Almost a year has passed since I last posted about my progress with Graves Disease. I know the subject doesn't interest most people, but just this week I heard from a long-time reader who had a few questions. She, like many, skimmed my earlier posts with little interest. That is, until she received her own Graves Disease diagnosis. She appreciated reading the perspective of another active outdoor enthusiast, which is what I hoped to achieve with these updates. And it just so happened that today was my sixth-month check-in with my endocrinologist.
The verdict: I am officially in remission! (Currently. Autoimmune diseases can always come raging back with new issues in tow. I also carry antibodies for Hashimoto's Disease, so I am just as likely to swing hypothyroid. But for now, all is well.)
When I tested with mid-range TSH in November, my doctor advised me to try going off the drug I was taking to regulate my thyroid hormone production, methimazole. My TSH dipped again in December, but now it's up to 3.2 — well within the healthy range of 0.45-4.5 — and all on its own volition. In fact, I've been more or less drug free since last fall, as that was also the time my allergy doctor had me go off of Singular and daily use of Claratin. It's been really strange to not visit the pharmacy every other week. I had to find new stores to buy personal products and cleaning supplies.
I made a little chart of my 27-month progression for the few readers who might be interested. Everyone else should scroll to the end of this post, for pretty snow photos.
The purple line represents TSH levels, and the blue bars are T3 hormone levels. I also had T4 tested, but didn't include it, as those fluctuations are more or less redundant. The purple boxes indicate the amount of methimazole I was taking during each period, and the light blue box is the happy range for T3, the active thyroid hormone. The happy range for TSH is anything above 0.45. It's a little hard to discern on this graph, but I didn't reach this milestone until May 2018.
In February 2017, my T3 was off the charts, and I felt terrible. My resting heart rate was 85-95, my hair was brittle and breaking off, my cognitive awareness was blurring, my emotional state was deteriorating, and I was wired but tired all the time — sleeping poorly, anxious, and when I finally set out to exercise, I had no energy to do so. At the time I was so delusional that I thought I was training to ride my bicycle across Alaska, as I had done in 2016. There were a few rides where I'd set out, take as much as 45 minutes to slog to the end of the road just three miles from home, and decide that I was so wasted that I needed to turn around and go home. I'd cry about it in the privacy of my bedroom, but I'd still tell myself I was "just having a bad breathing day" and vow to try again the next day. I was in a pitiful state of try-hard delusion.
Whenever I complained about my symptoms, I mostly heard "overtraining" and "altitude" as reasons. It took my endurance-cycling Alaskan physician friend Corrine — who in 2018 finished the Tour Divide at age 59! — to first observe the bulge in my neck (a swollen thyroid gland, also know as a goiter) and ask me if I'd ever had my thyroid tested.
This was early February 2017. I went to see my primary care physician the following week. After lab work came back, I was fast-tracked through a specialist, more tests and ultrasounds to determine that under no terms was I capable of racing across Alaska in three weeks' time. Had I actually attempted the 2017 ITI, there's a reasonable chance I would have died. It sounds overdramatic to put it like that, and it is. But my odds of experiencing a thyroid storm or heart episode at any time or place, including the middle of frozen nowhere, were not low.
Instead, I dropped out of the race and began treatment with a thyroid-hormone-suppressing drug, whose main side-effect is that it can cause liver damage. As the chart shows, this worked quickly for me, and my levels were never dangerously high after I started taking methimazole. I did remain hyperthyroid for most of the following year, with wildly fluctuating symptoms that didn't necessarily coincide with my thyroid levels. Breathing difficulty — which I still consider my most prominent physical health issue — continued at intervals throughout 2017 and 2018. These slumps were frustrating, but did seem to lessen as time went by. Especially later in 2018, when I was drug-free and my levels were normalizing, my slumps were shorter and less severe. However, they were still concerning enough that I decided against racing the Tour Divide in 2019. I've had trouble breathing as recently as the first week of March, and I do expect to falter again. I'll likely never be all the way free of breathing difficulty. But the long-range perspective is "undulating toward normalcy," and it's heartening.
Because of my allergic asthma, the fact I live at 7,200 feet elevation, and the still-likely scenario that I'm a little too active for my own good, I don't know how much my breathing issues are caused by thyroid disease versus anything else. But I do know that I feel a whole lot better and stronger than I did two years ago. The only aspect of my lifestyle that has consistently changed in that time is traditional medical treatment for thyroid disease and allergies (via immunotherapy, which seems to have been quite successful in tamping down my body's overreactions to the green seasons.)
