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Wednesday, July 19, 2017

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. 

25 comments:

  1. Hey Jill. Have you ever had your heart checked? I have a very close female family member that was experiencing similar symptoms with her heart rate being weird at odd times. This would especially happen during exercise at high intensity. She would almost feel like throwing up or passing out for no reason. After a few years of no resolutions they checked her heart and found that she had an electrical issue with her heart in her lower left ventricle that was not firing properly. This required a pace maker and she is now 100% able to do what she wants when she wants. At the time she was in her 40's.

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    1. Thanks for the comment. I had a recent EKG (October 2016) that was normal. However, I've considered asking about having another one, or at least looking further into possible issues. Do you know what tests your family member had to pinpoint their issue? If you want to e-mail me at jillhomer@gmail.com, I'd appreciate any input.

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    2. If investigating cardiac stuff - as hyperthy folks may need to - you might want to talk to a cardio about the Zio monitor - adhesive, grabs EKG data for up to 2 weeks through exercising and showering (carefully, and cover the leads with fresh medical tape before w/o and after shower). EKG and even Holter monitors are snapshots - the Zio can give more info about what is happening and when. You keep some notes and also can click it if you feel something odd so that time frame is flagged for analysis. It definitely showed more for me. (not that that's a good thing but I guess better to know). There are even implants to monitor for years with periodic data xmitted and sent to doc, but they have downsides and would not be the first step. Zio the trick is to use the medical tape (which I got told verbally by the company but they won't put it in their literature - the white roll stuff you can get at drugstores) to keep it on as many days as possible to collect the most possible data. You might "need" a wonky EKG to get it covered - or might not, depending on your doc, insurance, etc. Thyroid problems are so frustrating - with the bonus that they make it hard to think, stay positive, and all the rest of stuff that helps you deal with the problem! Sending all good thoughts your way. If I can be of any help, LMK. (not doc or anything, just have exp as thy, GI, heart & other pt)

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    3. Thank you! I appreciate the perspective.

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  2. Love the little emoticons! It looks like free T3 is still high. I assume that is why you feel so bad?! Is your endocrinologist going to adjust your dose or just give it a bit more time? I know it's hard to be patient!!!

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    1. Stay the course for now. I'm going to try taking one pill in the morning and one in the evening to see if that balances out better.

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  3. Are you going to bike in the Aosta Valley? The Bike mag had a great article in the last issue on how good the MTB is there. https://www.instagram.com/p/BKKkR76BBEb/

    Few more years before it becomes overtaken by hordes like Sella Ronda. Which I biked a few weeks ago and had a great time. It was actually good to follow and speak with fellow riders there since Italy is so notoriously bad in trail markings...

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    1. I've hiked fairly extensively in the Aosta Valley, and I'm convinced I'm not really the right kind of rider for the trails there. But I will check out that article.

      The whole purpose of the Tor des Geants was to market the Aosta Valley more widely around the world. After seven years of what has become a world-class ultra race, the region still doesn't feel overrun that time of year. I'm sure it is becoming more popular. It's one of my favorite places in the world.

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    2. I think the efforts succeeded in making northern Italy way more expensive that it used to be. I agree trails in Aosta are going to be rougher than Dolomites, where it is like miles of downhill flow tails and chunky single track. Although Sella has about 10km of the sweetest loamy forest singletrack east of BC.

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    3. You think it's become more expensive? I haven't really noticed any changes in 6 years. I would love to visit the Dolomites. If it's true what you say about flow trails, I will definitely rent a bike. In Aosta, just about all I've seen are rocky and rooty trails that gain 1,000+ feet per mile. There are occasionally great rideable trails along the ridgelines, but you pay a high price to get there. Personally I don't possess the skills to ride up or down most of the trails I've hiked. Last year I met a British expat in Chamonix who loves to ride the Aosta Valley, but he mostly confirmed my suspicions. However, he tells me there is fantastic winter riding in Val Veny and other valleys.

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    4. I guess off topic in this post, by Flow I meant steep downhill bermed trails with jumps, bridges etc. totally rideable while keeping both wheels on the ground. Then also lots of rocky singletrack and some roots/loam in forested sections. Tons of limestone gravel on fire road sections that make descents sketchy- actually lot more scary than the singletrack. I have a gps track on my garmin page. Just rent a bike with a dropper.

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    5. Ah, that makes sense. That would still be fun to try, but if I'm being perfectly honest, any ride characterized by "steep" or "downhill" is not really my type of ride. ;-)

      I can imagine what you describe in the limestone roads. They must be similar to forest roads in the Aosta Valley and Chamonix. So steep and loose that I struggle to walk down them, fall on my ass if I attempt to run, and yet I see the most janky small cars along those roads! Incredible.

      Thank you for the off-topic discussion. I'm more excited than ever to return to the Alps.

