The Battle of Being Hypothyroid
Yesterday, after many not-good-days, was a very good day. 🥳
Eight months ago, in the mix of Christmas cards that found their way to our home, my insurance company had sent a letter stating that as of January 1, 2019 they were no longer going to cover the thyroid medication I had successfully been on for 5-6 years.
Happy New Year to me... 🙄🖕🏼
I was put on Tirosint years ago because my doctor at the time surmised I wasn’t absorbing other T4 medications properly. Perhaps that's something they never knew about, more than likely it's something they never cared about either. In the same letter I was informed that Synthroid — the cheaper "standard of care" prescription that I have NEVER done well on — was what the insurance company wanted me on.
Yes. You read that right. The INSURANCE COMPANY was telling me to all but disregard the treatment plan my doctors and I had worked hard to figure out and maintain after YEARS of trial and error on different medications. Obviously, they know better than my doctors or, hell, even me — the person who has lived with this disorder since a routine check showed something "very wrong" with my thyroid at age 19. All this information was clearly worded in a way that sounded like I had 0 options but to comply.
I rolled my eyes, threw the paper to the side, and muttered something along the lines of, "Typical...." as I reached for my phone and called my doctor. On that day, we decided I would fill my 90 day prescriptions as normal — for Tirosint (T4) and Cytomel (T3) at the end of the month, which would get me through March 2019 on my current treatment plan. Then, at my previously scheduled appointment in February, we would figure out where to go next. I was happy for the three month reprieve, but in my stomach sat a knot that knew — this wasn't going to be easy come April.
When February came around, my doctor and I sat in the office where I proclaimed I would NOT be going back on Synthroid. That might be the easiest way outta this mess, to give the insurance company what they wanted — but I've tried Synthroid multiple times over the years, and have never felt like I was truly living. At age 36, I understood now more than ever that I didn't want to waste my time feeling like a zombie — to boot, I had responsibilities in life that required a fully functioning human being and not someone who was just merely 'getting by'. The doctor called around, searched for different options, and we decided I would go back on Armour since this would at least keep me on a T4/T3 combination treatment. We discussed how years ago I had been taken off Armour and put on Tirosint due to concerns about my anxiety levels. But, Armour seemed to be the only thing available over Synthroid — and I thought I might be able to manage the anxiety better now than I could in my mid-20's.
I was hopeful, but also cautiously so. Nearly any time you change your medication your thyroid (which all but maintains every function in your body) needs an adjustment period, and typically that's months not weeks or days. A full year could fly by before you 'get back to where you were'.
It wasn't until early May that I knew this first dosage wasn't working for me. I'll spare you the depressing four month play by play, but to date it's been nearly half a year of battling extreme fatigue, brain fog, muscles aches, sluggishness, mood swings (sorry everyone I know 😬), dry skin that became painful, temperature shifts, not wanting to even be around myself let alone other people that didn't deserve my wrath, and — of course — weight gain. Just to name a few symptoms.
All while also trying to "keep up" in my day-to-day life as if nothing was wrong. It's a mother fucker to have an invisible disorder, something people can't SEE — because if there is anything more defeating to admit, it's that you're slowly being destroyed from the inside out. And I am typically very good at "keeping up" no matter how awful I feel.
Like clock work, I could tell my thyroid was no longer optimized. I was effectively a toy with batteries that weren't quite dead yet — but were certainly well on their way to needing replacement. That is what living with an un-optimized thyroid feels like. You're constantly a toy in need of new batteries that has slowed speech, slowed movements, and isn't quite as shiny or "on point" as usual. They say you're "normal" — but you know that's not quite right, and you FEEL it every second of every day. In 20 years with this disorder, two things are fast, furious indicators for me that something is not quite right — the scale goes up no matter how many steps I walk or how many calories I do (or don't) eat or how many ounces of water I drink, and the fatigue slams into me something fierce. There go the batteries.
May rolled into June, and my Armour was increased twice. Each time, a call was made to my doctor with me repeating the main course of symptoms, followed by, "It just feels like my batteries are dead" or "Nope, my battery still isn't working" to the nurse — who, upon hearing the description, chuckled and said, "That's the best way I've heard hypothyroidism described...."
By early June, my doctor no longer knew what to do with me. And that's when you begin to panic as a thyroid patient because, inevitably, you know this is when they're going to start throwing different diagnosis' or tests your way. Bandaids. My give a damn busted on the day I received a call from the nurse to tell me they were now prescribing me orders for a sleep study. That must be the reason for my fatigue.
"I'm not going to do that." I was fiery, and could feel the heat of New Jersey rise in my blood.
She stuttered, "Wh-why not?"
Doctors rarely must be told "No." from patients...
