Wednesday, February 15, 2017

Thyroiditis

Bear Peak, during a Sunday hike. I had new info about my health, and felt both better and worse than I have in a while.
Just over two weeks ago, I was having dinner with friends in Fairbanks a few hours before heading to the airport. We were at a Thai restaurant with harsh lighting, and I was describing my exercise woes to friends I hadn't seen in a while. The quick explanation is: "I can't breathe when I exert myself, really, at all. It doesn't take much before I start gasping and become dizzy, and sometimes I have to sit down. I used to be able to run entire 50Ks with an average heart rate in the 160s, and now I rarely hit that number before I'm breathless." Corrine, who is a family doctor, looked over at me and said, "You know, your thyroid looks enlarged."

That set off a series of medical visits, and the latest was to an endocrinologist today. I'm very lucky to have good health insurance (thanks Beat!) and medical providers who sympathize with my desire to participate in the ITI, so they fast-tracked me through several tests ahead of the race. This much now is known — I have an autoimmune disorder, currently guessed to be Hashimoto's Thyroiditis but possibly Grave's Disease or both. My immune system is attacking my thyroid, which in turn is flooding my body with hormones that stress it out, all of the time. Hyperthyroidism. It's bad — my heart is stressed, muscle tissue is breaking down, I'm nervous and dizzy, my mind is foggy, and I'm frequently short of breath.

It explains quite a bit. The exercise intolerance is only part of what's been worrying me, but I haven't mentioned my other issues to anyone, for fear that I was losing my mind. Bouts of anxiety at odd times. Waking up in the middle of the night drenched in sweat and shaking. Sudden tremors. Staring blankly at a computer screen until my vision blurs and I can't quite remember how to read. Occasionally feeling like my heart is racing out of my chest while I'm wheeling a cart around Safeway, and wondering if this is when I'm finally going to have the heart attack I've been half-expecting. If this is all the result of a wonky thyroid that can potentially be fixed — and not early onset of heart disease or dementia — that would be fantastic.

What's not fantastic is the timing. If I'd caught this months ago, I might be in a better spot right now. But it's now ten days before the start of the ITI, my body is still flooded with thyroid hormones, and my heart is in real danger. Dehydration and fatigue could set off a thyroid storm that could quickly become life-threatening were I not able to seek immediate medical attention, which would be difficult if I was, say, somewhere remote like the Alaska wilderness. Heart damage is likely. Heart failure is a possibility. It's not remotely worth the risk.

So I have to drop out of the Iditarod Trail Invitational. This has been more distressing than I expected, given how uncertain I've been about the race, because of how bad I feel during and after heavy exertion. The decision is still sobering. It's not fun to know that my body is broken. As I told my friend Corrine, I almost preferred it when I believed my symptoms were psychosomatic, something to overcome with the power of positive thinking. My mind has been drifting to increasingly dark places recently, and I'd been counting on the rejuvenating power of the Iditarod Trail to reset my head. Now it's just me and my anxiety and my inability to concentrate, walking as slowly as possible because I've become frightened of my own heart.

But I can believe it will get better. Beat certainly believes it. He's already threatened to sign me up for coaching so I can crush the Tour Divide in 2018. This makes me laugh. But to feel normal again — just normal, like I used to feel before summer 2015 — would be amazing.

Thyroid wasn't even on my radar three weeks ago, but obviously I've done a lot of Internet reading in the past week. This is a great essay from the Guardian by a novel writer with Grave's Disease: (Link here.) Her hyperthyroidism is clearly much worse than mine, but I related to many of her experiences. A sentence in her lede especially struck me:

"All this I recall with wonder, for that moment has crystallised in my memory as youth’s last day before, at the age of 34, old age struck me like a brick in a sock."

I too have a moment when old age struck me like a brick in a sock. I was 35 years old, and it was a hot June day in 2015, somewhere in southern Wyoming. I looked across the beige desert and felt nothing, knew nothing, saw nothing. I was sick, yes, quite sick with bronchitis. And I was fatigued from this difficult multiday mountain bike race, the Tour Divide. But there was something else, something deeper, pulling me inward. I knew it then, but I didn't understand.

Here's hoping medication can reset my body. If I do in fact have two different autoimmune disorders, they're going to be that much harder to manage, and then surgery may be necessary. Hopefully I'll know more in the next few days. 

33 comments:

  1. It must be relief to finally have a solid lead. Good luck on this, Jill. I've seen auto-immune diseases in action and they can be quite puzzling. They can dominate your life for an indefinite amount of time, then disappear.
    Alaska and other pursuits will still be there. Your readers have been helpless watching you struggle but all along knowing really how strong you are and can be.

