Tuesday, May 24, 2011

One day I stopped taking Synthroid.

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(Italicized sections are excerpts below are 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? 
"Knowing"
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.
I am not one to talk “specifics” when it comes to treatment (you’ll notice I have not mentioned TSH, T3 or T4 once since we began this story) because, as I am sure you are aware by now, I am most interested in the bigger issues at hand, the real story, the important stuff-- the stuff that, once brought to the light and resolved, will allow us to get underneath what “appears” to be a gigantic, powerful, greedy hog of a problem and heave it over. It'll topple and tumble to the ground like an old, feeble, floppy buffoon. Only then will we finally be able to start fresh, with a clear, unobstructed vision, and our hearts wide open...healing on the way!
However, in the meantime, I will make an exception and share the specifics, numbers and such, because they are kind of juicy, and I am sure the enlightened point to all this will eventually reveal itself.
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, obviously, coming up short. (How do these books actually get published?) Then one day, during my online search for answers and hope, I came across something that made some sort of sense. Now, again, as you know, I am not one to endorse any of the redundant, useless books out there that continue to ensure we will never move towards an actual cure (sure, let’s recycle constipation remedies over and over and over again!) but this one 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, I believe it would have taught me to NOT dig deeper, to NOT seek the answer, and to remain complacent.)

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. While I sat 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. I exited the waiting room, noting 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 (listen up if you're an endo who still likes to send people away with "normal" TSH) 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, 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.


Ahhh!


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. She should know-- 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 like “the worst thyroid patient EVER on the entire planet.” Everyone else is doing just fine. 


Ahhh! 


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— which they chalk up to age, even though they are in their forties and fifties!  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 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, 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." We really need to find a way to stop the body from attacking the thyroid. This autoimmune dis-ease, and the "millions" who suffer, deserve more than a band-aid solution and more than the silly and expensive on-going treatment of symptoms. Seriously. Case closed.


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

Now, as promised, let’s get back to what I am most passionate about: the bigger story here, that which moves me in the right direction, in spite of societal pressure to follow the deeply ingrained status quo, no matter how ridiculous, absurd or debiliating. Believe me, I am fully cognizant of the fact this “dis-ease” is moving me along my path of authenticity and wholeness, whether I like it or not…and for that I am grateful, just not always so enlightened as to feel that gratitude during the “less-than-comfy” instances that are part of this uninvited (or “unconsciously invited” some new-agers might say) trek… 


“My guess is I knew on some unconscious level that opening to my own inner wisdom would eradicate so many of my long-held beliefs, and that frightened me. Sure, I’m embarrassed to acknowledge it. How can something so wimpy and ungraspable matter? I’ve been taught to believe in that which is tough, hard, invincible, resilient, firm, and most importantly, visible. I certainly can’t bottle it, label it, and send it out for delivery. That’s probably why, as a society, we have fervently banished this “heart-full-ness” from our way of living. It is a shame I ever closed it off. I’m pretty sure it was wide-open when I arrived on this planet (or more accurately, just prior to arrival…) 


After feverishly knocking on every possible door, I steadfastly kept searching for another to show up, ignoring and confused by that mysterious door, that heart opening. It’s been there for me all along, conveniently buried and bolted shut. It was only as my very last resort, after stubbornly reaching and striving and tumbling and falling, bruised and badly beaten, I turned within, nervously brushed away the cobwebs, the layers and layers of muck and gunk, and timidly turned that key…


It leads me in a gentle, supportive direction. It asks me to stand tall, to slow down, to listen, to pay attention, to take responsibility, and to know what I know and not back down. “


Know what I know and don’t back down.


Hmm. Interesting.


That’s it, folks.  That’s the gem in all this. The big story.  Sounds simple, right? Ya think? Really?


So when’s the last time you “stood tall, listened, paid attention, took responsibility, knew what you knew and did not back down?”


Who has the time?


Who wants the ridicule?


Who wants the loneliness?


Who wants the hassle?


Who has the courage?


Seriously?


Not me, I can assure you. 

