Sunday, September 1, 2013

Flexibility? Or compromising?

For the last four months my hypothyroidism has been treated with a medication called Armour Thyroid, and I still feel as sick as I've ever been. Since I was getting nowhere with my primary care doctor, I made an appointment with an endocrinologist that came highly recommended.

I was hopeful (perhaps overly so) that this doctor would have the answers that still eluded me, and was hopeful that he would continue to prescribe the Armour Thyroid that I thought was the best medication for me. After a long, and somewhat disappointing, conversation he asked me to try a medication that I have been extremely resistant to trying. And then he asked me if I had any basis for resisting it, other than the fact that it's a synthetic hormone rather than a naturally-derived hormone. 

I'll be honest, that question made me think.

Sometimes I get so caught up in feeling like I'm right, I close my eyes to being open to other potential solutions. And I didn't have a good answer for him other than that I had heard from many people that the medication he wants me to try didn't work for them. It was a legitimate question--how could I know it WOULDN'T work if I wouldn't even give it a try? 

The answer is, I don't know that it won't work. I don't have any personal experience to back up my opinion, only the prejudice that I've developed based on other people's experiences. Of course, that doesn't mean that this new medication WILL work, it just means that I really shouldn't insist that it won't without having the experience to back it up.

So I've agreed to try an 8 week trial of Synthroid. There is a part of me that feels like I may have compromised a little on my stance to try using only natural thyroid hormone, but there is a bigger part of me that feels like I can't honestly justify stating that natural thyroid hormone is the only medication that works when I haven't given other medications a try. 

In eight weeks, I will be able to say definitively if I feel any different with the new medication. At the very least, I can't imagine feeling worse than I do now, so theoretically I can't get any worse. Hopefully, I'll turn out to be one of the people that do really well on this medication. But if not, then I will have a good reason to justify my request for the other medication. It could just be semantics, but I'm going to focus on being flexible and not worry so much about feeling like I compromised on my health care. 

Friday, July 5, 2013

Advocating for yourself

Once upon a time, people would go the doctor, and trust that they were getting the most informed, best treatment option, and expected to recover from what ailed them. Today, things are much different. As a patient--and let's face it, we are ALL patients at some point in our lives--we must become our own advocate for health care. We can longer afford to trust in the knowledge and expertise of our doctors, not because our physicians are failing us, but because doctors are no longer allowed to learn and practice medicine they way they did 50 years ago. With the creation and growth of for-profit health insurance companies which now have unprecedented power in determining the course of treatment a physician may prescribe, we are at the mercy of doctors schooled in ways that predispose them to "treat & street," and insurance companies that frequently authorize only the cheapest and most relied upon testing and treatments--regardless of how outdated or inappropriate they might be for any individual patient.

Now, this post is not intended to blast doctors OR insurance companies. I am simply stating a truth, albeit an ugly truth. The consequence of this truth is that YOU must be your own best advocate for the care and treatment that fits you best. This means educating yourself about your condition(s) and researching all the various treatment methods available so that you can have an intelligent discussion with your doctor when deciding how to address your health concerns.

For those of us with thyroid issues, in particular, we are faced with not only family physicians that have too little experience in endocrinology to truly understand the scope of the many faces of thyroid dysfunction, but also specialists in endocrinology that have been trained to focus--and treat patients--solely on lab tests. We cannot leave our health and our quality of life in the hands of someone who only has 5 minutes to talk to us, and who has a majority of patients that aren't willing to challenge the status quo of testing and treatment.

I read as much as I can get my hands on. I read blogs, discussion forum threads, medical journal articles, and information on websites dedicated to thyroid issues because I refuse to continue forward on the blind faith that my doctor is correct in their judgement that the tests show "normal" lab values, therefore I must not have a thyroid issue any longer, when I know how bad I still feel from day to day. The more I read, the more I realize that I can't rely only on my doctor to do what is best for ME.

It's not easy to challenge doctors because we are taught our whole lives to have great respect for the people that dedicate so much of their own lives in time and training to become doctors. But we must take the time and make the effort to advocate for ourselves, no matter how uncomfortable that might feel. It is not disrespectful to ask questions, to request explanations, and to explore different ideas. Any doctor that gets offended that you are asking for more information is perhaps a doctor that you don't need to see anymore. And if you are in a position where there is no other option, and this doctor is the only one you can see, then I say BE PERSISTENT.