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    1. Thanks Jim! I've appreciated your support over the years.

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  2. I have the opposite--hypothyrodism, which makes me feel sometimes like I am rolling a sofa uphill. Plus no more shiny hair, which I mourn too much. Good news is medication does help and I hope it does for you as well. It's hard to reset your thinking forever, which is what an autoimmune disorder does. The ITI will be there next year.

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    1. Do you know the underlying cause of your hypothyroidism? There's a chance I swing between the two as my thyroid fights for its life. If that's the case, I may I actually feel better during the hypo episodes, looking back on swings in symptoms over the past two years. Autoimmune disorders — so awful, and yet so interesting.

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  3. I have hypothyroid as well, and funnily enough I posted on fb today asking if people with the disease were experiencing night sweats, random anxiety attacks, and breathlessness - or was this just anxiety post-election? I'm going to a doc tomorrow. I have had Hashimoto's for 5 years, and I'm still tweaking meds as my thyroid sputters to an ignominious death. My only ass-vice which you have not requested - I have gone through phases where I just let my GP manage my thyroid. Bad idea. Always keep it under the care of an endocrinologist. It's easy enough for a GP to manage your levels in your bloodstream, but only an endocrine specialist can help understand and manage symptoms. This is manageable. I'm hoping you'll feel much better very soon.

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  4. I know it must feel totally overwhelming right now, but this is good news. Now you *know* what's wrong, and can get medication that will actually work. You're going to feel better and better and better.

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  5. I was diagnosed hypothyroid in 2000. It was like walking out of a bank of pea fog I didn't know I had been in when I got my synthroid med right. The world just cleared. It is a wonder drug! Lots of good info here https://thyroidpharmacist.com/ It is exciting that you may have a possible answer and solution to your many symptoms.

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  6. My thoughts are with you Jill! You'll crush it in 2018.

    Jessica Reed

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  7. Missing this year's race is a bummer, but figuring out why you've felt the way you have is FANTASTIC. I've followed along since well before your struggles and reading about the turn south you took a few years ago was heartbreaking. Here's to a solid late 2017/2018 calendar for you!

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  8. There is the light at the end of the tunnel. Positive thinking is always useful. Be patient. Good luck.

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  9. So sorry to hear. But a diagnosis is better than guessing. It is hyper not hypo as several commented right? Have they misdiagnosed your asthma before? I'm not aware of a connection other than they are both immune disorders. But autoimmunity is so different from hyperreactivity. Best luck with treatments!

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    1. Grave's Disease is an autoimmune disorder that causes hyperthyroidism. My rudimentary understand of it is that the thyroid is releasing extra hormone as it fights against the antibodies. However, I haven't tested positive for Grave's Disease yet (I might.) My antibodies are sky-high, though. More than 100 times the normal level for Thyroperxoidase. So my thyroid is definitely being attacked.

      I may have been misdiagnosed with asthma. I definitely have allergies. And I definitely feel improvement with the Ventolin; perhaps that's all psyhcosomatic; I don't know. Graves disease reportedly worsens asthma, and skin rashes are another symptom. Perhaps I have both and there's another connection between the two.

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  10. Jill, I don't know you but saw this post on Facebook through a friend of mine. I have had Grave's disease for many years. Took a long time (5 years or more) for anyone to put the pieces together and figure out that I had an overactive thyroid (hyperthyroidism). As my doctor said when he first diagnosed this, "You are either using a whole lot of meth or you have an overactive thyroid, which is it?" I had my thyroid removed in 2001 at age 39. This was the only cure for me. Neither radioactive iodine or daily medication could regulate my thyroid. Since the thyroidectomy I have been so much more healthy and happy. I can do so many things I could not do before and am so appreciative of those gifts. A quick summary: Resting heart rate went from 100 to about 55. I no longer needed to wear glasses. I could think again. My ridiculously excessive anxiety disappeared. My need to eat 6000 calories a day went away. I could barely run 1/2 mile, I have completed two half marathons since. Anyway, you get the picture. Get yourself fixed and you will be fine. Best wishes to you and your journey!

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    1. Thanks for sharing your experience! Your condition sounds severe. I'm definitely not nearly that wound up. My diet and weight have all been fairly consistent for years, and I'm missing some of the other symptoms of hyperthyroid, but perhaps for me it all came on too slowly to notice. I'm glad the surgery worked for you! I may be headed down that road depending one what tests find, and whether medications work. Glad to hear there's a light at the end of the tunnel.

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  11. I am hopeful for you. This sounds promising, albeit a pain-in-the-ass.

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  12. It's good to read you've found out what's been happening and there's strong potential for a fix. About the admitting you don't have early onset dementia, not having it is great! But, having people THINK you have it, allows for some pretty cool latitudes! But, the cat's thyroid is out of the bag now. You're forced to always wear matching socks. Beige ones.