In this instance however, I had no choice. When forced to make the time, forced to listen and pay attention, forced to take responsibility, I discovered that “knowing” comes from the mind, to some it is the heart, one and the same, neither of which are to be confused with the brain. The brain is a secondary player in all this; it can never get me to where I need to go. I needed to know that what was happening was not right; it was not in any way whatsoever connected to one good and true thing. The truth is the brain is only an organ, one that repeatedly gets us stuck in that little squishy box we’re all so familiar with, where we cozy up with our arrogance, our ignorance, our judgments and our fears—and we get stuck and oh so, so, so stupid.


But the “heart-mind”, which is real, well, hmm, let’s just say, it is not an organ. And it knows the truth. It knows how to rock the status quo.


What more can I tell you?


Was my doctor negligent all those years?


Yes. I think so.


Was it intentional?


No. I think it was a symptom of living in that damn goofy box, without any light.


I'm putting my bets on the heart-mind all the way.


Always,
Bea True


Questions? Contact Donna-Lynne (Bea True) here
 
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5 comments:

  1. Thank you for this wonderful post! I switched over to Thyroid Armour over two years ago after learning about it through my boyfriends grandmother and became a quick advocate for it as proper treatment. Actually, I had learned about it heaps in the books that I had read but one doctor after another just kept turning me down. I finally just 'lost my shit' to one doctor, after experiencing 5+ years of misery on Synthroid and we discovered together that Synthroid also contains dairy as a filler. I am allergic to dairy. (On top of the crappy side effects that already come with the overdose of T4 ~ which don't include crapping).
    I felt as you did ~ an immediate sense of relaxation and comfort. Prior to this I just felt so 'controlled' all the time. As I said in my latest blog post, I felt like a constipated robot! haahahah

    Here is an incredibly well written letter on the subject matter...
    http://thyroid.about.com/cs/thyroiddrugs/l/blletter.htm

    Thanks again for being in touch Bea True! I look forward to growing together on this journey.

    ReplyDelete
  2. This post came to me by the grace of God tonight, I believe for reassurance. We had freezing rain where I live for 3 days this week. I couldn't get to the pharmacy to pick up my levothyroxine. By day three I was crazy and had to retreat to a bath, soothing music and/or pure quiet for sanity. I was coming out of my skin. This scared me that this pill withdrawel...this tiny, little pill... was so strong that I haven't brought myself back to the pharmacy yet. What is this drug I am taking ?(2 years now).Today, day 5... I am giddy, and amazingly...feel just as you both of you said.. a peace. I feel a weight lifted. A huge one. I am noticing familiar things about myself that had disappeared without my notice. I laughed more. I had more energy. I felt so relaxed...waiting, driving, working....like a child. Today I feel like I am in my life and I think I have felt like I was just outside of it. If that makes any sense. I have already been working very carefully with my nutrition to heal my "borderline" low thyroid and new and growing food allergies,both in the auto-immune family, which according to my doctor have nothing to do with the other (despite them also starting at the same time). There is much to be said about food as medicine...honey, gluten free, low sugar...natural foods...water...etc..that you won't learn in most Western medicine..so keep up your journey! Anyway, I just had to share and send my appreciation. I thank you so much for your story. God Bless you in your healing. I have learned it is one thing to pray for help, it is another thing to believe it can happen...this too is key!

    ReplyDelete
  3. Thanks for the article. I have hashis and currently on 112mcg of levo. After a year on this, I developed anxiety, and daily light headed ness. Off balance, you name it. My head feels like its just floating along with my body. Seen 5 docs who gave me a battery of tests, including an MRI and heart ultrasound. All normal. I found a thyroid specialist who prescribes natural, but won't see her till late June. Now, until then, I stopped taking levo 2 days ago. I'm not sure what will happen but I can't take feeling like this anymore. I currently can't focus so hopefully this drug will be out of my system in a month. I'd rather suffer the lethargy than the lightheadedness any day of the week. Can't believe docs prescribe something that make so many people suffer without really testing for anything else. Read hundreds of research, and makes your head full of knowledge you really don't know what route to take. As far as I'm concerned, natural might be the way to go....or convincing a doc to at least check my hormone levels. Something that simple is like pulling teeth.

    ReplyDelete

Thanks for sharing!
I'll be in touch soon,
Bea