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jenettSo, we are just about at the anniversary of my life doing a complete upheaval due to the medical foo, and that makes it a good time to do an update of what I've learned, in case it helps other people somewhere. (In other words, feel free to link to other people who might find it useful or have questions. I don't have all the answers, but might have ideas.)
(So many things are tied into November for me these days: it is a month that begins with my father's death, includes the anniversaries of my 2nd degree, 3rd degree, separation from the ex-husband, and the anniversary of the first month we lived together (our actually wedding was in early December.) And now this. Awfully complicated month.
Anyway: for those who don't remember, a year ago, on the Monday after Thanksgiving in 2009, after feeling just as horrible with five days off work as I did when finishing work on the previous Tuesday, I walked into work and said "There is something really wrong." The eventual diagnosis turned out to be hypothyroidism and vitamin D deficiency (after a side trip through "Could it be depression?" and a lot of stuff I wish I'd handled differently at work, sort of, if I could figure out what 'better' would have looked like.)
This is going to get long, but breaking it up in to separate chunks seems less useful.
Where I am now
On my good days, I'm about 95% of the way back to my normal, partly through applying a bunch of coping skills that are not bog-standard solutions (and which I talk about below at the end, in case they're helpful to others.)
The trick is that good days don't happen every day: I get between 3 and 4 reasonably productive days a week (not what I'm used to, but what I admit is reasonable, in terms of productive) right now, though it's slowly edging upwards. At least one of the others *has* to be a "I will accept I am not going to get anything done except staring at the computer screen, reading/watching series mysteries and/or petting the cat." and the other two or three are usually "I get some stuff done, but not what I'd really like, even by the new more reasonable standards."
Driving's still especially tiring, though driving at night is enough better I'm no longer unwilling to do it (which I was for a lot of the past year. Light sensitivity + night driving + it being especially tiring are not a good combo.)
Dealing with people, weirdly, is fine at the time, though it takes a lot out of me later.
I have been unemployed since the end of June, and while there are ways that sucks (particularly the way it happened), there are also ways in which having time to recover has been a really good thing. (But if you know of jobs for librarians/info geeks/people with a wide range of writing and tech skills anywhere in the northern half of the US, do let me know.)
But on the plus side, the house is at 68ish, not 72, I'm comfortable in a t-shirt and long pants with no socks, not freezing any time I go outside or losing an hour a day to shivering so hard I can't do much else. I have gotten rid of the persistent nausea, and I can stay awake and productive for something like a normal day length. (I still have some residual annoyances: my menstrual cycle is still Highly Confused, though I think it's improving finally with some herb-based support, and so on. And my basal temperature is still lower than it should be.)
Writing is okay, and I'm getting to the point that on the good days, I can reliably slip in and out of focused work reasonably quickly. (On bad days, it takes me an hour or more and I'm lucky if it works. Today was one of those, up until this evening.)
There's also stuff that's just *different*: my overall energy level, what I can sustain (and how long): everything runs slower now. My preferred modes of learning have shifted: I used to be a stronger body/kinesthetic learner than I currently test out as on learning modes tests, and it's largely because the body stuff takes so much extra attention and planning. (I was referring, last year, to taking the elevator up a flight of stairs getting me 15 more minutes of brain that day. That's still more or less true, though the asthma having been much better this fall helps a bit.) My logic and math skills have shifted a bit too.
In terms of my religious life, things have also shifted, though that's something that needs its own discussion.
And I am now as nuanced about types of exhaustion as I am about types of headache (as only someone with 20 years history of migraines and tension headaches and eye headaches) can be.
One interesting note: my eyes appear to have gotten better as we've gotten this under control: they used to vary a bit seasonally (I'd get more eye strain headaches in the late spring, when I think my Vitamin D was previously running low). These days, I often don't put my glasses on at all during the day. (And yes, I am going to go get my eyes checked again in the coming month).
The background
I'd started stressful new job (at place I'd been working for 8.5 years at that point) after 4 months of being the interim and getting formally hired in April. I was working 50-60 hour weeks pretty reliably, 35+ hours of which were directly public(student and faculty) facing, the rest being a combination of meetings, and paperwork for the Gods-be-damned No Child Left Behind funding. And I *started* work at 7am which makes it tricky to get sufficient sleep if you do anything with other people after work.
I'd started seeing early symptoms of what I now think was the thyroid stuff kicking in over the summer (I was totally and unreasonably exhausted at times I wouldn't expect to be), and started to see more over the next couple of months, both in terms of exhaustion and in terms of things like my executive function skills falling to the wayside. (Which is a problem when you're in a job with constant interrupt state, but a bunch of detailed work that has to get done sometime - everything from web page writing to instruction planning to curriculum design and mapping to said NCLB paperwork.)
But I chalked it up to "Stressful job, long hours". Then I got the flu in early November, and figured I felt lousy because, hey, flu. But three weeks later, I felt just as lousy, and as I said, when Thanksgiving didn't make *anything* any better (and I didn't even feel better mid-break, so it wasn't just 'stress about going back to work'), I knew something was up.
Symptom list
I started out with:
- extreme exhaustion, to the point I had to cancel pretty much all external plans other than work, and spent any time not working either sleeping or reading. Constant all the time feeling like if I didn't keep forcing myself to keep going, I could just lie down and take a nap on the nice floor or even the nice parking lot, don't mind me. All the time. And yet, sleep didn't help much. It didn't make me feel worse, but even sleeping 12 hours a night didn't give me much boost.
- even very mild exertion left me lightheaded and needing to sit down for 1-2 hours before trying again. (Simple housecleaning, for example.)
- significant issues with focus (especially if interrupted by something, common at the previous job), choosing between multiple options, and reading of several kinds (all things that are normally very easy for me.)
At its worst, over winter break last year, I couldn't read even light fiction for more than 5-10 minutes at a time (and as someone who generally reads a book every two days in print, and a like amount of text - if not more - online every day, that would have been terrifying if I'd had the energy to be terrified. Fortunately, it got better fast.)
- notably low basal temperature (averaging 96.3 before rising)
- cold intolerant: was previously comfortable in cool weather, did not wear socks most of time: currently often cold, even in fairly warm (72 degree) rooms. Get severe chills that take an hour or two to pass at least once daily.
