![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Entry tags:
Two years ago
I saw a nice endocrinologist, and started getting my brain and life back. It seems like it might be time to talk about that. I am now at a point where I want to talk about it in public, where it might be useful to other people, too.
Why I talk about this is that I want to give people who find themselves in the same place things they might consider trying. I don't think what worked for me would work for everyone: this is a "Hey, here's info" not a "Do as I do."
So:
- Today: revisit where I started from.
- Tomorrow: comments on making doctors listen
- Sunday: stuff I did that helped during the process.
- Monday: the actual recovery timeline. (short version: it took a lot longer than anticipated. I can sort of see my previous normal from here reliably now, and that's really recent.)
- Tuesday: what all of that means in practice - what it means in terms of life choice and food choices and all sorts of other things.
(which I am mostly snagging from a previous anniversary post)
The actual diagnosis, before I get into details, is hypothyroidism and Vitamin D deficiency, both of which I take medication for, and both of which I do a bunch of other things to support. (Meds by themselves did not get my brain back. I like my brain working.)
The background
I'd worked starting in 2000 as the library paraprofessional at an independent high school, getting my Master's in Library/Information Science in the summer of 2007. In the fall of 2009, my boss there got a new job, and I was hired as the interim librarian for the rest of the year, and then had to go through the full (as my former boss says, "intergalactic") search process, which is stressful all by itself.
They did hire me, but there were bits of that process that were unusually stressful, even for that setting. (As just one example: the meeting in which I knew I'd be hearing either an offer or a "you need a new job in June" was rescheduled *three times*)
So, fast forward to fall 2009, when I take over the new job formally. 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. (I have highly mixed feelings about the program, but the paperwork was hell.) 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 new job, long hours". The way you do, when you in fact have a stressful new job, everyone tells you the first year of that kind of thing is hellish, and so on.
Then I got the flu (H1N1) 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 in 2009-into-2010, 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, poor quality sleep, 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.
This last one was particularly tricky, because it mostly didn't show up talking to people directly (unless you knew me extremely well), and because my norms in terms of communication skills are so high that even pretty substantial drops from my perspective still look like normal skill levels to most people.
- And one more I didn't note directly as a symptom: Vitamin D has a direct effect on eyesight for me: when it's low, my eyes go from "don't need correction" to "Do, or I get daily eyestrain headaches."
Two background history notes
I've had several other - much shorter bursts - of similar symptoms a couple of times in my life. And they'd been odd enough I actually have a long run of thyroid screening tests. (Right around the time my father died when I was 15, and right before I graduated college - again, both times when 'stress' was a perfectly reasonable explanation.)
At times I a) was under a lot of stress and b) feeling lousy, my TSH levels ran around 3.0 (which is where they were in December 2009). When I felt better, they were closer to 1-1.5.
It's also worth noting that since those higher readings, ideas about a good TSH level have dropped: most recently trained doctors (including the endocrinologist I ended up getting a referral to) use 3 as the top level, and will consider treating if you have symptoms there.
The other note is that auto-immune stuff does run in my family. (And I'd already had asthma and allergy diagnoses.)
Diagnosis
I started with - as is common in US healthcare - my primary care physician. Who, not unreasonably, ran me through depression screening (since stress is a depression trigger), and ran a bunch of other tests, which were mostly not helpful. (Other than confirming that, y'know, other stuff wasn't wrong.)
But the more we kept doing the depression checklist (and I saw her four times in December...) the more I kept going "I am not wanting to do anything because I am completely *exhausted*. Perhaps we should look at that."
The last visit, I brought the excellent Elise with me to help me advocate, with the goal of getting a referral to an endocrinologist. That worked, and I got an appointment with him on January 20, 2010. (Which now I look at it is a nicely palindromic date.)
I brought him a big long list and other data (more on that tomorrow), and we tried meds - and they largely worked! (We did a dosage increase in March, and it took me a long time to recover, but the very worst of it got better within a few months.)
Why I talk about this is that I want to give people who find themselves in the same place things they might consider trying. I don't think what worked for me would work for everyone: this is a "Hey, here's info" not a "Do as I do."
So:
- Today: revisit where I started from.
- Tomorrow: comments on making doctors listen
- Sunday: stuff I did that helped during the process.
- Monday: the actual recovery timeline. (short version: it took a lot longer than anticipated. I can sort of see my previous normal from here reliably now, and that's really recent.)
- Tuesday: what all of that means in practice - what it means in terms of life choice and food choices and all sorts of other things.
