the belief that body function declines as we get older, that’s just the way it is, and there’s not much we can do about it except maybe take some pills so we don’t notice as much. These medications are prescribed for patients, not people. The role of patient, as assigned by the healthcare culture, is to receive treatment, not participate in it.
Officially there is now some effort toward patient-centred care. In theory, this means “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions” (definition from the Institute of Medicine).
In practice, I’ve occasionally been asked questions that pretend to engage me but are actually rhetorical, with no thoughtful response wanted. Most often, I’ve been told what the right thing is to do. And although I’m ostensibly offered the choice to participate, when I choose another course of action, the disapproval is clear.
Until the system operates from the viewpoint of person and doctor as partners, there will be no real change.
To her credit, my original GP seriously considered my request to switch from Synthroid (a metabolic disaster for me) to desiccated thyroid on the basis of a study I had found. Because there was an actual study (not just an article) and I brought her a copy to review, she agreed to change my prescription although “this is a medication we just don’t use any more.” Within a couple days my brain fog lifted and I was able to function better. A good thing, since I really needed my wits about me in the years that followed.
I might have gone on happily with her for the rest of my life, had it not been for changes in the clinic that required me to go elsewhere. For a while I found help from a medical doctor who had good intuition and training in Chinese Medicine. He tweaked my thyroid replacement by combining triiodothyronine (aka T3) with the desiccated thyroid. This improved my energy to the extent I was able to make it past suppertime each day before falling into bed completely spent.
Then that doctor retired and I found myself searching for someone to write my next prescription. Remember, I have no thyroid gland to produce hormones, so am totally dependent on the prescribed replacement. This was very scary for me because it meant I had to get past a gatekeeper to obtain what I knew I needed.
Experience had taught me that I must not be put back on the standard prescription, Synthroid. It doesn’t compute in my body. Here’s how I described it in a medical history I prepared for subsequent doctors:
While on Synthroid, it was as if I were swimming underwater holding my breath, and periodically someone would feed me a teaspoon of air—just enough to keep me from dying. When I switched to desiccated thyroid, it felt as if I’d broken through the surface of the water and knew that I had access to what I needed to keep going.
The first challenge was finding any doctor taking new patients. I located the official list on-line, read reviews, and selected someone—only to discover that the list was in error and he was a locum who was leaving in a month. However, he listened carefully to my medical history and gave me a one-year renewal. The next year, I saw his replacement. The year after that, I saw his replacement.
And so I limped along. Nine years post-thyroidectomy, I ended up at a new clinic just as it came to light that I had endometrial cancer. My blood tests showed high TSH, which means thyroid function is out of whack, and my blood pressure was well past acceptable. What a mess!
As you might imagine, I was plunged into meeting a whole retinue of doctors who did not know me—new GP, oncologists, an internist. The surgery went well and I declined prophylactic chemo.
Once again, it was the aftermath of surgery that left me feeling discounted and totally on my own. I was in the internist’s office a couple months later. My thyroid levels were still not good and I was ballooning up even more.
I’d been reading about hormones and their interrelationships, and wondered if the stress of the ineffective thyroid replacement had weakened my adrenals. Her response: “I know you’d like me to tell you it’s hormones causing your weight. But the truth is, you just have to count your calories and exercise more.”
Such an old school view of what the body needs to function normally! Give me a break, I thought.
I got that break a few months later. I was on a long waiting list for a functional medicine doctor and, miraculously, she had a cancellation that got me in sooner rather than later.
I left that first appointment almost in tears— tears of relief. I had finally found a doctor and an approach that started from the premise that my experience was worth something, and that we could be partners on this journey.
I’m a systems thinker. Until that moment, I had no idea there was a branch of medicine that saw people as functional systems. More about that revelation next time. In the meantime, questions and conversation are welcome.
Thank you Laurana
This instalment prompted me to forward to two friends who will definitely relate and may even be helped by your story being shared
Shared stories are so important for the insights and understanding we can gain—including the knowledge that we are not alone. I appreciate your helping this happen, Susan.
Hi Laurana,thank you for sharing your experience. In the early 90’s I have 3/4 of my thyroid remove due to a goiter and now they have found a few nodes in my remaining 1/4 thyroid. Your description of the water is so very close to how I feel but I have a great deal of muscle pain. I was curious,do you have any body pain? I’ve lost 15lbs in 3 weeks,nausea,fever but no infection.
I have a great Nurse practitioner and I actually cried while she listened,she listened!? I am now 5meds compared to 10 meds a couple of months ago and on B12 shots.
I was sent your blog by a mutual friend and she’s correct,reading your blog has made me feel like,it’s not in my head,there’sothers that are out there,thank you again!.
You’re welcome, Shelley. I know how devastating it can be to feel completely alone in this, so I’m glad you have a good nurse in your corner. You asked about my experience with body pain. I had it, now I don’t. Mine was joint pain (sore fingers and weak hands, couldn’t walk stairs, fell into chairs because knees were so inflamed). Thyroid has such an important role in the body that, when it’s out of whack, many other systems cannot function normally.The result is inflammation, and this relates to the autoimmune nature of much thyroid disease.
If you haven’t discovered Dr. Amy Myers, you might want to have a look at her books The Autoimmune Solution and The Thyroid Connection. She’s an MD who, as I recall, had to solve her own thyroid issues. Her protocol is set up to guide you to remove all typically inflammatory foods for a month and see what happens. We are all unique, so what works for me might not work for you, but this is a really good place to start in solving your unique metabolic dysfunction. Thanks for writing, and best wishes.