October 15, 2009

Possible Mislabel

I woke this morning--9:00 on my day off--to the sound of my cellphone vibrating. By the time I had untangled myself from the duvet and pulled it out of my bag pocket, I had missed the call, but the display stilled show it as the name of my GP's clinic--the same clinic I had been calling all day to get an appointment with, and had no luck. Still groggy, I redialed. The woman told me my doctor wanted me to come in to discuss the results of my latest blood work, and could I come in today?

I agreed, and of course as the stupor wore off, all sorts of dubious thought started running through my head. Why did they want to see me today? Had they seen something urgent in the results? What had they found that was so different from the one I'd taken almost four months ago? (For those of you who are just joining us or have the memory of a normal human being, this details my last follow-up. She wanted to monitor my thyroid which showed hyperactive before, and testosterone and free androgen on the side.) I figured it was the thyroid. All morning I agonized. Trying to prepare yourself for the worst and yet calm yourself down is no easy task.

To ease the drama of this post, I'll let you know now that my thyroid is back within normal levels and it seems they just had an opening and wanted to fit me into it. This time, I got in right away and only sat for a minute in that small room with the examination table and the biohazard box. Then my doctor came in and asked, "Remind me, what are we doing about the PCOS?"

I'm sure I must have gaped idiotically at her for a second or two. Since when did I have PCOS? My only symptom had been hirsutism for the past eight years. Wasn't I being sent to the endocrinologist so they could determine the cause? When I regained control over my vocal chords, I said that she had referred me to said endocrinologist. She asked me about my previous treatments, which were only for the hair, and then I finally managed to stammer out that no one had ever tried to figure out the cause before now, and I had never had someone call it PCOS.

My blood work, she said, was consistent with it. I think I asked her what was off except for the androgens--such as the glucose. But she said the androgens were enough of an indication, and took me back into the little closet computer room to show me. The results were consistent with the last test, and not shockingly high. She printed off a copy to take to the endrocinologist, and started telling me about what I might be prescribed, and that although she could be communicating with the specialist that I should keep her abreast of how I tolerate the medication and any concerns I might have. She was very sweet again, touching my arm in that way she has, but I only noticed her manner on the surface, because I was still thinking, "PCOS... PCOS... PCOS..."

I just have never had any symptom but the excess hair. My periods are painful but regular, I am not overweight, have no serious problems with acne or insulin--but I know not everyone will have all the symptoms, or present them at the same time. I've considered the possibility of having polycystic ovaries, but I wasn't prepared to hear that when I did. It's possible my GP was just calling it that, and the endocrinologist may find something different, but she's the doctor, not me.

To kill time while I waited for my ride, I went to the drugstore and looked at overpriced makeup. I couldn't wait until we got in the car before I started to tell her what had happened. I haven't told her much about PCOS because I haven't focused a lot of my energy on that eventuality, so I tried to explain what I knew. As I was trying to say that fertility can be an issue, I turned and saw I was standing next to the wedding and baby cards. I don't know if I want kids, or even if that will be a problem I will have to face, but hearing those words come out of my mouth, I just couldn't believe I was saying them. Living with the hair is one thing, but having this name with all these other meanings and possible dangers is something else. For a few moments, I couldn't control my tears.

But after that, I got a handle on myself, came home, had some tea and fresh bread with my family around me. Received some kind and generous words from a friend who had no idea what exactly I was worried about, but never for a moment allows me to demean myself. And I thought of all the strong women I know, or know of, who live successfully with their health problems. And I knew that I could work through this, whatever the results happen to be.

Only a month away, now, and I'll be even closer to knowing for sure. It will be better to know. It can't be treated properly until I know.


Sophie said...

This is very interesting.

After getting some info from LD and cysters site, at my famous appointment I asked my gyn to test me for PCOS as well as the whole millions of other tests and she said she was going to anyway BUT just by looking at me (47kg) she doubts it.. Mind you, I am a coeliac. But I also have regular periods and i tick the right boxes for the example of superb health (hm...)... the results were left on my voicemail in half dutch yesterday but what I understood was that, as usual, ALL my results are perfect APART FROM... the adrogen levels. Which is what my gp originally predicted. At my appointment with gyn she told me that if the results are:
a) androgen level normalish - we can look more pcos tests but doubtful and i would get a referral to dermatologist (who would then prescribe laser)

b) pcos - i'd stay with her (gyn) and we'd work on it together

c) androgen levels high - thats usual cause of hirsutism therefore i'd be sent to endicronologist who is "even more specialised" and we would work on getting the androgen levels down (my gp said that it worked on several of his patient - takes a few years though to see effects)

Today I got an appointment with endicrinologist - 27th october.

I am confused about you being diagnosed with PCOS. Maybe you should chat to LD and Robin and find out more? Second opinion? It just does not add up...

Allerleirah said...

It's just what my family doctor is calling it. I don't think it was an actual diagnosis as much as just "something to call it." I'm definitely looking to the endocrinologist for The Diagnosis.

Sophie said...

saw mine today, see blog post on cysters...

Allerleirah said...

Left you a comment. ;) Always useful to read that stuff, thank you!