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  4. I'm suffering from a different autoimmune disease (Crohn's) and have watched several documentaries suggesting dietary changes can help w/ autoimmune diseases in general. While I am on medication, I have been eating gluten free and switched to a plant based diet over the past 3 weeks. I have noticed a difference in the way I feel. Could be the Humira kicking in, could be the diet, could be both. My goal is to eventually get off meds altogether because the potential side effects are frightening. Regardless of the lack of studies on diet and autoimmune diseases and despite many doctors not necessarily being on board with it because they are only taught to treat symptoms with meds, it might be worth making some dietary changes - even if just for a month or so just to see if things improve. Good luck.

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    1. You read my mind! I'm considering this. It will probably be an experiment to start after my summer travel plans wind down, in October or so.

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  5. Whoa. That TSH is super low. Sorry to hear you are having issues.

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    1. Most people with hyperthyroidism have undetectable TSH. What's interesting is that autoimmune antibodies will keep it suppressed long after hormone levels have stabilized. For that reason, it's a terrible way to measure thyroid health for hyperthyroid patients, and I've also become convinced it's terrible for hypo as well. Were you able to get your T3 and T4 checked?

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  6. I find these posts really interesting. You approach this how I would; track, track, track, track, then look for correlations.

    For the heart test, you should probably look into a stress test instead of an EKG. It is basically an EKG with you on a treadmill. They ramp up your intensity over a 3 or 4 minute period to see how your cardiovascular system responds.

    Good luck!

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  7. Hi Jill,

    I have been battling HYPOthyroid but have many similar symptoms. Tired, less endurance, etc. I TOO have a high HR when exercising. It always comes right back down after. Running up a gentle grade I hit 170s and have to walk again.

    I saw a cardiologist and we did EKG, ultrasound, and stress test with imaging to try to figure out why. But she basically said, you're fine - get outta here. Heard a podcast about MCV (blood value). It's the size of your red blood cells. Over 95 means they are quite large. When cells are young they are large, but should mature and shrink over time. If they stay large, less of them fit in your blood veins bringing less oxygen. My MCV is 96. Nothing that will alarm a doc but may be at least part of the issue?

    Lastly, along with my diagnosis came adrenal fatigue/HPA axis disregulation. Likely something you could have being an athlete. I worked with a functional doc who got me on some various supplements. I also moved to a whole foods type of diet (nothing processed) and removed most grains. I'm not perfect by any means, but haven't had gluten since Christmas time. I feel a lot better and was able to cut my thyroid meds in half. Something to look into anyway.

    Still working on the lung/cardio endurance. Frustrating that I train like my peers by never see any improvements. Down to running 12-13 min miles to keep my HR around 150. Sucks.

    Best wishes to you,

    Terri

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    1. Hi Terri. Thanks for your comment! The more I read about thyroid/cardiac issues and functional medicine, the more I realize that there are so many rabbit holes in the healthy living realm. It's enough to make me think "maybe I should just chuck all of this and live a happy life with the body I have." After all, as you pointed out with MCV, there are individual aspects in everyone that can't be changed, no matter how much we'd all like to function at the same level.

      That said, I spent $100 on supplements at Rite Aid today. They might not help, but they probably can't hurt!

      I won't characterize the way I feel as fatigue, though it probably sounds that way. It's more like an underpowered car. I think I've compared myself to my old '96 Geo before, but that's much how I view my body these days. That car could go to Alaska and back at 40mpg with nary a complaint, but there was plenty of sputtering and slowness along the way. That said, I do want to take care of my body and possibly one day feel awesome again, so I'll keep experimenting.

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  8. Graves disease is no joke! It causes an elevated heart rate and of course, many other symptoms. I had an extremely difficult time with it 15 years ago and ended up having my thyroid removed after unsuccessful treatments. I hope you can find answers soon!

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  9. I don't want to seem like the wacko here -- we vaccinate and do antibiotics when necessary -- but did you ever consider short-term fasting as an option to let things heal up and the immune system to "reset?" It's a fairly low-risk thing to try. All best: your blog's inspiring even when you're hitting a rough patch. - Ann from VA

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    1. Ann. I agree it's a low-risk thing to try. Three days of initial fasting is part of a month-long autoimmune protocol that I've read up on.

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  10. I have followed your blog off and on since 2006, and read a couple of your books. I really don't comment much.

    I think you should seek out someone that does MFT
    http://www.netmindbody.com/find-a-practitioner

    You might be able to find someone here http://www.netmindbody.com/find-a-practitioner

    I see a wonderful chiropractor in sunnyvale, and I am sure you can find someone where you are at. MFT is cellular nutritional scanning though muscle testing.

    the brain can only guess and the doctor mostly likely really cannot figure out the underlining cause.

    I had on and off major pain in my wrists last summer. I went in to get tested and it was plastic stuck in my wrists. My lymphatic system has always struggled to drain properly and through our upbringing we store food in plastic, eat and drink out of plastic. But the doctor would have never figure it out. I have many other stories.
    I went on the proper herb supplements and it moved the plastic and I never have pain in my wrists.

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  11. Enjoy the Alps. We'll be there at the same time again but this time we're both flying out just before. I had wanted to detour in the car to meet you (finally) but it won't happen this year. Maybe one day. Good luck to Beat.

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Feedback is always appreciated!