I always get the endocrinology clinic's calls when I'm at work.
But the ACTH/CAH test came back normal, so the extra testosterone is not coming from my adrenal glands. It's a congenital disorder I don't have to worry about passing on, I guess.
Other than that, I'm not sure how I feel. I'm surprised I don't feel more relieved, actually. I chalk that up to the fact that even though another condition has been excluded, there's still obviously something misbehaving inside my body somewhere.
So what's next? Just refilling my prescriptions, then in May doing my next blood test for the follow-up with the endocrinologist. I've finally re-started my cycle after being two months late, but still not noticing anything concrete from the Spironolactone.
February 24, 2010
February 23, 2010
Holiday Notes
I'm home, and I miss the sunshine and palm trees and fantastic food. It was such a nice break, and it was all the things I imagined while I was reclining in that chair with a catheter in my arm.
Of course, even on the best vacations, the beard still comes with. There's always this slight hint of Al's makin' everybody wait, and even though it fades throughout the day, overtaken by the clear blue skies and the scent of fresh waffle cones, you go to bed knowing tomorrow you have to go through it all again. And man, my razor did not want to cooperate last week!
We went to a little live show one day, western themed, and after a song and some jokes to warm up the crowd, it turned into a Dating-Game-style comedy. The reason it was a comedy was because the three men from the audience were blindfolded and the woman was an actor in a dress.
It was a half hour of body hair jokes. "She likes men with a mustache bigger than her own," "She's so generous she'll give you the hair off her back," "She's so ugly, if she were an Eskimo she'd live in an ugloo." Okay that one wasn't about hair (and yes, politically incorrect), but it went on and on.
(...And as I'm typing this, I'm watching season one of How I Met Your Mother, where another girl-with-a-mustache joke just happened.)
We are the butt of a lot of jokes. A lot more than I realize or expect, sometimes. It's weird, because sometimes I almost forget I'm a bearded lady, and I laugh. Sometimes I'm all too aware and I laugh anyway. It often depends on the precise context of the joke.
But to borrow from the man on that stage in the pink rockabilly dress: "Ah know, mah beauty is shocking." I was rooting for "her" from the first back hair joke, but after she'd been out on stage a while I warmed to her fireball character. She was confident; she knew herself and what she wanted. Yes, people were laughing at her as well as with her, but she rocked it.
We all need to learn how to laugh at our imperfections. It is so sexy.
Of course, even on the best vacations, the beard still comes with. There's always this slight hint of Al's makin' everybody wait, and even though it fades throughout the day, overtaken by the clear blue skies and the scent of fresh waffle cones, you go to bed knowing tomorrow you have to go through it all again. And man, my razor did not want to cooperate last week!
We went to a little live show one day, western themed, and after a song and some jokes to warm up the crowd, it turned into a Dating-Game-style comedy. The reason it was a comedy was because the three men from the audience were blindfolded and the woman was an actor in a dress.
It was a half hour of body hair jokes. "She likes men with a mustache bigger than her own," "She's so generous she'll give you the hair off her back," "She's so ugly, if she were an Eskimo she'd live in an ugloo." Okay that one wasn't about hair (and yes, politically incorrect), but it went on and on.
(...And as I'm typing this, I'm watching season one of How I Met Your Mother, where another girl-with-a-mustache joke just happened.)
We are the butt of a lot of jokes. A lot more than I realize or expect, sometimes. It's weird, because sometimes I almost forget I'm a bearded lady, and I laugh. Sometimes I'm all too aware and I laugh anyway. It often depends on the precise context of the joke.
But to borrow from the man on that stage in the pink rockabilly dress: "Ah know, mah beauty is shocking." I was rooting for "her" from the first back hair joke, but after she'd been out on stage a while I warmed to her fireball character. She was confident; she knew herself and what she wanted. Yes, people were laughing at her as well as with her, but she rocked it.
We all need to learn how to laugh at our imperfections. It is so sexy.
February 8, 2010
ACTH/CAH Test
Thank goodness that’s over! And it was very easy, too.
Sorry about missing last week’s update. I got hit with another flu and had to spend the week in bed. But I’m doing better now, and with the ACTH test over I am nothing but happy.
