I want to share what I learned with those of you who were unable to attend, so I thought I would put my notes from the conference online. These are all paraphrases and my own interpretations of the lectures. All rights of the material presented here are to the authors of the presentations. These are only fragmented notes, and I take full responsibility for any errors in these summaries. Soon you will be able to order the full transcripts from the PCOSA.
Pregnancy and Breastfeeding Issues in PCOS, Alicia Huntley, CNM
Challenges of a PCOS Pregnancy
Fertility and infertility aside, PCOS represents challenges with pregnancy. Physical issues, such as weight, blood pressure, risk of reproductive loss, and insulin resistance, present issues that must be addressed when PCOS women are trying to and become pregnant. Huntley's advice is to become as health as you can before getting pregnant. You do not have to lose weight, but establish good cardiovascular health and take 800 mcg of folic acid. Folic acid is good for cardiovascular fitness in women and babies and helps lower risks of certain birth defects. Get high blood pressure under control before getting pregnant and monitor it throughout the pregnancy.
Natural Progesterone
Natural progesterone, often given to women with PCOS because of low progesterone levels in early pregnancy, might prevent miscarriages and is extremely safe during pregnancy. Synthetic progesterones are dangerous and can cause serious problems for the fetus.
Insulin Resistance and Gestational Diabetes
Pregnancy in everyone is normally an insulin resistant state. In PCOS women it is even more so. All PCOS women should be tested for gestational diabetes at 16 weeks and then again at 28 weeks. The general test for gestational diabetes is a one hour GTT. If that test is positive, then a three hour GTT is recommended.
Birth Defects and PCOS
Not all PCOS pregnancy should be classified as high risk, despite the fact that there is a higher rate of complications (such as C-sections with PCOS). Many of the problems with PCOS and pregnancy occur on the microscopic level. There have been no birth defects directly associated with women who have PCOS, but out of control diabetes and hemoglobin problems can cause major complications. High circulating androgen levels during pregnancy can be teratogenic.
Lactation Issues
Stein and Leventhal, way back in the 1930s, noticed that women with PCOS had trouble with lactation. There breasts were often abnormally developed. After the second or third pregnancy, though, breast became more mature, and the mothers were able to breast feed their children. In general, breast changes during the course of pregnancy, such as breast pain, leaking, changes in breast size, and others, indicate a good possibility for sufficient milk production. For more information about breastfeeding, see Lisa Mirasco's work and the valuable contributions made by Dr. Thomas Hale.
Overactive Milk Ejection Response
Babies will drown in their mother's milk, and they will refuse to feed because there is too much milk there. It is less understood and no one knows if there is any definite connection to it and PCOS. What we do know is that high levels of estrogen suppress breast milk.
Herbs and Supplements in Treating PCOS, Dr. Shahab Minassian
Dr. Minassian began his presentation by telling the audience that herbs and supplements can be damaging to the process of ovulation, so they should be used with care. He covered four basic cultural disciplines in his search for herbs and supplements and their benefits to PCOS: Chinese, Japanese, American/European, and Ayurveda.
Chinese Herbs
Don Quai (Angelica sinensis)--purposed use is the regulation of hormonal control and rhythm of the menstrual cycle. The possible risk is toxicity, because Don Quai is a carcinogenic substance. It may have an estrogenic effect. He warns against using it while you are ttc, because of possible birth defects.
Siberian Ginseng (Panax Ginseng)--acts on the brain to promote regulation of reproductive hormones. The possible risks are sleeplessness, nervousness, and estrogenic effect. Women with PCOS generally do not need more estrogen.
Sarei-to--thought to restore ovulation in women with PCOS (based on a Japanese study). There are no known risks of using Sarei-to.
Kidney-yin replenishing--believed to restore ovulation in women with PCOS. There are no western studies to support this finding. Kidney-yin replenishing has no known side effects.
Japanese Herbs
Shakuyaku-Kanzo-to--thought to restore ovulation in women with PCOS. It has not been studied enough.
American/European/Western
Chaste tree bery (Vitex Agnus-Castus)--thought to have a progestin effect and stimulates LH. This herb is the most promising for treating PCOS. It is has been shown to stimulate ovulation, regulate menses, and increase LH levels. It might be harmful for PCOS patients, as well, because women with PCOS already have raised levels of LH. It depends on when you take it in your cycle. It is also a way to support pregnancy, because the LH surge can help prevent miscarriages. The only risks are GI discomfort.