- but also have moments of overheating - sudden sweating, both during the day and at night. Couldn't wear heavy layers for long without overheating.
- light and sound sensitivity (especially driving at night)
- recent hair growth dry and brittle - increased loss, a lot more breakage than normal.
- skin dry and itchy (especially on scalp) despite moisturiser/humidifier
- some trouble swallowing (lump in throat)
- significant loss of appetite (began over the summer). I lost about 30 pounds between September and December, and then regained it fast, without particularly changing my food habits. This is Not Normal.
- difficulty falling asleep (takes me 2 hours or so): I now begin at around 7:30 to be asleep by 9:30pm (and wake up for work between 5:15 and 5:30.)
- aches when resting weight on part of body over time - leads to rolling over at night, etc.
- lots of minor but noticeable cognitive glitching - typos I don't normally make, leaving words out, not being able to find words or make connections, and along with the executive function, not being able to prioritise what to work on: I'd make lists and then sit and stare at them and have no idea how to start.
Diagnosis process
December 1st: I saw my primary care NP. She ran bloodwork (including a thyroid test) and we talked about whether this might be depression. I agree to try an anti-depressant to see if it helps. (Celexa, for the curious.)
My blood work comes back at levels that my NP says are normal - we'll come back to that, but the specific one we care about is that my TSH (thyroid stimulating hormone) was at 3.0.
December 9th: I try to - very carefully - clear the driveway of snow so I can go to work, and end up so lightheaded after 5-10 minutes of very careful effort that I have to go sit down for about three hours before I can even think about moving around the house.
December 10th: I see my doctor again, because hi, that is not good. She ups my Celexa dosage.
December 29th: Nothing has improved: I return to see my doctor for a follow-up with![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
elisem in tow to be fierce for me. I get a referral to a nice endocrinologist. (But of course, will take time to get an appointment with him.) I struggle on. (Spending two weeks of the school's break basically sleeping helped.)
January 20th: I see the nice endocrinologist, who does more blood work, listens to me (eee!), and talks about options. He thinks it's more likely vitamin D deficiency, but he's willing to try treating the hypothyroid stuff. The blood tests come back, and I start on a moderate synthetic thyroid dose, and twice a week vitamin D prescription pills.
(I did eventually go off the Celexa slowly in March and April, because by that point I was pretty sure that depression was not the problem, and also thought it might be affecting quality of sleep enough to be noticeable. In which case, why keep taking it.)
I had follow up visits in April (clearly on the right track, but not quite there yet: upped the synthroid dose, tried the Vitamin D at once a week instead.) and in July (thyroid dose happy, put the vitamin D back up again, because I was still at the bare minimum mark, and might feel better higher.) Need to schedule the next one (with my GP, this time, since I expect the blood work to come back stable.)
Why was I so sure it wasn't depression (or at least not *just* depression?)
I was getting fairly high scores on the depression screening tests, but after about the third one, I started going "Wait: I don't want to do the stuff I normally do, not because I don't *want* to, but because I'm too damned exhausted to even want to think about it."
While exhaustion can run alongside the more typical apathy of depression, when you start answering "I'm too damned tired" to every question, it might perhaps be a sign that there's something else going on too.
Also:
- I was showing markers for autoimmune issues (early graying hair is one of them) and autoimmune stuff runs in my family in various ways.
- I was showing a very specific marker for hypothyroid (losing hair on the outer third of my eyebrows). Not everyone gets this, but if you do, there isn't much else that causes it.
- Skin/hair/nail changes, including hair loss
- The temperature intolerance: I'm normally comfortable without socks/lots of warm clothing at indoor room temperature, and all of a sudden, I completely wasn't (plus was having serious shivering for 30 minutes at a time even when piled under blankets and warm clothing.) This is a really classic symptom.
- I had past times of elevated TSH levels when I knew I wasn't feeling good at other points in my life.
- I also had - and still have - low basal temperatures, which some people consider a marker for hypothyroid. (In my case, my temperature when I wake up is somewhere between 96.6 and 97.3, where normal people, it's somewhere over 97.7. These days, once I'm up for an hour or three, it climbs fast. My focus is better when it's near normal, and I don't have the nausea issues.)
Hypothyroidism
There's a lot of decent information out there about it - but there's also a bunch of stuff I'm not sure I buy. http://thyroid.about.com is a good place to start: she's got some really good info (including a lot of stuff doctors don't share readily), but there's also some more out-there pieces.
Now, one of the things doctors don't tell you: the scales for hypothyroid have shifted: in 2002, the American Association of Clinical Endocrinologists announced that they were shifting the acceptable range to between .3 and 3.0 (where previously it had been .5 to 5.0)
This puts my previous high tests - and the ones last year - right on the borderline or a bit over. Current best practice is that if someone shows up with a borderline test *and* symptoms, you try treating. (If it doesn't help, you can take the person off the thyroid meds.) But you need to have a doctor who knows that, and a lot of GPs don't.
Now, there's also the other part: it's considered these days that 90+% of the cause of hypothyroidism in the US (and other developed countries) is due to an autoimmune response, where the body starts attacking the thyroid. You'll go through periods where the thyroid doesn't produce enough hormone (hypo) and periods where it produces too much.
My history includes:
fall 1990 (2 months before my father died): TSH of 3.0
spring 1998: felt about as lousy, but much more briefly: TSH of 3.5
and one weird outlier: in spring 2003, my TSH was *absurdly* low, into hyper territory (below .1)
Plus a number of other tests where I was feeling reasonable, and my TSH was between 1.2 and 1.6.
Plus that blip last October or so, when I dropped weight so fast (and had an increase in the nausea, which is a hyperthyroid symptom.)
General Notes
My best guess is that I started going hypo over the summer, had a quick burst into hyper in late September or early October (which lead to the substantial nausea and very rapid weight loss) and then kicked back into hypo. And apparently, I'm someone who really *is* that sensitive to levels: some people don't feel as badly as I did until their TSH is double digits, or even over 50+.
Fortunately, the treatment is the same as if it's not the autoimmune response: synthetic thyroid hormone, so your body stops trying to produce it, and you have a constant level in your system. Once you get the dose right.
The trick with the dose is that - in part because it is a hormone - it takes 6-8 weeks to really kick in. So, even though I started meds in late January, I didn't start feeling reliably better until middle of March, and even then, a lot of stuff was still off until we got me on what seems to be about the right dose that kicked in at the end of May. Which was enough to destroy my chances of keeping that job.
