posted 05-17-2002 07:51 PM       

Brief Summary of my story:
1. Diagnosed with PCOS over 20 years ago--Now 37 yrs old.
2. Read this breakthrough journal article entitled:
Ovulatory and metabolic effects of D-chiro-inositol in the polycystic ovary syndrome.
N Engl J Med. 1999 Apr 29;340(17):1314-20
3. Started supplementing with foods containing d-chiro inositol or pinitol.
4. Have had regular ovulatory periods for 18 months.
5. Hope that others get the help they need.

Also, I'm attached to this post about my favorite patents http://www.soulcysters.com/ubb/Forum5/HTML/000961.html that will link you to more evidence about the effects of pinitol on blood sugar metabolism.

There is a blip in my 18-month track record. The second or third week of March 2002, I ran out of carob syrup and didn't feel like eating the soy lecithin and didn't want the carbs in farinetta. I instituted Atkins induction level dieting. I went four weeks on Atkins induction level (including ketosis every day) and during this time I did not ovulate on my normal day 21 or so. I felt OK, my skin had never been clearer and more beautifully textured, but I only lost 2 lbs which I know was water. I started chomping on the soy lecithin again and ovulated within several days (BBT charting). I kept it up with the soy lecithin until I received my carob syrup which I now take at a dose of 2-3 T./day.

My overall health has never been better ever in my life. I believe that the metabolic issues of PCOS surfaced well before puberty as I was an overweight child. I remember being tired, having headaches, being moody, and never having the energy as any of my peers even as a small child. I have only had one 2-3 day cold that didn't amount to any interruption of my activities in 18 months. My once routine headaches have virtually dissapeared. My emotional health is wonderful. I believe the way I think is different for the better. I sleep well and mostly have an even store of energy throughout the day. My muscles which were weak and spongy even in high school are firm. My laboratory values all improved.

In the link above about patents, I posted all the common foods that I have documentation about their d-chiro inositol or pinitol content. Also, there are commercial products that contain pinitol which another cyster posted about. In some cases, I don't have exact values, only ranges. In one case (buckwheat) I have conflicting information. I finally have preliminary evidence that soy lecithin actually does contain d-chiro inositol or pinitol--Yeah!!!!!! What I'm working on now is a chart that will list each item and will compare the amounts of d-chiro inositol and pinitol per amount of food (how much of the food do you have to consume to obtain a certain amount of d-chiro inositol or pinitol), the costs, and reference information all in one place. Maybe I can get some web pages to post it for easy access. It will take my a while to get it in good shape but please look forward to it.

The journal article I mentioned above is a MUST read!! Read it twice. I will e mail it to anyone as an 99kb attachment to be read in Adobe Acrobat.

Good luck and take care,

jgv
February 2002
Hello all,

In answer to some of the questions posted previously:

Soy lecithin and inositol capsules are not the same.

Inositol and d-chiro inositol are not the same--I have heard of women who used plain inositol and found it to be somewhat effective. I don't have any info about that.

I do not know anything about herbs or how soy lecithin would be used with herbs.

At this point in my learning, I do not know how much d-chiro inositol (DCI) or related compounds are in soy lecithin. If you check my original post from 10/2001, I say that I don't know whether it has any DCI in it or not after learning that the original information I used that lead me to start consuming it was determined to be a list of the myo-inositol (plain inositol) in foods (Maybe that means that capsules would work for some people? Who knows!).

How much DCI is in buckwheat?--Below is some information from my records that contradict each other. One says you would need to eat about 2 pounds of buckwheat farinetta (even more of the other buckwheat products), one says 1/2 cup of farinetta (and this has been effective for some). I think the answer lies in the idea that there is a group of compounds of which d-chiro inositol is a member, and that DCI can be derived from other members of the group, such as d-pinitol.

At http://www.mancan.mb.ca/bukwheat.html they provide the following data:
Recent research has shown that buckwheat contains chiro-inositol and other galactosyl derivatives of chiro-inositol. Ortmeyer et al (1993) showed that treatment of type II diabetics with D-chiro-inositol may be effective in lowering the symptoms of diabetes. While several laboratories are working to develop sources of D-chiro-inositol, buckwheat manufactures it naturally.
(Approximate levels of D-chiro-inositol in buckwheat products: Fancy flour: 14.5 mg per 100 grams, Farinetta: 84.9 mg per 100 grams, grits/groats: 23.3 mg per 100 grams, Supreme flour: 34.1 mg per 100 grams.)

I think the above site is only measuring free DCI and not related compounds that may be effective, too.

