Thyroid update 3

Note: I write these update posts for my own records. I don't expect anyone else to find them interesting. So here's the TL;DR: I'm back to feeling not super great, and I want to spend a few paragraphs venting about it. 

The past five months of Graves Disease treatment have felt like a rollercoaster of good weeks and bad, but there's been an overall arc that seems to be heading in the wrong direction again. My lab numbers would bear this out — the emoticons on these graphs illustrate my general state at the time:

T3 is the metabolically active thyroid hormone, and thus the one with the most influence on body functions. Symptoms of high T3 ("thyrotoxicosis") that I seem to experience are heat intolerance (always fun in the summertime), tremors, irritability, brain fog, elevated heart rate, muscle weakness, shortness of breath, and exercise intolerance. Currently my treatment includes a drug that blocks thyroid hormone production, along with some admittedly half-hearted efforts to avoid stressors and foods that are high in iodine or possibly inflammatory.

T4 is produced in the thyroid gland in much larger amounts than T3, then converted to T3 in the body. T4 tests are generally used to determine whether a patient has hyperthyoridism, and T3 tests determine the severity. My Free T4 has been been in normal range since April, but my general sense of well-being correlates better with the T3 chart. Still, these numbers would convince a doctor that I'm doing well. And I am ... only I've definitely been feeling that upswing. What felt pretty good in April doesn't feel as good in July — my perspective has shifted to yearn for those "good weeks," back when I could run the 25-mile Quadrock with ease and feel like I was breathing fire, not fumes.

My doctor reduced my anti-thyroid medication dose from 30mg to 20mg after May 12. I've requested re-upping that dose twice, and my doctor doesn't agree. Personally I would like to go back to where I was on May 12, and fear I will continue to head in the wrong direction.

Thyroid Stimulating Hormone is the test most often used to measure thyroid function, because it's easy to obtain. However, TSH doesn't affect any other organ besides the thyroid. This pituitary hormone has been likened to a thermostat — if your thyroid hormones are low, TSH tells your thyroid to turn up the heat. It will continue cranking up if your thyroid doesn't respond, which is why hypothyroid patients have high TSH. If the thyroid is already overproducing, TSH shuts off. In Grave's Disease, autoimmune disease antibodies inhibit TSH response, so unless I go into remission (this is the goal), my TSH will remain low. The fact that my body produced any TSH at all was a great sign — it meant I was responding well to treatment and my antibodies were diminishing. I'm also frustrated that this already tiny number is on its way back down.

Yes, it's possible that the physical and emotional stress of participating in the Bryce 100 on June 16 contributed to this downswing in health. However, my numbers were already changing before then. Summer contains other stressors — my allergy season, although thanks to ongoing allergy shots, I believe I'm feeling less impact from pollen this year. Sunshine, to which I'm also mildly allergic, and even ample amounts of SPF 50 or covering most of my skin doesn't always prevent breakouts of small blisters on my arms and legs. Heat, to which I'm particularly sensitive these days. Undue malaise, which has dogged me for mostly inexplicable reasons during summer since I was a small child, with the exception of the years I was in Alaska.

My experiences of "brain fog" also cause stress. This is usually noticed when I try to read something on a screen and continually lose my place, or attempt to write something and zone out, then catch myself staring blankly and feeling confused after unknown seconds or minutes. Once I dip into this foggy-headed zone-out pattern, it's difficult to be all that productive for the rest of the day. These were common occurrences during the winter, and they've started to happen again.

My most prominent symptom is still shortness of breath while exercising, and sometimes while doing simple things like walking around a store or climbing stairs. My heart rate also is affected by thyroid hormone swings. My resting heart rate dropped into the low 60s in May, but has climbed back into the 70s and 80s more recently. (Note: I usually check this in the afternoon. I need to get in the habit of checking first thing in the morning.)