I've also written a little about mental health as it relates to thyroid disease. I believe this is a bigger issue than most specialists make it out to be, but I realize every person's experience is different. When I was embroiled in the darkest days of Graves Disease, in the winter of 2016-2017, I struggled with a depressive state that heavily reduced my creativity and capability for joy. I blamed this state of mind on the political climate that was bursting to the foreground at the time, as well as stress about life, my faltering fitness and the upcoming Iditarod race. I realize now just how much my mental state has shifted — when, again, little has changed in both my life or the state of the world. I've been treated for thyroid disease, and it seems for this reason alone, my mental health is considerably better.
I do still deal with mild anxiety, which infrequently flares up with little provocation into a low-level panic, considerable shortness of breath and some chest pain. At first I'd feel these symptoms and think "oh no, thyroid storm." There may be some connection still, as I probably experience occasional bursts of hormone overproduction caused by stress. I've been using CBD as a regular supplement since my last anxiety episode in September, and have had considerably fewer issues since. How much reduced anxiety coincides with CBD use or Graves Disease remission, I don't know.
Okay, scrollers. Here is the photogenic part of the blog post. We received another spring snowstorm this week, and again, I was thrilled. By now, most of our friends and neighbors are tired of snow. Winter weather has already stretched across seven months, and this late-season snow isn't the recreational type. It has a high water content and covers long-thawed ground, which translates to sticky sludge on top of the sloppiest mud. Even trucks don't handle the conditions all that well (based on the number I've seen stuck in ditches recently.) But there's such beauty and novelty to a May storm. I watch each one with a sort of pensive longing, because this must be the last (and eventually, it will be. This storm, which was May 9, is a very likely candidate.)
I set out for a morning hike. My destination was Bear Peak, a six-mile route that I can usually "run" in 90 minutes. This excursion took almost three hours. Breaking trail through 6-8 inches of spring snow doesn't sound like much, but it was a mighty slog. Snowshoes wouldn't have helped, because the wet cement snow stuck to everything like, well, wet cement. I fumbled to find the route up the west ridge of Bear and ended up skimming a scary ledge. Back on the trail, I kept tripping over rocks that I couldn't see. My fingers throbbed with pain because of these frequent stumbles, grabbing bare handfuls of snow, while my core was still too warm and brain too stubborn to bother with the mittens in my pocket.
Still, I was so happy. Why? I don't even know. This is one aspect of my personality that I've stopped questioning. Let the soft animal of my body love what it loves. And hope my wonky hormones don't get in the way.
Frequently I stopped walking and stood in place to listen to the gentle hiss of snowflakes falling through an expansive silence. This must be one of the most beautiful sounds. I was so grateful for this opportunity to soak in the final snow of the season. Unless there's another. There can always be hope for another.
The verdict: I am officially in remission! (Currently. Autoimmune diseases can always come raging back with new issues in tow. I also carry antibodies for Hashimoto's Disease, so I am just as likely to swing hypothyroid. But for now, all is well.)
When I tested with mid-range TSH in November, my doctor advised me to try going off the drug I was taking to regulate my thyroid hormone production, methimazole. My TSH dipped again in December, but now it's up to 3.2 — well within the healthy range of 0.45-4.5 — and all on its own volition. In fact, I've been more or less drug free since last fall, as that was also the time my allergy doctor had me go off of Singular and daily use of Claratin. It's been really strange to not visit the pharmacy every other week. I had to find new stores to buy personal products and cleaning supplies.
I made a little chart of my 27-month progression for the few readers who might be interested. Everyone else should scroll to the end of this post, for pretty snow photos.
The purple line represents TSH levels, and the blue bars are T3 hormone levels. I also had T4 tested, but didn't include it, as those fluctuations are more or less redundant. The purple boxes indicate the amount of methimazole I was taking during each period, and the light blue box is the happy range for T3, the active thyroid hormone. The happy range for TSH is anything above 0.45. It's a little hard to discern on this graph, but I didn't reach this milestone until May 2018.
In February 2017, my T3 was off the charts, and I felt terrible. My resting heart rate was 85-95, my hair was brittle and breaking off, my cognitive awareness was blurring, my emotional state was deteriorating, and I was wired but tired all the time — sleeping poorly, anxious, and when I finally set out to exercise, I had no energy to do so. At the time I was so delusional that I thought I was training to ride my bicycle across Alaska, as I had done in 2016. There were a few rides where I'd set out, take as much as 45 minutes to slog to the end of the road just three miles from home, and decide that I was so wasted that I needed to turn around and go home. I'd cry about it in the privacy of my bedroom, but I'd still tell myself I was "just having a bad breathing day" and vow to try again the next day. I was in a pitiful state of try-hard delusion.
Whenever I complained about my symptoms, I mostly heard "overtraining" and "altitude" as reasons. It took my endurance-cycling Alaskan physician friend Corrine — who in 2018 finished the Tour Divide at age 59! — to first observe the bulge in my neck (a swollen thyroid gland, also know as a goiter) and ask me if I'd ever had my thyroid tested.
