Hi - this is my first post, but I've lurked around looking for information on PCOS for about a year now and have found tons of valuable information from you guys.
About six years ago my family doc basically told me I had PCOS, but she didn't do anything about it. Another GP put me on Diane35, which I stayed on until my fiance and I decided that we wanted kids and I should get checked out since I'd never been 'officially' diagnosed. My family doc referred me to a fertility specialist and since December 07 I've had a number of tests...all of which came back fine.
This would be awesome news, of course, except I never have periods (unless I'm on provera or BCP). So....they don't know what's wrong with me. I've had tests where my LH comes back a little high, but the last time I had it tested, it was within the lab's range for normal. Everything else is normal, and my ultrasounds all came back normal (as far as I know; the radiologist summarised that it was normal but I haven't spoken to my FS about it yet).
I have a few chin hairs (which is why my doc said years ago it was probably PCOS) and I'm overweight and have more trouble losing it off the pill than on the pill (weird, I know), and there is a possibility I got pregnant on my own just after coming off the pill and miscarried at about 4 weeks or so (but this isn't confirmed).
Just wondering if anyone has the same symptoms or if they've got any idea what it might be. My testosterone has generally come back high, but I think last time it was high-normal as well. I figured with the wealth of knowledge here, someone might have a theory!
Well for one to have PCOS, there aren't really any a number of symptoms you HAVE to have to say you have PCOS. I'd say with the high testosterone, chin hairs, overweight and problem losing it... that would be enough for most to say PCOS. Not all women with PCOS have cysts on their ovaries, so that doesn't qualify it either. Sounds to me like you just have a mild case, but I'm no expert!!
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I have been diagnosed for over 12 years. However, about a year ago when the dr did some tests all my levels were in the "normal" or "high normal" range. This included testosterone. The dr explained to me that the PCOS diagnosis comes from the ratio of specific hormones.. such as LH:FSH. Those should be a 1:1 ratio but mine came back as 2:1.
I also for many years did not get my period unless I was given provera. I have learned by changing my eating habits I can help "induce" my period.
Good Luck!
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DSS 5/30/04 (always will be mine)
AF never was regular until Metformin (1000 to get a period 2000mg to have my miracle)
Also the doc's have just started to treat the thyroid, which has been sitting in "normal" range of 3.98 (which old standards deem ok since its under 5, new guidelines prefer under 3 and now there is talk to having it under 2.5) and now AF shows up, on time- can almost count down the hours! So I guess the point of this all is to become your own advocate, research your results and make sure to know if something is no longer up to date.
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Sorry to be so quiet....thanks for all the advice. I have been on Metformin, but I had a bad reaction to it. My soon to be DH says he never wants to see me on it again. Aside from the usual "fun" side effects, I was always tired, moody, and depressed. So I came off of it after about three months. I never had a period at 1000mg, and I didn't lose any weight.
Right about now I'm more worried about my RE (I think she's an RE). She doesn't seem PCOS friendly, and seems to believe that I don't ovulate or have cycles because of my weight, and my weight has caused PCOS. My MD has told me outright that my weight is directly linked to PCOS. I love when Doctors give me opposite information!
Anyway, I'm going back on BCP - my RE has refused to put me on clomid or anything else.
just saw a show today on Discovery Health where the woman was diagnosed with PCOS, but did not respond to the first line treatments.
She was later diagnosed with Non-classical Adrenal Hyperplasia which can mimic PCOS and has been successfully treated for that disorder. The key to figuring out she did not have PCOS was that her testosterone levels were very high and did not respond at all to treatments targeting Testosterone that would come from the ovaries. Once she was treated for Testosterone coming from the adrenal glands, she saw quick and rapid improvment in her condition.
something to think about...ask your doctor to test which gland is secreting too much testosterone. Treatment for the adrenal originating testosterone is quite different from the ovary originating testosterone...
That's really interesting about the adrenal function. I'm fairly sure my doctor did an additional test to make sure that hyperplasia wasn't a possibility after my original bloodwork came back with higher TSH.
I'm thinking now I might have the endocrine syndrome X, since I might have very mild insulin resistence. Guess I'll have to go read up on that one.
Syndrome X, Metabolic Syndrome, and Insulin Resistance are all the same thing, I believe. There is a LOT of debate about which comes first -- PCOS or IR.
Metformin alone isn't working for me, so we are trying Avandamet, which is the same dose Metformin I was on before, plus 4mg/day of Avandia. What I am trying to say is that there are a lot of different treatment options.
A medical mystery 
there is a link to the newbie roadmap in my siggie for you