When exercising, my heart occasionally begins to race at relatively low efforts — I've seen the 180s while jogging a 12-minute-mile, which is just ridiculous. It usually drops quickly, but afterward I continue to feel short of breath. When I compare heart rate stats to similar workouts from three or four years ago, my averages are notably higher now. (Earning me high suffer scores on Strava, and not much else.)

Efforts to take it easy from the start still leave me short of breath at moderate heart rates; it just takes more time to feel winded. The physical effects have taken much of the motivation and some of the joy out of activity. I go to the gym to lift weights even though I suspect my muscles are deteriorating again due to high T3 — if anything, I hope that weightlifting will prevent that to some degree. And I go on long rides because I still love scenic tours and the meditative rhythm of movement. I'm no good at rest either. If I'm sedentary for too long, the jitteriness builds and my tremors, irritability and brain fog become worse. Long, slow distance at lower heart rates is still good medicine. The length of a workout doesn't seem to affect my well-being. Intensity does. When it's 90 degrees outside, I also overheat quickly, so I struggle with that as well.

I have several reasons to believe that intense exercise is bad for my health right now, so I'm not inclined to do much more than these twice- or thrice-weekly long rides or hikes. I don't feel I'm overdoing it with these alone. But I sure do miss those brief May days of being in shape again, of "breathing fire."

Things certainly aren't as bad as they were last winter, but I'm still discouraged. I realize my doctor has a long view that I don't possess, and also that there are probably other steps I can take to improve my health besides popping pills. I've already experienced how much difference those pills can make, so despite discouragement I'm hopeful.

Until then, I'm reading up on leaky gut and inflammation, and dreaming up other methods I can leverage for placebo effect. Road trip? Weekend backpacking trip? Last year I was nicely "cured" of breathing difficulties by our annual trip to Europe, so I'm looking forward to fresh air in the Alps. Good things will come. They always do. 

And I don't care if I sing off key

 On Monday I freaked myself out when I went to the gym and failed to lift the weights I'd managed the week prior. It wasn't a small slip. Last week I was doing three sets of 12 reps each, and this week I strained to eke out a single rep. A person secure in their health would probably just think, "Oh, I'm probably just tired from the backpacking trip." But my brain sent out all the alarm signals. "You finally ruined yourself with that backpacking trip! Your muscles are atrophied! You are dying, for real this time!"

I know I'm not dying. I mean, on the grand scale, yes I am dying. Even on the daily scale, there is a small chance I will die. But it's likely quite small. It's just that I haven't been feeling all that great since early June, and the insecurities build. My hair is falling out again. It probably won't all fall out, but it might. What will life be like as a bald woman? Do I care about my hair more than I care about breathing well, having a sharp mind and decent physical fitness? Well, no. But I do care. But it probably won't happen. But what if?

I try to keep this jittery negative feedback loop to myself, because if I complain, I will probably be laughed at. It's fair. I am blowing all of this out of proportion. There's a process and it takes time. Even my endocrinologist balked when I requested a blood test this month — she thinks I'm well enough to start having them every two months, and soon four. But I managed to schedule one on Wednesday. I find out the results next week. They're probably benign ... but what if?

So I avoided the urge toward gloom by recommitting to the gym — three times a week! Maybe four! — and not feeling bad about not going outside when it's hot and thunderstormy and polleny and buggy and grumble grumble summer. My winter. The "off season." Still, an opportunity presented itself to go for a longer ride on Thursday. I looked at a map, which always sparks curiosity — "oh, I haven't explored that road. Or that one. Or that one." A newfound excitement took over and soon I'd drawn a route topping 100 miles. Scratched a few things off. Brought it down to 70. "Seems doable."

 Early in the ride my front tire sprung a leak and spewed out most of the sealant and air. It eventually sealed, but I only bothered to pump a little bit of air back in, and spent miles feeling anxious about springing another leak (and having to put in a tube! The horror!) I traced a largely abandoned forest road around Gross Reservoir and pondered how much of the forest would be leveled by a proposed expansion project. This led to unnecessary anger about the expansion project. From there I plodded west toward billowing cumulonimbus clouds that darkened and started dumping rain before noon. I was sheltered by forest and most of the electricity sounded far away, so I was grateful for the cooling deluge. My silly anxieties began to wash away.