Red clover--believed to have an estrogen effect. There are no known side effects of red clover.
Licorice (Glycyrrhiza glabra)--very useful reproductive aid, because it has an estrogen effect. It is contraindicated during pregnancy, and can cause many problems for the developing fetus.
Wild yam (Dioscorea villosa)--does have a progestin effect. It acts like progesterone. The human body, however, lacks the enzymes necessary to metabolize and use Wild Yam. Once processed, the benefits in Wild Yam become useless. There are no known side effects or risk to using Wild Yam.
Ayurveda
Shatavari root--said to restore fertility. It is used to promote ovulation.
Supplements
The safety of the following supplement during pregnancy have not yet fully been researched. Do not use them while you are pregnant.
d-chiro inositol--an insulin-lower treatment. Some researchers feel that women with PCOS are deficient in this substance that occurs naturally in the body. Insmed is working on a version to be released around 2005.
chromium picolinate--might reverse insulin resistance. There was some talk among the women who attended that the GTF formula might cause genetic mutations. More needs to be done on this.
vanadium--might reverse insulin resistance.
L-carnitine, taurine, and L-arginine--amino acids which might reverse insulin resistance.
Words of Caution
- check the credibility of sources for any claims about using herbs and supplements to treat specific problems
- estrogen/progestin/LH effects may work against fertility processes
- check for the quality of the herbs and supplements you purchase
- herbs and supplements may someday be found to work as an adjunct to lifestyle modification and medical therapy, or on its own
PCOTeen: Teens Only, Parents Only, Dr. Kevin Kelly and Heather Lubinsky
Lubinsky took the young women to a separate room to talk about PCOS and Dr. Kelly stayed with the caregivers of the young women with PCOS. Most of the break-out session was spent talking about how the parents are dealing with their teens, especially depression. Much attention was paid to sleep disorders and anxiety. Also, Dr. Kelly talked about the disastrous effects of fatigue. Some of the young women were using Zoloft as a treatment for depression and found that it brought on periods. Also, someone suggested that Prozac might have an effect on insulin levels. Many of the parents lamented the loss of the child that they used to know and that PCOS is a the core of what it means to be a woman, because of how it alters the body. Glucophage XR, reported on audience member, does nothing for weight loss. 1500 mg of metformin is standard therapeutic dose. Anything lower does not work.
The Importance of Movement, Diane Harmon and Julie Cade
Movement, including yoga, is important for many reasons:
- age prevention
- straight training
- guards against bone loss
- cardivasuclar health
- may help with depression
Within two years of menopause, women lose 30% of their bone density. Within 12 months after a hip breakage, many women die. By the mid-30s to late 40s flexibility needed. Building muscle mass is necessary for converting fat to muscle. Yoga is good for keeping circulation going in the limbs, and is good to increase elasticity during pregnancy. Nasal breathing triggers relaxation.
Understanding the Genetics of PCOS, Dr. Margarit Urbanek
Environment can play a crucial role in whether the gene is expressed or not. Two sister can share the same disease trait, but not manifest the disease if their lifestyles are different.
What does it mean if a gene has been identified? Early-lifestyle and medical intervention can help prevent or decrease the severity of PCOS.
The CYPlla gene might be linked to PCOS.
Insulin gene VNTR--strong evidence for linkage to PCOS.
follistatin--strong evidence for linkage; no evidence for association.
Insulin resistance gene--modest evidence for linkage and association.
Insulin receptor gene--no common mutations in PCOS patients. Increasing evidence for this gene.
More likely, PCOS will not have one gene associated with it, but it will have many genes associated with it and its manifestations.
Medical Primer: A Guide to Interpreting Mecial Lectures, Christina Gray DeZarn
The founder of PCOSA talked about the definitions, diagnosis, and other elements commonly talked about concerning PCOS.
There are many different definitions for PCOS.
PCOS Treatment is a complicated story:
- there is a disagreement on criteria for diagnosis
- there is a diversity of symptoms
- lack of consensus on protocol for treatment
- drug treatments are off-label
- lack of data on lifestyle factors
See www.patientsguide.com and www.tabers.com for great resources for medical definitions.