Understanding PCOS

November 22, 2005 - Tuesday
1:37 PM to 2:37 PM (EST)
Guest Speakers: Karen Elkind-Hirsch, M.Sc., PhD., HCLD, Reproductive Medicine Associates of New Jersey

Categories
Donor Egg • Fertility • Infertility • PCOS

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gigi	How are you diagnosed with PCOS?
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Lisa_Rosenthal	Good evening everyone!
Lisa_Rosenthal	Thanks for joining us this evening...
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Hunshine	Hi Lisa
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Lisa_Rosenthal	Hi Hunshine...
Lisa_Rosenthal	Dr. Elkind-Hirsch will be here in a moment or two.
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Dr._Karen_Elkind-Hirsch	Type here hello
Hunshine	Hello Dr. Elkind-Hirsch
moondreams	Hello Dr. Elkind-Hirsch. I was wondering if there are any inherent problems in using an egg donor who has PCOS? Is PCOS hereditary?
Lisa_Rosenthal	Dr. Elkind-Hirsch has sent me information that I will be posting now and through out the session, I will let you know when it is her information....
Lisa_Rosenthal	Definition and Clinical Presentation Polycystic ovary syndrome (PCOS) has been a prevalent diagnosis assigned to infertility patients with hormonal imbalances for over 60 years. Despite increasing recognition that PCOS puts women at increased risk of hypertension, cardiovascular disease, stroke, and type 2 diabetes, physicians of many specialties-family practitioners, internists, endocrinologists, dermatologists, and gynecologists-routinely fail to diagnose or misdiagnose this syndrome. PCOS, estimated to affect 4% to 12% of reproductive-age women, is considered among the most underdiagnosed syndromes and the most common cause of infertility in this population.
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wannababy	Hi LIsa and doctor
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Lisa_Rosenthal	Welcome wannababy and praxis, thanks for joining us this evening!
praxis0	thanks for having us
Dr._Karen_Elkind-Hirsch	Dear moondreams- excellent questions. First of all one problem with women with PCOS is while they make a large volume of eggs, the egg quality can be poor and fertilization rates are generally lower. We generally don't recommend a women with PCOS to be a donor. In response to your second question, yes it appears to be a genetic trait although we don't know the exact inheritance pattern or genes involved.
wannababy	Is there some really, really definitive way that PCOS can be diagnosed???
Lisa_Rosenthal	Praxis, how did you hear about tonight's online session?
praxis0	my sister has had feritlity problems and let me know about your online session
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Dr._Karen_Elkind-Hirsch	dear wannababy- when you are asking about diagnosed -do you mean the syndrome or thpolycystic ovaries themselves?
praxis0	My question is more about PCOS and breastfeeding problems. Do you have any info on that?
wannababy	the syndrome
Hunshine	My Dr thinks I may have PCOS as I display several symptoms. She is sending me for bloodwork tomorrow. My ? is, what bloodwork tests do they do and can this really diagnose PCOS?
summerv	hi Dr. Elkind-Hirsch, I've heard tha in the treatment of PCOSt bcps lead to weight gain, while metformin has the opposite effect. Is this medically sound?
Dr._Karen_Elkind-Hirsch	dear wannababby - the current definition of PCOS is actually by exclusion- meaning you have either elevated androgens, pco ovaries and/or irregular menses. However, you need to rule out that it isn't your thyroid or pituitary or adrenals that are causing the problem.
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Dr._Karen_Elkind-Hirsch	dear praxis- I have never heard about difficulty breastfeeding associated with PCOS.
Lisa_Rosenthal	From Dr. Elkind-Hirsch:Polycystic ovary disease, originally known as Stein-Leventhal syndrome, was first described in 1935 as a clinical triad of hirsutism, amenorrhea, and obesity in women with enlarged bilateral polycystic ovaries and thickened ovarian cortices. Over time and with the advent of new technologies, other defining abnormalities have been attributed to this disorder, making the term "polycystic ovary syndrome" a more accurate description. However, exactly which criteria should be used to define PCOS is still being debated. The PCO syndrome represents a range of clinical presentations and current diagnostic criteria for PCOS are now defined in line within a broad concept req
dree	something I have had a hard time wrapping my head around - I'm currently 5'7'' and 188 lbs (down from 202 since starting metformin in July). My dr and most of what I've read say - ''lose weight!!!'' - but I had symptoms when I was 18 and 130 lbs. Since I don't expect I will ever get near that weight, why should I think that losing weight will solve the problem (I understand that it's more complicated than that, but the message is a bit frustrating). Can you comment a bit on the pathophysiology of PCOS in that regard?
Dr._Karen_Elkind-Hirsch	dear hunshine- one of the key hormonal abnormalities associated with PCOS is elevated male hormone levels, specifically tesosterone. The other blood tests that are generally run are LH, FSH, prolactin and TSH (thyroid stimulating hormone). In addition, they may see if your insulin levels are elevated as well.
praxis0	I have been lucky enough to get pregnant twice and have had breastfeeding issues both times. The first child I never had enough milk but with the second child I did have more than enough for the first two weeks and then I had a hormone surge (hot flashes, acne on the back and neck, etc) and my milk supply decreased. (I would weigh my son and then feed and wiegh again.) I was diagnosed with too much free testosterone prior to getting pregnant wtih my first child and wonder if there is any relationship. Is there any research of can I participate for other women?
