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Old 10-09-2007, 09:11 AM   #1
sweetsunshine72
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Default FAQ's - Newcomers come here first!

So, What Is This Thing Called PCOS, Anyway?

While there is a bit of discussion about it, for most of us, PCOS is a hormonal imbalance caused by Insulin Resistance (IR). IR can be tricky to diagnose, as the blood work can be read as "normal" while there is still an issue in the "background", so to speak. IR can be diagnosed from symptoms alone, such as excessive hunger (especially when you feel that you "shouldn't" be hungry), dizziness, headache, nausea, irritability, mood swings, the "shakes", exhaustion, especially if you skip a meal. Also, if you look at your neck where it meets your body, and notice that the skin is thicker, creased, and perhaps looks "dirty" even after having a shower, it is highly likely that you do, in fact, have IR.

Other women seem to have a thyroid issue as the main factor for their PCOS. There are also "thin cysters" who do not have a weight issue, but still can benefit from IR treatment.

The other things to keep in mind about PCOS are that it is not "just a fertility issue". It is a whole-body endocrine imbalance that can cause an increased risk of heart disease, diabetes, and certain "female" cancers. This is why it is important to make sure you treat the PCOS beyond just symptoms control such as Birth Control Pills (BCP). Also, if you do not have a menstrual cycle (absence of AF or Aunt Flow), make sure that you get one induced at least every 3 months to reduce your risk of endometrial, uterine, or cervical cancers.


What Is Insulin Resistance (IR)?

Insulin Resistance (IR) occurs when the body's cells do not use insulin effectively. Insulin is the "key" that allows glucose from the blood to enter cells to be used for energy. Think of Insulin Resistance like a slow-running drain - the insulin does get through, it just takes longer to do so, and in the meantime, the body produces more because it thinks that you need more. This over-production can cause Reactive Hypoglycemia (low blood-sugar) in some people, and can eventually wear out the pancreas, leading to Adult Onset Diabetes. In the meantime, as insulin is a hormone, it affects the other hormones in the body, including the sex-hormones, which cause many of the PCOS symptoms such as high testosterone levels (responsible for acne/bacne, hair loss and facial/body hair to name some). IR also causes the body to become very efficient at storing glucose as fat, which leads to the excess body fat which many of us suffer from, as well as the inability to lose weight.

For those who like to know the details: With IR, you produce more insulin than you need. This insulin is not taken up by the cells, so "floats" around in your body. The extra insulin affects your hormone levels directly, but also makes it harder for your folicles to burst allowing ovulation. These folicles become ovarian cysts, and as there is then no corpus luteum (what the folicle becomes after ovulation) to produce progesterone, there is nothing to trigger a proper bleed to shed the endometrium lining. You may still get something resembling a period, as the lining can get thick enough that it can't support itself, and chunks can fall off, but it doesn't clear out properly.

The good news is that if you better manage the IR, you reduce the amount of insulin in your system, and things start to go back to normal. This is one reason why Metformin can work so well for some people.


I've Heard That Women With PCOS Aren't Able To Have Children. Is This True?

While it is true that untreated PCOS is a leading cause of infertility, once it is properly treated, many women go on to become pregnant. In fact, many women find that using Metformin, an insulin re-sensitizing medication, may be enough to stabilize their PCOS symptoms and can return their fertility quite suddenly! Other women require further levels of medication and intervention, but the main thing to keep in mind is that there IS hope!!! Also, if you are not planning to become pregnant currently, keep in mind that you will still need to practice a reliable method of birth control.

You can also track your fertility by tracking your Basal Body Temperature (BBT), Cervical Mucus (CM) and other fertility signs. www.fertilityfriend.com is a great resource, and can also chart it for you online.


So, What Now? What Can I Do?

Firstly, get a thorough check-up from your doctor, that includes hormone levels, cholesterol levels, thyroid, and see if your doctor will do a 2 or 3 hour Glucose Tolerance Test. You should also make sure they take a Fasting Insulin level and Sex Hormone Binding Globulin. These tests are necessary because with PCOS, you have a much higher risk of developing heart disease, bad cholesterol levels, and diabetes. The GTT can also (but not always) reveal Insulin Resistance, the most common cause of PCOS. Quite often, you will have an elevated insulin level, which is a better indicator of IR. Usually, you will also find a lower level of SHBG, which affects how much the testosterone will affect you.

You should start on a low-er/good carb diet with 3 main meals and 2 - 3 healthy snacks/day. Focus on high-fibre, low-starch veggies and protein. You should also get lots of good exercise!!! If you haven't exercised for quite some time, start where you are now, and increase a little more each day. Even walking will do wonders, and will "get the juices flowing"!!!

