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.

3 comments:

Sophie said...

i had my endo apt today, too. will write about it on cysters later, im feeling a lil too down to write today...
anyway, a lot of big words in your post, will need to read it again with a dictionary... i never had tests like that...
well, i think im done with testing for reasons cause the reason has been officially confirmed... wow... i guess that should be big news... so its the cells in folices that are to blame... they have just been screwed up and are really weak and feed on testosteron.. yeay! so now i know.

keep us posted about those big words, please.

Allerleirah said...

You have a diagnosis? Wow. I'm heading over to Cysters now...

Sophie said...

Right. Read again with the dictionary. Lots of them...

OK, I know you asked not to say anything but there is one thing I found that I think you should know - stress can alter the results, big time. It was seriously underlined in several articles so please please please just be calm, make yourself as comfortable as you can and just feel peaceful before the test. From what I read, there is really nothing to worry about. Can call me anytime, too, I could calm you down with my Polish accent ;)
I am just saying this as I know how freaked out you (we) get about stuff ;) Should I have said "spoiler" at the beginning?

One day of a period, eh? ...