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  13. Hashi's is soooo common these days but really treatable and reversible but requires a lifestyle change. Check out this Autoimmune Wellness site, they're also on FB. These women are the real deal, and I know one of them has Hashi's, these two ladies have been working hard to inform thousands of people, mostly women, how to heal from autoimmune disorders and live strong. And they just published an incredible book that is a guide to healing. http://autoimmunewellness.com/

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  14. That's a bummer, but an accurate diagnosis is the first step to getting back to normal health. Good luck Jill! *hugs*

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  15. We've talked about this offline (well online but not public online) but I thought it worth mentioning: listen to the doctors' advice regarding acceptable activity levels with a lot of skepticism. As in, listen for them telling you between the lines whether something is a good or bad idea, rather than taking their words at face value. For instance, "can I go to the gym and lift weights" means many different things to different people. So ask for EXTREME specifics.

    Docs will rarely tell you "no, don't do that." They will give you weirdly wishy-washy guidelines and let you make your own decisions. It also is helpful to describe to them EXACTLY what the activity involves, not just "go on a long bike ride." They might be thinking a long bike ride like a leisurely pedal down a perfectly paved path. And even when docs give you the green light for something, take that with a grain of salt and hold off a tad.

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    1. My experiences with doctors have shown that extreme specifics are hard to extract when everyone is different in their response to any illness or condition. The doctors I've consulted have all been surprised that I'm currently so high-functioning given my numbers, but that just means my body is reacting differently. They go by feel — don't do anything that makes you feel bad. Clearly that's not advice I'm terribly good at following, but I'm really going to try.

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    2. Oh, they are very hard to extract, but it's worth doing. I think that my first spine surgery was in part compromised because of this type of miscommunication/lack of communication. Now I am very specific about the activities I want to do, and if my spine doc hesitates at all, I figure that's a "no." I'm waiting for the day he looks at the x ray, proclaims my vertebrae fully fused, and says "no more restrictions, have a nice life!"

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    3. P.S. Just wanted to provide input re: internet info on thyroid. It sucks to the point of being useless to read about it. Find a good doc/endo, and do what she says to do.

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  16. I am so glad that you made that trip to Alaska and dinner with Corrine. So glad you didn't set off on the IT, not knowing what you know now. All the best for a quick positive outcome.

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  17. Happy you found an explanation, sad it is something you have to battle. But it sounds like you have the right tools and support to control it! Good luck!

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  18. Anonymous7:52 AM

    Best wishes. Been reading your blog from the start. From, some dude in Nebraska living out adventures through you and others. Thanks, for so much.

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  19. Tonya S.9:02 AM

    Finally learning what ails you is more than half the battle. So glad you finally got a diagnosis and can start to figure how to feel better!

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  20. Jo, Dorset7:55 AM

    I am so glad you have had a breakthrough, and I empathise with your extreme disappointment about the timing.

    Like other commenters, it took me years of feeling crappy, & persistence in the face of dismissive medics, to get my hyperthyroidism diagnosed (mine was not auto-immune, instead it was due to overactive nodules). I ended up paying thousands of pounds for radioactive iodine treatment which took a long time to recover from, including 5 months off the bike.

    But I have recovered, and thanks to large daily doses of thyroxine (now I am hypothyroid)... like those above, am now really active again, racing & running, and happy with my energy levels.

    In my experience too, even specialist doctors have no idea how to advise on exercise levels, which does mean taking it steady with plenty of recovery time. I have had a coach for the past year and I find she tends to do better than me at monitoring how I'm doing and seeing the patterns.

    Anyway, I hope your recovery is quicker than most, not least because I would miss reading your great posts & wonderful pictures. I think Beat is right getting you to have a long-term focus and I hope you find a new challenge soon.

    All the best x

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  21. Three cheers for Dr. Corrine...funny how sometimes the thing that gets someone on the path to recovery is that quiet, "You know..."

    Best wishes for a full recovery, Jill.

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  22. WOW! Go away a few weeks and BAM! You've FOUND OUT what the problem is! That's pretty much a small miracle! (WAY TO GO CORRINE!) So now you can finally work on a fix...knowledge is power! Sorry about your ITI this year, but just imagine how much better you'll feel NEXT YEAR at this time! And I live for the day you hit the TD again (cuz I live vicariously thru your exploits!) I remember feeling so sad when you stopped and then dropped out of your last attempt. Seems so long ago, and you've been fighting this since then...must feel like a lifetime to you! Here's hoping you find the right Dr. and get this under control, and can get back to your fun-crazy outdoor life!

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