Dr. Christopher William's book "The Fastest Way To Get Pregnant Naturally" which highlights the use of farinetta to help PCOS sufferers. (In it he says to take a 1/2 cup) It sold for $13 at amazon.com. This doctor is also doing research on D-chiro-inositol with several others.

This guy is one of the premier experts on where DCI is found in buckwheat and other foods.
Prof. Ralph Obendorf at Cornell who wrote "Buckwheat is a good source of fagopyritols (galactosyl derivatives of D-chiro-inositol). The richest sources of fagopyritols are buckwheat bran (farinetta) (2.5-2.7%) and whole groats (kasha) of buckwheat (0.4-0.7%)."

If you can wade through this technical material, the following link will take you to the patent that spells out how much DCI is in buckwheat. I guess the question that still stands is exactly what compounds besides DCI are therapeutic? Here is a couple of snips that were interesting: http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO2&Sect2=HITOFF&p=1&u=/netahtml/search-bool.html&r=1&f=G&l=50&co1=AND&d=ft00&s1=''6,162,795''.WKU.&OS=PN/ 795"
When the fagopyritols or compositions are administered orally, suitable daily dosages can be based on suitable doses of free D-chiro-inositol, such as those described in U.S. Pat. No. 5,124,360 to Larner et al., which is hereby incorporated by reference. It is believed that about half of the fagopyritols as extracted is D-chiro-inositol, mostly as bound D-chiro-inositol with small amounts of free D-chiro-inositol. Therefore, suitable doses of fagopyritol are about twice the suitable doses of D-chiro-inositol. Typically, for oral administration, suitable daily doses are from about 50 mg to about 200 mg of the fagopyritol or composition per kilogram of the subject's body weight.

As indicated above, it is believed that the fagopyritols are digested in the digestive tract by bacteria to release free D-chiro-inositol for uptake.

It is published that soy meal (not soy lecithin) is 1% of DCI-like compounds. I think it's important to realize that this information is very new, very obscure in public information, and is very hush-hush for those poised to make lots of money off the whole deal.

Personally, I am working with the carob now because it's the easiest for me right now and has the best documentation regarding how much effective substance is in it. I also eat buckwheat products made from farinetta. My advice would be to pick something, do some research, and then document how you feel and whether it works for you. In the medical journal article that broke open this whole nut (NEJM April 1999), 80%+ plus of the women ovulated within 6 weeks. If you start consuming something and you don't observe successful hormonal changes in 4-6 weeks, move on to the next self-experiment.

I guess since I've posted twice lately on this subject, I might as well make it a personal update. Most of my story was posted in October 2001 at http://www.soulcysters.com/ubb/Forum5/HTML/000412.html. About that time, I felt that I had better information on buckwheat farinetta rather than soy lecithin. I started trying out the buckwheat and have had buckwheat since then. Sometimes I make the muffins with soy lecithin in them-yuck-because I think soy lecithin has value as a food item for other reasons. I would like to continue to accumulate information on the appropriate foods and how much DCI and related compounds they contain so that I may rotate the items through my diet instead of eating the same food every day.

I continue to exercise but am not a fanatic. I get to the club about 3-4 times/week. I try to low carb but have not done a good job at it since the holidays.

Lots of subtle changes have happened to me in the year since I have been doing these lifestyle changes. My body shape has changed. The excess 10 lbs shifted to my butt, legs and lower belly and I lost all excess fat on my rib cage/waist. I have had ovulatory periods every 33-38 days since I started these changes in Nov 2000. My moods are stable. I've only been sick with a cold once in over a year.

As for changes that can be documented with numbers. My free testosterone level has dropped by 1/2. My total testosterone level remains high normal. My cholesterol numbers which were never a problem got even better with a high HDL and low triglycerides.

I expect to see continuing positive, subtle shifts in the months/years to come.

Good luck,

jgv

February 2002
In general, I believe in limiting carbs, especially from grains (whole or not) and even fruit in addition to the traditional junk food items. I have tried varying my carbs as low as Atkins induction level and have done considerable "cheating" due to my love of good food and interest in cooking. I have 10-20 lbs of excess fat that won't budge unless I eat very few carbs (like 20-30g)--and even then it's very slow. In additon to my self treatment of PCOS with specific consumable items, I have taken an overall interest in my health and have made lots of changes to my lifestyle. And like everyone else, what I believe and what I actually accomplish vary. I believe, in order of importance for me, has been: consuming foods high in d-chiro inositol (or what I thought was high--this area is under revision)--very clearly the most important for me, weight training, limiting carbs and changing my diet--getting rid of junk--I go through substantial effort to obtain and prepare real food--see http://www.westonaprice.org/splash_2.htm, supplements--I take things recommended for insulin resistance issues, and finally general lifestyle issues--rest, skilled relaxation, etc.

