Tuesday, May 24, 2011

One day I stopped taking Synthroid.

"walk talk dance sing," the ground-breaking thyroid disease film is attached at the end of this post. This "little Hashimoto's film on a mission" is now on tour and also available to the public online. It is an informative, emotional and entertaining 75 minute docu-drama, made by Hashi-patient Donna-Lynne Larson (aka Bea True), receiving critical acclaim and positive reviews globally.

"INCREDIBLE. This is a must-see film about Hashimoto's." - Dana, hypothyroidmom.com

More film info below the post.



(Italicized section is from my book, 'This is what IT feels like.')...

“Here’s the scoop: all I have to do is take this little pill, everyday, for the rest of my life and I will be better. That’s what I’m told. That is very good news indeed! Although, truthfully, being instructed to take this medication EVERY DAY FOR THE REST OF MY LIFE made me uneasy. I don’t take any pills right now; I’m not dependent on anything; I’m free as a bird! But hey, if it’s going to make me better who am I to turn my nose up at losing my pill-virginity? I say bring it on! It’s only one little pill. I can handle this. This is really, really, really exciting knowing that I can now get back to my life. Thank you, Doctor!”   
That was then. This is now. That’s right, you guessed it.  I am no longer taking Synthroid, the most prescribed brand of levothyroxine. I stopped taking it. And, guess what? I am still alive.
You can imagine my trepidation, my fear. Having been told that I must take my little blue pill for the rest of my life, I was terrified of what might happen if I stopped. Dear God, for all I know, I might die for crying out loud!  
So, why stop? Why take the risk?
Well, after six years of trying desperately to feel better, thinking the entire problem was based on my deteriorating condition, continually re-dosing and re-testing without any progress towards “feeling better” at all, EVER, it finally dawned on me that “just maybe” I shouldn’t be taking this drug in the first place. And, if I did die, what would I stand to lose? 
Seriously. Oh yes folks, for those of you on the outside looking in, it gets that bad.

Now, why didn’t I just stop taking that little blue pill after the first few weeks of misery you’re wondering? That’s a question that haunts me to this day. How I wish I had stopped immediately and explored other options.

Looking back, anything would have been better, even maintaining my original symptoms, versus stumbling about like a drugged-out- freaky-zombie. But, every time I went to my doctor (by myself I might add — I had not yet learned the importance of bringing along my advocate!) she continued to assure me that I would feel better, just give it “more time.”

Hey, I was stoned and freaked, how could I say no to her? It’s what I wanted to hear, and with no energy, no focus and no brain to think otherwise, I just kept on keeping on.

Besides, I had no reason to believe my doctor was not going to make me feel better; I had never needed to rely on doctors for anything beyond the occasional bout of strep throat or the flu.
But, somehow “more time” turned into six years, and my “fancy new normal” had set in: a life of utter and complete crappiness! Those of you struggling know exactly what I am talking about.
Here’s how it all went down, “the big switcheroo”...
One year ago I finally “knew” that it was time to take action. If I didn’t, I saw only a dismal, dark future--years of deepening pain and shame lie ahead.  Charlie and I had been devouring as many books as possible on the subject of thyroid disease, each one (and there are a gazillion!) professing all kinds of cures and all, unfortunately, coming up short. 

Then one day, during my online search for answers and hope, I came across something that made some sense. This gal had written a book that grabbed me, if only for the title itself, which made me feel happy inside. ‘Stop the Thyroid Madness’,  by Janie A. Bowthorpe, clearly and concisely pointed out why I might be better off taking a natural hormone replacement pill versus this other synthetic stuff I had been taking.

Charlie and I both read the book, then re-read it, checking and re-checking, before making a move. Luckily, we also had heaps of my test results to refer to, studying them like mad scientists, convinced that the sought after life-changing clue would reveal itself, in time. (In hindsight, med school would have been faster. Although, based on my experience with that establishment, I believe it would have taught me to NOT dig deeper, to NOT seek the answer, and to remain complacent with the ineffective status quo.)

The clue did reveal itself. I noticed that, even when we adjusted my Synthroid dosage (synthetic T4), my free T3 would always hover in the low normal range. Every once in a while it would creep up to mid-range, but then my free T4 was sky high and I was still feeling crappy. In reading 'STTM,' I learned that most patients felt much improved when their free T4 was in the low normal range and their freeT3 was in the high normal range. I had never been able to achieve this while doing the trendy dosing dance with Synthroid. 

One endocrinologist told me to NEVER worry about my free T3 and free T4, just go with the TSH, that's the only "number" that matters. While I sat in front of her slopping up my tears, with a TSH of 3.0 and symptoms galore, she happily told me, "It's normal." That was all she had to say as she sent me away thinking that something else must be wrong with me.  As I exited the waiting room, it occurred to me that all the folks coming and going look so sick and useless....don't they ever get better?

So, ok, that's great, right? It's normal, I'm normal, it's all just so goddarned normal it's sickening. It must be all in my head. I must be making up all these symptoms, OR something else is terribly wrong with me! Not so fast...

 Apparently, the truth is we were just overloading my system with T4 and never once acknowledging the obvious fact that my body was not converting the synthetic T4 to T3, the all important "worker hormone," which was what I needed to feel “sort of” good again.

This obvious oversight was only made known after Charlie and I scoured my previous test results, read STTM, and put the pieces together ourselves. The fact of the matter is that taking natural thyroid hormone replacement would actually give me T4, the necessary T3, and even some T1 and T2. Synthroid was only giving me synthetic T4, which I was unable to convert.

