Friday, May 19, 2017

Thyroid update 2

Although not the most compelling subject to write about, I've decided to post regular updates about my dealings with Graves Disease, both for my own reference for others who lead active lifestyles and struggle with thyroid issues. I've found similar accounts to be helpful. 

Since being diagnosed in mid-February, I've taken a daily dose of 30mg methimazole — a drug that suppresses thyroid function. For about two weeks in April, I experienced what seemed like symptoms of an underactive thyroid — I'd become sleepy by noon and stay that way, even if I took a nap. I lost more hair than usual; knotted clumps would come out when I brushed my hair after a shower. My fingernails flaked off, down to nubbins. They've only now started to grow back. None of these symptoms were alarming enough to warrant a trip to the doctor, so I decided to wait for my May 12 blood test to see what was happening.

May came around and I hit another upswing. By May 12, I was feeling downright perky — that was the day before Quadrock. I even had an allergy shot in the afternoon — something that usually leaves me feeling more downtrodden — and it didn't make a dent. But the labs ultimately revealed that I had dipped into the hypothyroid range. My thyroxine levels were below normal, even though TSH was just about normal (last month, my endocrinologist told me it takes "many months" to bring TSH up. But it's been fewer than three.) 

So my dose has been lowered with expectation that it will be reduced further next month. Interestingly, this week I've felt what I've come to recognize as "hyper" symptoms again — some jitteriness, the weird itching on my shins. These symptoms are very mild if they're anything at all (beyond psychosomatic.) I now have several new questions to ask my doctor when I see her in June, including whether the rollercoaster is real — do I really swing between hyper and hypo in a given day or week? And if so, how do I manage this? 

Lifestyle and diet may play a role, but in this short time period, I haven't yet found a pattern or correlation in my personal experiences. I'm just as likely to feel fantastic after a long run as I am to succumb to "extreme sleepiness" at 9 p.m. on a rest day. As a side note, the sleepiness is an interesting experience. I expect it isn't extreme at all; this is just how normal 37-year-olds feel. But for the past six-plus years I've become increasingly more restless at night, with periods of true insomnia. Even during what I considered good sleeps, it wasn't abnormal to get up four or five times in the night to use the restroom. My father has sleep issues, so I figured this was just my lot in life. Then I went on thyroid meds, and now I have slept through the entirety of nearly every night since April. And I wake up just after sunrise, on my own. It's all so strange.

So I'm a sleepy morning person now. But this doesn't seem to affect my active energy levels. Because my breathing is so much better and my heart is stronger, *all* of my workouts feel significantly better than they did during the months prior to March. Regardless of how many miles I have on my legs that week, or how sleepy I was at home, it always feels like I can run and not be weary. Of course I know this isn't the case. Contrary to what my blog posts might portray, I am making efforts to tread lightly. 

However, as the recent blood tests show, I am now a person with normal thyroid levels — actually mildly hypothyroid levels. Thus, I am not in the immediate danger that I was always in, without knowing it, when I was hyperthyroid. The goal is to never go back there again, obviously. Since my body has been so responsive to medication, I intend to stick with it indefinitely. 

I'm thrilled about how significantly three little pills have improved my life. Although I mostly write here about my outdoor exercise and related struggles, easy breathing is almost a secondary perk. The most encouraging improvement has been a sharp reduction in "brain fog." Even when I'm sleepy, I'm usually still clear-headed enough to work, write, terrify myself with newspaper reading, etc. The brain fogs were nerve-racking. For a time, I wondered if I was developing early-onset dementia. I never said anything to anyone about these spells of listlessness and confusion — as much as I griped about my breathing — because they were truly terrifying. Even thinking about them directly made the possibility all too real. If anti-thyroid drugs are a cure for brain fog, they're worth any other negative symptom. 

 And now, snow photos! Three feet of snow was a pleasant thing to wake up to. The power was out again, the inside of the house had become downright frigid, Beat was out of milk, and we realized our Starbucks Vias had expired in 2015. I still thought it was an awesome morning.

 The goldfish ponds are frozen over again. Although I could live with endless winter and be happy as can be, I've been fretting about the goldfish. They've made it through much worse, so I'm sure they're fine. It is interesting how much emotional energy I've directed at the animals around here — the fish, the hummingbirds, the deer leaping through this concrete snow. I just hope they're all okay.

 An update from the power company told us that we'd likely remain in the dark until Friday evening. I was perfectly content to sit by the woodstove and read a paperback, but Beat seemed a bit panicked about his lack of milk. He also hoped to put in some hours at the office today. So we went on another plow adventure. Riding in this Silverado as it plowed through the concrete snow was like standing on the edge of an icebreaker in the Arctic, watching icebergs build to terrifying proportions before crumbling away.

