Saturday, February 12, 2011

PCOS or not?!?!

On the medical front, I'm still ridiculously confused, I'm still pondering that million dollar question, do I really have PCOS? There are cases of PCOS that go undiagnosed for years because nobody runs the right tests. In my case, I've run all of them (sometimes in triplicate) and I'm still left scratching my head. This disease is COMPLICATED!!!

My San Diego RE( Dr. G) who first remarked that my ovaries looked polycystic, does not really think that I have PCOS. He thinks my ovaries look 'multi-cystic'. Translation- I have about a gzaliion follicles in each.

Courtesy of Google Images
My antral follicle count has consistently been in the 30s. My repeat AMH (because I never believe in just one test reading) was even higher, at 5.6 ng/ml.  You can look at these results from 2 different angles- from one angle I'm just blessed with a pretty abundant ovarian reserve, above average for age 30.  Look at it from another angle, and yeah, it looks like PCOS.

I've read some crazy complicated papers on how to diagnose PCOS.  There are 3 big players here-
  • The ovarian parameters (high AMH and follicles) ---- big check mark here
  • Ovulatory disturbances -----none. Ovulate beautifully, and in ridiculously reproducible patterns, every month.
  •  Hyperandrogenism (greek for too much male hormone):  3 things to check here- DHEAS/ DHEA, testosterone and physical characteristic of hirsutism. 2 out of 3 qualifies you, I think.
Overall, you have to have at least 2 out of these 3 (ovarian parameters, inability to ovulate and hyperandrogenism) to qualify for a PCOS diagnosis. I have the first and definitely don't have the second. And as far as the 3rd goes......that is where I'm in limbo, awaiting a decision.

About hyperandrogenism:
I don't have high testosterone. I've tested this 6 ways to Sunday- conclusion- my testosterone is at the lowest end of the normal range.
I DO have high DHEAS (over 200 in 2 seperate tests)
The tie breaker is......hirsuteness. That is the condition where you are hairy like a man.  I'm sure everybody has seen somebody suffering from a really bad case of it one time or the other and knows what I'm talking about.  I'm NOT like that, not by a long shot, so if you had asked me a year ago whether I was hirsute, it would have been an absolute no-brainer to say no.

However, I recently came across this way to 'score' if you are clinically hirsute. Its called the Ferriman-Gallway score and it looks at body hair patterns not just on the face, but all over your body.

A picture speaks a 1000 words, so go here to see what it is all about. 

The papers say that if you have a Ferriman-Gallway score above 6, you might be considered hirsute. If you are above 8, you most definitely ARE hirsute. I looked at my own body hair patterns and I was like gee, I might just be in the 6-8 range, or maybe even higher but its really hard to evaluate one's self. If this comes through then we can conclude, yes, I just may have PCOS.

But right now, I'm waiting to pick an insurance, and then just find a doctor who will help me determine if I qualify for hirsutism. I usually get rid of body hair on a very regular basis, now I'm forced to keep it till I see a doc. UGH.

Quite a few medical professionals (including Dr. G) have asked me: how does it matter even if I DO have the mildest form of PCOS in the world, since its clearly not affecting my ability to conceive??? Well, because even in its mildest form, it CAN potentially be deadly.  It can stick a foot out and hamper fertility in MANY different ways.  PCOS can not only interfere with your ability to conceive, but can mess things up well after conception- ridiculously complicated post on that will be written one day in the future.


  1. This was really helpful, thanks. I've always felt like I was the hairiest woman alive, which made me certain I had PCOS (along with mildly irregular cycles). But looking at that chart, I'm only about a 4. I suddenly feel better about myself!

  2. OMG YOU HAVE BACK HAIR!!!!!!! Just kidding ;-)

    That's a complicated and confusing diagnosis method. You know what? I say we all just pick our diagnoses and treatment path blindly from a grab bag of fun, and go with that. It'd probably be equally as accurate and effective.

  3. I have struggled with this question for a LONG TIME! While I don't ovulate on my own, I have none of the other markers for PCOS. When I asked my RE about it, she explained it in a way I had never heard of before. She said that at its core, PCOS is an ovulation disorder. Most people who don't ovulate have some form of PCOS. She said that if I ovulated, then she would not classify me as a PCOS patient. There's a research paper that she gave me to read on PCOS...I'll try to find a link for you. And basically this research stated that women who don't ovulate have PCOS and women who do ovulate (even while having other markers) probably don't have it.

    I wish you the best in your quest for answers!!!

  4. That is ignorant, or rather,very old school of your doctor. There is an entire class of PCOS patients now labeled 'ovulatory PCOS'- you can most definitely ovulate and still have PCOS, there is a very substantial body of literature backing this up now.

    Your reproductive system is supposed to run like a well oiled machine. If you have any disturbances, at any point, it could still cause problems even if you DO throw out an egg every month.