At this point, my body is very sensitive, and I can feel when food is good for me or junky, and I know that I will always feel like junky carbs are bad for me--even while I am putting them in my mouth. I will never go back to the pasta, rice, and bread as staples. I limit fruit and starchy veggies. I try to remember that I am not cutting out a food group --the macronutrient is "carbs", and green veggies are the best carb for you and I eat them freely. The food group "grains" is an invention of food processors.

I always have a "low carb" book in reading progress as a reminder and support in this issue. I very much like Protein Power and Life Without Bread and the Shwarzbein Principle. Like all things, you need to determine what "works" for you and what you are willing to do.

Congrats on your weight loss! That is really an accomplishment.

jgv

Sent: Thursday, October 11, 2001 9:46 AM
Subject: Soy Lecithin, D-Chiro Inositol, Every once in a while I put my story out here..

Hello, I am a long time subscriber and avid student of all info I can get on PCOS. Here is a shortened version of my story. I leave out the frustrations, mood swings, painful adolescent experiences because I have been dealing with this for over 20 years, because it would fill a small book with whine, and because it's not pertinent to the facts. I do mention it because I want you to know that I have suffered but not dwell on it in this post.

Symptoms started at age 12 (age 36 now)--especially facial hair and somewhat overweight. My period started at 14 and never became regular. I think I had one abnormal period and didn't have another for years? Diagnosed at age 17 and was told I would have difficulty becoming pregnant and thats all. Between 14 and 24, I probably had 5-10 periods. I only had one instance where I had a period 30 days apart and one or two periods 60 days apart. Usually long stretches (1+ years) without a period only relieved by the use of provera. After more than 1 year without a period, I went to yet another new Dr. to tell her my story and get my Provera and she told me I was pregnant. That pregnancy is my 11 yr old.

The facial and body hair has been a driving negative factor in my self esteem and my life. During these years, I was poo-poo'ed by any and every doctor because I achieved pregnancy. I have never received conventional treatment besides BC pills. I always tried to forget about PCOS and didn't talk about it.

I finally went off BC pills 18 months ago. I felt better immediately but noticed the start of my symptoms worsening (especialy my long-time measure of my syndrome-facial and body hair). After about 6 months off the pill, a very severe and unusual set of symptoms (think panic attack that lasts for one month straight) led me to start researching my health and especially PCOS. I noted that I had my head in the sand regarding the overall "disease" for the 10+ years that I had been a functioning adult and that I had never had a Dr. that considered PCOS a "problem" unless you were trying to get pregnant. I started researching/reading everything regarding PCOS (at least 1000 hours over the last year).

The breakthrough for me was reading this journal article: Ovulatory and metabolic effects of D-chiro-inositol in the polycystic ovary syndrome. N Engl J Med. 1999 Apr 29;340(17):1314-20. This journal article supports the new "breakthrough" drug that everyone is talking about. It is a drug that helps insulin work better. It is not available as a "drug" yet and probably not until 2005.

Now, heres the tricky part: I did web research and found that some foods were (supposedly) naturally high in d-chiro inositol. One of them was soy lecithin. I started supplementing with soy lecithin granules one year ago (about 30 grams or 4 Tablespoons per day) and within 3 weeks I had a period and have had monthly (about 33-38 days) ovulatory periods ever since. I have had documented decreases in testosterone-down 38%, beneficial changes in cholesterol, and beneficial changes observed in the areas of mood and overall well-being, excess hair growth, distribution of fat (I've lost abdominal fat and gained hip fat). After about 6+ months into the routine, I learned that the person who researched the foods high in d chirol inositol really did the research on foods high in plain "inositol"--she pulled the list of foods off the net. I decided to do the research for myself and find out what foods were documented to have d-chiro inositol and if so, how much.

Here's what I've learned so far: I can only document that d chiro inositol is found in buckwheat and the leaves of legumes. I believe it is found in legumes. I've learned that the people who KNOW where d chiro inositol is found have a financial interest in buckwheat, the process of extracting the d chiro inositol from buckwheat or the drug (called INS-1 by Insmed) itself. Accordingly, they are not too interested in what OTHER foods have d chiro inositol in them, nor are they interested in undermining a drug that will be a BIG, BIG DEAL when it finally comes out.

So does soy lecithin (a food derived from the soy bean, a legume) have d-chiro inositol, or pinitol, or just plain old inositol? Who knows, but I know it worked for me after 20+ years. I know that it has brought on ovulatory periods for many women who have tried it.