Hypothyroidism is also linked with higher than expected cholesterol levels (especially ones that don't budge with diet or exercise changes), and some other things including heart disease.
Treatment
Anyway: I happen to be one of those people for whom bog-standard synthetic thyroid seems to help: once I have it in my body, I seem to convert it fine (not everyone does). Some people need either naturally produced hormone, or additional medication to help with the conversion from TSH to T3.
I'm currently on 88mcg daily. It does need to be taken first thing in the morning, and you need to either take it on a totally empty stomach (and not eat anything for at least 30 minutes, and an hour might be better), or *always* eat (roughly the same kind of food) with it, because what you eat with it can change dosage absorption. Since it's already a really minute dose (people feel major changes between 75mcg, 88mcg, and 100mcg, for example - which is why there's a commonly prescribed 88, actually), that can make a difference. Some people react to the dyes or stabilisers in various doses, too.
I am lucky: these are cheap meds (I pay something like $12 for a 3 month supply), and am now down to every four-six months blood work with my NP (which I need to schedule, actually.) I take the Walgreens generics - some people need to be sure to stay on the same med refill to refill, in which case the non-generic may be needed (but even then, it's about $30 a month, which could be worse.)
I do have residual symptoms, but I think at this point they're more about having blown out every reserve in my body + a year and more of major stress, rather than directly the thyroid. (If you go too high on the dose, you end up hyperthyroid and that has some potentially serious risks to the heart long-term, so they want to make sure you stay out of that range.)
Vitamin D
The other thing we diagnosed me with was Vitamin D deficiency. This is in many ways a much newer set of things people have been looking at. Baseline range is 30-80 in whatever the measurement is, and there's evidence to suggest 50-80 is a lot better. I was down at 12.
At its worst, chronic deficiency leads to rickets, and softening of the bones (since Vitamin D is closely associated with processing of calcium and phosphorous in the body.)
Symptoms include:
- overwhelming exhaustion
- all-over aches and pains that don't seem to localise anywhere.
- muscle weakness
- for me, the Vitamin D seems to be about stamina and ability to sustain energy: the thyroid is more about whether I have it in the first place. If that helps.
It's also been linked to cognitive function problems, asthma in children, some kinds of cancer, and a number of other things.
What people do know:
- Vitamin D causes a bunch of the symptoms I had: deep overwhelming exhaustion, especially lack of stamina exhaustion.
- There's current theory that many people - at least anywhere north of about Maryland, in the US - are potentially vitamin D deficient at least in the winter, and that the RDA doses are very very low. During the summer, we might get enough, but not necessarily enough to get us through the winter.
- There is a link between vitamin D deficiency and being overweight, but no one's sure yet which one is the causal one. (The stuff I've seen suggests that it's the deficiency that triggers the weight gain, though.)
- Most people make vitamin D from sunlight (a few people don't.) Some people store it better than others. (In my case, based on my response to medication, I make it fine, but I either burn through it very fast, or I just plain don't store it well.)
In hindsight, I'd been seeing symptoms in late winter on and off for a while - I'd be okay for a workday, but come home from work in March, April, and much of May exhausted (which suggests I used to be better at storing the vitamin D over the early winter.) And then it'd get better again. There are also a lot of links between deficency and seasonal depression.
What I do:
I now take 2 prescription megadoses of vitamin D a week (the normal dose for OTC supplements is 1000 IU. I take 50,000IU twice a week. No, I didn't misplace a zero.) These are fortunately also pretty cheap: about a dollar a pill. Many people take them for a while, then drop to one a week, or one every other week.
You do need periodic bloodwork to make sure you're not overdosing, because that has problems (like softening your bones in bad ways). Because of the seasonal effects of sun, you may need to adjust some summer to winter.
That seemed not to work for me this summer, and I just spent two weeks doing one a week (because I'd misfilled the once-a-week one instead of the twice a week one last time) and really saw a major drop in focus and attention and energy. The last two days, I'd woken up achy and sore and cranky and unable to focus in a way I'd sort of gleefully forgotten for the last month or two. (I did just pick up the refill, and took my regular dose.) If I had to guess (and I'llget more data from the next round of blood work), twice a week is a hair on the high side for my body to store fast when I'm also getting sun, but when it's winter, it's about right.
I take mine on Tuesday and Saturday. When I first started taking it, twice weekly doses made me really lethargic in a totally different way than the non-treated exhaustion for the 12-18 hours after I took it. This is apparently not that uncommmon: when I mentioned it to other people
What I wish I'd done differently:
- pushed for an endocrinologist referral even earlier.
- negotiated some sort of FMLA leave (flat out being gone would probably still have lost me the job, given that it would have needed to be until about May, when I started reliably functioning again. And when your school year ends in early June, that's complicated. But half-time with a serious renegotiation of what my priorities were might have worked. Except of course, that when I pushed through trying to explain why a bunch of those duties really weren't working, I got a lot of "There is no one else to do this" and other [insert rant here].
(I was upfront about treatment the entire way, but my ex-boss doesn't seem to have been able to do anything useful with it. Which is me being polite. And it was harder because some stuff stayed pretty okay for me - not my top game, but a solid B/B+, like giving reference help, which I sorta consider a major part of my job as librarian, while other stuff was very very hard to impossible, no matter how I tried.
In hindsight, would have liked to have handled it differently, but you try thinking through cotton wool while living by yourself (hence, no help with any kind of household stuff, and limited resources for troubleshooting what was going on.) Anyway, I refer you to my friend Mrissa's excellent post on the Hollywood broken leg theory, and why it does not work. )
- been much more clear about how much I was struggling with people at work who I knew liked me and cared about me, and found help in maybe negotiating stuff better. (This is the one I regret most really. Except that when I tried reaching out, people saw the "Doing okay in conversation" and not the rest of it, and I didn't know then how to articulate what was different for me, or why I could have a detailed conversation about finding sources one minute, and be beating my head against trying to do something very simple the next.)
Anyway, water under the bridge, and I know what to do better with in future jobs (along with the fact that managing known factor is easier than diagnosing unknown factor, because at least you know it's there.)