A good supplement schedule should include Chromium (good for insulin/blood sugar issues), Fish Oil (Omega3, and good for cholesterol, metabolism, heart health, mood swings, heart rate, and overall brain function), and a good multi-vitamin/mineral.

You should also look into taking an insulin re-sensitizer such as Metformin/Glucophage and/or Cinnamon (herbal alternative). Base levels that seem to work for those of us with PCOS are 1,500 - 2,000 mg/day for the Met, and 500 - 1,000 mg/day for the Cinnamon. With both of them, you will want to work your way up to those doses, and allow your body to gradually adjust.

An Endocrinologist (endo) or Reproductive Endocrinologist (RE) are more likely to know and understand PCOS, but as there is a definate issue with finding a doctor who has thorough knowledge of PCOS, ANY doctor who takes you seriously, and is at least willing to do the research is more than worth his (her) weight in gold!!!


So, How Do I Lose Weight And Change My Lifestyle?

There are many ways to make lifestyle changes, but there are some key elements you need to include.

1) You need to limit highly processed, sugars and starchy carbs. Change the carbs that you do eat to a healthier, higher-fiber version - so brown bread, brown rice, whole wheat pasta, etc. Also, try to pair a protein with your carbs - it helps to even out your blood sugar.

2) You NEED to include exercise of some kind. Ideally, it's a combination of both cardio and muscle-building, but as IR is based in the muscle cells, working the muscles helps to improve insulin sensitivity.

3) Take it one step at a time. Don't try to change everything overnight. Take baby steps, and tackle one thing at a time.

4) Track your progress. This means more than just the scales, as your body is made up of muscle (which weighs more than fat), water, fat, and all the other "stuff" (organs, bones, cartiledge, etc.). Learn how to take your measurements, and chart that as well as weight. Celebrate when you go down a size. Keep maybe only one pair of "fat pants" so you have something to compare to - and get rid of the rest!!! Sell them, burn them, give them away - just get rid of them!!!

www.sparkpeople.com has come up with a really good system put together by dieticians, doctors, fitness professionals, etc., and it's naturally geared towards preventing and controlling IR and Diabetes. It also has nutrition and fitness trackers, recipes and recipe calculators, and TONS of info and it's 100% FREE!!!!!!

When you sign up for Sparkpeople, you start out with what your current stats are, and then put in what you want your goals to be. They will go as far as setting up a daily menu/fitness routine for you, or you can do it independently and enter all your info in the nutrition/fitness logs yourself. It really is a great tool for seeing and understanding the way that nutrtion and fitness interact!!!

The Insulite System is also available. They take all of the same elements, but put it together for you in one package, including your supplements. This is a program that is a little bit more specific in treating IR and PCOS. It can get a little pricy, but it is a good system. You can check out their system at pcos.insulitelabs.com, or from the main page of the PCOSA website.


But I Don't Have All The Symptoms!!! Do I Still Have PCOS?

As PCOS is a syndrome, you can have some, all, or only a few of the many symptoms. Classically, it is diagnosed by having 2 out of the following:

1) a history of PCOS, Insulin Resistance, Diabetes or Hypoglycemia in your family, or having these issues yourself.

2) blood work which shows certain hormonal imbalances such as a reversed LH:FSH ratio or elevated testosterone levels.

3) "PCOS-type" symptoms such as: weight gain (especially around the middle) and inability to lose weight, acne/bacne, irregular/absent AF, hair loss, body/facial hair, skin tags, dark skin patches (may look "dirty"), mood swings, lack of energy, elevated cholesterol levels, and also ovarian cysts. By the way, in spite of it's name, not all PCOS women have ovarian cysts.


I Can't/Won't Take Metformin. What Else Can I Do?

While Metformin is the most common insulin resensitizer, there are other options out there. Certainly, if the intestinal side effects (nausea, diarrhea, etc.) are too intense to realistically deal with, you can try the extended version. That helps many women. Always take with a meal, and be aware that eating starchy/sugary/fatty foods tend to make the side effects worse. Lettuce seems to be a bad idea, too, for some reason. Also, there is Cinnamon (an herbal alternative) which, while they are only just beginning to do studies about it, shows some strong promise in terms of treating Insulin Resistance! It has also been successfully used for thousands of years in Traditional Chinese Medicine to treat endocrine issues. Avandia is another medication that will improve insulin sensitivity. It can be used by itself, or in combination with Metformin or Cinnamon. Actose has just come on the market as a Metformin replacement that has fewer side effects. And don't knock the effects of diet and exercise!!!


I Want To Try Cinnamon. What Do I Get, And How Do I Take It?