The main reason I was frightened was the idea of the clinic being in the hospital--which it really isn’t, but you know how irrational fears can be. And I knew they’d need to draw blood three times and inject me once, so I was imagining all sorts of needles and tubes. But really, the only reason I had to go to the hospital was because the IV couldn’t be done at a normal clinic--and they only make one hole for the catheter, and everything goes in and out of there. It was really just a long blood test.
When I found the right area and the right desk to check in for my appointment early this morning, they fitted me with a bracelet. No sooner did I sit down then the nurse called me into the room. She was so pleasant and patient with my nerves. I was put right at ease. She explained the test once more, and then I signed a waiver which really had little to do with my particular test; it seemed to be more of a formality. She then checked my blood pressure, which reflected my anxiety, and settled me back in the reclining chair with my left arm on a heating pad to start the catheter.
She took my blood once, then flushed the tube with a bit of saline solution. I’ve never had an IV before, so the slightly cold sensation passing through my arm for a moment was a little unnerving at first, but easy to ignore each subsequent time she did it. Once the catheter was clean of blood, she injected the cortrosyn slowly over two minutes--you don’t want it to hit too fast. The bottle is tiny, about the height of half your pinky, and much of that is the lid. About a minute into the injection, I could feel a slight pressure in my chest under my ribs, rather like heartburn. Apparently some people describe it as butterflies or even nausea, and is common when doing this test. It wasn’t bad at all and eased off quite quickly.
Cortrosyn is, to my understanding, a synthetic form of a naturally occurring chemical produced by the pituitary gland when it’s communicating with the adrenal glands. So the next two times she took my blood over the following hour will help show if there’s any blockage in the chain of production of the hormones. And that, in turn, will indicate if congenital adrenal hyperplasia is the cause of the excess male hormones in my body. (That’s why they also called it a CAH test, for “congenital adrenal hyperplasia.”)
In between her taking my blood, she turned off the light and let me doze--nerves kept me from sleeping well last night and I even dreamed about the test. But I ended up spending the whole time talking to my mother, who sat in the neighboring chair. The whole thing took about an hour in a half, and I was up immediately and almost giddy with relief.
It can take a couple of weeks for the results to come back, and when they do, the endocrinologist is going to give me a call. I spoke to her office already today just to make sure she wanted me to go back on the Spiro.
And now, I’m off on vacation. See you in two weeks!
Sorry about missing last week’s update. I got hit with another flu and had to spend the week in bed. But I’m doing better now, and with the ACTH test over I am nothing but happy.
The main reason I was frightened was the idea of the clinic being in the hospital--which it really isn’t, but you know how irrational fears can be. And I knew they’d need to draw blood three times and inject me once, so I was imagining all sorts of needles and tubes. But really, the only reason I had to go to the hospital was because the IV couldn’t be done at a normal clinic--and they only make one hole for the catheter, and everything goes in and out of there. It was really just a long blood test.
When I found the right area and the right desk to check in for my appointment early this morning, they fitted me with a bracelet. No sooner did I sit down then the nurse called me into the room. She was so pleasant and patient with my nerves. I was put right at ease. She explained the test once more, and then I signed a waiver which really had little to do with my particular test; it seemed to be more of a formality. She then checked my blood pressure, which reflected my anxiety, and settled me back in the reclining chair with my left arm on a heating pad to start the catheter.
She took my blood once, then flushed the tube with a bit of saline solution. I’ve never had an IV before, so the slightly cold sensation passing through my arm for a moment was a little unnerving at first, but easy to ignore each subsequent time she did it. Once the catheter was clean of blood, she injected the cortrosyn slowly over two minutes--you don’t want it to hit too fast. The bottle is tiny, about the height of half your pinky, and much of that is the lid. About a minute into the injection, I could feel a slight pressure in my chest under my ribs, rather like heartburn. Apparently some people describe it as butterflies or even nausea, and is common when doing this test. It wasn’t bad at all and eased off quite quickly.
Cortrosyn is, to my understanding, a synthetic form of a naturally occurring chemical produced by the pituitary gland when it’s communicating with the adrenal glands. So the next two times she took my blood over the following hour will help show if there’s any blockage in the chain of production of the hormones. And that, in turn, will indicate if congenital adrenal hyperplasia is the cause of the excess male hormones in my body. (That’s why they also called it a CAH test, for “congenital adrenal hyperplasia.”)