This was early February 2017. I went to see my primary care physician the following week. After lab work came back, I was fast-tracked through a specialist, more tests and ultrasounds to determine that under no terms was I capable of racing across Alaska in three weeks' time. Had I actually attempted the 2017 ITI, there's a reasonable chance I would have died. It sounds overdramatic to put it like that, and it is. But my odds of experiencing a thyroid storm or heart episode at any time or place, including the middle of frozen nowhere, were not low.
Instead, I dropped out of the race and began treatment with a thyroid-hormone-suppressing drug, whose main side-effect is that it can cause liver damage. As the chart shows, this worked quickly for me, and my levels were never dangerously high after I started taking methimazole. I did remain hyperthyroid for most of the following year, with wildly fluctuating symptoms that didn't necessarily coincide with my thyroid levels. Breathing difficulty — which I still consider my most prominent physical health issue — continued at intervals throughout 2017 and 2018. These slumps were frustrating, but did seem to lessen as time went by. Especially later in 2018, when I was drug-free and my levels were normalizing, my slumps were shorter and less severe. However, they were still concerning enough that I decided against racing the Tour Divide in 2019. I've had trouble breathing as recently as the first week of March, and I do expect to falter again. I'll likely never be all the way free of breathing difficulty. But the long-range perspective is "undulating toward normalcy," and it's heartening.
Because of my allergic asthma, the fact I live at 7,200 feet elevation, and the still-likely scenario that I'm a little too active for my own good, I don't know how much my breathing issues are caused by thyroid disease versus anything else. But I do know that I feel a whole lot better and stronger than I did two years ago. The only aspect of my lifestyle that has consistently changed in that time is traditional medical treatment for thyroid disease and allergies (via immunotherapy, which seems to have been quite successful in tamping down my body's overreactions to the green seasons.)
I've also written a little about mental health as it relates to thyroid disease. I believe this is a bigger issue than most specialists make it out to be, but I realize every person's experience is different. When I was embroiled in the darkest days of Graves Disease, in the winter of 2016-2017, I struggled with a depressive state that heavily reduced my creativity and capability for joy. I blamed this state of mind on the political climate that was bursting to the foreground at the time, as well as stress about life, my faltering fitness and the upcoming Iditarod race. I realize now just how much my mental state has shifted — when, again, little has changed in both my life or the state of the world. I've been treated for thyroid disease, and it seems for this reason alone, my mental health is considerably better.
I do still deal with mild anxiety, which infrequently flares up with little provocation into a low-level panic, considerable shortness of breath and some chest pain. At first I'd feel these symptoms and think "oh no, thyroid storm." There may be some connection still, as I probably experience occasional bursts of hormone overproduction caused by stress. I've been using CBD as a regular supplement since my last anxiety episode in September, and have had considerably fewer issues since. How much reduced anxiety coincides with CBD use or Graves Disease remission, I don't know.
Okay, scrollers. Here is the photogenic part of the blog post. We received another spring snowstorm this week, and again, I was thrilled. By now, most of our friends and neighbors are tired of snow. Winter weather has already stretched across seven months, and this late-season snow isn't the recreational type. It has a high water content and covers long-thawed ground, which translates to sticky sludge on top of the sloppiest mud. Even trucks don't handle the conditions all that well (based on the number I've seen stuck in ditches recently.) But there's such beauty and novelty to a May storm. I watch each one with a sort of pensive longing, because this must be the last (and eventually, it will be. This storm, which was May 9, is a very likely candidate.)
I set out for a morning hike. My destination was Bear Peak, a six-mile route that I can usually "run" in 90 minutes. This excursion took almost three hours. Breaking trail through 6-8 inches of spring snow doesn't sound like much, but it was a mighty slog. Snowshoes wouldn't have helped, because the wet cement snow stuck to everything like, well, wet cement. I fumbled to find the route up the west ridge of Bear and ended up skimming a scary ledge. Back on the trail, I kept tripping over rocks that I couldn't see. My fingers throbbed with pain because of these frequent stumbles, grabbing bare handfuls of snow, while my core was still too warm and brain too stubborn to bother with the mittens in my pocket.
Still, I was so happy. Why? I don't even know. This is one aspect of my personality that I've stopped questioning. Let the soft animal of my body love what it loves. And hope my wonky hormones don't get in the way.
Frequently I stopped walking and stood in place to listen to the gentle hiss of snowflakes falling through an expansive silence. This must be one of the most beautiful sounds. I was so grateful for this opportunity to soak in the final snow of the season. Unless there's another. There can always be hope for another.