Love that title. I'm gearing up for my 24 hour urine collection tomorrow. :) I've got a beautiful brown bag that I have to keep the collection in, tucked away in my refrigerator...gross. They'll test my cortisol levels to see if they're high over the entire course of the day, rather than just spiking in the morning. I guess Cushing's syndrome comes from having high cortisol in the evenings, as well as the mornings. Normally, levels are highest in the mornings, and drop off over the course of the day. That cycle is lost in Cushing's. So that can lead to "night owl effect"...which I'm sure you've seen is a problem of mine from the times I post on this blog. I can be totally dead all day, especially mornings...and then night time comes and I'm wide awake. The only time that goes away is if I'm seriously lacking in the sleep department (and Lupron's not helping terrifically in that capacity). But that's what I've been like my whole life pretty much-and I know a lot of people have that same thing goin' on. There are definitely "night people" out there who just don't do well in the mornings...so maybe that's just it. Who knows, I'm just seeking information at this point, and peeing in an awkward brown bag.
I was looking at my test results some more, and with my elevated cortisol and aldosterone, I also showed an interesting lack of cortisol stimulation from ACTH. They injected me with ACTH which should normally double your body's cortisol levels within an hour...and mine hardly went up at all, and then promptly dropped down below my baseline level by 90 minutes in. That result normally proves adrenal insufficiency, but usually you have low cortisol with adrenal insufficiency. So I don't know. And I'm still not really sure what role high aldosterone plays in all of this. Or if endometriosis could be a factor, or the Lupron. Oy!
I did want to report that my pain levels have been pretty good the last couple of days. And I've been having an easier time controlling my mood swings (easier, not perfect). I still have pain up under my rib cage, and at times it feels very localized to right around my liver and up under my sternum. There is some random sharp pain throughout my abdomen every once in a while, but it's getting better. I have been ridiculously stressed lately though, and it's been taking a toll on me. I know it's got a lot to do with this new test result, and the unanswered questions. Plus I have a huge project starting at work right now, and I want to be awesome at it. So I just feel really overwhelmed, and I don't know how to stop my mind from racing sometimes. I went to bed last night at 2am, and I woke up this morning at 8am totally stressed out, heart and mind racing, thinking about my project and my cortisol. I mean, that just increases my cortisol!! It's a vicious, vicious cycle.
At this point, I want so badly to calm my mind...but I'm a weak human being. And I want answers. And I feel like I can't rest until I know what's wrong with me. I feel as though there might finally be an answer out there for me- and it's been so long since I've felt that way. It definitely doesn't mean I'll actually get an answer, but I want one so badly... It's hard not to think about it. I want to feel well again, I want to feel lively and young. I want my life back.
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4 comments:
Well, just to let you know, you look lively and young! Beautiful, if you must know.
I'm sure peeing in a bag is ultimately a good thing. Just think, you have the ability to avoid public toilets, just use your refrigerator!
Sorry to hear you're feeling so stressed at the moment. Holding lots of good thoughts for you! The tests sound weird but hey if they do the job what do we mind? Here's hoping you get the answer you want. Thinking of you lots.
Check out http://cushings.invisionzone.com/index.php?act=idx
If you have cyclic Cushing's levels can change drastically in a short period of time.
Do know that not all Cushing's patients can get a high UFC, maybe because they cycle fast and it all evens out. Who knows.
There are also 11 p.m. salivas to do to check cortisol and midnight serums. At midnight your cortisol should be about 0.
Check out my blog if you want. You might have to dig some to find test results etc.
Would love to answer any questions you have. Doctors will quite often run one or two tests and if the labs are "normal' they write you off.
Do you get copies of your labs? Forgot this in my comment on your last post - get a copy of your MRI, usually they'll put it on a cd for you. Is it ordered with/without contrast and focus on the pituitary. Also, know that only about 50% of tumors on glands show up.
Check out the Cushing's website I listed above. Full of info and informed patients.
I have two kids with Cushing's and a husband testing for Cushing's and aldosteronism (which I don't know much about yet.
email is jkennedy265@hotmail.com if you'd like to contact me.
Promise I'm just interested in helping you figure out what's going on.
Good luck tomorrow! That always weirds me out about putting the samples in the fridge. My friend is VERY much a germ-a-phobe, and she set up a cooler for hers. Hehe. Thinking about you!
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