In between her taking my blood, she turned off the light and let me doze--nerves kept me from sleeping well last night and I even dreamed about the test. But I ended up spending the whole time talking to my mother, who sat in the neighboring chair. The whole thing took about an hour in a half, and I was up immediately and almost giddy with relief.
It can take a couple of weeks for the results to come back, and when they do, the endocrinologist is going to give me a call. I spoke to her office already today just to make sure she wanted me to go back on the Spiro.
And now, I’m off on vacation. See you in two weeks!
January 29, 2010
More Tests, con't
Just booked my ACTH test. I thought I might have to beg and manipulate for a day off from work, but they managed to squeeze me in on a day off. The week after next, you'll get to learn all about it. Definitely more nervous now, but it will be over and done with before my vacation.
I've been so busy this past week that I've had to shave every day in order to go out. That's been tough on my skin, but aside from that, I've felt just a little bit more confident about it. My skin seems clearer and I still say the shadow's not coming in as quickly. As a bit of celebration, I cut my hair. It's something I've wanted to do for a while, and now just seemed like a good time to give a new style a try. It was exhilarating to chop it off after a few years, and while I'm enjoying the shock from people, I'm also going to enjoy just having a change. There's still just enough hair to comfortably hide my face if I'm feeling insecure, though, so maybe it's not so brave. But I'm giddy about it.
I've been so busy this past week that I've had to shave every day in order to go out. That's been tough on my skin, but aside from that, I've felt just a little bit more confident about it. My skin seems clearer and I still say the shadow's not coming in as quickly. As a bit of celebration, I cut my hair. It's something I've wanted to do for a while, and now just seemed like a good time to give a new style a try. It was exhilarating to chop it off after a few years, and while I'm enjoying the shock from people, I'm also going to enjoy just having a change. There's still just enough hair to comfortably hide my face if I'm feeling insecure, though, so maybe it's not so brave. But I'm giddy about it.
January 26, 2010
More Tests
I waited all day at work for an opportunity to call the endocrinologist back. I was so unfocused I even forgot to take my Spiro for the day. I finally had to run into the stock room in between clients to make the call in a clandestine fashion amongst dusty boxes. She was with a patient so she would have to call me back again, but the receptionist read "ACTH stimulation test" off my chart and I knew.
Still, I thought maybe I didn't know. Maybe I was mistaken. I'm no expert on all the different tests you can take to diagnose the cause of hirsutism, so I tried not to angst about it too much. I took my phone with me everywhere this morning, including into the bathroom while I shaved. And while I was shaving I did get a phone call, but on the land line, so I couldn't get to it. It was actually good news--a job interview. But not long after that the endo called and confirmed my suspicions. I'm all afluster with all the news I'm getting today!
So, I'm going to have to do the ACTH test to rule out (or confirm) congenital adrenal hyperplasia. Was hoping (and expecting) not to, but hey, now it needs to be done, and in the process you'll all get to find out about it.
Since this is a circumstance I didn't consider all that much, I didn't know too much about it. I'm sure that's true of some of my readers out there, so I'll try to explain as best I can with what little knowledge I have.
Because not all the symptoms need to be present to be diagnosed with polycystic ovarian syndrome, it's best to eliminate all other possible causes. High levels of male hormones can usually be traced back to either the ovaries (or testes in men) or by the adrenal glands. (The adrenal glands sit on top of your kidneys, and do produce other things like adrenaline.) That's why the endo ordered bloodwork for 17 hydroxyprogesterone (17H) and DHEAS.
17H is a hormone that is produced when the body is making sex hormones (like androgens and estrogens). In people with adrenal hyperplasia, there is apparently a blockage in the chain of hormone production, so this hormone builds up in the body.
DHEAS, or dehydroepiandrosterone sulfate, is also made in the adrenal cortex, and is also used to help determine where the high levels of male hormones are coming from. In people with adrenal hyperplasia, this steroid is high as well. Both these tests can rule out a lot of things, so don't freak out if they appear on your lab requisition. They're used to determine PCOS and other things, too.
These tests need to be taken in the morning, because it seems production drops off as the day goes on. They also have to be taken during the first part of a woman's cycle because that tends to be when these hormones are at their most normal levels.
