Monday, May 25, 2009

PCOS??

I have had quite a few people suggest PCOS (Polycystic Ovarian Syndrome) to me. Let me start from the beignning here...

In October 2006 I was diagnosed with PCOS by my ob/gyn in Georgia. This is when all the baby making became serious. I was told to go on Metformin and that my cycles should regulate. His plan was for me to take Metformin for six months. If not pregnant, he would put me on Clomid for three cycles and only then would consider monitoring or anything. Instead of taking his word for it, I insisted on blood work before doing anything different. My Fasting Insulin came back in the high normal range. Like 12.7 I believe. I was told that they like to see it below 10. Also my LH to FSH ratio was 2 to 1 which does indicate PCOS. I had the ultrasound which revealed polycystic ovaries he said. *I had no clue what I was looking at as it was my first u/s...*

With this new information, I refused to go on Metformin and instead change my diet and see if I couldn't lower my Fasting Insulin number. I went on the South Beach Diet and had great success. I ended up loosing about 20 pounds. :-) Which to this day, has remained off!

I started seeing an acupuncturist in early 2008 (whom I LOVED!) and at the same time, switched to another ob/gyn in Georgia who specialized in Infertility. He did another u/s which said revealed PCOS. He too insisted I went on Metformin. I agreed, if my numbers were still high after having another blood test. This time, after being on the South Beach Diet for six weeks and only going for acu about two months, my Fasting Insulin was 3!!!!! I was SOOOO over the moon excited over this! He told me that this number was way too low to suggest Metformin and thus would proceed without it.

With him, I did one round of Femara and ovulated beautifully on CD 16 but unfortunately, no pregnancy resulted. It was then that we learned about the whole moving and stuff that we decided to not seek any additional treatments until after the move and settled. So we went back to naturally trying...

Here in Missouri I just blindly picked an ob/gyn and ended up loving him. He did another ultrasound and insisted that I did not have PCOS. I did not have the traditional "string of pearls" around my ovaries and thinks maybe I was having the ultrasounds done early in my cycle and thus they considered the developing follicules cysts and thus PCOS? He wanted me to go on Clomid un-monitored but I just did not have a good feeling about it... I wanted to be monitored (and looking back, I'm glad becuase well, I am overly sensitive!)

My current RE has performed many ultra sounds and after specificially asking him several times if they are poly cystic he has said no.

I just don't know. I know that PCOS is a rather vague diagnosis as there are so many symptoms and you only have to have like three to be considered PCOS. Since that is the case, I do have PCOS. I just do not have the "key" symptoms of Insulin Resistant or Diabetic nor the Polycystic ovaries...

Which is what leads me to asking about another hormonal imbalance... What other thoughts do you have???

6 comments:

Gil said...

Just a heads up... I am borderline PCOS and I was also found to be hypothyroid (according to the "new" numbers; TSH must be below 2.5 to get pregnant and maintain a pregnancy). I was being severely underdosed for PCOS and my hypothyroidism wasn't properly diagnosed. With both those things corrected, I lost a lot of weight, and then in November/December, our first IVF worked. So I advise getting a full blood workup done and researching enough to be your own advocate. I have had to correct doctors on numerous occasions about proper dosages for PCOS and hypothyroidism! And good luck!

Jodi said...

I'll be the 1st to admit, I'm no expert on PCOS, but from the little I've read, if they don't think you have PCOS, but you have had some s/s of it, then maybe it's an adrenal, pituitary, and/or thyroid dysfunction. Have you had a full work up of Prolactin, Testosterone, Aldosterone, DHEA, Cortisol, TSH, T4, and T3? You've had LH and FSH, so I'm assuming you had Estrogen and Progesterone levels? The nurse in me is very interested in all of this. I'll keep reading and keep you in mind if I come across anything else that might help.

Michele said...

Poly Cystic ovaries are a symptom of PCOS, but not a dead giveaway. There are many studies that discuss the many symptoms of PCOS. Our RE did my bloodwork and showed that I am not, at this point at least, insulin resistant, hence we didnt use metformin (which, she believes should not be prescribed just to try and induce ovulation, that rather it should be used for true medical issue). Here is a website that has Q and As about PCOS. http://www.womenshealth.gov/faq/polycystic-ovary-syndrome.cfm

Not everyone will share the same symptoms. Even if, by some miracle, my poly cystic ovaries cleared up, I'd still have PCOS. It's more than just that. That was just the first thing that the first doctors to discover it pointed to and the name stuck.

I'd suggest finding an RE or GYN who specializes in PCOS for a second opinion. They would be the doctors that would really be able to rule it out or point you in the right direction.

kate said...

What Michele said...

My doctor makes the diagnosis of PCOS based on one thing: hyper-androidism. She tests for it based on appearances or other self-reported symptoms, but basically, in her opinion, if you don't have high androgen levels, you don't have PCOS. Some doctors use the three symptom rule, but in my personal (ahem, totally unqualified!) research, it seems that there are several varieties of PCOS, encompassing many different combinations of symptoms.

It's my understanding as well that the indication to take metformin has nothing to do with glucose levels. Your levels can be totally completely normal, and you could still see a vast benefit from the drug. I don't know. I take it (and have taken it for the last three years) because it keeps me from having rupturing cysts. All tests that would indicate even a borderline diabetic issue are completely negative and always have been. With PCOS, metformin isn't used to regulate glucose issues, it's used to regulate hormone issues (which in turn can cause glucose issues, which is why so many women with PCOS have pre-diabetes and the like). I have always ovulated regularly (since I had the *blessing*, ahem, of having ovulation marked by severe cramping due to the cyst through which the egg was being released...), and I only get cysts one at a time (I do not have the characteristic "strand of pearls" either).

But, I did have excessive/unreasonable weight gain, ridiculous difficulty losing weight, high blood lipid levels, adult acne, and (the big one) high testosterone levels. This was enough for my doc to diagnose me with PCOS. Metformin has been a godsend for me, even though I am 100% not diabetic.

Anyhow, I guess in combination with what others are saying, you need to see an endocrinologist, or someone else who has more knowledge about PCOS. You need to have a full endocrine panel drawn, separately from the types of bloodwork panel a reproductive endocrinologist would do. I started treatment for PCOS long before I was TTC, because (unusually) my doctor actually seemed to understand that this was a lifestyle issue, not just a reproductive issue.

Yeah. That's all just my $ .02, though...

Sassy said...

You can have polycystic ovaries and not have PCOS and you can have PCOS and not have polycystic ovaries. Mine used to be bad, now my left ovary looks normal. Who know's why. But I still have PCOS.

And I can second Metformin having nothing to do with your insulin levels. Mine are on the high side of normal but Metformin has been a wonder drug for me, although I'm not taking it at the moment. My dietitian recommends it for anyone with any kind of PCOS symptom because for most people they will find their more complicated symptoms will diminish. It cleared up my skin, my dandruff and gave me more energy. Not everyone has the same reaction to it and you do need to find the dosage that works for you, but it can help.

G$ said...

I was diagnosed with PCOS almost solely based on my inverted LH/FSH ratio. Looking at your b/w above, I wonder if that's the same thing. I have been on Metformin for 3 years now and my bloodwork is normal.