Do you follow one or two “expert” thyroid professionals online? Do you spend time listening to podcasts, Google searching “thyroid hormones”, or “optimal thyroid levels”? I have spent far too many hours on that last search term and it’s led me to many places; not all of them good.
I’m choosier than I’ve ever been about what I believe to be true when it comes to my treatment. When T4 (Synthroid) therapy began to fail me in the early 2000’s, I started to ‘dig’ online. I stumbled across an endocrinologist named Dr. Ridha Arem, who was saying something new. Something my family doctor wasn’t familiar with – that some patients also need T3. I bought his book (first edition), “The Thyroid Solution”, and learned a great deal about my illness, and what had happened to me. I was diagnosed with Graves when I was just over twenty years old, and the impact of what I would face in my lifetime because of my illness and subsequent RAI treatment wasn’t something I could comprehend at that time. I was also told “one little pill for the rest of your life” would solve everything. It was presented as a simple solution and no big deal, really. I think that doctors at the time truly believed that, and unfortunately many of them still do.
So I found my first guru and had such high hopes for what could be possible. Armed with my new information, I approached my family doctor and got a referral to an endo who prescribed me T3 in addition to my Synthroid. I now realize that I was terribly overdosed at first, but the difference it made in my life was so remarkable, it didn’t occur to me that the dose was wrong.
Dr. Arem did provide a bit of dosing information in the book but it was a small portion and it wasn’t clear to me what doses should be used, and heck, I was being prescribed by an endocrinologist. I had some faith in her, even if she hadn’t dosed T3 before – after all, they have a wealth of information available to them, as well as colleagues to collaborate with – don’t they?
A Google dive shows me that Dr. Arem is still working and has created a wellness program centred around his principles of addressing the whole body, which includes balancing thyroid hormone, of course. He is still working with T4 and T3 medication combinations. I also purchased the third edition of his book.
Some of us seek out, or stumble across alternative medicine, often called “alt med”. The voices of alt med seem to be the loudest; perhaps because people have been dissatisfied with their thyroid therapy and credible physicians have generally said nothing. The tide seems to be shifting, however, with conventional researchers and doctors lending their voice to the mix; finally.
I followed along with some alt med practitioners, and still do have a listen or a read from time to time. I have been a voracious reader of all things thyroid, but two that have been on the scene for a while come to mind:
Dr. Christianson, a naturopathic physician with an interest in thyroid. His area of interest seems to have shifted to de-prescribing thyroid hormone. This is a relatively new area of work that’s come about because, from what I understand, many people were put on thyroid hormone when it was unclear whether they actually needed it. I think it’s a valuable area of work, but not of any use to me, a patient with primary hypothyroidism and no thyroid function.
Dr. Westin Childs was an osteopathic physician who is no longer practicing. He sells some supplements, and offers thyroid information and resources. He’s been pretty active online, so you’ll run across his information regularly.
As my knowledge has grown, so have my search parameters. I have spent countless hours listening to many self proclaimed thyroid experts who talk a lot about optimal thyroid levels. I don’t know where you’re at in your journey, but if you found your way here, you’ve been doing some searching too.
I can’t remember where I first heard of Dr. Antonio Bianco, but I read his clinical research article “Comparative Effectiveness of of Levothyroxine, Desiccated Thyroid Extract, and Levothyroxine + Liothyronine” in June 2021 when it came out. I was elated! Finally there was a doctor, not just a respected doctor, but the past President of the American Thyroid Association, and he was speaking my language. You see, no matter how much my therapy with T3 has been a nightmare at times, T4 only, when it failed, was worse.
I’ve been on the exact magic dose more than once. But it’s always been as I was going up, or going down on a dose, so I never know where that sweet spot was. I’ve not lost hope that I’ll find it. I’ve stopped playing what I call “pin the dose on the sweet spot”. The game where I pick dose A and dose B because I think it could be the winning combination. Doctors play this too – dropping or increasing doses by far too much. My body is now 55 years old and even 5mcg of T4 is a lot for it to cope with – in either direction. My combination dose recently became too much and I decreased the Cytomel by 1.25mcg for several weeks. Now I’m finding I need to reduce again. Will it be the final shift? Wouldn’t that be lovely? Lol. But what I will not do is radically change anything. Baby steps, careful considerations, and timely evaluations will bring me to my dose. This is new territory for me.
I printed off Dr. Bianco’s paper and added it to my thick file of thyroid “stuff”. I waited for his book for months. I pre-ordered “Rethinking Hypothyroidism: Why Treatment Must Change and What Patients Can Do”, and even though I knew the release date, I would occasionally go and look at my purchase; willing it to arrive early. The Kindle version came out and I bought it and started my usual skimming – searching for clues, magical dose combinations, all the things I’d waited so impatiently for – and didn’t find them. In retrospect, I believe I hoped it was going to magically reveal my exact dose combination and somehow tell me what to do.
I started at the beginning when the physical book arrived and read it cover to cover. I appreciated learning more about the history of thyroid disease and care; the journey that’s brought us to today. What I felt was a level of excitement that’s stuck with me. I’m excited to hear that work is still being done, that researchers are still seeking better answers than we’ve had up to now. I’m excited that the complexity of thyroid action is being respected, and that medication options are opening up. I’m hopeful that my dying days won’t be spent in a nursing home calling out for medication that doesn’t come because my TSH is 5 and it’s in the normal range. Maybe that’s a fate I can stop fearing someday.
I have much respect for Dr. Bianco for speaking out and calling for change. And not just by passively writing a book! Dr. Bianco is appearing on podcasts on all kinds of platforms; spreading his message. And it is a message of hope for patients. So in real time, I guess he’s my guru. Thank you, Dr. Bianco!
Because this is a chronological blog you guys get to experience our failures and successes in a time stamped fashion. We hope that this will enable our readers to learn from our past experiences, symptoms and screw ups, while gaining knowledge from what we have been through.
Please always keep in mind that our posts are written from our experiences. We too are always learning, reading, researching and trying to figure out the needs of our bodies. Sometimes what we say in our posts changes over time: we do more research or we have settled into a dose that we thought was right but now just isn’t. Things change…. and so do we!
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