 The roads grew more rutted, steeper, and rockier. I began to struggle. And when I say struggle, I really mean struggle. I do not mean that my quads started to burn as I powered up the climbs. I mean that I pushed my bike for a dozen or so steps before stopping to catch a quick breath. Then I took a few more steps. My lungs felt ragged and I was dizzy. It took me nearly two hours to travel five miles. It was all quite silly. Why was I doing this? I plodded to a clearing at 11,000 feet and looked east. The storms had started to clear and the foothills were shrouded in haze — likely smoke from all the fires burning to the west. A grin spread across my face. I didn't even know why I was so giddy. It wasn't the most beautiful view, or the most unique. It was trees and hills and the world doesn't change all that much in the span of what, 25 miles? Is that all I'd ridden so far? Twenty-five miles? It felt as though I'd bashed my way through great hardship and emerged victorious at the top of a mountain. I think that's why I continue to seek out these efforts amid my limitations. In spite of them, if ever so briefly, I can experience a world without limits.

 From there, all I needed to do was descend from 11,000 feet. I bounced over rocks and skidded on gravel as the road gradually widened and improved until I was screaming forward with that smile plastered across my face and cheeks burning from the windchill. Finally, the blurry world sharpened and I slowed to a roll at the bottom of the hill, where I realized I was in Central City. Central City is not close to Boulder. Not at all. I guess the map measured this route at 70 miles for a reason.

 There was a bit of wheezing as I climbed a thousand feet and descended and climbed another thousand into Golden Gate State Park. Then climbed some more. All of those foothills I saw from up high — I pretty much had to climb all of them. Once I hit the flats, I still had twelve miles to pedal into town, largely into a headwind. Comparatively, this was coasting, and with 70 miles and 8,000 feet of climbing behind me, my lungs had relaxed and my legs were finally feeling a bit of pep. I was in a great mood, bolstered by Sia music:

"And I don't care if I sing off key.
I find myself in my melodies. 
I sing for love, I sing for me.
I shout it out like a bird set free ..."

Have I been set free? Am I cured? Probably not. But I'm not imaginary dying, and that's what matters. 

My weekend on the CDT

My friend Leslie is spending the summer hiking the Continental Divide Trail — 3,100 miles of rugged and remote high country from Mexico to Canada. She started May 22 at the Mexican border and hiked across New Mexico to Chama, where she encountered a wall of snowy peaks in Colorado's San Juan Mountains. Her husband, Keith, is loosely following her in his camper-truck while road-tripping around the West, so he drove her up to the base of the Wind Rivers in Wyoming so she could start hiking south across the Great Divide Basin and Colorado. When she reaches Chama, she'll flip north again in hopes of completing the thru-hike in one summer. 

Keith dropped by to visit Beat and me in Boulder last week, and offered to provide a shuttle so I could join Leslie on my "local" segment of the CDT — 60 miles between Grand Lake and Berthoud Pass. Leslie generally walks between 25 and 35 miles a day, although her average had dropped a bit since she started into Colorado. I understood that she'd budgeted two and a half days for this segment, and I also understood how difficult it could be from the pieces I'd walked. After all, it took me seven hours to day-hike 14 miles to James Peak just two weeks ago. Would I be able to manage my exertion and breathing enough to keep up with Leslie's demanding thru-hiker pace? I was genuinely more nervous about the prospect of this weekend backpacking trip than I was about starting the Bryce 100 last month. 

On Thursday afternoon I met Keith at Berthoud Pass and we drove to Grand Lake, where Keith had booked three beds at the hostel. After scouring my memories, I believe this was my first hostel dorm room stay, ever. I've always been a bit averse to communal sleeping, and I'd generally rather curl up in a bivy sack in the woods than share a bunk bed in a hot room full of strangers. But it was a welcome respite for Leslie after days in the dusty mountains. And the Grand Lake hostel is quite nice — stunning location on cliffs above a rushing creek, and rather upscale amenities for $25 a night. Keith and I were even treated to a ranger chat about Rocky Mountain National Park while we waited for Leslie to arrive.

