what's up here: current working hypothesis
I thought I'd posted about this! And I was wrong. So here it is.
ETA: Please stop saying yay this is awesome, and wishing me steady improvement, and hoping it will all be better soon. I know you mean it well, but that doesn't stop it being badly triggering. My situation is not awesome, though yes it is better than it could be. The potential fix is not fast. And steady improvement is exactly what I don't get; I'm going to have to put myself through helltime after helltime to wean off the flovent. It's pretty damn sucky and I'm sorry if that doesn't fit your positive thinking narratives but please, deal.
Thing the first: No thyroid problem here.
With all the apparently-hypothyroid symptoms and the fact that my TSH (Thyroid-stimulating hormone, which goes up when thyroid levels go low) was hovering at a highish point for over a year, the endocrinologist was pretty much ready to put me on a low thyroid-supplementation dose. We were all "UM, how about checking TSH again first". And it turns out TSH was lower than it's been since before 2008. So, er, no thyroid supplementation thx, and extra-good that we didn't self-medicate. Also extra-good that we're doing our own reading on all this.
The TSH drop suggests that I have almost certainly had measurable adrenal issues since before 2008. Which makes the three years of "Something's wrong, if it's not thyroid what is it, stop dismissing me" all the more frustrating. Anyone think this doesn't have to do with me being a woman of color?*
Thing the second: MRI results; there's no sign of a tumor but my pituitary gland is apparently "full" whatever that means, so they'll want to monitor that. It's an indication, I guess, of secondary adrenal insufficiency? But it's also an indication of *handwave flail*.
Thing the third: Looks like secondary adrenal insufficiency only; the endocrinologist had worried that my adrenal gland was dead wrt cortisol, but now thinks it's just pining for the fjords.
This is good news; it means I don't have another shiny autoimmune disorder. But it's good news of a qualified sort.
Thanks to a paper that marydell pointed us at, we realized that it might be my Flovent wot dunnit.
Basically I've been on a ridiculous high dosage of Flovent for about 6 years now; and Flovent is effective because it
sticks around in the lungs a while, but because of this it also gets through the membrane into the blood and tells the body there's plenty of cortisol, no problem!
For most people, this is a smallish effect and doesn't cause any major problems, but of course it varies from person to person, and it looks like I'm one of the lucky people who get the extra-large effect: so! Flovent in blood tells body that there's lots of cortisol! Pituitary gland responds by downregulating cortisol production a lot, and the adrenal gland stops making as much.
So initial results that looked like adrenal damage might be adrenal atrophy -- that is, it's not working, yeah, but maybe that's just because it's been downregulated so long, so fixing the pituitary issue might eventually help or fix the adrenal one.
What this means, if we're right, is that it's no surprise I'm not doing awesomely at this stage. (I'm on the max normal cortisol supplementation and still mostly a wet rag.) So we can not-panic over that.
It also means there's a chance of getting better, if I can wean off the flovent. Over a longish period (months to years) and with lots of suck in the meantime, including feeling worse every time I cut the flovent down.
There's some evidence for us being right -- I cut my flovent dose in half on Jan 15th, and splatted a whole lot. My peak flow stayed out of danger levels -- went down some, but not drastically -- but the exhaustion-inflammation-pain-weakness of the adrenal insufficiency got a whole lot worse. And has been getting better, slowly, which is hopeful; I'm not yet back up to the Jan 14th energy levels, but I'm a whole lot better than I was on Jan 15th. (Except, ahem, when I FORGOT my morning flovent on Saturday. Er. Interestingly, my peak flow was still okay saturday, but I crashed like a zeppelin by 6pm. Moar evidence.)
So! The working plan now is to transition off the flovent, in part or whole. To another steroid with much smaller systemic effects, or to some kind of hybrid low-dose steroid plus other asthma control mechanism. Problem is, I have nasty side effects to a lot of asthma drugs, so... this should be fun. *sighs* And it is, necessarily, going to leave me very short on resources every time I make a change.
I am, at this point, monitoring & recording temperature, peak flow, and subjective state every few hours. So nothing's going to spiral out of control without me noticing. (Assuming I remember! Like I remember my meds, haha.)
Thing the fourth: We wouldn't have figured any of this out without a) our own research, b) helped by you guys. The endocrinologist did not think to consider the flovent as a cause until we pointed it out to her. So, marydell, if I do get better within the next year or two, it'll be largely thanks to you.
----
* BTW this doesn't pattern as simply as one might think on the doctor end. The two main doctors who dismissed me repeatedly? Both WOC too. The one who took me seriously and caught it? White guy. Could be a fluke, but I wouldn't be surprised if WOC doctors were pressured to be more hardline and dismissive of subjective data, and having to prove themselves, etc.
