Finally, I have an official PCOS diagnosis, and a doctor who is actually going to treat it instead of telling me to come back after I’ve been trying to get knocked up for 6 months.
Yesterday I got the results of the multitude of blood and saliva tests that my PCOS-specialising doctor sent me for.
I have high testosterone and DHEA (the testosterone precursor) levels – which is what he bases an official PCOS diagnosis on. Happily, he classifies my case as mild.
I also have excess oestrogen, which is what caused my presentation to be a-typical in that I don’t suffer from a lot of the symptoms of PCOS such as hirsutism, acne, and so on. The oestrogen has been masking the presence of the excess testosterone.
According to the tests, I’ve been ovulating regularly despite not having had a period for over 6 months. I didn’t even know that was possible, but apparently it is!
What’s causing me to not have periods however is a marked lack of progesterone. The doctor said that progesterone and oestrogen levels should be about the same. My oestrogen came back at 22, and my progesterone? Was 0.2. Yeah, it’s lower than it should be by a factor of over 100.
He also did some test which shows what my insulin levels have been for the last three months (I have NO idea how this test works!) and apparently they’re high (insulin resistance), and also unstable. The doctor told me that this can sometimes lead to type 2 diabetes, and assured me that THIS IS GENETIC. Yeah, that’s right baby!
And the icing on the cake? My cortisol levels are very low – I have adrenal exhaustion. Doc says that this is probably the reason why I’m always tired.
Hallelujah for a doctor who actually finds and treats problems!
This doctor believes in a 4 step approach to treating PCOS, and strongly believes that the majority of PCOS is currently being mistreated. He’s starting me off on progesterone supplements, and I have to go back in a couple of months, after which we will look at the insulin and cortisol stuff. Apparently until the oestrogen/progesterone/testosterone thing is normalised, there’s no point trying to fix the other things because the body will not absorb other supplements properly. I’m hopeful that finally being treated will help me feel normal again.
I have to say, I’m kind of irritated that it has taken so long to find someone who was willing to find out exactly what’s going on. Since my sister was diagnosed by ultrasound about 5 years ago, I have asked every doctor I’ve been to about PCOS, if I could have it, and whether I should be tested for it. They pretty much all blew me off – which is ridiculous seeing as PCOS has a strong genetic component. But since I was already on the Pill and not trying to get pregnant, nobody cared. And I’ve been asking doctors about the tiredness (and the weight gain) for just as many years. Thanks for nothing medical people.
The doctor recommended a book to me called The Low GI Guide To Managing PCOS, and I bought it because it has a lot of information about PCOS, and some delicious sounding recipes. I skimmed through it last night, and I have to say it was a mind-bending combination of weight loss diet and HAES. There’s even a part in there that says don’t diet, references to the fact that low kilojoule diets don’t work, cause more problems than they fix, encouragement to eat foods that you love even if they are high GI, and assurances that you don’t have to be perfect, even small changes are good, regardless of their affect on your weight. And yet there was a chapter than seemed to be all about the weight loss stuff – I kind of skipped this one.
But since I’ve been trying to get some lower GI foods into my diet for the last couple of months anyway (and it has a recipe for chocolate and pear muffins), I still bought it. I will continue to try to eat low GI where I can, and I will continue to completely ignore my weight. I kind of got the feeling from this book that the authors believe in HAES and a lower GI diet for its own sake—or maybe that’s my FA bias showing— but felt that they would sell more books if it had something of a weight-loss focus. And from what I’ve seen of PCOS message boards (*shudder*), they’re probably right. Its possibly one of the best diet books I’ve ever had (although I did only skim it, not read and dissect in detail), and I would recommend it for anyone who has PCOS and is trying to lose weight, mostly because I think they would benefit from the messages of “you don’t have to be perfect”, “don’t worry so much about the weight” and “its not your fault”. Has anyone else read this book? Am I deluding myself here?
On a somewhat unrelated note, my sister-in-law seems to have discovered IE during pregnancy (thank goodness!). I went to visit her and the kid yesterday, and while we were celebrating the news story about how our government is considering making weight-low programs and products prove they can help people keep off the kilos long-term (HOLY CRAP that would be fantastic! Maybe another post about this later…) she was talking about how she is now only 3 kilos from her pre-pregnancy weight (4 weeks after the birth) purely from the revolutionary action of eating when she’s hungry, and not eating when she isn’t. And we talked about how diets make people fatter, and obsessed with food, about how people have a set point and how now that we’ve both given up on dieting, chocolate just doesn’t hold that much appeal anymore (this continues to blow my mind). I really, really hope that this sticks with her and she doesn’t go back to weight-obsessed-hell (she is the one who bought her wedding dress a size too small and then had panic attacks when it didn’t fit 6 weeks before her wedding).
So, yesterday was quite awesome, all things considered. Now I’m going to go cross all my fingers and toes and hope that our government passes that brilliant law while I wait for the chemist to mix up my (hopefully life changing) meds!
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