Re: PCOS - some thoughts

[Guest guest]

THANKS MS. We need to start a PCOS stories file that was later Dxed as PA?CE Grim MD After seeing Phyllis' posts about PCOS, I figured I'd share my two-cents' worth about the diagnosis of PCOS. PCOS was my second misdiagnosis (anxiety, of course, like many of us, was my first). My symptoms at the time were hypertension, insulin resistance, ovarian cysts, excess fat around my middle (even though I wasn't especially overweight - around 130 lbs at the time), adult-onset acne, dark hair growth on my chin and above my lips, and my hair on my head was falling out in handfuls every time I washed it. And irregular menstruation, although unlike most women with PCOS, instead of amenorrhea my problem was polymenorrhea. This was some years ago and things may have changed since then, but at the time, spiro was the first-line treatment of choice for PCOS. It was supposed to work miracles - clear up acne, stop hair loss, regulate menstruation, and was commonly prescribed to women with PCOS who had no history of HTN (although I suspect those women were few and far between, as most women with PCOS also have metabolic syndrome/insulin resistance - but not all). I was on it for about 3 months - 25mg per day. My acne cleared up and my hair stopped falling out, and yes, my BP was lowered to a safe range. My insulin resistance was not affected in the least. And it turned my already-frequent menstruation into nonstop menstruation. And then there was the breast pain that it caused, which was why I discontinued it in the first place. Fast forward a number of years and it turns out I didn't have PCOS at all, but an adrenal adenoma. While I am not saying that PCOS does not exist, I have to say that I really strongly believe that, as with anxiety, there are a lot of cases that get erroneously diagnosed. PCOS - polycystic ovarian syndrome - is just that, a "syndrome." That means it's a collection of symptoms that fit a certain pattern. In this case, many of the very same symptoms fit the pattern of hyperaldosteronism. But unlike hyperaldo, PCOS has advocacy organizations - not to mention since it's a common cause of infertility, treating it is BIG BU$INE$$ - and it gets a lot more attention than hyperaldo does. Doctors are probably more likely to think PCOS over hyperaldo. Hoofbeats, horses, zebras, & c. So, while the advice to take spiro when one has both PCOS-like symptoms and drug-resistant HTN is very sound, based on my own personal experience I would urge you to find a doctor who will focus on the hyperaldo first. Treating it may resolve the other symptoms. It's too soon after my adrenalectomy to say for sure if all of my symptoms have resolved - menstruation is still unpredictable as ever but the hair loss, unwanted hair growth, acne, symptoms of insulin resistance and abdominal fat have all almost vanished since the surgery. -msmith1928 Nulliparous female, 46, 5'3", 115 lbs, CT showed 1cm left adrenal nodule, AVS determined disease is unilateral, had left laparoscopic adrenalectomy on 10/13/2011. Low sodium, fructose- and grain-free diet due to hereditary fructose intolerance, lactose intolerance, gluten intolerance (probable celiac).

[Guest guest]

Any others out there with Dx of PCOS before Dx of PA?CE Grim MD After seeing Phyllis' posts about PCOS, I figured I'd share my two-cents' worth about the diagnosis of PCOS. PCOS was my second misdiagnosis (anxiety, of course, like many of us, was my first). My symptoms at the time were hypertension, insulin resistance, ovarian cysts, excess fat around my middle (even though I wasn't especially overweight - around 130 lbs at the time), adult-onset acne, dark hair growth on my chin and above my lips, and my hair on my head was falling out in handfuls every time I washed it. And irregular menstruation, although unlike most women with PCOS, instead of amenorrhea my problem was polymenorrhea. This was some years ago and things may have changed since then, but at the time, spiro was the first-line treatment of choice for PCOS. It was supposed to work miracles - clear up acne, stop hair loss, regulate menstruation, and was commonly prescribed to women with PCOS who had no history of HTN (although I suspect those women were few and far between, as most women with PCOS also have metabolic syndrome/insulin resistance - but not all). I was on it for about 3 months - 25mg per day. My acne cleared up and my hair stopped falling out, and yes, my BP was lowered to a safe range. My insulin resistance was not affected in the least. And it turned my already-frequent menstruation into nonstop menstruation. And then there was the breast pain that it caused, which was why I discontinued it in the first place. Fast forward a number of years and it turns out I didn't have PCOS at all, but an adrenal adenoma. While I am not saying that PCOS does not exist, I have to say that I really strongly believe that, as with anxiety, there are a lot of cases that get erroneously diagnosed. PCOS - polycystic ovarian syndrome - is just that, a "syndrome." That means it's a collection of symptoms that fit a certain pattern. In this case, many of the very same symptoms fit the pattern of hyperaldosteronism. But unlike hyperaldo, PCOS has advocacy organizations - not to mention since it's a common cause of infertility, treating it is BIG BU$INE$$ - and it gets a lot more attention than hyperaldo does. Doctors are probably more likely to think PCOS over hyperaldo. Hoofbeats, horses, zebras, & c. So, while the advice to take spiro when one has both PCOS-like symptoms and drug-resistant HTN is very sound, based on my own personal experience I would urge you to find a doctor who will focus on the hyperaldo first. Treating it may resolve the other symptoms. It's too soon after my adrenalectomy to say for sure if all of my symptoms have resolved - menstruation is still unpredictable as ever but the hair loss, unwanted hair growth, acne, symptoms of insulin resistance and abdominal fat have all almost vanished since the surgery. -msmith1928 Nulliparous female, 46, 5'3", 115 lbs, CT showed 1cm left adrenal nodule, AVS determined disease is unilateral, had left laparoscopic adrenalectomy on 10/13/2011. Low sodium, fructose- and grain-free diet due to hereditary fructose intolerance, lactose intolerance, gluten intolerance (probable celiac).

[Guest guest]

I was diagnosed with PCOS several years ago, as well.

Thanks, mssmith! You've renewed my strength to fight for a saline suppression

test.

Donna

--- Clarence Grim wrote:

THANKS MS. We need to start a PCOS stories file that was later Dxed as PA?

CE Grim MD

After seeing Phyllis' posts about PCOS, I figured I'd share my two-cents' worth

about the diagnosis of PCOS.

PCOS was my second misdiagnosis (anxiety, of course, like many of us, was my

first). My symptoms at the time were hypertension, insulin resistance, ovarian

cysts, excess fat around my middle (even though I wasn't especially overweight -

around 130 lbs at the time), adult-onset acne, dark hair growth on my chin and

above my lips, and my hair on my head was falling out in handfuls every time I

washed it. And irregular menstruation, although unlike most women with PCOS,

instead of amenorrhea my problem was polymenorrhea. <snip>

[Guest guest]

can's see your thumbnail to comment.CE Grim MD I was diagnosed with PCOS several years ago, as well. Thanks, mssmith! You've renewed my strength to fight for a saline suppression test. Donna --- Clarence Grim wrote: THANKS MS. We need to start a PCOS stories file that was later Dxed as PA? CE Grim MD After seeing Phyllis' posts about PCOS, I figured I'd share my two-cents' worth about the diagnosis of PCOS. PCOS was my second misdiagnosis (anxiety, of course, like many of us, was my first). My symptoms at the time were hypertension, insulin resistance, ovarian cysts, excess fat around my middle (even though I wasn't especially overweight - around 130 lbs at the time), adult-onset acne, dark hair growth on my chin and above my lips, and my hair on my head was falling out in handfuls every time I washed it. And irregular menstruation, although unlike most women with PCOS, instead of amenorrhea my problem was polymenorrhea. <snip>