ETA: Please stop saying yay this is awesome, and wishing me steady improvement, and hoping it will all be better soon. I know you mean it well, but that doesn't stop it being badly triggering. My situation is not awesome, though yes it is better than it could be. The potential fix is not fast. And steady improvement is exactly what I don't get; I'm going to have to put myself through helltime after helltime to wean off the flovent. It's pretty damn sucky and I'm sorry if that doesn't fit your positive thinking narratives but please, deal.
Thing the first: No thyroid problem here.
With all the apparently-hypothyroid symptoms and the fact that my TSH (Thyroid-stimulating hormone, which goes up when thyroid levels go low) was hovering at a highish point for over a year, the endocrinologist was pretty much ready to put me on a low thyroid-supplementation dose. We were all "UM, how about checking TSH again first". And it turns out TSH was lower than it's been since before 2008. So, er, no thyroid supplementation thx, and extra-good that we didn't self-medicate. Also extra-good that we're doing our own reading on all this.
The TSH drop suggests that I have almost certainly had measurable adrenal issues since before 2008. Which makes the three years of "Something's wrong, if it's not thyroid what is it, stop dismissing me" all the more frustrating. Anyone think this doesn't have to do with me being a woman of color?*
Thing the second: MRI results; there's no sign of a tumor but my pituitary gland is apparently "full" whatever that means, so they'll want to monitor that. It's an indication, I guess, of secondary adrenal insufficiency? But it's also an indication of *handwave flail*.
Thing the third: Looks like secondary adrenal insufficiency only; the endocrinologist had worried that my adrenal gland was dead wrt cortisol, but now thinks it's just pining for the fjords.
This is good news; it means I don't have another shiny autoimmune disorder. But it's good news of a qualified sort.
Thanks to a paper that marydell pointed us at, we realized that it might be my Flovent wot dunnit.
Basically I've been on a ridiculous high dosage of Flovent for about 6 years now; and Flovent is effective because it
sticks around in the lungs a while, but because of this it also gets through the membrane into the blood and tells the body there's plenty of cortisol, no problem!
For most people, this is a smallish effect and doesn't cause any major problems, but of course it varies from person to person, and it looks like I'm one of the lucky people who get the extra-large effect: so! Flovent in blood tells body that there's lots of cortisol! Pituitary gland responds by downregulating cortisol production a lot, and the adrenal gland stops making as much.
So initial results that looked like adrenal damage might be adrenal atrophy -- that is, it's not working, yeah, but maybe that's just because it's been downregulated so long, so fixing the pituitary issue might eventually help or fix the adrenal one.
What this means, if we're right, is that it's no surprise I'm not doing awesomely at this stage. (I'm on the max normal cortisol supplementation and still mostly a wet rag.) So we can not-panic over that.
It also means there's a chance of getting better, if I can wean off the flovent. Over a longish period (months to years) and with lots of suck in the meantime, including feeling worse every time I cut the flovent down.
There's some evidence for us being right -- I cut my flovent dose in half on Jan 15th, and splatted a whole lot. My peak flow stayed out of danger levels -- went down some, but not drastically -- but the exhaustion-inflammation-pain-weakness of the adrenal insufficiency got a whole lot worse. And has been getting better, slowly, which is hopeful; I'm not yet back up to the Jan 14th energy levels, but I'm a whole lot better than I was on Jan 15th. (Except, ahem, when I FORGOT my morning flovent on Saturday. Er. Interestingly, my peak flow was still okay saturday, but I crashed like a zeppelin by 6pm. Moar evidence.)
So! The working plan now is to transition off the flovent, in part or whole. To another steroid with much smaller systemic effects, or to some kind of hybrid low-dose steroid plus other asthma control mechanism. Problem is, I have nasty side effects to a lot of asthma drugs, so... this should be fun. *sighs* And it is, necessarily, going to leave me very short on resources every time I make a change.
I am, at this point, monitoring & recording temperature, peak flow, and subjective state every few hours. So nothing's going to spiral out of control without me noticing. (Assuming I remember! Like I remember my meds, haha.)
Thing the fourth: We wouldn't have figured any of this out without a) our own research, b) helped by you guys. The endocrinologist did not think to consider the flovent as a cause until we pointed it out to her. So, marydell, if I do get better within the next year or two, it'll be largely thanks to you.
----
* BTW this doesn't pattern as simply as one might think on the doctor end. The two main doctors who dismissed me repeatedly? Both WOC too. The one who took me seriously and caught it? White guy. Could be a fluke, but I wouldn't be surprised if WOC doctors were pressured to be more hardline and dismissive of subjective data, and having to prove themselves, etc.