Leslie slept in until the "hiker noon" hour of 7 a.m., and then cooked breakfast for Keith and me. She forgot to charge her phone, which was our main navigation device with the official route, water locations, and notes. (She also had maps, and I had a GPS, but we still managed to get lost several times.) While we waited for it to charge, Leslie packed and repacked her backpack while I paced and nervously pretended to read the history lessons that had been framed and hung on the walls. Finally we set out after 10 a.m., strolling along the shoreline of Shadow Mountain Lake and waving at weekend boaters.

This trip was also my first real exposure to thru-hiking, which isn't unlike multi-day endurance racing. 3,100 miles is a lot of distance to cover in the short weather window between snowmelt and snowfall, and time pressure is always there. Thru-hiking is either mostly or entirely self-supported, so self-care, navigating, and resupplying can demand as much energy as walking. Leslie typically hikes from sunrise to sunset, only stopping briefly to take in a view or filter water from a stream. She eats on the go. She doesn't cook — stale bagels and tortillas with sweaty cheese slices are her "real" food. She drinks cold instant coffee from an empty peanut butter jar, also as she's walking. Since she started six weeks ago, she's only taken two "zero days," or days off. My longest endurance racing effort was 24 days; Leslie is aiming for four months of this lifestyle. I tried to wrap my head around this as we crawled over endless deadfall tangles, muddy bogs, and sagebrush-covered hills along Lake Granby.

Storms moved in during the afternoon, and wind and rain pummeled us on the sagebrush slopes. Leslie threw on a poncho, which seemed like a smart piece of gear, good for multiple purposes (note to self.) I was grateful for a respite from the heat, although it was still warm and now muggy. Monsoon season is here. This will likely happen every day until the end of July, so tomorrow would be the same. Thoughts of this weather in the high country made me uneasy.

It was a pleasant evening on Monarch Lake as we marched toward North and South Arapahoe peaks. I pointed out the mountain top where I stood with my dad and Beat the weekend prior, and Leslie said "really?" with genuine disbelief. Thru-hiking is such an encompassing lifestyle that it becomes difficult to imagine a world outside that narrow strip of trail. Every time we saw day hikers, Leslie would wonder aloud, "Where did they come from?" — as though they had to walk hundreds of miles to reach this spot as well.

Exploring old mining equipment beside Monarch Lake. Leslie also understood that most other people couldn't begin to wrap their heads around what she was doing. Even as she stopped to chat with nearly everyone we passed, she rarely belabored the 3,100-mile hike. We were about a half mile past the Monarch Lake trailhead when we passed two older women gently stepping over a tiny stream. "Are you two going to sleep out tonight?" one exclaimed. After a simple "yes," she said with even more enthusiasm, "Good for you!"

In three short days, we encountered almost 30 northbound CDT hikers, largely in a bubble of folks who left in early May and picked their way through the snowy San Juans. Most were ragged from the experience, talking about grueling eight-mile days and fearing for their lives on steep slopes — a danger of which I have no doubt. Leslie feels no regret about her decision to flip. She's in this for pleasure and joy, not purist sentiments. My mentality would probably fall more in line with a continuous thru-hike if I were to ever attempt something like this — but I'm also a cautious person. Would I have taken on the snowy San Juans by myself, with an ice ax, crampons, and my fear of spring avalanche conditions? Probably not.

Another aspect of thru-hiking culture that I was introduced to on this trip is trail names. Every thru-hiker takes on a trail name that they use to introduce themselves to other thru-hikers or sign into trail registers. The names are bestowed by fellow thru-hikers, generally early in the hike and based on an experience or aspect of one's personality. Leslie's trail name is "Tour Guide," which was apt as she guided me on my little CDT weekend. I used to think people could choose their own trail names and even had one picked out if I ever did a thru-hike, but I've learned that naming oneself is not cool. I'm not sure I'm interested in taking on a name made up by a relative stranger. I mean, I already didn't get to pick Jill ... not that I hate Jill. But I might just stick with Jill if I ever do something like this. I'm a contrarian like that.