Remembering to take meds
I take my thyroid meds first thing in the morning, when I roll out of bed. I have a 7 day pill box (morning and evening) that I fill every Sunday evening. If I don't, I sit there and worry about if I've taken my pill - this way, I can tell, even if I'm sleepy or out of it.
In the PM section, I put the vitamin D (on the Tuesday/Saturday I take them: I may slip a day either direction if there's a reason I think I might forget, like being out late that night.) Plus whatever other vitamins. (as below)
Stuff that helps besides medication:
I'm also taking a general B vitamin (on the theory it won't hurt), magnesium and selenium (both linked to thyroid support).
I also take vitex/chastetree extract, to help with the female hormone rebalancing (I would not necessarily suggest this unless you know it works for you or consult with a skilled herbalist: I happen to know it works for me.)
Food choices
My appetite has changed hugely: when I've done periodic tracking, I'm having a hard time actually getting up to a calorie level that works for me (I can't eat much at one time regularly, and I'm often not hungry, and for much of the past year, I had periodic nausea that wasn't horrible, but made one not want to eat.) (I note I have no idea what my weight's doing, though at a guess, I'm down around 240 right now, after spending most of the last five years around 250 except for that weird blip last fall.)
In general, I aim for high-nutrition foods: from experimentation, it seems like I burned through a lot of trace nutrients and I'm rebuilding, so I eat foods that have lots of them. Eggs. Whole milk. Homemade chicken stock with lots of extra goodness by way of onion and garlic and herbs in the mix. Butter, not margarine, and so on.
And of course, lots of veggies. (Somewhat less fruit, because most of it doesn't taste right to me right now, other than berries.)
I find a high protein diet very helpful: even at the worst of the exhaustion that was pretty clear. I try to do a high-protein food each meal, and my snacks tend to be cheese, or a handful of nuts, or a hard boiled egg or something of the kind. (Popcorn with butter in the evenings.) Heavy on chicken and fish and grass-fed ground beef. (having figured out a crockpot meatloaf recipe I can do without thinking about it: meatloaf stores well.)
There's some evidence that a number of people with hypothyroid also have some degree of gluten intolerance. I have tried a week of no gluten foods, and found it didn't make an appreciable difference and seemed to make some things worse (and I also don't have the gastro-intestinal symptoms that might suggest it.) But it's worth considering, and I may revisit it again down the road.
I do find that I'm happier if I eat fewer grains, though: my best balance seems to be to eat grains once a day, but not more than that. (So if I have tuna on english muffins for lunch, dinner is something that doesn't involve grains.) That said, I'm not fanatical about this one.
There are foods that hurt thyroid absorption: non-fermented soy (which means most fake meat products are right out, but miso or tofu in moderate amounts are okay for many people). I don't fret about soy oil in mayonnaise, for example, but I try to avoid it in larger amounts when I have options. Uncooked brassicas are also a problem (cabbage, kale, broccoli, cauliflower, brussels sprouts, etc.) Cooking destroys most of the the chemical that's a problem, so I don't eat them all the time, but do eat them regularly when cooked.
I have huge unrelenting passions for cream of mushroom soup, and am working on a recipe with even better nutritional value. (I'd be trying round 3, except that I forgot to get mushrooms today, but I'm going to try a round involving mushrooms, caramelised onions, and walnuts.)
I limit sugary stuff in general: I do eat a fair bit of chocolate, but mostly of the dark variety, or attached to dried berries or nuts.
Rosemary is linked to thyroid rebalancing, and general mental function, so I'm tending to throw it into my cooking when I have a chance.
Drink
Lots of water, usually with a halved lime in it.
A cup or two of either nettle or oatstraw infusion most days (whichever one smells right: it's mostly been oatstraw recently): both have a very high protein profile, and all sorts of other handy trace minerals and nutrients. They help a lot with energy.
I am lousy about eating breakfast, but am trying to get in the habit of having something warm and liquid - miso soup, or coconut milk tonic (which has a bunch of useful nutrients, plus I add warming spices: cinnamon, nutmeg, cardamon, which help get my core temperature up faster so my brain start working.)
I avoid caffeine most of the time now: I drink it only if I'm out for a meal (sometimes, sometimes it's lemonade or water), or as a treat. Caffeine can give you a boost of energy, but I found I really didn't want to rely on it, because it wasn't letting me track what my body actually needs.
Exercise
Has been iffy, see: menstrual cycle annoyances. I'm hoping to get back into swimming in the near future, if that's resolving the way I think it may be finally. (low grade spotting since *July* is tedious: I really want to avoid artificial hormones, so I'm back on taking chastetree extract, which has worked in the past for me, but it also takes a while to kick in.)
In general, stuff I can start and stop quickly when I get tired is best - swimming, I just have to get to the end of the pool. Walking is trickier, because if I'm outside, I need to get home again. (I may give up and pick up walking on the indoor track at the Y, which I find tedious but at least one can stop when one likes.)
Mostly, I am not currently fretting about it.
Stuff that helps my brain remake connections
One of the major frustrations has been recognising that my brain wasn't working right (or the way it used to) but not knowing how to fix it.
What turns out to help is stuff that helps reconnect my brain, and helps my brain to be a sponge absorbing new things and making new connections. Not only do I feel better, but it's improving a lot of function (and while I'm still sometimes frustrated, it's actually making a pretty rapid difference, all things considered. A year feels like a long time, but at the same time, there are people who go years without meaningful diagnosis or treatment.)
The two things that help me most are the Feldenkrais lessons I do, and playing the harp (and music in general). Both of these deserve some more length than I'm going to manage here, so I'll do a separate post.
Also, I have stuff to say about task management tracking, and that really does need to be its own post.
Other stuff that really helped
Trader Joe's: being able to acquire reasonable food with low additives, that I don't have to think about cooking.
The wool mattress pad - made the worst of the temperature extremes much better, helps me sleep better, helped with the achiness of the vitamin D deficiency, and the cat adores it. And in general, making my bed comfy, cozy, and able for me to get plenty of sleep and the best quality sleep I can. (I also have flannel sheets, and a big U shaped body pillow.)
Hiring a cleaning service during the worst of it. (I had to stop when the job went away: the budget on unemployment stretches to either Feldenkrais sessions or cleaning help, and my brain matters more than the house - also, I'm generally keeping up with it again now where I wasn't for a while there otherwise.)