I've made a habit of bringing articles with me, having lists of questions written out, monitoring and reporting my changing symptoms, and keeping careful track of my medication schedule whenever I see my doctor. This allows me to feel empowered, to show that I'm not just jumping on the latest trendy treatment bandwagon, and that I've done my research to validate my questions and concerns. I have found that this greatly eases the discomfort of questioning my doctor's recommendations, and also shows her that I am well-informed and involved in my treatment.

It's not enough to be the patient that walks in, sits down and says, "Make me feel better." You need to be the  patient that walks in, sits down, pulls out the folder with copies of articles and information, and poses questions and concerns thoughtfully. You might be thinking, "Oh, I'm not that organized, I could never do that," but it's not complicated at all, and really doesn't take too much time. Besides, even if it IS complicated or takes time, we are talking about YOUR health. Isn't it worth a little time and effort to get the best treatment available to you?

I can't promise you that taking these steps will magically make your condition improve, or somehow  make an unwilling doctor suddenly hop on the advocacy train with you. But I can promise you that the more educated you are about your condition and treatment options, and the more you push to have intelligent, informed discussions with your physicians, the better your chances are that you will feel better faster, heal more quickly, and develop a relationship with your doctor where you are partners in managing your health.

Saturday, June 15, 2013

So...when does this get better?

Whew! I had no idea that two months would fly by so quickly! Looking back on the weeks since my last post, I will admit that things have definitely improved, but there is still a part of me wondering when things will REALLY start to get better?

I'm sleeping a little more each night, I'm waking up a little happier each morning, and I have more energy than I used to throughout the day. But, I can't help but want more improvement. Is that selfish of me? Probably. But it doesn't matter. Because I just want to feel BETTER.

I want to be able to get through one day without a tumult of emotions, without feeling incredibly fatigued and run down at some point, and I definitely want to be able to get through one day without a handful of hair coming out of my head. I'm impatient, I know, but I'm pretty sure most people in my shoes want to feel better NOW, not several months from now.

At my last doctor's appointment, my doc was satisfied that the current dose of my thyroid medication was sufficient since it had dropped my TSH 2 whole points, down from 4.5 to 2.5. It didn't matter that I argued that perhaps for me, 2.5 was still abnormally high. She remained firm that she would not change or increase my dose until my next follow up in 6 months. So I caved, and walked out of that office resigned to try life for a while on this dose. Now I am thinking I may have done myself a huge disservice. After all, it's not her job to be my advocate--it's mine. It's my job to stand up for myself when I think something isn't going in the right direction, and I have to take responsibility for that.

I guess that is the point of this post: if you are struggling with thyroid disease, or any other chronic illness, please be your own best advocate. No one else is going to stand up for you, no one else knows on a deeply, personally intimate level what is best for YOU. You must do it, because no one else will. And it is time to take my own advice!

Saturday, April 13, 2013

Find the pony

Many years ago, I read an article that explained the difference between optimism and pessimism that has always struck a chord with me. I've never been able to find it again, but here is the gist of the story:

A little boy is put into a room full of brand new toys. From floor to ceiling, everywhere he looks, there are shiny new things to play with. After a couple hours have passed, the researchers check on him, only to discover that he hasn't touched a single toy. Nothing has been opened, and nothing has been played with. When they asked him why he wasn't playing with anything, he said "Why should I? It will probably just break anyway. And besides, this toy is for girls, and that toy needs batteries, and I'm too big for that toy." The researchers could clearly see that this little boy was a true pessimist.

The little boy's twin brother was also put into a room, but his room was filled knee-high with shit. After a couple hours, the researchers checked on him as well, and found him covered from head to toe with poo. There was shit on the walls, the ceiling, and the door. Aghast, they asked him what he was doing. "Well, with all this poop, I figured there has to be a pony in her somewhere!!" he exclaimed, and dived back into the muck in search of the pony.

Boom. Optimism at its finest.

That, folks, is our challenge while managing our invisible illnesses--finding the pony in the pile of shit, everyday. Whether your particular pile of shit includes physical symptoms such as pain and fatigue, or real-life problems such as bills, family conflicts, and stress, there is a pony to be found in there somewhere!