Orly	OK, I realize that this may seem petty. BUT. I have to shave my face every day! Isn't there anything I can do about this?
Dr._Karen_Elkind-Hirsch	dear summerv- the data on the use of oral contraceptives for treatment of PCOS vs, metformin are very confusing. OCs are used to normalize the endometrium (lining of your uterus) which can become very thick due to not having normal cycles and can put you at risk for endometrial cancer. The older high dose pills increased insulin resistance (which was already elevated in many women with PCOS) and that was a problem. Metformin which is a anti-diabetes drug leading to improved carbohydrate metabolism usually results in weight loss. Whether this is drug-related or due to some of the adverse side effects of metformin (nausea, anorexia, diarrhea) remains to be determined.
abk143	Is a diagnosis of PCOS plausible without having an elevated testosterone level? My doctor says that I have PCOS, but my hormone levels did not show any elevation in testosterone. Also, I have been experinecing scalp hair loss for about 4 years now, and am wondering if this is related to PCOS?
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summerv	when treating PCOS, does it make a difference if the woman gets her period occasionally, or has never gotten it at all?
Dr._Karen_Elkind-Hirsch	dear dree- excellent observation. The disorder of PCOS usually presents in adolescence and is associated with insulin resistance. While when it first presents, your weight may have been very low, as you went through puberty and beyond, the insulin resistance and concommitant hyperinsulinemia makes it more difficult to keep from gaining weight. Unfortunately obesity (or even being overweight) exacerbates the problem of PCOS. Metformin helps you be more sensitive to your own insulin and not have to produce as much. Losing weight does the same thing. So while weight loss won't cure the disorder, it will control it better. I hope that helps.
moondreams	Thank you so much Dr for your feedback. It seems unwise to use an egg donor who has PCOS. Do you have any good reading material to refer me to on the studies done in this area? It sounds like genetically it's a new area of research. Are they working on studies to determine the number of females who get this, born to mothers with PCOS?
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Lisa_Rosenthal	Weight loss Weight loss is one of the simplest and most cost-effective approaches for improving insulin abnormalities and endocrine function. Weight reduction can improve insulin sensitivity, decrease circulating androgens, and increase sex-hormone binding globulin, leading to improved ovulation in women with PCOS. Although it is reasonable to recommend a weight-reducing diet and exercise as first-line therapy for all obese women with PCOS, obese women with PCOS find it unusually difficult to lose weight. When fertility is an issue, these patients do not wish to delay conception for even a brief period to lose weight. Moreover, for the 10% to 30% of women with PCOS who are lean, weig
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Dr._Karen_Elkind-Hirsch	dear praxis- I have not heard many patients describe the phenomenon of elevated tesosterone interering with milk production. The hot flashes I am not surprised about since breastfeeding leads to increased prolactin production and decreased estrogen- in fact, many women who breastfeed need to use a vaginal lubricant or vaginal estrogen because of the decreased estrogen production. I unfortunately don't know anyone doing research on the subject of PCOS and breastfeeding. but the PCOSSupport (I'm not sure if that is how it is listed) has a listing of all ongoing PCOS studies.
praxis0	Is there a web sight to check because I'm not sure how that is listed.
praxis0	Also, do you know anything about the use of the herb saw plametto for hairloss?
praxis0	oops-palmetto
amb	Dr. Elkind-Hirsch: My doctor says I don't have PCOS, but I am obese, insulin resistant, my cycles are 32-42 days, I've had 2 miscarriages, and have not been able to get pregnant in the last year. Could I have PCOS, even if I don't fit the technical definition?
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dree	hmm. that's not good!
Lisa_Rosenthal	Oops, I have a feeling that Dr. Hirsch got thrown out of the room, she should be back in just a moment or two....
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abk143	Is she coming back?
Lisa_Rosenthal	Yes, she will be back soon!!!
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Lisa_Rosenthal	Everyone needs to realize that Dr. Hirsch has rejoined us...
Lisa_Rosenthal	She is not able to see anything that was previously posted, so please repost your questions....
hope9702	Type here: If I get a period does that mean I have ovulated?
amb	Dr. Elkind-Hirsch: My doctor says I don't have PCOS, but I am obese, insulin resistant, my cycles are 32-42 days (even before I was heavy they were irregular like this), I've had 2 miscarriages, and have not been able to get pregnant in the last year. Could I have PCOS, even if I don't fit the technical definition?
Dr._Karen_Elkind-Hirsch	dear hope9702- unfortunately not always. It is not unusual for women with PCOS to occasionally ovulate but tmenstrual bleeding may just be from a drop in estrogen levels that causes your endometrium (uterine lining) be sloughed off..
abk143	I was diagnosed with PCOS but I do not have an elevated testosterone level... is this possible? Also, I have been experiencing scalp hair loss. Is this related to PCOS?
praxis0	I also wanted to know how to access that PCOSS for reasearch and also if you have heard anything about using saw aplmetto for hair loss.