The Cinnamon you get is powdered Cinnamon bark, like what you buy at the grocery store. The variety is called Caissia Cinnamon. Some people prefer capsules, as it is easier to measure and you don't have to have Cinnamon with everything. If you do get capsules, be sure that it is the powdered bark, or at the very least, a water-soluble product. You want to be careful NOT to use Cinnamon Oil, as it is difficult to process and flush from your body, and it does not have the insulin-sensitizing effect. If you are using regular Cinnamon from the store, a teaspoon is about equivalent to 500 mg. You can take it sprinkled on cereal, in tea, on desserts, mixed in applesauce, and so on. While previously, dosages were recommended up to 4,500 mg/day, due to the discovery of Cumarin (a powerful blood thinner) in Cassia Cinnamon, we no longer recommend this. Now, dosages of 500 - 1,000 mg/day are recommended. It may take a little longer to be effective, but some studies show that a lesser dosage can be just as effective long-term. This also reduces the need to gradually work up to your dosage.

Cinnamon can bring your blood sugar down when first getting used to it, so if at any time you get hypoglycemic symptoms (the "shakes", dizziness, headache, nausea/hunger, confusion, the sweats, irritability), treat it with a sweet drink followed by a healthy snack that is high in fibre and protein. You may need to either reduce your dosage for a week, or adjust your eating/exercise routine to better adjust to it.

Remember to take your Cinnamon with an adequate amount of liquid, as you can get "Cinnamon burps". Some women have even burped up a cloud of Cinnamon!!! While funny, it can burn, so it's a good idea to avoid it!


I'm Interested In Herbal Remedies. What Can I Take?

One important thing to keep in mind is that HERBAL REMEDIES ARE MEDICATIONS, TOO!!! Not all of them are safe to self-medicate with, and not all of them are OK to use while TTC. Some things are fairly simple to use and have few side-effects, such as Cinnamon which is designated as "Generally Considered To Be Safe", while others can be harmful if too much is taken, or if combined with other medications. Always run your supplements list through your doc, and if you can see a licensed Naturopath or herbalist, please do so before taking something new. Also, beware of adds which promise a "miracle cure" or "instant fertility". Many of them are "snake oil", and are not based on science or true herbal knowledge. It's definitely "Buyer Beware" out there!!!

This has recently been reinforced with the discovery of Cumarin (a powerful blood thinner) in Cassia Cinnamon, something that could have caused serious issues in some people. Always get your herbals checked out and approved by someone with appropriate knowledge (NOT the lady at the health-food store!!).


Is There A "Quick List" Of Meds And What They're For?

Things Taken To Control Blood Sugar/IR
Metformin - a medication that reduces IR and directs the liver to not produce as much glycogen.
Cinnamon - an herbal medication used to improve IR. Also has a pseudo-insulin effect and can lower blood sugar suddenly if not used to current dosage.
Chromium - a mineral used to improve IR. Chromium can also lower blood sugar when first taking it.
Alpha Lipoic Acid - very promising supplement to aid in reducing IR.

Others
Fish Oil - heart health, mood, IR, & cholesterol
B-Complex - energy and to combat anemia occasionally caused by metformin
Pre Natal - taken by those Trying To Conceive (TTC) because of the extra folic acid. Can also contain a multivitamin/mineral
Multivitamin/mineral - to fill in nutritional gaps

Fertility Drugs
Clomid - used to induce folicle maturation and growth. Can cause thining of uterine lining with prolonged use
Femara - used to induce folicle maturation and growth. Does not cause thining of uterine lining. Has shorter half-life than Clomid.
Gonal F - injection of Folicle Stimulating Hormone used to induce folicle maturation and growth
(Trigger Shot) - injection used to trigger ovulation

Hormonal Controls
Yaz, Yasmin - are birth control (BC) with aniti androgens
Spiro (Spironolactone) - is an anti-androgen that requires you be on BC
Provera/Prometrium - Progesterone supplements used to trigger a proper bleed. Prometrium is natural, so it can also be used to help support an early pregnancy.


I Want To Research And Get More Information On PCOS. Do You Know Of Some Good Resources?

Books:
- The Savvy Women's Guide to PCOS by Dr. Elizabeth Vliet
- Fertility for Dummies
- New Glucose Revolution Guide to Living Well with PCOS
- The PCOS Diet Book: How You Can Use the Nutritional Approach to Deal with Polycystic Ovary Syndrome
- A Patient's Guide to PCOS, Understanding and Reversing Polycystic Ovary Syndrome by Walter Futterweit
- PCOS: The Hidden Epidemic, by Samuel Thatcher
- PCOS: A Woman's Guide to Dealing with PCOS, by Colette Harris, Dr. Adam Carey

Websites:
- www.pcosupport.org
- www.fertilityfriend.com
- www.tcoyf.com
- www.inciid.org/faq.php?cat=infertility101&id=2
- http://www.nichd.nih.gov/news/releas...l_diabetes.cfm
- www.sparkpeople.com
- www.pcos.insulitelabs.com
- http://www.aace.com/pub/pdf/guidelin...nstatement.pdf
(Position Statement by the American Association of Clinical Endocrinologists)
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Old 10-06-2008, 01:20 AM   #2
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Smile Thanks!!!