I'm not encouraging you to turn a blind eye to your troubles. What I think we all need to do with more regularity, however, is to shift our focus just a little. That pile of shit is NOT the only thing in our life. Obviously, it is a big deal, but it is not the sum of our existence. There is so much more to this lovely chaos that we call "life" than whatever awful thing we are focused on right at this moment.

It's time to get hardcore Pollyanna on yourself. Be glad about something. Start small, and make it a conscious choice. If you are in terrible pain today, for example, stop focusing on that and for a moment appreciate that you *can* feel pain. Life would be immeasurably more challenging if you couldn't feel pain as a result of paralysis. If you are fed up with having to take multiple medications to manage your condition, stop for a minute and try to appreciate what it would be like if you had no medications at all to help you. These are not exercises in self-pity, but rather practicing stepping back from the mountain and realizing it's more of a really big molehill when compared to the rest of your life.

Be glad that the sun is shining, and that there even is a sun to shine. Be glad that stars come out at night. Be glad that you have someone in your life that understands. Be glad that there is always tomorrow. Be glad that you can sit, stand, walk, run, swim, jump, kneel, and skip. Be glad that there are people that can do those things and find joy in them, even if you can't. Be glad that as long as you are breathing, there is hope for something better.

If you can't find even one itty bitty thing to be glad of, one teensy thing to feel gratitude for, then at least be thankful that you get another chance to LIVE today. I'm sure there are countless people that are no longer with us that would have given anything for just One. More. Day.

Find your inner optimist. Yank them our of their hiding places by the hair if you have to. Hold onto that silver lining for the precious thing that it is, and practice your gratitude--especially on your worst days--because it may be all that you have. And, when it comes down to the nitty-gritty, if you still cannot muster up an ounce of thanks, that's okay. We have all had days like that. Tell yourself that you will try again tomorrow. And for the love of everything that means anything to you, DO it.

Find that damn pony, and ride that sucker off into the sunset!

Sunday, April 7, 2013

Roid Rage (...and a little swearing)

I've discovered yet another fabulous symptom of hypothyroidism...Roid Rage, as in, Thyroid Rage...unpredictable mood swings turning so hatefully angry, I feel like I'm a small step away from committing actual violence. Each swing is a desperate emotional battle, an inner war waged between my intellect, which is fully aware of the irrational degree of my fury, and my emotional basket case self that wants to set the world on fire, simply because it exists.

It's a vicious monkey on my back, one that I cannot coherently explain to my husband, or my daughter, or anyone. It screeches and pounds it's fists into my brain, ripping at the roots of my self-control. I know it sounds like a ridiculous cop-out, "Oh, Me? I'm being pissy because my thyroid is under active." Any rational person would stare at me as if I were a professional dealer in excuses, hawking my wares to unsuspecting victims of my fickle temper. And I simply don't know how to make it make sense to someone who doesn't know what it feels like.

Perhaps the worst thing of all is that as the Roid Rage Monster storms it's way through the downtown Tokyo of my mind, I'm fully aware of how wrong it is, but I just don't care. It's not only that it hijacks my personality that is so devastating, but it also steals any fucks that I might have given about it in the first place. It robs me of me, and I'm helpless to stop it.

When will this stop? I've been on the same dose of medication for 4 weeks now, and have seen only the barest modicum of improvement. For now, I'm left wrestling with this not-me that is angry and ugly and mean. My doppelganger is a bitch, and I don't like her at all. I wish I could tell her that things will get better, this angry other self of mine. I feel like a spectator at my own festival of crazy, sometimes. Till then, I'll keep riding this roller-coaster and keeping a white-knuckle grip on my sanity for as long as it takes.

Wednesday, March 13, 2013

Two long and laborious weeks...

This hypothyroid thing is whipping my butt. Seriously. I get depressed just thinking about my list of symptoms, which ironically also includes depression.

Anxiety
Insomnia
Fatigue
Irritability
Depression
Mood swings
Hair loss
Weight gain
Aches & pains
Exhaustion

I started medication almost two weeks ago, and so far have not experienced any improvement. In fact, if anything, I feel worse than before I started. I've Googled until my eyes go crossed, but can't seem to find any reassuring anecdotes describing a similar lack of improvement from other hypothyroid-buddies. It's completely popping my outrageously unfounded balloon of hope that my miraculous recovery is right around the corner.