One example of the perils of trail names is our interaction with a nice, conservative-seeming 40-something couple from Mississippi. Thru-hikers were always asking whether we'd seen others who might have been ahead or behind them. Several had asked us about a hiker called "Moist." After I ranted about the reasons why moist is the worst word in the English language, Leslie still greeted this woman with the question, "Are you, um, Moist?" The look on the woman's face was priceless — a mixture of curiosity and horror. I had the best laugh I've had in a while.

On Saturday morning, we encountered Sage Canaday running on the High Lonesome Trail. Sage is an ultrarunning star — apparently local to Boulder. He stopped and talked to Leslie for several minutes before scampering up the steep trail at stunning speed. I took this photo as he pranced downhill like a weightless gazelle.

Like clockwork, dark clouds began to gather overhead in the late morning. As a Colorado day hiker, I would look at this weather and think, "Oh well, not today," and turn around. Thru-hikers don't give themselves that luxury. They still have to make decisions based on safety, but they don't have the time to sit out every storm. I knew the High Lonesome Trail led to at least ten miles of exposed ridge walking, at altitudes where I've proven to be quite slow. We looked over our shoulders for evidence of lightning as we nervously climbed higher.

Several cloudbursts just missed us, carrying their damaging wind and hail eastward toward the plains.

 Meanwhile, my exertion levels ramped up too quickly, and I had to concentrate on my breathing and heart rate — I actually brought a heart rate monitor and two watches on this trip so I could pace myself. The urge to sprint off this ridge was strong, but I doubt I would have been physically capable of much more than I was doing. As I explained to Leslie, "I can still move forward almost indefinitely, but my ceiling these days is low."

Between Rollins Pass and Rogers Pass were three miles of overland travel across the tundra — it reminded me of stumbling over the rocks and tussocks of Iceland, and also that I haven't done much of this type of walking since. It's a bad place for Hokas, but at least my ankles are used to this by now. Travel was slow, but it brought my exertion levels down, which made me happy. If only these storms would go away.

Another thru-hiker approaching with the storm.

Our objective, James Peak (left) was still impossibly far in the distance.

Finally, a storm hit us directly, with a gale of wind and rain that was surprisingly frigid. Here it was, 95 degrees in Boulder, and we were as bundled up as we could be at 12,000 feet. Leslie kept drifting off the ridge, understandably — I wanted to be lower, too. But sticking close to literal Continental Divide was the only way to reach Rogers Pass, our next opportunity for escape.

As the storm began to dissipate, we encountered yet more thru-hikers on the ridge. Of course everyone still stopped to chat. These guys seemed to have not a care in the world.

For hours I had been plotting our off-route escape down Rogers Pass, but when we arrived at 5 p.m., skies overhead were beginning to clear. The storms appeared to be retreating for the night, but we couldn't be sure. As we looked up at the broad summit of James Peak, I warned Leslie, "It's only two miles, but two weeks ago that stretch took me 90 minutes. I'm not exaggerating. It will probably be three hours before we're off that peak."

"Should we go for it?"

"Yeah, let's go for it."

Working our way up to 13,300 feet as the sun came out at its evening angle, casting gorgeous light across the slopes. I struggled with the climb, but it wasn't bad. For the most part I kept up with Leslie, and made better time than I did with a significantly lighter pack two weeks ago.


From James Peak, looking out toward Mount Bancroft and Parry Peak. As a rugged CDT alternative, one can actually follow the true Divide over five 13-ers before dropping down to Berthoud Pass. The scrambling looked intimidating but possibly doable — but not with the limited water we had, and not starting at 7 p.m. Neither of us were interested in camping on rocky tundra at 13,000 feet and melting snow for drinking water, so we'd have to save this ridge walk for another day.

