Wednesday, October 18, 2023

Thyroid update 7


Whenever life feels all uphill, I find that a literal uphill slog always helps.

Hello, old blog! For six months, I've switched my online writing efforts to Substack. I switched because I hoped to expand my subject matter beyond obscure outdoor adventures and potentially reach new readers. Still, old habits die hard. I'm still mainly writing about obscure outdoor adventures, and my reach hasn't exactly blown up. But the Substack is up to nearly 700 subscribers and I am grateful for all of you!

I planned to use this blog for occasional personal updates. My ongoing health journey seems a good place to start. My last update was this time last year when I wrote about autumn ennui and my frustrations with the health purgatory I was in at the time — subclinical hypothyroidism. To summarize, my thyroid became a problem about eight years ago when a bunch of antibodies created by my own dumb body descended on the gland and launched a full-scale attack. The thyroid responded by overproducing thyroid hormones to a toxic degree. This resulted in all sorts of alarming symptoms such as tachycardia, tremors, muscle weakness, shortness of breath, brain fog, and the not-insignificant risk of cardiac arrest. 

This was diagnosed as Grave's Disease in February 2017, and I went on medication to reduce my body's absorption of the overabundance of thyroid hormones. Over the next year, my thyroid slowly calmed down. By November 2018, I was declared "euthyroid" and was able to go off the medication. But my doctor warned me that I was unlikely to stay in remission for life. I'm still a prisoner to those infuriating microscopic snipers that my body sent out to attack itself — meaning I'm still full-up of TPO antibodies. Some Grave's patients always overproduce hormones, but the vast majority of us experience a slow, sputtering battle as our thyroid fights for its life for a number of years before it finally gives up. When and to what degree it gives up is a matter of debate, but afterward we need to take replacement hormones to restore our health. My endocrinologist admitted this was likely before cutting me loose to fend for myself because, you know, health insurance. 

And sure enough, the measure used to determine thyroid functionality — TSH — continued to creep higher. Thyroid Stimulating Hormone is the hormone that tells your thyroid gland to get to work. It's a sort of thermostat, cranking up the heat when the thyroid is being sluggish. When I was hyperthyroid, my TSH was at 0.0. When I was taken off Grave's Disease medication, it was at what is considered an optimal level, 1.4. The standard for "normal" thyroid function runs between 0.5 and 4.5 mIU/L. However, the upper limit for 97.5% of euthyroid (normal) people is 2.5 mIU/L (Source). People who land above that range but under the hypothyroid standard of 10 mIU/L must languish with the uncertainty — am I healthy? Am I slightly not healthy? Doctors don't know the answer and studies are mixed. The Internet overflows with theories and complaints about life with subclinical hypothyroidism — for good reason, I believe.

I can't say I've felt "normal" since before 2016. But my best years were definitely between 2018 and 2019. By 2020, my TSH hit 3.5, and I first started to feel something off with the levels of fatigue I experienced at odd times, my sudden inability to sit around the house without a blanket, hair that was thinning again after growing back thicker following the hyperthyroid years, and my useless brittle fingernails that I must keep trimmed to nubbins to prevent them from breaking off. Things like that. It was also 2020, which was an odd time for us all. And I was still "normal," so nothing could be done.

I ignored my thyroid for the entire volatility of 2021 and most of 2022. But by October, routine bloodwork at my physical pegged my TSH at 5.25 mIU/L. My cholesterol was also 263 mg/dL, which isn't just borderline high — it's high. As recently as 2019, my metabolic panels were pristine, so this was a surprise since my weight, activity levels, and diet hadn't changed. Maybe low thyroid hormones are affecting my metabolism? But my primary care doctor did not think this was likely. So off I went, into another year of purgatory. 

Over the winter, my mental health took an enormous dive. I've struggled with anxiety for years, really since I was a child. But the winter of 2022-2023 brought a sudden dip into depression — deep lows that had no basis in anything I thought should be affecting my mood. The depression in turn exacerbated the anxiety, and it was all-around an awful few months until I started taking an antidepressant in February 2023. 

October 2023 rolled around, and with it the autumn ennui that I interpreted as unresolved trauma and thus began EMDR therapy with my counselor. My sleep improved substantially with the antidepressant, but since I returned from Europe, I've been sleeping a ton. Upwards of 10-11 hours a night if I don't set an alarm. I've gained almost 15 pounds since May — summer is a time for adventure and not a time to watch my diet, and I just spent several weeks in Europe where food is delicious, so it makes some sense. But still ... 15 pounds seems high for what I've always understood as my body's calories-in, calories-out ratio. 

I went in for my annual physical last week. My TSH level measured at 8.72 mIU/L. Even worse, my cholesterol is still 262 mg/dL after all of the changes I made over the past year. I cut way back on ice cream. I added fiber. I switched to low-fat dairy and limited other sources of saturated fat. I gave up eggs! WTF.

