sdecorla

Hi everyone,

I was diagnosed with PCOS in 2007, based on having very long cycles (50-90 days) my whole life and an elevated LH/FSH ratio. I have no other symptoms. I’ve always been thin, and I seem to be the only person on this message board who never had any trouble getting pregnant. Both of my kids were surprises. The first was conceived before I was diagnosed.

I was told the cause of PCOS is insulin resistance, which is often caused by being overweight. Or maybe being overweight causes you to be insulin resistant – I’m not sure which it is. I’ve been struggling to understand how I can have PCOS since I’ve never been overweight, or even close to overweight. However, metformin has been making my cycles shorter. It just didn’t make sense to me. While googling around once, I found this very informative pdf: http://www.jarrettfertility.com/PCOS%20patient%20handout.pdf

I thought this part was interesting:

Quote:

For heavier women, PCOS occurs because of the excess production of male hormone, which results in the abnormal androgen/estrogen ratio. Thin women don’t really have excess androgen production. Instead, they typically have normal androgen levels. However, at one point in time their estrogen levels were low. (Estrogen comes from two places – the ovaries and the fat cell.) In young, thin athletic women with very low percent body fat, estrogen levels are low. The end result of this is that the androgen/estrogen ratio is altered just like that in the heavier women (the androgen level is normal but he estrogen level is low). The absolute levels are lower in the thin women, but the ratio is still altered.

So it sounds like in thin women with PCOS, it’s actually caused by being too thin. Being thin causes low estrogen levels, which causes an imbalanced estrogen/androgen ratio, which causes PCOS. In heavier women it’s because androgen levels are high, and in thin women it’s because estrogen levels are low. In both cases, the ratio is imbalanced.

This part helped explain how metformin works in thin women:

Quote:

Dr. Baillargeon was the first to demonstrate that glucophage was of value in treating thin women with PCOS. 90% of her patients ovulated after treatment with glucophage. Thin women must be cautioned about weight loss with glucophage, as this is not the goal in this group. As noted earlier, we know that glucophage works in this group because of the increase in the activity of aromatase, with the resulting increase in estrogens and decrease in androgens – in other words, correction of the androgen/estrogen ratio … Glucophage does improve insulin sensitivity in this group as well, but this does not appear to be the primary mechanism of action.

So in thin women, metformin works not by increasing insulin sensitivity per se, since that’s not the main problem in thin women, but by fixing the estrogen/androgen ratio. I’m not much of a science person but I think I understand now.

The only thing that’s still a mystery to me is why I was thin enough to cause this problem. I was never athletic and never exercised all that much. I’ve also always had a big appetite and I’ve always eaten a lot. I’ve never dieted or tried to lose weight in my life. I’ve never had an eating disorder. Yet I’ve always been on the thin side. When I was 10 or 11 I was slightly underweight for my height. As a teenager and adult I’ve always been on the low end of the normal range. I know being hyperthyroid can cause a fast metabolism, but I’ve never had an abnormal thyroid test, and I have no other hyperthyroid symptoms.

Are there any other thin cysters like this? I’m just wondering if there’s an even more fundamental problem, like a thyroid or pituitary problem, that caused me to be really thin which in turn caused the PCOS.


I am 29 years old, 5'7'' and 127 pounds. My BMI is 19 or 20. So I'm not underweight, just on the low end of normal, and I've always been that way despite always eating a lot and not being particularly athethic.

RDeems

It sounds to me like you may have been possibly misdiagnosed. A PCOS diagnosis usually requires more than just long cycles and elevated FSH levels, or at least it should. Did you have an internal ultrasound that showed your ovaries to be polycystic? That is a huge part of the diagnosis. Do you have acne, abnormal facial or body hair, thinning hair on your head? I'm just playing devils advocate, but you may need to see another doctor for a second opinion.

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Stacie M

I just want to point out that ovarian cysts play no real role in diagnosis. Some women with PCOS never have ovarian cysts and that is quite common.

PCOS should be a diagnosis of exclusion. There is no one test that can diagnosis. When someone has abnormal cycles and hormone disturbances a full work up should be done. A doctor should rule out all possible issues (including adrenal gland issues as these mimic PCOS). If no cause can be find, it is generally PCOS.

PCOS is a syndrome, so basically a collection of symptoms. You can have one or all and still have PCOS.

Even in thin cysters, PCOS is thought to be rooted in insulin resistance. Many thin cysters have a family history of diabetes (just as heavy cysters do).

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RDeems

I was told by both my regular OB and my RE that the ultrasound is one key tool in diagnosing PCOS, so yes they do play a role and in my case, a HUGE role! In fact, I was told that my ovaries are "perfectly polycystic" and this was the key that led to my diagnosis. Everyone is different. All I am saying is that a second opinion is probably a good idea since this thin cyster does not have many "typical" PCOS signs.

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Stacie M

I don't disagree that she should seek additional opinions and testing. I am just saying that polycystic ovaries are not required for a diagnosis. Women with polycystic ovaries may not have PCOS, and women with PCOS may not have polycystic ovaries. Cystic ovaries are just one of the symptoms possible with PCOS. Just like all cysters don't have hair loss, all cysters don't have ovarian cysts.

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RDeems

I never said required, but for some people it is a huge sign, as it was in my case. I don't have the weight issue, IR, hair loss, or many other "typical" signs- the polycystic ovaries were my dead giveaway.

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sdecorla

I did not have an ultrasound done, so I don't know if I have polycystic ovaries. I don't have any of the other symptoms either. I've actually thought myself that I may have been misdiagnosed, but at the same time the metformin seems to be working. And I don't know what else it could possibly be. The doctors ruled out everything else that causes long cycles. I've had my thyroid tested about a million times and it's always normal.

Is there anything else that causes a lopsided LH:FSH ratio?

Amby1

RDeems. Did you hear this from on base military medical care provider? Be careful most aren't licensed. It took 3 years to get diagnosis from the chop/shop. It took 2 Lincenced Dr.s off base to call on base and rip ace. We call it the chop shop for a reason. If you have Tri-west or tri-south and look under PCM on website. You can get an off base PCM as long as PCM is registered on Tri-west and Tri-south (most medical enlisted/ don't know the rules). They'll try to fight you and give BS because they need people to experiment. Again thier clueless. Both my kids go off base and we have tri-care prime. I would too but since we're moving..

Amby1

You probably have PCOS. I'm glade the medication is working. If you ever gain weight, you make get acne and hair. That's what happened to me. I'm back in the green 129 for 5'3 weight loss hasn't taking ALL away the acne and still GOT hair. (I have the medication but won't take it until my blood work is done.)

mnstrpc

It's really just so different for everyone.

I am thin, but not skinny, normally 5'5" and between 128-130lbs. I do work out. However, I did have slightly elevated androgen levels, slightly hypothyroid (note, not hyperthyroid!) and polycystic ovaries. My cycles were wonky since they started at 13, and I did have trouble conceiving until diagnosed though finally had success with the first IUI. I don't have hair loss, nor excess hair really (a few on the chin to pluck), nor severe acne (a little in my early 20's, but nothing that couldn't be treated with Clearasil).

I've never been tested for IR but I actually think there's a pretty good chance that I am insulin resistant, as I have also struggled with hypoglycemia my whole life, and have some fairly significant family history of diabetes.

Possibly one of the most frustrating things about PCOS, and probably what makes it a "syndrome" as opposed to a disease, is the variation in presentation of symptoms between women. My RE told me that about 80% of the women he treated for PCOS were overweight; but about 20% were not. 20% is not an insignificant number.