Endless access to BBC mystery series on Netflix. And series mysteries from the library. And rereads of things I know and love well.
Help from friends who could, when they could. (And my mother, who's been helping financially.)
(So many things are tied into November for me these days: it is a month that begins with my father's death, includes the anniversaries of my 2nd degree, 3rd degree, separation from the ex-husband, and the anniversary of the first month we lived together (our actually wedding was in early December.) And now this. Awfully complicated month.
Anyway: for those who don't remember, a year ago, on the Monday after Thanksgiving in 2009, after feeling just as horrible with five days off work as I did when finishing work on the previous Tuesday, I walked into work and said "There is something really wrong." The eventual diagnosis turned out to be hypothyroidism and vitamin D deficiency (after a side trip through "Could it be depression?" and a lot of stuff I wish I'd handled differently at work, sort of, if I could figure out what 'better' would have looked like.)
This is going to get long, but breaking it up in to separate chunks seems less useful.
Where I am now
On my good days, I'm about 95% of the way back to my normal, partly through applying a bunch of coping skills that are not bog-standard solutions (and which I talk about below at the end, in case they're helpful to others.)
The trick is that good days don't happen every day: I get between 3 and 4 reasonably productive days a week (not what I'm used to, but what I admit is reasonable, in terms of productive) right now, though it's slowly edging upwards. At least one of the others *has* to be a "I will accept I am not going to get anything done except staring at the computer screen, reading/watching series mysteries and/or petting the cat." and the other two or three are usually "I get some stuff done, but not what I'd really like, even by the new more reasonable standards."
Driving's still especially tiring, though driving at night is enough better I'm no longer unwilling to do it (which I was for a lot of the past year. Light sensitivity + night driving + it being especially tiring are not a good combo.)
Dealing with people, weirdly, is fine at the time, though it takes a lot out of me later.
I have been unemployed since the end of June, and while there are ways that sucks (particularly the way it happened), there are also ways in which having time to recover has been a really good thing. (But if you know of jobs for librarians/info geeks/people with a wide range of writing and tech skills anywhere in the northern half of the US, do let me know.)
But on the plus side, the house is at 68ish, not 72, I'm comfortable in a t-shirt and long pants with no socks, not freezing any time I go outside or losing an hour a day to shivering so hard I can't do much else. I have gotten rid of the persistent nausea, and I can stay awake and productive for something like a normal day length. (I still have some residual annoyances: my menstrual cycle is still Highly Confused, though I think it's improving finally with some herb-based support, and so on. And my basal temperature is still lower than it should be.)
Writing is okay, and I'm getting to the point that on the good days, I can reliably slip in and out of focused work reasonably quickly. (On bad days, it takes me an hour or more and I'm lucky if it works. Today was one of those, up until this evening.)
There's also stuff that's just *different*: my overall energy level, what I can sustain (and how long): everything runs slower now. My preferred modes of learning have shifted: I used to be a stronger body/kinesthetic learner than I currently test out as on learning modes tests, and it's largely because the body stuff takes so much extra attention and planning. (I was referring, last year, to taking the elevator up a flight of stairs getting me 15 more minutes of brain that day. That's still more or less true, though the asthma having been much better this fall helps a bit.) My logic and math skills have shifted a bit too.
In terms of my religious life, things have also shifted, though that's something that needs its own discussion.
And I am now as nuanced about types of exhaustion as I am about types of headache (as only someone with 20 years history of migraines and tension headaches and eye headaches) can be.
One interesting note: my eyes appear to have gotten better as we've gotten this under control: they used to vary a bit seasonally (I'd get more eye strain headaches in the late spring, when I think my Vitamin D was previously running low). These days, I often don't put my glasses on at all during the day. (And yes, I am going to go get my eyes checked again in the coming month).
The background
I'd started stressful new job (at place I'd been working for 8.5 years at that point) after 4 months of being the interim and getting formally hired in April. I was working 50-60 hour weeks pretty reliably, 35+ hours of which were directly public(student and faculty) facing, the rest being a combination of meetings, and paperwork for the Gods-be-damned No Child Left Behind funding. And I *started* work at 7am which makes it tricky to get sufficient sleep if you do anything with other people after work.
I'd started seeing early symptoms of what I now think was the thyroid stuff kicking in over the summer (I was totally and unreasonably exhausted at times I wouldn't expect to be), and started to see more over the next couple of months, both in terms of exhaustion and in terms of things like my executive function skills falling to the wayside. (Which is a problem when you're in a job with constant interrupt state, but a bunch of detailed work that has to get done sometime - everything from web page writing to instruction planning to curriculum design and mapping to said NCLB paperwork.)
But I chalked it up to "Stressful job, long hours". Then I got the flu in early November, and figured I felt lousy because, hey, flu. But three weeks later, I felt just as lousy, and as I said, when Thanksgiving didn't make *anything* any better (and I didn't even feel better mid-break, so it wasn't just 'stress about going back to work'), I knew something was up.
Symptom list
I started out with:
- extreme exhaustion, to the point I had to cancel pretty much all external plans other than work, and spent any time not working either sleeping or reading. Constant all the time feeling like if I didn't keep forcing myself to keep going, I could just lie down and take a nap on the nice floor or even the nice parking lot, don't mind me. All the time. And yet, sleep didn't help much. It didn't make me feel worse, but even sleeping 12 hours a night didn't give me much boost.
- even very mild exertion left me lightheaded and needing to sit down for 1-2 hours before trying again. (Simple housecleaning, for example.)
- significant issues with focus (especially if interrupted by something, common at the previous job), choosing between multiple options, and reading of several kinds (all things that are normally very easy for me.)
At its worst, over winter break last year, I couldn't read even light fiction for more than 5-10 minutes at a time (and as someone who generally reads a book every two days in print, and a like amount of text - if not more - online every day, that would have been terrifying if I'd had the energy to be terrified. Fortunately, it got better fast.)
- notably low basal temperature (averaging 96.3 before rising)
- cold intolerant: was previously comfortable in cool weather, did not wear socks most of time: currently often cold, even in fairly warm (72 degree) rooms. Get severe chills that take an hour or two to pass at least once daily.
- but also have moments of overheating - sudden sweating, both during the day and at night. Couldn't wear heavy layers for long without overheating.
- light and sound sensitivity (especially driving at night)
- recent hair growth dry and brittle - increased loss, a lot more breakage than normal.
