November 17, 2009

First Visit to an Endocrinologist

Summary: No diagnosis yet. More tests, and I'm going on an androgen blocker.

And now for the long, detailed version, which I'm sure everybody loves. For those who haven't read my entire story, an endocrinologist is the farthest I have come in the nigh-decade since the hair began to grow. I was so excited and worried for this appointment. I was afraid to know what the cause was, and afraid there would be no answer. I was afraid the endo was going to be curt, disinterested, and rush me out of there. (By the way, don't believe everything you read on sites like RateMyMD.) I was afraid to get a prescription, and afraid there wouldn't be one. Needless to say, I was all over the place.

The closer I got to this appointment, the more emotional I became. I felt more strongly than ever that I wanted to tell everybody about this secret I keep, even though I figured this wouldn't benefit anyone. And as I ran through outcomes in my head, I started to cry. Often. The day before my appointment I was unsteady and flustered and could think of nothing else. I don't even remember what I did at work. After dinner I wrote down questions, previous tests, and anything else I wanted to remember for the appointment tomorrow. I didn't refer to them once in the consultation, but the act of writing them down cemented them in my head.

From the moment I put my boots on, to wandering through the maze of rooms on the medical floor of the building, to sitting in the waiting room of the clinic, my chest was tight, my heart hammering, and my hands and feet restless and damp like I was about to give a speech. One of the office staff measured my height and weight as soon as I checked in, and then I sat and read. I was there early--that's the only reason I waited. I watched the few women who came in and out in my periphery, wondering if anyone was here for the same reason. I couldn't tell. When they called me into an examining room, and I had barely the time to sit down and squint at a poster of the thyroid gland before the endo came in and shook my hand. She knew what I was there for, had my blood tests in her hand, and took notes as we went over my symptoms, my medical and family history. Then she did a brief physical exam, and we discussed where she wanted to go from here and let me ask some questions. She took the time to address every concern I had, and was happy to explain everything. And considering how often she must have to--she says hirsutism is one of the most common things she sees as an endocrinologist--I was extra impressed.

We talked about the likelihood of PCOS. She explained it was a diagnosis of elimination, and supported what I've read about not all the symptoms needing to be present. In my case, since I only have the hair as a symptom, an ultrasound won't be necessary. All I am needing to manage is the hormones. The endo still wants to eliminate the adrenal glands as the producers of the testosterone. So that means another blood test, which has to be done during the first two weeks of my cycle. I'll also have to get tested for potassium levels, since she wants to start me on the androgen blocker Spironolactone, which is a potassium-sparing diuretic. But assuming those tests come back normal, I shan't be hearing from the endo until our six month follow-up.

I went right to a pharmacy to fill the prescription. The pharmacist, a man, peered at it and said, "It's some kind of water pill?" It is, so I nodded, though that's not what I'm taking it for. The instructions advised me not to take it after 6 pm so I'm not getting up in the night to pee. So tomorrow will be the day I start. The medication will take a few months to start to work, if it works at all. But I will be sure to report on any changes that I notice. It's not a cure, but it should reduce the amount of hair and rapidity of its growth. I often expect the people who might read this to have already done some research on hirsutism's causes and treatments. Perhaps I should spend some time making entries on that sort of thing?

I'm feeling good, overall. Taking medication of any kind always frightens me, but after so many years, I think I owe it to myself to try it. It's all about making progress for me, and finding the best way to live with my hair. So here we go...

4 comments:

Sophie said...

I wonder if you received my comments to your last two blogs? Or were they just too long? ;)

Well, I try too keep it short this time :)) Just wanted to say - I could have written almost the same thing. Almost, because my endo is a man and the pill is called differently. I admire you for alwas finding out what it is you taking/use and checking the ingredients. I have no idea what my pill has in it (I know it has no gluten which is all I care about). The leaflet is in the cupboard... I should read it...
I have been on the thing for some three weeks now and going to see my endo next week to talk about side effects and effects in general. Surprisingly, me, Sophie, is not noticing side effects at the moment which is a bit shocking :)however, it did not affect me in a good way either. But it has been three weeks, not two years so I better be patient. (Oh, I AM lying, my boobs seem slightly bigger, especially when I put my push up bra on!)
Please keep us posted about your medicine and how it works. If it does anything better than mine ;), then I'd talk to my endo about it. What I am really happy about is that your doc said exact same stuff mine did - which means that they know what they are talking about and not making things up (like my gyn before). As in: two opinions better than one.
Whats wrong with your pharmacists?! Eh... I went immediately to mine, too and all she did was quickly explained that I have to take it with dinner and gave me a "sorry" look but in a good way "sorry" - as in caring and understanding, not humiliating...
WTF?! -> ratemymd?!!! what a sick idea...
Oh my, I was supposed to keep it short.
end of transmission.

Becky said...

This is similar to my endo experience. Really nice specialist, ran a bunch of tests, said I didn't have PCOS, and I was put on spiro too. Turns out my hirsutism was caused by radiation exposure. I'm a real live mutant.

Allerleirah said...

Soph - That's reassuring to hear! I told ya we might be racing. Side effects worry me too, so we'll see. Three weeks is probably not long enough to see if an androgen blocker is working--I was told (and have read) not to expect anything for three months at least. But if you can get in to see your endo that quickly and keep communication going about your treatment, that's excellent.



Becky - I thought that was so interesting in your blog. It's not a cause I've ever read about, but considering all the harmful things we can be exposed to, even things we don't even know the full effects of, who knows, right?

Sophie said...

Al, yes, I know - I thought my appointments were slow but in comparison with yours, I am on a super fast train :)
Becky, I have heard about the radiation before just once and I am pretty sure it was your blog where I read it. What kind of radiation (microwave or nearby explosion kind of scale?)and how did they conclude that? Is there an anti-radiation exposure "cure"? Im nosy but it's because I just want to find out... one day... maybe...