Dr._Karen_Elkind-Hirsch	amb-actually you do fit the current definitions- you have irrregular cycles and insulin resistance and obesity. Any clinical signs of androgen excess or has anyone done an ultrasound of your ovaries to see if they wer polycystic looking- unfortunately if they looking when you were having a cycle it might look like they were OK that cycle
Dr._Karen_Elkind-Hirsch	dear abk143- sorry- I actually responded to your question when I got disconnected. What we call "male-pattern baldness or hair loss" is a clinical sign of elevated testosterone although it may not be measurable with a blood test. Generalized hair loss is due to other factors such as stree or thyroid dysfunction.
Hunshine	Dr Elkind-Hirsch is there anything that we can do for the hirsutism?
Dr._Karen_Elkind-Hirsch	dear praxis- you get the award for the most difficult questions! I do recommend going on the ASRM website (American society of reproductive medicine) and they have links to the PCOS support groups. I am not familar with what saw aplmetto is..sorry.
amb	I have had dozens of ultrasounds, pre and post ovulation, and no indication of PCO. No hirsutism, and no acne until very recently. I have also put on 20 lbs in the last 6 months after being the same weight for 7 years before that.
praxis0	Thanks so much for trying and good luck to everyone!!
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abk143	My doctor put me on the birth control pill to help control PCOS, but sometimes I would not even get my period while on the pill. Why would my body not be reacting to the hormones in the pill, and is this something to worry about?
Hunshine	We lost the Dr again
Lisa_Rosenthal	Hopefully, Dr. Hirsch will be able to log back on for the last 10 minutes of our session.
hope9702	I was diagnosed with PCOS. I have the classic string of pearls, periods 32-68 day but I am thin (5'7", 120lbs). I have had the blodd work done, FSH and LH are off, testosterone elevated slightly depending on who you ask. Blood sugar is also normal. My question is would I benefit from Metformin?
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Lisa_Rosenthal	Where did you all hear about tonight's session?
Hunshine	I got an email
dree	i got an email from AFA
Lisa_Rosenthal	And did you know that The American Fertility Association has a wonderful, active, physician moderated message board devoted to PCOS?
moondreams	I also got an email from AFA.
Lisa_Rosenthal	I have information from Dr. HIrsch which I will be posting on the message board, probably tomorrow.
Lisa_Rosenthal	I love when our email system works!!
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amb	Do any of the other participants suffer from depression and/or believe that depression is related to PCOS?
Hunshine	Well I'm gonna scoot - hagn all
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Dr._Karen_Elkind-Hirsch	Sorry I got disconnected- I was trying to answer the question
Lisa_Rosenthal	Please repost questions for Dr. Hirsch as she is unable to see anything that was posted before right now.
Lisa_Rosenthal	Remember, also, that we will have the transcripts from tonight's session on The AFA website by next Monday.
hope9702	Type here I was diagnosed with PCOS. I have the string of pearls, irregular periods, but I am thin(5'7", 120lbs). Blood sugar tests came back mormal, testosterone a bit high depending on who you ask. Would I benefit from Metformin?
Lisa_Rosenthal	Dr. Hirsch will be with us for just a few more minutes.
amb	Dr. E-H: I had responded to your question. I've had lots of pre and post ovulation ultrasounds, no sign of PCO. No hirsutism, no acne until recently. Recently gained 20 lbs. after being same weight for 7 years prior.
Lisa_Rosenthal	Thank you so much Dr. Elkind-Hirsch for sharing all this knowledge this evening. I hope you will join us again sometime.
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Dr._Karen_Elkind-Hirsch	hope9702- that is a controversial question. First of all, while your blood sugar is normal (which it is with many women with PCOS), you still may be insulin resistant. Recent studies show that thin patients with PCOS actually benefit more from metformin than very obese women. Since we can't lower your possible "insulin resistance" with weight loss, metformin might reduce your testosterone levls and regulate your cycles if they are not currently regular.
Lisa_Rosenthal	Thanks to all of you tonight for such interesting questions. Dr. Elkind-Hirsch, what is the last bit of advice you would like to give for someone struggling with PCOS symptoms and is also having trouble conceiving?
Dr._Karen_Elkind-Hirsch	I think that the more we learn about the "metabolic" component of PCOS that normalize the insulin environment before trying to conceive would not only make conception easier but be safer for mom and baby.
Lisa_Rosenthal	Thank you to Dr. Elkind-Hirsch for her knowledge, advice and compassion this evening!
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Lisa_Rosenthal	And thanks to the rest of you for your great questions. Please be sure to check The AFA website for the next scheduled online session. We have them once a week...
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Lisa_Rosenthal	Dr. Hirsch wants me to say good-night for her, she's having a hard time getting back on again!!
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Understanding PCOS

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