- skin dry and itchy (especially on scalp) despite moisturiser/humidifier
- some trouble swallowing (lump in throat)
- significant loss of appetite (began over the summer). I lost about 30 pounds between September and December, and then regained it fast, without particularly changing my food habits. This is Not Normal.
- difficulty falling asleep (takes me 2 hours or so): I now begin at around 7:30 to be asleep by 9:30pm (and wake up for work between 5:15 and 5:30.)
- aches when resting weight on part of body over time - leads to rolling over at night, etc.
- lots of minor but noticeable cognitive glitching - typos I don't normally make, leaving words out, not being able to find words or make connections, and along with the executive function, not being able to prioritise what to work on: I'd make lists and then sit and stare at them and have no idea how to start.
Diagnosis process
December 1st: I saw my primary care NP. She ran bloodwork (including a thyroid test) and we talked about whether this might be depression. I agree to try an anti-depressant to see if it helps. (Celexa, for the curious.)
My blood work comes back at levels that my NP says are normal - we'll come back to that, but the specific one we care about is that my TSH (thyroid stimulating hormone) was at 3.0.
December 9th: I try to - very carefully - clear the driveway of snow so I can go to work, and end up so lightheaded after 5-10 minutes of very careful effort that I have to go sit down for about three hours before I can even think about moving around the house.
December 10th: I see my doctor again, because hi, that is not good. She ups my Celexa dosage.
December 29th: Nothing has improved: I return to see my doctor for a follow-up with
elisem in tow to be fierce for me. I get a referral to a nice endocrinologist. (But of course, will take time to get an appointment with him.) I struggle on. (Spending two weeks of the school's break basically sleeping helped.) January 20th: I see the nice endocrinologist, who does more blood work, listens to me (eee!), and talks about options. He thinks it's more likely vitamin D deficiency, but he's willing to try treating the hypothyroid stuff. The blood tests come back, and I start on a moderate synthetic thyroid dose, and twice a week vitamin D prescription pills.
(I did eventually go off the Celexa slowly in March and April, because by that point I was pretty sure that depression was not the problem, and also thought it might be affecting quality of sleep enough to be noticeable. In which case, why keep taking it.)
I had follow up visits in April (clearly on the right track, but not quite there yet: upped the synthroid dose, tried the Vitamin D at once a week instead.) and in July (thyroid dose happy, put the vitamin D back up again, because I was still at the bare minimum mark, and might feel better higher.) Need to schedule the next one (with my GP, this time, since I expect the blood work to come back stable.)
Why was I so sure it wasn't depression (or at least not *just* depression?)
I was getting fairly high scores on the depression screening tests, but after about the third one, I started going "Wait: I don't want to do the stuff I normally do, not because I don't *want* to, but because I'm too damned exhausted to even want to think about it."
While exhaustion can run alongside the more typical apathy of depression, when you start answering "I'm too damned tired" to every question, it might perhaps be a sign that there's something else going on too.
Also:
- I was showing markers for autoimmune issues (early graying hair is one of them) and autoimmune stuff runs in my family in various ways.
- I was showing a very specific marker for hypothyroid (losing hair on the outer third of my eyebrows). Not everyone gets this, but if you do, there isn't much else that causes it.
- Skin/hair/nail changes, including hair loss
- The temperature intolerance: I'm normally comfortable without socks/lots of warm clothing at indoor room temperature, and all of a sudden, I completely wasn't (plus was having serious shivering for 30 minutes at a time even when piled under blankets and warm clothing.) This is a really classic symptom.
- I had past times of elevated TSH levels when I knew I wasn't feeling good at other points in my life.
- I also had - and still have - low basal temperatures, which some people consider a marker for hypothyroid. (In my case, my temperature when I wake up is somewhere between 96.6 and 97.3, where normal people, it's somewhere over 97.7. These days, once I'm up for an hour or three, it climbs fast. My focus is better when it's near normal, and I don't have the nausea issues.)
Hypothyroidism
There's a lot of decent information out there about it - but there's also a bunch of stuff I'm not sure I buy. http://thyroid.about.com is a good place to start: she's got some really good info (including a lot of stuff doctors don't share readily), but there's also some more out-there pieces.
Now, one of the things doctors don't tell you: the scales for hypothyroid have shifted: in 2002, the American Association of Clinical Endocrinologists announced that they were shifting the acceptable range to between .3 and 3.0 (where previously it had been .5 to 5.0)
This puts my previous high tests - and the ones last year - right on the borderline or a bit over. Current best practice is that if someone shows up with a borderline test *and* symptoms, you try treating. (If it doesn't help, you can take the person off the thyroid meds.) But you need to have a doctor who knows that, and a lot of GPs don't.
Now, there's also the other part: it's considered these days that 90+% of the cause of hypothyroidism in the US (and other developed countries) is due to an autoimmune response, where the body starts attacking the thyroid. You'll go through periods where the thyroid doesn't produce enough hormone (hypo) and periods where it produces too much.
My history includes:
fall 1990 (2 months before my father died): TSH of 3.0
spring 1998: felt about as lousy, but much more briefly: TSH of 3.5
and one weird outlier: in spring 2003, my TSH was *absurdly* low, into hyper territory (below .1)
Plus a number of other tests where I was feeling reasonable, and my TSH was between 1.2 and 1.6.
Plus that blip last October or so, when I dropped weight so fast (and had an increase in the nausea, which is a hyperthyroid symptom.)
General Notes
My best guess is that I started going hypo over the summer, had a quick burst into hyper in late September or early October (which lead to the substantial nausea and very rapid weight loss) and then kicked back into hypo. And apparently, I'm someone who really *is* that sensitive to levels: some people don't feel as badly as I did until their TSH is double digits, or even over 50+.
Fortunately, the treatment is the same as if it's not the autoimmune response: synthetic thyroid hormone, so your body stops trying to produce it, and you have a constant level in your system. Once you get the dose right.
The trick with the dose is that - in part because it is a hormone - it takes 6-8 weeks to really kick in. So, even though I started meds in late January, I didn't start feeling reliably better until middle of March, and even then, a lot of stuff was still off until we got me on what seems to be about the right dose that kicked in at the end of May. Which was enough to destroy my chances of keeping that job.
