On my darkest days, I think I’ll never find the right dose of thyroid medication. On my brighter days, I’m hopeful the latest combination will be the magic key to unlocking my cells, and I’ll finish my days symptom free. The reality is probably somewhere in the middle.
I’ve been ‘at this’ a long time. As 30+ year survivor of Graves disease, I’ve seen a lot of changes come and go in my body, and I’ve swung from undermedicated to overmedicated and back again several times. Finding a good space with a regular, daily dose of thyroid medication is something I’m still searching for.
When did it all begin?
My hormonal issues started after the birth of my first child in 1990. I was 22 years old, a young, married new mother when my symptoms first began. I developed more severe symptoms and was unable to stabilize on a dose of propylthiouracil, despite taking ten pills a day. My illness was given a name – Graves disease – and radioactive iodine (RAI) treatment proposed as the best course of action. I chose the RAI.
The outcome
The result of the RAI (I had three treatments) was hypothyroidism. At first I didn’t require any thyroid replacement hormone. After the birth of my second child in 1993, I became hypothyroid and was prescribed Eltroxin (levothyroxine), or T4 hormone.
I did okay for the next few years, with some dose increases along the way. When I stopped smoking cigarettes in 2001 my medication stopped working. I didn’t know anything about free T3 (FT3) or free T4 (FT4) hormones back in those days – all I knew was that my TSH (thyroid stimulating hormone) kept rising and I was prescribed higher and higher doses of levothyroxine in an attempt to bring it down.
I never recovered my ability to take T4 only. Something in my body changed and I went from having some residual symptoms to full out hypothyroidism, despite the higher T4 dose. It was like it just wouldn’t work anymore. The TSH came down to “normal” levels, but I was far from normal.
The alternative therapy
I was very ill on my levothyroxine dose and my family doctor didn’t have any other options for me. I started to ‘dig’. I’d been using computers a long time, and I began to research. The information available to me in the early 2000’s was scarce, but I stumbled upon T3 therapy and found an endocrinologist who would prescribe it. At first it was life-changing. She combined a levothyroxine dose with T3 and it changed my life. I did well. The endocrinologist I saw readily admitted she had no experience prescribing T3, nor with monitoring it, and her errors over the next couple of years would again change my life forever.
Fast forward more than twenty years, and I have been undermedicated, overmedicated, almost optimal but never quite there. There have been so many mistakes, and losses that I can’t even begin to define. They encompass the realm of the physical, emotional, social, and spiritual aspects of my life and this thing…this thyroid, no thyroid thing…has taken so much from me. I try not to entertain thoughts of what I could have done or who I might have been without the heaviness of this. I hope this is where I can lay my burden down and that you, as the reader, finds something to lighten your journey as well.
The connection
I never knew another person like me, a person living without a thyroid. I know people who take thyroid medication, but not people who truly have no function. And then I met Kathy. We connected in a Facebook group and happened to ask each other a question via messenger. I don’t even remember what the question was, but this woman has been my rock. She’s always there for me to ask if she thinks I’m heading in the right direction, to go over labs with, or to look at research with. She’s the good part of this journey. Our connection has now manifested into this blog and my hope is that you may also feel a little less alone.