Taking my medicine

Last week I dove far too deep down the rabbit hole of Internet health content — synopses of scientific studies, anecdotal evidence, dubious recommendations and subsequent debunking. Combine all of this with a hearty dose of world news, and I emerged feeling hopeless — which is nearly always my reaction to the (non-adventure-focused) Internet. I don't even know why I spend any time in that place. 

Despite this disheartening spiral that ultimately re-enforced skepticism, and despite Beat's well-reasoned argument that trying too many things at once will only yield inconclusive results, I still ended up at Rite Aid with $100 of the most anecdotally recommended nutritional supplements. I contemplated the tedious realities of adopting a restrictive diet (I dislike food prep so much. If they made a Soylent-type product for the autoimmune protocol, I would be all over it.) Finally, my endocrinologist sent the okay to up my medication dose in a way that requires cutting pills in half. Do you know how much I hate that I've become a 37-year-old who contemplates special diets, needs a pill cutter, uses multiple daily prescriptions, and has a cabinet full of dubious supplements? I'm turning into Collette Reardon from the classic Saturday Night Live skits. 

That part of me thinks I should just chuck it all and feel the way I feel. But in this physical state, life loses some of its shine. My mind becomes a dull, unfocused place, overrun with unjustified anxiety. My body becomes strangely detached — both over-tired and over-stimulated, in a way that I believe I've previously compared to an underpowered car, my old 1996 Geo Prism. I imagine that car when I am sputtering up a hill, gas pedal pressed all the way to the floor. That thing would groan and rumble, but it did make it all the way to Alaska and back. And despite hard use, the motor was still running well when I finally let it go with 200,000 miles, expecting it to be sold for parts, and then catching a glimpse of it on the Interstate over a year later. Can I really glean hope from the performance of an old car? No, probably not. 

But performance is secondary. Right now, I'd rather rebalance my mind. If I thought I could do that by laying in bed all day, I probably would. But after a two-hour nap on Saturday, I felt more detached than ever. Beat is wrapping up his training for the Ouray 100, and wanted one more long day in the mountains. I was admittedly dreading this outing, because I don't feel so great in the high country. I feel underpowered, dizzy, and a little bit desperate, in a way I've described as oxygen-deprivation, although chemically it's probably more complicated than that. It's sad to spend a Colorado summer fearful of mountains, so I'm trying to overcome the aversion.

Beat planned to push hard to the top of James Peak while I meandered part-way up the mountain. He completed the seven miles with 4,000 feet of climbing in just over two hours, which is impressive. I was surprised to see him at the saddle — even moving as slowly as I had been, I expected to make it a little farther up the mountain before we met. But it all worked out well; I didn't exhaust my circulatory system trying to keep up, and thus felt a lot better than I would have expected to feel at 12,000 feet.

A nasty-looking storm followed Beat off James Peak. We both made efforts to pick up speed as we climbed onto an off-trail segment along the Continental Divide. I expected the storm to catch up to us, but it never did.

Moving toward sunny skies. The wooden posts signify the Continental Divide Trail.

This is a wonderful ridge walk, skimming the lip of dramatic cliffs above turquoise lakes.

I just can't feel bad in this place. When I'm back at my computer, like right now, I remember the sputtering and desperation. Yet all of that can so effortlessly fade in the moment. Maybe the excess hormones finally burn off, and I'm freed of my weird anxieties even as thunderstorms bear down and objective dangers rise. I don't know. I suppose my body has always been this way. It feels like happiness, and chemically it's probably not more complicated than that.

As is often the case with these longer outings, I felt better as I went. We swung around the ridge onto the loose gravel of Rollins Pass Road, and started running. And even though for me it was little more than a shuffle, I was still chuffed to manage simultaneous running and calm breathing at 12,000 feet. It was enough running that toward the end my right IT band began to hurt, which was so satisfying. I'm sure it's difficult to justify, but I genuinely begin to miss regular aches and pains. In many of my recent efforts, aches are either eclipsed by breathing difficulties, or I just can't go hard enough to experience them.

The collapsed tunnel on Rollins Pass Road. Spooky. I always want to climb inside, but then I see the huge boulders suspended in broken wire netting, and think better of it.

Working our way down to one of the Forest Lakes to eat a snack, filter water, and collect a few mosquito bites. This seven-hour outing was re-affirming — that I remain capable of motion where it counts, that I remain capable of soaring feelings of joy, and that summer in Colorado — despite my current physical state — is pretty fantastic. I probably just need to spend more time in mountains, as far away from the Internet as possible. 

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.