Hypothyroidism is also linked with higher than expected cholesterol levels (especially ones that don't budge with diet or exercise changes), and some other things including heart disease.
Treatment
Anyway: I happen to be one of those people for whom bog-standard synthetic thyroid seems to help: once I have it in my body, I seem to convert it fine (not everyone does). Some people need either naturally produced hormone, or additional medication to help with the conversion from TSH to T3.
I'm currently on 88mcg daily. It does need to be taken first thing in the morning, and you need to either take it on a totally empty stomach (and not eat anything for at least 30 minutes, and an hour might be better), or *always* eat (roughly the same kind of food) with it, because what you eat with it can change dosage absorption. Since it's already a really minute dose (people feel major changes between 75mcg, 88mcg, and 100mcg, for example - which is why there's a commonly prescribed 88, actually), that can make a difference. Some people react to the dyes or stabilisers in various doses, too.
I am lucky: these are cheap meds (I pay something like $12 for a 3 month supply), and am now down to every four-six months blood work with my NP (which I need to schedule, actually.) I take the Walgreens generics - some people need to be sure to stay on the same med refill to refill, in which case the non-generic may be needed (but even then, it's about $30 a month, which could be worse.)
I do have residual symptoms, but I think at this point they're more about having blown out every reserve in my body + a year and more of major stress, rather than directly the thyroid. (If you go too high on the dose, you end up hyperthyroid and that has some potentially serious risks to the heart long-term, so they want to make sure you stay out of that range.)
Vitamin D
The other thing we diagnosed me with was Vitamin D deficiency. This is in many ways a much newer set of things people have been looking at. Baseline range is 30-80 in whatever the measurement is, and there's evidence to suggest 50-80 is a lot better. I was down at 12.
At its worst, chronic deficiency leads to rickets, and softening of the bones (since Vitamin D is closely associated with processing of calcium and phosphorous in the body.)
Symptoms include:
- overwhelming exhaustion
- all-over aches and pains that don't seem to localise anywhere.
- muscle weakness
- for me, the Vitamin D seems to be about stamina and ability to sustain energy: the thyroid is more about whether I have it in the first place. If that helps.
It's also been linked to cognitive function problems, asthma in children, some kinds of cancer, and a number of other things.
What people do know:
- Vitamin D causes a bunch of the symptoms I had: deep overwhelming exhaustion, especially lack of stamina exhaustion.
- There's current theory that many people - at least anywhere north of about Maryland, in the US - are potentially vitamin D deficient at least in the winter, and that the RDA doses are very very low. During the summer, we might get enough, but not necessarily enough to get us through the winter.
- There is a link between vitamin D deficiency and being overweight, but no one's sure yet which one is the causal one. (The stuff I've seen suggests that it's the deficiency that triggers the weight gain, though.)
- Most people make vitamin D from sunlight (a few people don't.) Some people store it better than others. (In my case, based on my response to medication, I make it fine, but I either burn through it very fast, or I just plain don't store it well.)
In hindsight, I'd been seeing symptoms in late winter on and off for a while - I'd be okay for a workday, but come home from work in March, April, and much of May exhausted (which suggests I used to be better at storing the vitamin D over the early winter.) And then it'd get better again. There are also a lot of links between deficency and seasonal depression.
What I do:
I now take 2 prescription megadoses of vitamin D a week (the normal dose for OTC supplements is 1000 IU. I take 50,000IU twice a week. No, I didn't misplace a zero.) These are fortunately also pretty cheap: about a dollar a pill. Many people take them for a while, then drop to one a week, or one every other week.
You do need periodic bloodwork to make sure you're not overdosing, because that has problems (like softening your bones in bad ways). Because of the seasonal effects of sun, you may need to adjust some summer to winter.
That seemed not to work for me this summer, and I just spent two weeks doing one a week (because I'd misfilled the once-a-week one instead of the twice a week one last time) and really saw a major drop in focus and attention and energy. The last two days, I'd woken up achy and sore and cranky and unable to focus in a way I'd sort of gleefully forgotten for the last month or two. (I did just pick up the refill, and took my regular dose.) If I had to guess (and I'llget more data from the next round of blood work), twice a week is a hair on the high side for my body to store fast when I'm also getting sun, but when it's winter, it's about right.
I take mine on Tuesday and Saturday. When I first started taking it, twice weekly doses made me really lethargic in a totally different way than the non-treated exhaustion for the 12-18 hours after I took it. This is apparently not that uncommmon: when I mentioned it to other people
What I wish I'd done differently:
- pushed for an endocrinologist referral even earlier.
- negotiated some sort of FMLA leave (flat out being gone would probably still have lost me the job, given that it would have needed to be until about May, when I started reliably functioning again. And when your school year ends in early June, that's complicated. But half-time with a serious renegotiation of what my priorities were might have worked. Except of course, that when I pushed through trying to explain why a bunch of those duties really weren't working, I got a lot of "There is no one else to do this" and other [insert rant here].
(I was upfront about treatment the entire way, but my ex-boss doesn't seem to have been able to do anything useful with it. Which is me being polite. And it was harder because some stuff stayed pretty okay for me - not my top game, but a solid B/B+, like giving reference help, which I sorta consider a major part of my job as librarian, while other stuff was very very hard to impossible, no matter how I tried.
In hindsight, would have liked to have handled it differently, but you try thinking through cotton wool while living by yourself (hence, no help with any kind of household stuff, and limited resources for troubleshooting what was going on.) Anyway, I refer you to my friend Mrissa's excellent post on the Hollywood broken leg theory, and why it does not work. )
- been much more clear about how much I was struggling with people at work who I knew liked me and cared about me, and found help in maybe negotiating stuff better. (This is the one I regret most really. Except that when I tried reaching out, people saw the "Doing okay in conversation" and not the rest of it, and I didn't know then how to articulate what was different for me, or why I could have a detailed conversation about finding sources one minute, and be beating my head against trying to do something very simple the next.)
Anyway, water under the bridge, and I know what to do better with in future jobs (along with the fact that managing known factor is easier than diagnosing unknown factor, because at least you know it's there.)
Remembering to take meds
I take my thyroid meds first thing in the morning, when I roll out of bed. I have a 7 day pill box (morning and evening) that I fill every Sunday evening. If I don't, I sit there and worry about if I've taken my pill - this way, I can tell, even if I'm sleepy or out of it.