My primary care doctor referred me to an endocrinologist, and I got in fast thanks to a new doctor who just started at the clinic where I was treated for Graves Disease. She thinks it would be helpful to start on a low dose of thyroid hormone replacement to see how I respond. I haven't had my thyroid hormone levels officially tested in a few years (I used to track these through self-ordered testing, but haven't yet this year.) But I'll have those tested in two months, hopefully when I'm in a better place all around.

I'm excited! Truthfully, I've been reluctant about thyroid hormone replacement because dipping back into hyperthyroid territory would be awful — I know how it feels and I definitely do not want that. But there's little risk on a low dose, and I'll check in soon enough. Perhaps I'll start to feel like I felt in 2018 again. That would be amazing. If that happens, I definitely want to celebrate by relaunching a winter training routine and signing up for a spring race. Right now I'm thinking either the White Mountains 100 in Fairbanks (which hasn't been officially announced yet) or the Bryce 100 (for which I'm not currently qualified and would have to finish a 50-miler first.) Hundred-mile ultramarathons are so rewarding but so hard that I want to stick to familiar territory for my foray back. By March or May 2024, it will have been five years since I last finished one, which is not a trivial amount of time.

Autoimmune disease is the pits and I have one of the gentler ones ... although I know I'm at higher risk for other autoimmune conditions, so I count my blessings each day that I "only" have a wonky thyroid and asthmatic lungs ... and generalized anxiety ... and mild depression ... and seemingly incurable grass allergies ... and chronic back pain ... and a tendency to fall on my face with such frequency that my primary care doctor laughed at loud when she saw all of the items on my 2023 chart. 

Perhaps it's just life that's the pits, and we're all doing the best we can to get through it. 

I'm grateful for the medical community and all of the assistance they've given me in this regard. Thanks, science. 

I'll write another update about my progress. If you're interested in my past thyroid updates, you can find them here:   

Thyroid update: April 12, 2017


  1. Plus one for EMDR therapy! Best of luck with the thyroid stuff.

    1. Thank you! I’ve only done one session so far, but it’s intriguing. My brain seems to have a very difficult time “letting go,” so if EMDR works for me, it will be a game-changer. I’m glad to hear it worked well for you.

  2. Hey Jill, I can't log in to comment, for some reason. It's Penny in the Pyrenees here.
    Re cholesterol, I've spent the past 8 years understanding all I can about this topic! Most important thing is that high cholesterol does not, in and of itself, cause cardio vascular disease! That is a complete myth!
    Other factors such as high blood pressure, insulin resistance, poor gut bacteria and high hba1c (to name but a few) are all big contributing factors.
    Is 262 mg/dL your TOTAL cholesterol figure? Do you also have figures for LDL, HDL and Triglycerides? If your HDL is high and your Trigs low, then science suggests you have a healthy metabolism and your body is utilising lipids well.
    Cutting out processed foodstuffs, ditching the sugar (I know how hard that will be for you!) and starchy carbs then eating more healthy fats and gut-friendly foods such as probiotic full fat yoghurts, kefir, kimchi etc will all help your metabolism.
    Let me know if you'd like any links to papers/websites that shed some interesting light on the cholesterol myth, won't you! It's a fascinating topic!

    1. My Triglycerides are on the high end of normal, as is my HDL cholesterol (90) LDL is high, 144. But my blood glucose was at the bottom end of normal range; I actually got a compliment from my doctor for reducing my blood sugar substantially since my last test. But yes, the other stuff … definitely something I can work on. And you are right … sugar is the toughest thing to ditch. It’s just such an effective source of quick energy for exercise and so delicious! I’d love to read the papers you suggested if you want to share some links.

  3. Hi, anon here but really Mary E. I've been on levothyrox for years now and only have had to adjust a few times. And I had to speak up when I was at 4 and felt awful. Now I take one lower mcg one day a week and higher on 6. Annoying for sure but it works. Good luck!

    1. Interesting! I have some friends with Hashimotos whose levels swing wildly. I hope it ends up being pretty straightforward.

  4. Patrice here! I do love keeping up with you on substance, but of course I’m still a fan of old-fashioned blogging, especially because I get to comment!!

    I was excited to see you were posting a a health update because I wondered how things were progressing in that arena … turns out not so keen!! Yikes! I hate that you have to endure purgatory and drastic impacts on your physical and emotional wellbeing. I am still hoping the second half of our 40s is better than the first half…or as my older friends promise: it gets better in our 50s!

    1. Yes. Sounds like once you get menopause and the mid-life slump out of the way, the next couple of decades are awesome! (We need to keep telling ourselves this, don’t we?)

  5. Oof, that must be such a pain to be dealing with. I'm glad you updated and I'll echo Patrice (because we commiserate on peri issues often) the 40s are such a whirl of a time, I didn't know we'd be dealing with all of this. I hope your new plant for managing it works out.

  6. My daughter, Susan, age 50, was born very hypo-thyroid. As you already know this is an up and down life. Susan has managed with crisis, and more and more even planes. She has adjusted her life with low level athleticism, and having healthy children. She has not chosen to be athletic, so I think hypo-thyroidism is not the cause of that. She is cheerful, and active, though not your level of physical. Helplessly, all I have is sympathy for you, Jill.


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