And It's About Time There Was Some Support For Cushing's!
Hosted by Abigail Trafford
Washington Post Health Editor
Tuesday, January 18, 2 p.m. EST
Infertility. Excess hair. Unexplained weight gain. Doctors are linking these symptoms to a hormonal imbalance that has severe lifelong consequences. What do you need to know about this condition, polycystic ovarian syndrome?
Dr. E. Scott Sills, of Georgia Reproductive Specialists, LLC, joined us to discuss this condition on "Health Talk" with host Abigail Trafford.
Please read the transcript below.
Abigail Trafford: Hello everybody! Today in the Health section we featured an article on PCOS. Researchers are just beginning to understand this syndrome that includes such different symptoms as weight gain and facial hair along with infertility. Have you ever wondered about these symptoms? Send us your comments and questions.
Abigail Trafford: Hello Dr. Sills. Welcome to Health Talk. We've got a lot of questions about this strange syndrome. Tell us: what is PCOS - polycystic ovarian syndrome?
Dr. E. Scott Sills: Polycystic ovarian syndrome (PCOS) describes a convergence of chronic multisystem endocrine derangements, including irregular periods, hirsutism ("hairy-ness"), high lipid levels, high male hormone levels, cystic ovaries, insulin resistance and subfertility. It is the most common endocrine problem among women of reproductive age.
Abigail Trafford: How can you tell if you might have the syndrome? What are the main signs and symptoms? Do you have to have all the symptoms to be diagnosed with the syndrome?
Dr. E. Scott Sills: The diagnosis of PCOS can be elusive, and there is some disagreement even among clinicians as to how to define this problem. The term "syndrome" alerts us that a disease process is incompletely charaterised or poorly understood. At this center, we take a careful history and focused physical exam. Blood tests are usually performed to measure gonadotropins, (fasting) insulin and other selected hormones. The full constellation of symptoms & signs were detailed above; not all need be present to make the provisional diagnosis.
Abigail Trafford: What are the main treatments for PCOS?
Dr. E. Scott Sills: Classical therapies for PCOS have historically fallen into two categories: birth-control pills, or fertility drugs (clomiphene or "Clomid" being a favorite). The decision as to which of these to use was impacted by the patient's desire to conceive. As more research has shown the connection between insulin dysfunction and PCOS to be tight, the appropriateness of these two older treatment methods has been questioned--neither address insulin metabolism derangements. So, the time was right for a more effective strategy to be developed that did answer the underlying pathology. This sets the stage for current therapeutic advances for PCOS.
Washington, DC: I read the article this morning. It was like reading my own history; it made me cry to know I wasn't alone. I have every single symptom mentioned there -- except I'm not sure about the infertility aspect since I've never tried to have kids. My doctor has diagnosed me with "adrenal hyperplasia" and I have been on 5 mg. of prednisone daily for about 4 years. It has regulated the hair growth and my periods to some degree. But have I been misdiagnosed? Is "adrenal hyperplasia" related to PCOS? What should I do next? Who is the foremost doctor in this field?
Dr. E. Scott Sills: Dear Washington:
Congenital adrenal hyperplasia (CAH) can mimic PCOS, and it is critical that both conditions be evaluated in a thorough fashion. Dexamethasone suppression testing is a good method to screen for CAH, and the fasting insulin test is a suitable test for PCOS. Since you have been on steroids for some time, this will need to be carefully assessed since steroids will exacerbate insulin insensitivity.
Dr. Andrea Dunaif (Harvard) is a highly respected endocrinologist with considerable expertise in this field. Dr. Mark Perloe (Atlanta) has reported quite good results (both for those seeking pregnancy and for those desiring a return to normal cycling) using novel approaches for PCOS. There are many others, and the various PCOS support groups would be a good place to start. Also, the INCIID (International Council on Infertility Information Dissemination) group has an active PCOS "bulletin board" where many patients worldwide share thoughts about treatment (and their doctors).
Silver Spring, MD: After reading this morning's W. Post article, I started wondering if I might also have have PCOS, although infertility has not been a problem for me. I am 52, still menstruating regularly, very overweight, growing a beard, and have many, many skin tags. I am concerned about what the article had to say about the risks of diabetes and stroke, given that I am already at high risk with my obesity and familial history. I have not pursued this with my doctor as I have already been seeing him a lot for numbness in my right hand (diagnosed as arthritis in my spine), and blood clots in my lungs following a broken ankle. After writing all of this, it sounds like I'm in terrible health, but I work full-time and don't take much sick leave. Should I make a separate appointment to see him about these relatively-minor concerns of mine, or just keep looking after the more major ones?
Dr. E. Scott Sills: Dear Silver Spring, Maryland:
You have indeed reported a number of the flagship symptoms of PCOS, and I think it would be beneficial to explore the extent of the condition with some basic testing. You are right about the manifold health benefits accruing to women whose PCOS is effectively treated--independent of reproductive health. The lifetime risk of diabetes, coronary vascular disease, hypertension, and death are certainly higher in the untreated PCOS population and that's more than enough reason to seek treatment.
Appleton, Wisconsin: I have been diagnosed with PCOS and my husband and I are currently undergoing fertility treatment. We tried the chlomid and it did not work. I have not ovulated yet and now we are doing chlomide and fertinex combination. I am also taking metformin until I ovulate. Can you tell me what the risks are of this process and the success rates? WE are feeling quite frustrated. Can you give us any information?
Abigail Trafford: In treating infertility in women with PCOS, how important is it to do other treatments besides infertility drugs--such as taking anti diabetes medication and following the low-carb diet? Can you do all of this at once?