The thing is, the results of these tests will only go so far. They can't tell you if your levels are high or adrenal-hyperplasia-high. The endo called this a "grey zone," where adrenal hyperplasia still can't be confirmed or ruled out, and further testing is required. And so I am waiting for a nurse from the lab at the hospital to schedule me ACTH stimulation test. I am not going to look this up right now, I think I'd rather not know too much about it and risk making myself more nervous, but the endo did explain in a nutshell what happens. I go in, the nurse injects me with something that will stimulate the production of hormones, then do a blood test 30 and 60 minutes afterward. I think I'll be able to handle that, but still, it being at the hospital and something I've never done before, I know I'll get more and more anxious closer to. So I'd appreciate it if readers didn't share their horror stories about this test or anything. Ignorance is bliss right now.
The endo seemed optimistic about the promptness of the scheduling, so I may be able to get this over with before my vacation. She'll call me with the results. (I keep exclaiming she's awesome because it's true! I've never had this kind of treatment from any doctor before.)
And also, I have to stop taking the Spiro for ten days prior to the test, because it can effect the results. She told me to stop taking it now--too bad I already took the pill early this morning to make sure I didn't forget, or I'd already be two days ahead of the game! I wonder if my cycle will regulate before my trip? That would be nice. I had a one-day period at 22 days this time, so I'm not sure that even counts.
Still, I thought maybe I didn't know. Maybe I was mistaken. I'm no expert on all the different tests you can take to diagnose the cause of hirsutism, so I tried not to angst about it too much. I took my phone with me everywhere this morning, including into the bathroom while I shaved. And while I was shaving I did get a phone call, but on the land line, so I couldn't get to it. It was actually good news--a job interview. But not long after that the endo called and confirmed my suspicions. I'm all afluster with all the news I'm getting today!
So, I'm going to have to do the ACTH test to rule out (or confirm) congenital adrenal hyperplasia. Was hoping (and expecting) not to, but hey, now it needs to be done, and in the process you'll all get to find out about it.
Since this is a circumstance I didn't consider all that much, I didn't know too much about it. I'm sure that's true of some of my readers out there, so I'll try to explain as best I can with what little knowledge I have.
Because not all the symptoms need to be present to be diagnosed with polycystic ovarian syndrome, it's best to eliminate all other possible causes. High levels of male hormones can usually be traced back to either the ovaries (or testes in men) or by the adrenal glands. (The adrenal glands sit on top of your kidneys, and do produce other things like adrenaline.) That's why the endo ordered bloodwork for 17 hydroxyprogesterone (17H) and DHEAS.
17H is a hormone that is produced when the body is making sex hormones (like androgens and estrogens). In people with adrenal hyperplasia, there is apparently a blockage in the chain of hormone production, so this hormone builds up in the body.
DHEAS, or dehydroepiandrosterone sulfate, is also made in the adrenal cortex, and is also used to help determine where the high levels of male hormones are coming from. In people with adrenal hyperplasia, this steroid is high as well. Both these tests can rule out a lot of things, so don't freak out if they appear on your lab requisition. They're used to determine PCOS and other things, too.
These tests need to be taken in the morning, because it seems production drops off as the day goes on. They also have to be taken during the first part of a woman's cycle because that tends to be when these hormones are at their most normal levels.
The thing is, the results of these tests will only go so far. They can't tell you if your levels are high or adrenal-hyperplasia-high. The endo called this a "grey zone," where adrenal hyperplasia still can't be confirmed or ruled out, and further testing is required. And so I am waiting for a nurse from the lab at the hospital to schedule me ACTH stimulation test. I am not going to look this up right now, I think I'd rather not know too much about it and risk making myself more nervous, but the endo did explain in a nutshell what happens. I go in, the nurse injects me with something that will stimulate the production of hormones, then do a blood test 30 and 60 minutes afterward. I think I'll be able to handle that, but still, it being at the hospital and something I've never done before, I know I'll get more and more anxious closer to. So I'd appreciate it if readers didn't share their horror stories about this test or anything. Ignorance is bliss right now.
The endo seemed optimistic about the promptness of the scheduling, so I may be able to get this over with before my vacation. She'll call me with the results. (I keep exclaiming she's awesome because it's true! I've never had this kind of treatment from any doctor before.)
And also, I have to stop taking the Spiro for ten days prior to the test, because it can effect the results. She told me to stop taking it now--too bad I already took the pill early this morning to make sure I didn't forget, or I'd already be two days ahead of the game! I wonder if my cycle will regulate before my trip? That would be nice. I had a one-day period at 22 days this time, so I'm not sure that even counts.
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