In case you're interested, I was taking Armour Thyroid (15mg) faithfully at the same time each morning. After two weeks, I feel pretty desperate for some relief. Taking medication without symptom relief is worse, in it's own way, than not taking any medication at all.

I've been very nervous and cynical about my primary care doctor being open-minded enough to focus on how important it is to me to relieve my symptoms rather than simply evaluating my lab values. It was a very pleasant surprise, then, when I called and left a message for her nurse explaining that I was not getting any relief yet, and she called back to let me know she'd called in a new prescription at a higher dose. I'll be starting tomorrow, and my fingers are crossed so tight they are going numb.

This journey has barely begun, and though I am trying to dig deep for any reserve of patience that might carry me through this uncertainty, I have a secret (or maybe not-so-secret) fear that this is my life now. That this is as good as it will be, and that scares me. It scares me because I'm not confident that I'm strong enough to adapt to this tired, sad, joyless state of being.

I call this an "invisible illness" because it, like many others, is not something obviously visible to the eye. If I walk down the street, no one can simply look at me and say to themselves, "Wow, there goes a girl with hypothyroidism." There are lots of other invisible illnesses: epilepsy (which I also have), fibromyalgia, chronic fatigue syndrome, depression, Lupus, etc. And all too often, it's really difficult to convince even our family and friends that there is something legitimately wrong with our health. Some people will never know the isolation and loneliness that someone suffers with when they have a health condition that people can't see.

Here's to continuing to working on getting as healthy as we can. Regardless of who can see our suffering, regardless of what our doctors are unwilling to do to help us heal, and regardless of how many times we feel like we've had a setback, we need to keep moving forward. We need to keep making healthy choices, and putting ourselves first--we are worth it, and our health is worth it.

Friday, March 1, 2013

Welcome to Maladies & Misadventures!

Many of us are living with the debilitating and devastating effects of a silent or invisible disease--a condition that others are not able to see, but that affects us in profound ways nonetheless. Sometimes we spend years in our search for an answer, only to get brushed off as "depressed," "stressed," "over-worked," or even just "getting older" by our own doctors. Some of us may even be treated with anti-depressants or other medications that don't address the underlying cause of our symptoms, and in certain cases may even contribute to our failing health. And some may even go their whole lives without getting a proper diagnosis or treatment.

I've named this blog "misadventures" because that is how my journey through the medical establishment has felt--one wrong turn after another, bouncing from specialist to specialist, finally resorting to begging my primary care doctor for blood work to check  my thyroid function. I've known something was wrong for a long time--close to ten years, in fact. During the last five years I've been on a steady but significant decline in health: lacking energy, experiencing sleeping problems, gaining weight inexplicably, having trouble thinking and focusing, losing hair by the handfuls, and feeling crazy and unbalanced.

Even though all of my symptoms are clearly common symptoms of an under-active thyroid gland, at that point my doctor told me that it probably wouldn't help to do any blood work because my symptoms were common signs of aging. I'd had blood work two years previously with blood levels within the "normal" lab values, and she felt it wasn't important to test them again. But I insisted anyway.

Aging.

I still can't believe that was her answer, and I am only 35 years old! I requested a complete thyroid panel, and surprise! surprise! my blood work showed that something was definitely wrong. In the week between picking up my lab results up and seeing my doctor for my follow up, I gave myself a crash course in thyroid disorders. It was a long-overdue education, and gave me the tools I needed to defend my position as a well-informed patient when I had my follow up discussion with my doctor.

I now have a diagnosis of "sub-clinical hypothyroidism" which basically means that my labs show "mild" thyroid changes but based on my symptoms, my doctor can officially call my hypothyroid. Hallelujah! I finally got a real answer, and it only took documenting an entire page's worth of symptoms and an additional page of medical history that has contributed to my current state of health, or lack thereof.

I'll be starting my journey on Armour Thyroid tomorrow morning, and though I don't know how or when this will get resolved, but I am anxious to begin the healing my body has so desperately been crying out for. I've already given up too many years of my life to this crushing illness, and I refuse to lose any more. I hope you will continue to join me on this journey as I explore treatment options, and discuss the many challenges that those of us with "invisible" illnesses face from day to day. I'm here to let you know that you are not alone, that there are many people going through the same challenges that you are. Together, we will find a way to heal our bodies, our minds, and our hearts.