Dr. E. Scott Sills: Dear Appleton:
The problem of subfertility and PCOS is profound. It may be that clomiphene failures in the setting of PCOS occur because the underlying defect (hyperinsulinemia) remains largely untreated with this regimen. Gysler (1984) reported some 80% of all conceptions associated with ovulation induction via clomiphene will have occurred by the 3rd ovulatory cycle; continued therapy with this agent yields very limited increases in the cumulative pregnancy rate.
This means that, as fertility subspecialists, we need to be comfortable recognizing clomiphene treatment failure and identifying those patients who would benefit from a different treatment strategy. Careful, individualized consultation must guide those decisions on a case-by-case basis.
Sterling, Virginia: I have known for years that I have polycystic ovaries- I was on birth control for all of my high school and college years to make me have periods. I stopped taking birth control over a year ago as my husband and I wanted to give my body about a year to get back to "normal" before we tried to conceive. From November of 98 to May of 99 I did not have a cycle. In May I had a miscarriage and found out that I had been about 14 weeks pregnant. I had no idea! Since I was in a foreign country when the miscarriage occurred, and did not seek medical treatment until I was able to get back to the US, -about 36 hours after the start of the miscarriage- the doctors were not able to tell me why I miscarried. Are there any connections with PCOS and miscarriages? Also, in July my doctor had me try Glucophage. I tried it for three months, but never had a cycle. -In fact, I haven't had once since I miscarried in May.- I was frustrated and gave up taking it- Is there any reason I should try taking it again? ...And, to the Washington Post... Thank you! My mother called me at 7:30 am to make sure I read the health section today. I too gained weight uncontrollably- At one point I was 99 pounds overweight. By eating high fiber, low fat foods, I have been able to drop 35 pounds since the end of September! I finally feel like I am not the only one out there who feels like this!
Abigail Trafford: Dr. Sills, what is the connection if any between PCOS and miscarriage? And what is Glucophage?
Dr. E. Scott Sills: Dear Sterling, VA:
For many years, there was a link suspected between PCOS and pregnancy loss. As more data became available, the relationship became clear. Miscarriages do happen more frequently with PCOS compared to age-matched non-PCOS controls (Liddell et al, 1997). The challenge then becomes, what is causing this, and what can be done about it?
These form the basis of numerous clinical studies here and elsewhere, aimed at reducing early pregnancy wasteage. Our preliminary data among our first 20 PCOS women enrolled last February, all 20 conceived but the miscarriage rate was 4x higher in the heavier group (BMI>32) with elevated fasting insulin levels (Fertil Steril 1999;72 Suppl 1:S187-8).
Westfield, NJ: What treatment protocols are being researched and what is currently available for PCOS?
Dr. E. Scott Sills: Dear Westfield:
The PCOS Support group and INCIID Internet pages maintain an informal registry on active clinical research protocols dealing with PCOS. Patient education forums are fundamental in helping raise awareness of the condition, and our center has developed a structured, formal on-line questionnaire evaluating PCOS.
As more patients become pro-active about this critical womens health issue, quality of care should also increase as clinicians also enhance our familiarity with this syndrome.
Princeton, MN: I have read a lot lately about how following a low carb diet can help to minimize some of the effects of PCOS because it helps deal with the insulin issue, which may be the cause of PCOS. I am wondering first off if this is true and if so, is it really wise to follow some sort of ketogenic plan and if so, will this help with fertility or does it aid more in areas such as hair growth, weight, etc? I have about 250 pounds I would like to lose and don't know if this is the best way, as conventional low fat plans have not been a big help to me thus far. I have seen 4 different doctors for my PCOS and each has their own theory. Thanks in advance for your help.
Abigail Trafford: What about the special diet recommended for people with PCOS? Should it be supervised by a specialist in this syndrome? Any danger in just going on the diet if you are not diagnosed with PCOS but have a couple of symptoms?
Dr. E. Scott Sills: Dear Princeton, MN:
It was good to get your note; I feel that you have identified one of the 2 secret weapons against PCOS: diet & exercise. I require all my PCOS patients to seek a formal consult with a dietician as an integral component of their therapy. This is done after the patient has compiled a 7-day "dietary inventory", which she then shares w/ the dietician during the consult. This allows the nutritional consultant an opportunity to tailor a diet plan, without the need to resort to commercial diet schemes. Also, a structured exercise plan should be employed since even minimal exercise is useful in the battle against insulin resistance. Attention to these 2 concepts will augment whatever medicine the doctor prescribes to reduce insulin, and may mean that one doesn't have to take the medicine forever.
Arlington, VA: I'm 48 and have had some of the symptoms of PCOS for the past 2 years. Hormones have not regulated my periods and results of a D&C looked normal. Is PCOS a possibility for someone my age?
Dr. E. Scott Sills: Dear Arlington:
The signs and symptoms of PCOS are certainly not confined to the reproductive years. Even women with no ovaries (i.e., post-hysterectomy) may manifest many of the endocrine abnormalities associated with PCOS. If one remembers that the underlying problem in PCOS is likely that of insulin derangement, then it is easy to see why the ovaries are merely secondary players. Ovaries become important when they misbehave, as they govern the menstrual cycle and they are quite sensitive to the effects of tonically elevated insulin. Men certainly can suffer from insulin insensitivity, too.
A good (brief) review of PCOS is offered at http://www.ivf.com/pcostreat.html, and this introductory lecture should provide a good grounding on the current understanding of PCOS pathophysiology.
Abigail Trafford: Dr. Sills thank you very much. We have so many more questions that we are going to schedule another health talk on this subject on Friday at 2 p.m. Join us then and we'll discuss this syndrome in greater length. Thanks for all your comments and questions. Keep them coming! Until Friday, January 21, at 2 p.m.
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