How PCOS diagnosis is determined

gavman · 03-29-2004, 02:12 AM

To anyone who has been diagnosed with PCOS or has information regarding that diagnosis I would like to know exactly how that diagnosis is determined. I've been reading up on it and am confused because the symptoms seem to vary so much. For example some may have elevated hormone levels, some may not. Some may have ovarian cysts, others may not. Some people may or may not have excess hair, male pattern baldness, weight gain, acne, etc... If some people have some of the symptoms and not others, or they vary from one person to the next, how do the doctors determine if you actually have PCOS? Why can some individuals have elevated hormone levels (or any other main symptom of this syndrome) but not have PCOS while others may not have elevated hormone levels yet they do have PCOS? It just seems so vague. Like any doctor can just tell you that you have PCOS. Are there specific tests I should request besides blood work to check testosterone levels, LH, insulin resistance, and ultrasound? What will they show? How do doctors determine that it is PCOS and not something else? Sorry for so many questions, it just seems to me to be diagnosed based on so many different variables. Thanks for any information you can give me.
Cris

Blastoff9600 · 03-29-2004, 10:21 AM

Well for me all my hormone tests except one was normal. My DHEA level wa outragoulsy high for someone in my age group. That can be a indicator of PCOS. I have one area in which I have hair lose,I also have weight gain even though I shouldnt,and facial hair. Also for a little while I was having some funky cycles. That is how I was DXed for PCOS. I dont knwo if I have cysts or not since my dr didnt bother to do an u/s.
If you think you might have it then try to get your regular dr to give you a referral to a Endocrinologist. They actually are better are dxing PCOS and the ways to treat it.

gavman · 03-29-2004, 11:51 AM

Blastoff9600,
Thanks for the info. It's actually my 12 yr old daughter that they think may have this. She has been to two different endocrinologists due to beginning puberty at age 5. Poor girl. Her hormones just went crazy. She was tested for adrenal hyperplasia which I read many people with PCOS have also been tested for. She has a lot of the symptoms-elevated testosterone, weight gain, acne, stopped menstrating 7 months ago (she began having periods at age 10 and had been having them for about a year) no excess facial hair, but very hairy legs/arms to name a few. I'm frustrated because I don't understand why she wasn't tested for this after they determined that she did not have adreanal hyperplasia. Jeez, just five minutes of research on the internet and I could see that she has many of the symptoms. Maybe they did not test her due to her age, but if she has all so many of the indicators then why not test her? We've been struggling with this for 7 years now (four doctors)and still have no diagnosis. Very frustrating.
Again, thank you for the information. Anything I can learn about this syndrome will be helpful. We have an appointment to see her pediatrician in a couple of weeks. We began seeing her in January. She is the one who asked me if she had ever been tested for PCOS.
Cris

Blastoff9600 · 03-29-2004, 12:21 PM

Oh that would be very frustrating. But I can also see how some doctors wouldnt think of it for one so young. I know with me It was until last year that is was Dxed with PCOS and I was 28. Once I got to thiking aobut it though I had the signs for about a year prior to that dx.
It would be rare for one so young to have it but with everything else it should have been thought of.
I know how it goes when one has to go through several drs. I have had more than my fair share thanks to infertility.
There is a great study by Marcia Herman-Giddens that might interest you. That is if you havent read it already.

gavman · 03-29-2004, 04:20 PM

Blastoff9600,
Yes, I would be very interested in reading the study you mentioned. Where could I find it? You also mentioned that your DHEA levels where high for someone your age and that is why you were diagnosed. I pulled copies of my daughters lab results to see if they checked that on her. Her DHEA level was 6.4 and it says it should be between 0.2-3.5. So her levels are quite high there as well. Her Androstenedione was 1.88, should be between 0.25-0.80, and Testosterone was 28 on one lab test and 42 on another, but should be less than 25. Until my pediatrician mentioned this syndrome, I never would have even known to look ant these levels. This is really concerning me! I would really like to read that study.
Thanks
Cris