In the PM section, I put the vitamin D (on the Tuesday/Saturday I take them: I may slip a day either direction if there's a reason I think I might forget, like being out late that night.) Plus whatever other vitamins. (as below)
Stuff that helps besides medication:
I'm also taking a general B vitamin (on the theory it won't hurt), magnesium and selenium (both linked to thyroid support).
I also take vitex/chastetree extract, to help with the female hormone rebalancing (I would not necessarily suggest this unless you know it works for you or consult with a skilled herbalist: I happen to know it works for me.)
Food choices
My appetite has changed hugely: when I've done periodic tracking, I'm having a hard time actually getting up to a calorie level that works for me (I can't eat much at one time regularly, and I'm often not hungry, and for much of the past year, I had periodic nausea that wasn't horrible, but made one not want to eat.) (I note I have no idea what my weight's doing, though at a guess, I'm down around 240 right now, after spending most of the last five years around 250 except for that weird blip last fall.)
In general, I aim for high-nutrition foods: from experimentation, it seems like I burned through a lot of trace nutrients and I'm rebuilding, so I eat foods that have lots of them. Eggs. Whole milk. Homemade chicken stock with lots of extra goodness by way of onion and garlic and herbs in the mix. Butter, not margarine, and so on.
And of course, lots of veggies. (Somewhat less fruit, because most of it doesn't taste right to me right now, other than berries.)
I find a high protein diet very helpful: even at the worst of the exhaustion that was pretty clear. I try to do a high-protein food each meal, and my snacks tend to be cheese, or a handful of nuts, or a hard boiled egg or something of the kind. (Popcorn with butter in the evenings.) Heavy on chicken and fish and grass-fed ground beef. (having figured out a crockpot meatloaf recipe I can do without thinking about it: meatloaf stores well.)
There's some evidence that a number of people with hypothyroid also have some degree of gluten intolerance. I have tried a week of no gluten foods, and found it didn't make an appreciable difference and seemed to make some things worse (and I also don't have the gastro-intestinal symptoms that might suggest it.) But it's worth considering, and I may revisit it again down the road.
I do find that I'm happier if I eat fewer grains, though: my best balance seems to be to eat grains once a day, but not more than that. (So if I have tuna on english muffins for lunch, dinner is something that doesn't involve grains.) That said, I'm not fanatical about this one.
There are foods that hurt thyroid absorption: non-fermented soy (which means most fake meat products are right out, but miso or tofu in moderate amounts are okay for many people). I don't fret about soy oil in mayonnaise, for example, but I try to avoid it in larger amounts when I have options. Uncooked brassicas are also a problem (cabbage, kale, broccoli, cauliflower, brussels sprouts, etc.) Cooking destroys most of the the chemical that's a problem, so I don't eat them all the time, but do eat them regularly when cooked.
I have huge unrelenting passions for cream of mushroom soup, and am working on a recipe with even better nutritional value. (I'd be trying round 3, except that I forgot to get mushrooms today, but I'm going to try a round involving mushrooms, caramelised onions, and walnuts.)
I limit sugary stuff in general: I do eat a fair bit of chocolate, but mostly of the dark variety, or attached to dried berries or nuts.
Rosemary is linked to thyroid rebalancing, and general mental function, so I'm tending to throw it into my cooking when I have a chance.
Drink
Lots of water, usually with a halved lime in it.
A cup or two of either nettle or oatstraw infusion most days (whichever one smells right: it's mostly been oatstraw recently): both have a very high protein profile, and all sorts of other handy trace minerals and nutrients. They help a lot with energy.
I am lousy about eating breakfast, but am trying to get in the habit of having something warm and liquid - miso soup, or coconut milk tonic (which has a bunch of useful nutrients, plus I add warming spices: cinnamon, nutmeg, cardamon, which help get my core temperature up faster so my brain start working.)
I avoid caffeine most of the time now: I drink it only if I'm out for a meal (sometimes, sometimes it's lemonade or water), or as a treat. Caffeine can give you a boost of energy, but I found I really didn't want to rely on it, because it wasn't letting me track what my body actually needs.
Exercise
Has been iffy, see: menstrual cycle annoyances. I'm hoping to get back into swimming in the near future, if that's resolving the way I think it may be finally. (low grade spotting since *July* is tedious: I really want to avoid artificial hormones, so I'm back on taking chastetree extract, which has worked in the past for me, but it also takes a while to kick in.)
In general, stuff I can start and stop quickly when I get tired is best - swimming, I just have to get to the end of the pool. Walking is trickier, because if I'm outside, I need to get home again. (I may give up and pick up walking on the indoor track at the Y, which I find tedious but at least one can stop when one likes.)
Mostly, I am not currently fretting about it.
Stuff that helps my brain remake connections
One of the major frustrations has been recognising that my brain wasn't working right (or the way it used to) but not knowing how to fix it.
What turns out to help is stuff that helps reconnect my brain, and helps my brain to be a sponge absorbing new things and making new connections. Not only do I feel better, but it's improving a lot of function (and while I'm still sometimes frustrated, it's actually making a pretty rapid difference, all things considered. A year feels like a long time, but at the same time, there are people who go years without meaningful diagnosis or treatment.)
The two things that help me most are the Feldenkrais lessons I do, and playing the harp (and music in general). Both of these deserve some more length than I'm going to manage here, so I'll do a separate post.
Also, I have stuff to say about task management tracking, and that really does need to be its own post.
Other stuff that really helped
Trader Joe's: being able to acquire reasonable food with low additives, that I don't have to think about cooking.
The wool mattress pad - made the worst of the temperature extremes much better, helps me sleep better, helped with the achiness of the vitamin D deficiency, and the cat adores it. And in general, making my bed comfy, cozy, and able for me to get plenty of sleep and the best quality sleep I can. (I also have flannel sheets, and a big U shaped body pillow.)
Hiring a cleaning service during the worst of it. (I had to stop when the job went away: the budget on unemployment stretches to either Feldenkrais sessions or cleaning help, and my brain matters more than the house - also, I'm generally keeping up with it again now where I wasn't for a while there otherwise.)
Endless access to BBC mystery series on Netflix. And series mysteries from the library. And rereads of things I know and love well.
Help from friends who could, when they could. (And my mother, who's been helping financially.)