We continued to meet a stream of hikers on the peak at 7 p.m., heading for a night in the high country. Probably the better time of day to tackle these altitudes during monsoon season. Leslie always engaged in long talks with the hikers — not only to collect beta about the trail, but also to probe the secrets of their personal motivations. Thru-hikers are all so different, as are the reasons why they're out there. We met a man in his 40s with four kids and a wife at home, living out his dream. We met dude-bros with beards and tattered clothing. We met a 41-year-old Asian man with bulging biceps and a prominent gut who had hiked more than 30,000 miles since he started thru-hiking at 20. We met a grumpy Brit and an Israeli man with perfect flowing curls (honestly, it looked like he washed and styled his hair minutes before we met.) We met perky young women with male companions, and a 62-year-old woman lamenting her slowness while hiking 25 miles a day. Thru-hikers are a diverse and fascinating sub-culture of humans.

Looking toward the ridge we hiked under cloud cover during the day. I was so thrilled to stand on the summit of a 13,000-foot peak at this time of evening, surrounded by a depth of silence and light.

More thru-hikers, sharing beta as they gazed toward plains. One pointed toward a glistening island of buildings to the southeast and wondered with disbelief, "Is that Denver?"

To Leslie I pointed out Bear and South Boulder peaks. "Just below that is where I live." It all looks so diminutive from up here.

Working our way down the backside of James.

The last of the sunlight we'd see for the day. A nearly full moon was rising to the east. Like flipping a light switch, the temperature instantly plummeted. Mittens, hats, and jackets came back on.

We set up camp at 11,500 feet on the tundra. Leslie had wanted to drop below treeline, but I was glad we settled for this spot. The moon rose over the pink horizon, and alpenglow illuminated 14-ers to the south. I took a bunch of blurry photos that aren't worth sharing, but the views were stunning. It was also chilly — there was a hard frost overnight — for which Leslie was less than thrilled. But I was perfectly in my element. And I had time to sit down and cook a meal of Chili Mac with a packet of oatmeal for dessert. Somewhat stupidly, I brought a stove and quite a few of my calories in dried meals and powder for hot drinks, not quite understanding that there would be few opportunities to fire up the stove. It was pack up and go in the morning, then set up and collapse at a dry camp in the evening.

The following morning, I boiled water for coffee as I took down my tent, then drank it while I stumbled through my morning stupor down the rocky trail to 10,000 feet. Was carrying the stove worth it? Yes.

After the long descent it was instantly time to climb (and then drop again, and then climb again) back to alpine country. Welcome to Colorado.

Leslie put snow in her hat to keep cool. I was jealous of that floppy, dorky hat, and wanted one for my own long days in the sun (note to self.)

While traversing across snowfields above the Mill Creek valley, we lost the trail and ventured too far and too low, forcing us to crawl through mushy bogs to the ridge. We wasted time trying to skirt around the steep, snow-covered slope before finally deciding the only way to continue was scrambling directly skyward. It was a tough hour or so, and I started to feel dizzy from over-exertion.

We finally found the trail, a relative super-highway compared to the scrambling we were doing, but still just a cairn-guided route through the boulder field. As soon as my heart rate went down I felt markedly better. This had been a beautiful and fun trip with my friend, but also usefully revealing in where my limits stand. They're not great. Frustrating to me still. But if they allow me to hike 60 miles through the rugged wilderness in a weekend, I can't complain.

Leslie on top of Mount Flora, 13,100 feet.

Keith met us below the summit and hiked back to Berthoud Pass. Thanks to my respiratory limitations, I don't tire the rest of myself that much. My legs felt fresh and my feet didn't hurt. Even my shoulders and back, not used to carrying a weekend load, felt only mildly sore. From this perspective I could almost imagine myself in the life of a thru-hiker. Everyone I met looked tired but strong, gaining fitness every day. But they still have a long, long way to go.

Thanks for the great weekend, Tour Guide. I hope we can do it again, sooner than later.