(which I am mostly snagging from a previous anniversary post)
The actual diagnosis, before I get into details, is hypothyroidism and Vitamin D deficiency, both of which I take medication for, and both of which I do a bunch of other things to support. (Meds by themselves did not get my brain back. I like my brain working.)
The background
I'd worked starting in 2000 as the library paraprofessional at an independent high school, getting my Master's in Library/Information Science in the summer of 2007. In the fall of 2009, my boss there got a new job, and I was hired as the interim librarian for the rest of the year, and then had to go through the full (as my former boss says, "intergalactic") search process, which is stressful all by itself.
They did hire me, but there were bits of that process that were unusually stressful, even for that setting. (As just one example: the meeting in which I knew I'd be hearing either an offer or a "you need a new job in June" was rescheduled *three times*)
So, fast forward to fall 2009, when I take over the new job formally. 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. (I have highly mixed feelings about the program, but the paperwork was hell.) 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 new job, long hours". The way you do, when you in fact have a stressful new job, everyone tells you the first year of that kind of thing is hellish, and so on.
Then I got the flu (H1N1) 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 in 2009-into-2010, 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, poor quality sleep, 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.
This last one was particularly tricky, because it mostly didn't show up talking to people directly (unless you knew me extremely well), and because my norms in terms of communication skills are so high that even pretty substantial drops from my perspective still look like normal skill levels to most people.
- And one more I didn't note directly as a symptom: Vitamin D has a direct effect on eyesight for me: when it's low, my eyes go from "don't need correction" to "Do, or I get daily eyestrain headaches."
Two background history notes
I've had several other - much shorter bursts - of similar symptoms a couple of times in my life. And they'd been odd enough I actually have a long run of thyroid screening tests. (Right around the time my father died when I was 15, and right before I graduated college - again, both times when 'stress' was a perfectly reasonable explanation.)
At times I a) was under a lot of stress and b) feeling lousy, my TSH levels ran around 3.0 (which is where they were in December 2009). When I felt better, they were closer to 1-1.5.
It's also worth noting that since those higher readings, ideas about a good TSH level have dropped: most recently trained doctors (including the endocrinologist I ended up getting a referral to) use 3 as the top level, and will consider treating if you have symptoms there.
The other note is that auto-immune stuff does run in my family. (And I'd already had asthma and allergy diagnoses.)
Diagnosis
I started with - as is common in US healthcare - my primary care physician. Who, not unreasonably, ran me through depression screening (since stress is a depression trigger), and ran a bunch of other tests, which were mostly not helpful. (Other than confirming that, y'know, other stuff wasn't wrong.)
But the more we kept doing the depression checklist (and I saw her four times in December...) the more I kept going "I am not wanting to do anything because I am completely *exhausted*. Perhaps we should look at that."
The last visit, I brought the excellent Elise with me to help me advocate, with the goal of getting a referral to an endocrinologist. That worked, and I got an appointment with him on January 20, 2010. (Which now I look at it is a nicely palindromic date.)
I brought him a big long list and other data (more on that tomorrow), and we tried meds - and they largely worked! (We did a dosage increase in March, and it took me a long time to recover, but the very worst of it got better within a few months.)
no subject
When I started to have Neuropathy back in the mid-90's the lousy MD covering 1000 aids patients refused to believe it WAS Neuropathy because he'd got it in his head that it was cause by AZT, which I'd never taken(my Intuition told me not to and when MD's a decade later made me, I lost vision in my L eye). We ended up having to manipulate him. Since Tricyclics were used for both it and Depression, one of the staff nurses helped me get on some. When the stuff worked, he had to change his mind...
Good luck on your Meds. I know how much "fun" it is both trying to get a "cocktail" that works AND doesn't cause side effects worse than the actual affliction!
Cheers,
Pat
no subject
no subject
One of the areas these missing "letters" cause real problems is with the Adrenal Glands and ALL the stuff they make. Last month they upped my Synthroid. Haven't seen any subjective change and don't have labs until August...
Cheers,
Pat
no subject
no subject
I see a new doctor on Monday (that I found on my own) since my primary care physician said, "I don't know what to do with you" but wasn't willing to refer to me an endocrinologist or let me be "over-medicated".
I'm glad you had someone to advocate for you. It's difficult to that for yourself when you're exhausted and can't think straight.
no subject
When I noticed Jenett's hair was getting dry and brittle, and that her skin was dry, I made supportive noises about endocrinologists being useful, because I knew those were possibly thyroid-related, particularly combined with the low energy levels and stuff. (I had part of my thyroid removed some years ago due to multiple benign tumors, so I had direct personal experience with that sort of thing.) There are other things that can cause those symptoms, of course, but thyroid stuff is more common than one might think.