Good Lord, this entire, ridiculous process was debilitating for me, for Charlie, and in the end, was obviously, without any doubt, completely insane: doing the same thing over and over again and expecting different results.


So, one day, I did it. I woke up at my regular pill-taking time, and after over two thousand mornings of dutifully dosing with Synthroid, I did something different. I took natural thyroid hormone instead.  

“You have to keep an eye on me, Charlie”, I instructed uneasily, “I might not know what I am doing, I might go blind, or try to jump off the balcony, or go into cardiac arrest, or God knows what else…just watch me, ok?”

And of course, Charlie kept an eye on me. He kept both eyes on me, as he had been doing all along. 

We weren’t exactly sure how to dose with this new pill, which I must say felt more like taking a vitamin than a drug. Right or wrong, I simply felt happier taking something that was not synthetic. When I mustered up the courage and asked my doctor to make the switch to desiccated  thyroid hormone, she knew what I was talking about-- it’s been around for years, since way before Synthroid hit the market. She was willing to oblige my request (I think she just wanted me to go away) but was not really sure how to prescribe it. That’s understandable. All of her patients, as she tells me, are "doing fine" on Synthroid. You can imagine how that just made me feel so much better knowing that I am “the worst thyroid patient EVER on the entire planet.” Everyone else is doing just fine. 


I have to say here that I do know a few people who say they are fine on Synthroid, but truthfully, when I dig a bit deeper, I discover they have a bunch of other pills in their medicine cabinets, don’t look so fine, and they seem to be less functional than they once were. Anyhow, it might be that their version of fine is very different from mine.

Back to the “switcheroo”…   

It was Charlie and I who had the foresight to determine that the Synthroid would take six to eight weeks to leave my system so I would need to gradually add this natural thyroid hormone to avoid going into an uncomfortable hyper state— which could very well have seen me leaping off the balcony!

Now, I have to tell you about two very interesting events that occurred during this process. The first evening on the new regimen, as I was falling asleep, an unexpected thing happened. I had a very calm and peaceful sense in my body, and I heard a whisper of sorts, a quiet “thank you." It was very clear and soothing, on what felt like an energetic or cellular level-- it resonated throughout my entire body. I know it sounds very "woo woo" and new-agey, but that is what happened. I felt a wave of relaxation, relief and appreciation. I slept like a happy baby. 

The other interesting event occurred at the start of my cycle that first month off of levothyroxine. I had a cleansing that I had never experienced before. Yes folks, we are talking about diarrhea (something less new-agey!), and let me tell you, it was unlike any purge I have ever experienced in my life! It was fantastic! To help put this in perspective, I actually had a waist again! I understood this to mean my body had apparently stored up a lot of toxic stuff it did not know how to process...and it was finnnaallly leaving me, forever! I felt such relief and gratitude. Slept like a happy baby once again.

The whole process took some careful monitoring, both with blood work and evaluation of symptoms, to eventually come to a place of new comfort. Charlie and I were pretty much on our own with this, uncertain as heck every step of the way, but feeling we had no other recourse. In the end, this decision turned out to be the best thing that has happened to me in many years.

I am not saying it’s all hunky-dory now. There is a marked improvement in brain function, energy, mood, digestion, bowel function (yipee!), sleep patterns, and focus. But, I am still not “better.” My hair stopped falling out for a couple of months which was thrilling! But now has started again, which I think might be exacerbated by some recent stressful events.

Overall, this has definitely proved to be a better treatment for me and my "symptom" of insufficient hormone production, but the real answer to feeling better would be a "cure" and an end to this ridiculous "life sucking" epidemic. We really need to find a way to stop the body from attacking itself. The millions who suffer with this autoimmune dis-ease, and the future of our loved ones, deserve more than a band-aid solution, more than the superficial, exhausting and demoralizing on-going treatment of symptoms.

In the meantime, this is what is working “better” for me.

The big question: what's it going to take to actually end this epidemic?

Questions? Contact Donna-Lynne (Bea True) here 

"We're changing the Hashimoto's affair one enlightened viewer at a time."  (And yes, we are a sponsor/advertiser free film!)

About the film: This raw, real, and artsy docu-drama, made by a Hashimoto's patient, takes a moving look at thyroid disease from the patients' perspective. It is an informative and provocative film that raises public awareness and deepens our understanding, while also setting the stage for a shift towards ending this insidious health epidemic.

We encourage all thyroid patients to view this with those they live and work with. It will make a world of difference.

Viewer Responses:

"Wow! Just wow! I felt so much watching this and quite frankly I haven't felt a lot in a long time."  - Marsha, thyroid patient

 "A wonderful, little “Must-See” thyroid movie!"- Danna LaRue, Founder, thyroidnation.com

 "A powerful and captivating artistic portrayal of the Hashimoto's journey" --thyroidpharmacist.com

"Thank you so much for bringing light, not only to Hashimoto's, but to the many women (and men) who have had to live in the isolated shadows caused by ignorance and illness."-staceyrobbins.com, Author of "You're Not Crazy and You're Not Alone"

"This is an enormously important film that should be Required Viewing by all doctors who we seek out. And for all thyroid patients who want to be free. Thank you for making this film." - MW, thyroid patient

"OMG OMG OMG - every single word and feeling expressed in this documentary I relate to - I GOT A GLIMPSE OF MY REAL TRUTH. PLEASE IF YOU HAVE HASHIMOTOS OR YOU LOVE SOMEONE WITH HASHIMOTOS - please please please please please watch this. It goes for an hour but this has been one of the most healing hours of my journey. PEACE." -- Kassandra, thyroid patient

And the popular tune, from the film, "MR. HASHIMOTO" is available here