As a newly diagnosed pcos girl I am so thrilled to see that there are other women out there with the same issues as me. I will be running to Borders and learning as much about pcos as I can. Thanks again!! PCOS girl in York, PA
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Old 11-02-2008, 11:39 AM   #3
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Default very usefull

Greetings.

Thanks for this intro post for us newbies.. its very helpfull
i couldnt find much on the net about pcos in depth..

ill be sure to share it with others.
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Old 01-12-2009, 04:11 AM   #4
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my skin, where my neck meet the body doesnt look dirty. Is that another myth?

I thought cinnamon was that stuff on top of doughnuts, oppps lucky for me i hate doughnuts or i could have been in some trouble
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Old 01-17-2009, 12:08 AM   #5
DoubleWamie325
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Thumbs up Thanks..

I want to say thanks for writing this for new comers.. I have been doing research for 2 years now on pcos, since many doctors I have went to, Won't help with giving much info about pcos & treatments & such..

Even Though, I have been doing research, I still learn New Symptoms Or Treatments & so on about this overwhelming diease..

Thanks again,
Stacey

P.S.

Is their a section on this site where I can ask general questions about pcos or recent problems I maybe having with pcos?
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Old 01-17-2009, 03:43 AM   #6
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yeah general discussion =)
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Old 05-23-2009, 07:29 PM   #7
Carla L. Jordan
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Default Carla

Thank you for this information. My diagnosis happened because I became so anemic that I went into congestive heart failure, which filled my lower lungs with fluid. My hemoglobin #'s bottomed out--and I ended up in critical care at the hosp. needing a blood transfusion. I'm 47, and was diagnosed with anovulatory bleeding when I was 27--well, it was most likely PCOS. I also have MS (diagnosed 15 years ago) but it is almost always in remission. I work more than full time, and have a busy life--but am SO relieved that I don't just have to "put up with" these symptoms anymore. I'm not having probs. with the Metformin, and I'm also on a prescribed hormone. I'm going to implement the herbal remedies suggested here after I run them by my doc--who is VERY supportive, listens, and probably saved my life...I'm not one to like to take "pills" but I want to prevent diabetes (if possible) because so far that has not surfaced.
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Old 05-26-2009, 05:55 PM   #8
stacyp96
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Default Thank You

Thank you for all the information for newbies! It was very helpful. I am new to the website, but not to PCOS. I was dx in 2006 by my ob gyn who didn't really say much about it....he didn't make it sound like it was a big deal, and I guess I was too naive to check into it more.....until after three months on clomid with him, we finally went to an RE who confirmed the dx. In March of 07, we started treatments with the RE. In June 07 I had my first (and only IUI) and got pregnant!! My son is now 15 months old. While I was pregnant, I fell off the nutrition band wagon, due to being scolded by the RE nurse for not having enough carbs....I think that this resulted in my preeclampsia at the end of my pregnancy.

I just turned 35 last week and would like to add to the family. I just found out that the health insurance we now have does not have ANY fertility benefits. So, I am kind of stumped at what I should do.

I am really watching my food intake/nutrition, taking a few supplements and the Dr. has me on Prometrium since January.

I am looking for more direction on Natural Supplements and Nutrition.

If anyone can shed any light, please do so!!
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Old 05-26-2009, 10:39 PM   #9
sweetsunshine72
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If you're looking to go beyond the basics listed in the FAQ's, then a really great website is www.womentowomen.com. They have a lot of free information about supplements, diet, and other ways to achieve hormonal health. They also offer a pretty paid good program, too. I've always found their information to be reliable, and they offer so much info for free, that I've never felt like they were trying to "sell" me, either.

Take care, and HTH!!
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Old 06-02-2009, 11:37 AM   #10
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Default curious...

thanks for all the info! I'm definitely going to start on the supplements. This might be a silly question: but Metformin can only be prescribed by a doctor correct? I'm on a silly HMO and have been working on getting to my PCP so that I can get to an Endo but I'm not even able to meet with the PCP till august so want to start something in the process and was hoping that perhaps I could get Metformin without going to the doctor...so an answer would be great, thanks! I was a product of being diagnosed by a Ob/Gyn who basically just said vaguely, "lose weight and call me when you want to start having babies". So, researched some more and realized that I need an Endo...which makes sense since as a little girl I was treated for years by an Endo for Precocious Puberty.
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