 We managed to break an escape route to the main road, and decided to carve out an hour for another short snowshoe adventure before heading to town. And I do mean short. This was 1.8 miles in an hour and fifteen minutes. We even took turns breaking trail. Who needs a Stairmaster ... if by Stairmaster you mean a machine filled to knee level with loose sand, jutting upward at impossibly steep angles.

 Beautiful, foggy morning, though.

 Back in town, I went to the gym and realized I had strained some shoulder muscles, either from snowshoeing or shoveling this leaden snow out of the driveway. Life isn't quite as easy here as it was in California, but a mid-May snowstorm is one of the many things that makes it all worth it. 


  1. Amazing weather! The creeks are gonna be raging in a few days.

  2. Interesting experience with the hyper/hypo. Your hypo symptoms are my daily ones, and you have convinced me to go back and test for T3. It does seem like your meds are working--that's great. That snow is amazing but I did snicker at Beat's panic about being out of milk (in a nice way). I suppose I would do the same about chocolate. We all have our necessities!

    1. I would definitely request a full panel if you haven't had one done in a while. For anyone interested in the technical details, here are my numbers:

      Feb. 8:
      TSH: <0.015 (Normal 0.45 to 4.5)
      Free T4: 4.18 (Normal .82 to 1.77)
      Free T3: 19.90 (Normal 2.0 to 4.4)
      Thyroid peroxidase antibodies >900

      Feb. 15:
      TSH: <0.006
      Free T4: 4.43
      Free T3: 18.7

      April 4:
      TSH <0.006
      Free T4: 1.33
      Free T3 5.2

      May 12:
      TSH: 0.03 (Normal 0.45 to 4.5)
      Free T4: 0.6 (Normal .82 to 1.77)
      Free T3: 3.0 (Normal 2.0 to 4.4)

    2. Also, I should note that I'm not certain I'm experiencing hypo symptoms. Symptoms of hyper and hypo overlap in many places (hair loss and dry skin/fingernails, as well as fatigue, are caused by both.) The labs show a steep downward arc in my thyroid levels, but no indication that they fluctuate on a daily basis.

      I did forget to mention the one symptom I was experiencing that only happens to hypo people, which is being cold all the time — huddling in blankets even when it was 70 degrees in the house and overdressing when it was really mild outside. All of these symptoms mostly faded by ~May 1 (I really should keep a better journal of these things.) But as of May 12, my numbers would not indicate that I was low enough on T4 to experience symptoms of this severity. And indeed, I was no longer having these symptoms.

    3. Mary - I'm another person with a messed up thyroid. I've been taking thyroid hormone orally for a long time because most of my thyroid gland has been destroyed. Most people can supplement with only T4 (thyroxine) and their bodies will convert some of it into T3. A small subset of people's bodies can't convert T4 to T3. They feel lousy when they take only thyroxine, and their T3 numbers will be low (or even just borderline low). For me, taking T3 (lyothyronine) in addition to T4 (thyroxine) made a world of difference in how I felt. I am part of that small subset that can't convert T4 into T3 adequately. Anyway, get your T3 tested! I always insist on the full panel, even when my doc says that seeing TSH would be enough. It could make you feel much better to take T3 orally. (All of that being said, I still am in the "always cold" even when it's 70°F outside category despite my decent thyroid numbers these days.).

  3. Geez. What a storm! But isn't breaking trail on snowshoes great! I love going 0.5 mph or less and sweating up a storm! It's so different than zipping down a summer trail (which, ironically, is what we're doing up here in the middle of Alaska).

  4. Thanks for sharing this Jill! I've been doing a whole lot of research on Hashimotos which is the hypo-thyroid auto-immune disease. If I'm not mistaken Graves is also an auto-immune disease.
    The big thing I've come across is that these are not so much thyroid diseases as auto-immune diseases. A lot of suggestions on diet to lower thyroid anti-bodies, which in turn resolve a lot of symptoms that remain despite good thyroid levels.
    You might want to check out Although she specializes in Hashimotos she may be able to direct you for Graves.
    And I'm sure it will be way more helpful for you since she is in the States - trying to figure out equivalents for her suggestions her in SA is something else.

    1. Hi. Thanks for commenting. I have researched the autoimmune protocol. I admit to being a skeptic — it seems there's plenty of wishful thinking and placebo effect surrounding the idea, and I've seen just as many accounts of these types of treatments doing nothing for folks as I have of it being effective. I'm not opposed to making lifestyle changes or changing my diet. However, you can probably understand where the skepticism limits willingness to experiment, especially when traditional medication has been working for me. (My thyroid levels are down, I'm feeling generally better.)

      A commenter on another post recommended the functional medicine approach. I ordered some books for my Kindle, but I also admit to having information fatigue right now. The more I read about leaky gut syndrome, the more I think, "what a bunch of bullshit." Of course this isn't helpful — I do need to keep an open mind. Thyroid wasn't even on my radar four months ago, and I can't absorb everything I need to know now. I will check out the site you recommended, though. It's all a journey.


Feedback is always appreciated!