"Because my THYROID hasn't been 'fixed' yet...I'm not going to be tested for anything else until THIS is fixed. I was fine up until April, I've struggled since this medication shift, having NO SIGNS of needing a sleep study prior and NO other changes to anything in my life — hell, my life is less stressful than it was at any point last year — so, while I'm no doctor, I think I have enough common sense to suggest that we figure out my THYROID first." She hesitantly understood, apologized that I wouldn't be feeling 100% for our upcoming trip to Jamaica, and we hung up. My fatigue immediately rolled into pure-exhausted-survival mode.
Out of curiosity, I went to my Fitbit tracker to look at my previous weeks of sleep — each day I scrolled through read 7.5-9 hours of restful sleep a night. I know that isn't "full picture" — but, to me, it suggests I may not be that far off base either. It was a week before our honeymoon, and I struggled with knowing that I would be taking "Broken Casie" — the one who felt every ounce of pain and discomfort in her own skin — on this trip.
With the sense of defeat, and knowledge that this was NOW taking a turn for the more complicated — I got to work. This now required me to hunt down another doctor/endocrinologist in Orlando who gives a damn about optimal thyroids and their patient's quality of life (a daunting task in and of itself) — I threw myself into the black hole that is google searches and scrolling through Facebook groups looking for doctors that hadn't failed me previously in Central Florida.
On the third week of June, after days of bouncing through the internet, two options presented themselves that gave me the most hope: an endocrinologist through Advent Health that could see me, at the earliest, at the end of August and my OBGYN, who I had an upcoming annual appointment with, who had previously mentioned she might be able to help monitor my thyroid. I booked the August 28th appointment — just in case, and called my OBGYN's office to see if she could do two things: provide a full thyroid panel test, and work to keep me on a T3/T4 combo treatment.
Two things most doctors fight you on.
The day we got back from Jamaica I found out that she not only could — but she would, and two days later I went in for my very FIRST full thyroid panel. It was the first time in 20 years that I would know what my ENTIRE thyroid function looked like and I was giddy with this monumental success.
The day after we returned from Jamaica, I went into my current doctors office for my routine 3-4 month thyroid check and heard how my labs were "normal" and got to sit through more explanations of why a sleep study was the next best option. "I'm not doing that," I said firmly as I could feel the heat rise again up my spine. "I'm getting 7.5-9 hours of restful slee—"
"Does it help that this test can be done at home?"
"No! No, It does not." I fired back, "I don't care where the test is done — I don't see the need for it, we haven't figured out my thyroid yet."
"The test will show your oxygenation levels..." a training doctor offered.
"Well, I'm 35lbs overweight," I spat out angrily, "So, I can almost guarantee this test is going to come back saying all sorts of things that wouldn't read the same if my thyroid was managed properly...and I were sitting here closer to 150 than 185."
I was done, and so were they.
A week later, I sat in my OGBYN's office going over my full thyroid panel results as she listened to the story of my 2019 so far. She understood and said, “No. We can get you back on Tirosint. Your labs are saying 'Normal' but your body is still symptomatic which says to me that you're not optimized yet...”
What a freakin' difference, I thought.
We came up with a new plan on the spot, and two weeks later, after her team worked with me to prove to Cigna that *THIS* was the medication I needed for optimal treatment — I got the call to go pick up my Tirosint. 😭
I had been approved for one whole year (So, Spoiler Alert: I imagine we’ll be fighting Cigna again NEXT year, but...whatever — a win is a win.) and had never been happier to see a box of medication in my life.
My next concern was that the good ol' insurance comapny was going to charge me $500+ for Tirosint since it was "no longer covered". I sat and waited. I researched to see what number might follow the dollar sign for me, what coupons I might be able to use, and mostly I held my breath hoping for the best.
I’m happy to say that by some prescription fairy miracle — I’m paying less than I was a year ago. Although, even saying that makes me nervous — that I'll jinx it and in 3 months I’ll go to pick up my next round of Tirosint to THEN be charged some absurd number.
People shouldn't have to worry about that when it comes to prescriptions...yet, here we are.
This is just a small glimpse of what insurance companies look like in America. An extremely small look at being denied medications and optimal treatments that DOCTORS deem necessary — and living in fear that one single medication that keeps you alive or gives you quality of life is going to be so un-affordable one day that you'll have to settle for something sub-par.
Even when you have good insurance and a great job. Even when you have doctors that will fight alongside you. There are still insurance companies that would rather have their way with you. Which makes me so fucking mad.
This was a win for me, a good day — and hopefully a day that'll now set my thyroid straight and get me back to where I was a year ago. I hope there's a morning soon where I'll wake up and feel the fresh life of restored power surge through my veins. But I still can't shake the fact that there are SO MANY OTHERS who are still fighting their insurance companies. SO MANY OTHERS who can't afford the medications prescribed to them. SO MANY OTHERS that are denied the medications they need — and so they go without. And SO MANY OTHERS who go bankrupt trying to save their lives.
And I just don't know how any of that's okay... 😥
Here's hoping we all get a "good day" soon. 💜 #KeepFighting #LiveOutLoud