    You have to ask, is that egg good quality? Often PCOS can make for crappier eggs, even if you do regularly ovulate. The crappier quality could manifest in many ways but I think it just often results in embryos that just not very good quality and less likely to make it, they are less likely to implant, or less able to stay firmly attached.

    Another giant hurdle is pregnancy itself. PCOS, appears to stem from disturbances in sugar metabolism. Disturbances in sugar metabolism can wreak havoc in an ongoing pregnancy.

    Why do miscarriages happen?Why do still births happen? If a woman does not smoke, drink alcohol or do any of those things that increase the risks, why do these things happen???

    I'm convinced that in some, but not all the cases obviously, the root of the problem is the same that is causing some of the manifestations of PCOS.

    This is a very complicated and ill understood arena- I'm going to have to do an exhaustive literature search to properly address this topic, one day in the future.

    Sorry for getting on my soapbox, just wanted to say your doctor is way off base when he or she waves off somebody as NOT having PCOS just because they ovulate!

  5. That is an interesting finding. I thought I am hairier than most women. But never thought to link it with infertility. Note: my afc is always in the 18-22 range and my amh during the last test was 5.5. But according to the hirutism test, I would say I am only a 4 or a 5.
    I am amazed at your ability dig up information. All the best and hope the new doc can give you more answers.

  6. Have you had your male hormones checked?? If you have high testosterone, you automatically qualify for the hyperandrogenism criteria, no matter where the other 2 are at. Also, if you have the ovarian criteria and also have ovulatory issues (often characterized by high LH), you also qualify.

    Undiagnosed PCOS is a beast...people spend 1000s of dollars on IVF when in many of the cases their problems can be fixed, or rather, they can have a much better chance at fertility treatments if they are on simple, inexpensive fixes like metformin.

  7. Thanks for posting that, very interesting and informative. I'm also in the 6-8 category (I think) for hirsute.

    I really appreciate all the scientific stuff you post, especially since so much of it applies to me. I've been focusing on my MTHFR diagnosis, as that seems scarier and more worrisome to me than the PCOS. I really appreciate the chance to learn more about the cutting edge research on PCOS (and all the other scientific stuff you post about) through your blog.

  8. I also have abnormal PCOS. I have always ovulated and my hormones look good- no cysts but yes, AFC of 30+. But search from papers on the subtypes of PCOS. It's the newest research, since this is not something well understood until the past 10 years. I have what they call "Ovulatory PCOS" I found a whole paper on it. If you can't find it, let me know. Sounds like you fall in a similar category.

  9. I went looking for it, and instead found a really kickass, amazingly comprehensive Nature review on PCOS. If you don't have journal access and want to read it, let me know!

    Also, juts out of curiosity- anybody in your family have diabetes? I should take a poll on this one!

  10. Good, I really like putting this stuff out here! Honestly though, I'd say if you really do have PCOS, that could potentially present a bigger problem that the MTHFR, which is pretty darned confusing (atleast when you are just relying on the genetic testing). Do you have high homocysteine levels?

  11. I was diagnosed with PCOS after having the AMH blood test done. Nothing else indicates PCOS and even my ovaries don't have a large amount of follicles. It's quite frustrating that such a 'mild' case is having such a profound affect on us conceiving.

  12. Hi there Jay, just came back to respond to the comment you left on my TTC history. No, I do not have PCOS. I had this single cyst which was in complete clingy love with me. That recurrent beyotch was aspirated in 2008 and then it did not recur.

    I found your point on diabetes interesting though. Premature aging of the placenta - well, what the internetz tells me so far is that if the pregnant lady is still enjoying her cigarettes or is hypertensive, that could both be cotntributing factors. I was not hypertensive and I do not smoke at all, so both don't hold true for me.

  13. I'm very glad I found this blog. Thank you for the information.

    I'm 37 and currently trying to conceive. (I just had my second IUI.) Years ago I was diagnosed with PCOS, but the diagnosis was based only on hyperandrogenism. Multiple ultrasounds showed that my ovaries looked normal (ie. not polycystic) and I have very regular periods. That being said, I didn't always have regular periods. For many years I was extremely overweight, but once I lost a significant amount of weight, I started to have regular, normal periods. So...I think I'm a bit confused about whether or not I have PCOS. Maybe I'm just in denial and hoping that I don't really have it...

  14. Hi, my AMH blood test just came back as 5.6 as well. Since my Day 3 hormone levels are within the normal range my RE said that my AMH is simply just 'high', meaning I have a lot of follicles and to interpret this as good news. I do not have any other signs of PCOS and although the literature indicates that levels above 3.0 indicate the strong possibility of PCOS these studies have only been done on women with a history of pathology and not 'normal' women. I'm 35 and have been ttc for over a year now. I think the important thing (for me at least) is to focus on being healthy and trust that sooner or later I will conceive naturally and not try to find a diagnosis or something that is abnormal. I think when you're 'trying' to have a baby and it's not going the way you planned you want to find a medical reason why. Good luck and I hope that your 5.6 is just a sign that you have many years of fertility left!