I decided that since I was experimenting with my body based on the above mentioned article, I should actually try the buckwheat product that is documented to contain d-chiro inositol. It is buckwheat farinetta that I got from www.minndak.com. I have been consuming approximately 1/3 cup/day of this flour-like substance for a little over 1 month and had another ovulatory period with my cycle shortening to 33 days. This exact supplement is mentioned in Christopher Williams' MD book The Fastest Way to Get Pregnant Naturally.

Here are some of my thoughts to put out there. They might be threatening to you. I hope not but I'm willing to risk it to help someone:

First, I do not test "insulin resistant" during a fasting glucose and insulin measure. My fasting insulin is very low. But the d-chiro inositol is a substance to improve the efficiency and effectiveness of insulin. If it works, then good reasoning would suggest that I had an insulin glitch. Don't wait for your Dr. to tell you "you are insulin resistant". If you have true PCOS, the kind that leads to overweight and diabetes, then treat yourself as if you are insulin resistant/diabetic no matter what the Dr says. Learn all you can about insulin issues and you will conclude that you need to reduce carbs, exercise and weight train (very beneficial to me), monitor your diet by spreading out your meals, eating enough protein, etc. I am now a big believer in the basic premises of Atkins and Protein Power.

Second, I have never had a Dr. help me. I have my best Dr. right now in that she will witness these wonderful things and say "way to go." It would be a waste of time to write here about the lack of medical talent that has been brought to my case. However, now I realize that they just don't have the time or even knowledge in most cases to improve the situation of the PCOS patient. If the goal is not a baby or if your symptoms are not disrupting your work life (if the Dr. even believes your symptoms) you are nobody. I have never had friend/family support--again I could write lots about the pain of keeping this all in especially as a teen but it would be a waste of forward moving energy. I took my health into my own hands. Any Dr. that doesn't agree with ME is off the team.

Third, my lifestyle had changed a lot especially the dietary changes and the working out. It is a constant struggle against what "I've always done" or what "normal people do". Making permanent change in your own life is the biggest issue. Use whatever resources you can to help you. I am willing to change my whole lifestyle to have ovulatory periods--it is normal for the female human and is beneficial in many ways.

Fourth, I have heard of a couple of MEN who have had wives with PCOS. The MEN researched and came up with the same conclusions I did about supplementing with the buckwheat product. Both wives became pregnant (their goal). I think the men were able to think objectively and scientifically about the issues. They were able to fix a goal, determine a process (supplementing with the buckwheat), and make their wives follow the protocol over a period of time. I think the men were able to be much more objective (being men, being removed from the emotional thinking, and not actually having to change their own life much) and the women benefited from the "authority" figure to answer to instead of their own fluctuating hormones. You may not have the authority figure to answer to. You might have to be your own authority figure.

If you truly have PCOS, you WILL be revisiting this "problem". If you are young, start now managing your health because whatever health problems you develop later will be related to the metabolic issues that made your PCOS possible. Managing the symptoms is different than managing the problem. If you get pregnant and that is your goal--Great! you just managed a symptom (infertility) of PCOS--keep pressing on with the underlying disease--you will need to know all about it for your future and the future of your children.

I put this out there to help you and to help me.

Good Luck,

JGV

posted 05-17-2002 09:43 PM       

I have a couple questions for you. Do you only use the carob syrup now? Do you still use buckwheat at all? How do you take the syrup?

I am also waiting for the syrup to arrive. Do you happen to know if once I become pregnant (hopefully), should I stop taking the syrup or continue using it throughout the remainder? Just curious...

Please email me the article. I am very interested in reading it. Congratulations on overcoming some of the symptoms of PCOS!

------------------
Cindy

posted 05-18-2002 10:10 AM       

>>>>>I am consuming syrup now in any way that sugar could be used in a liquid form--lemonade, in stewed berries, hot chocolate, whipped cream. I haven't been taking buckwheat.

I am also waiting for the syrup to arrive. Do you happen to know if once I become pregnant (hopefully), should I stop taking the syrup or continue using it throughout the remainder? Just curious...

>>>>>>>>I haven't had any recent experience being pregnant!! You will have to read the journal article I'm sending you and other info and make your own decision about that.

Good luck, jgv

posted 05-18-2002 10:52 PM       

Please would you send me a copy of that journal article? I've read the abstract but it would be really good to get the whole article!

Also this is probably a stupid idea, but how much would it cost to fund a lab somewhere to check levels of pinitol, inositol, d-chiro-inositol etc in a variety of foods? Its clear to me that the people who know this kind of info all have a financial interest in it and aren't going to make it public. Maybe us cysters could raise some funds to pay for a small lab project like that?

posted 05-19-2002 01:29 AM    

Just wanted to say THANKS! I read a post of yours over on the PCONatural list a few months back, and ordered the buckwheat farinetta, and am now eating a half cup a day of it. I really, really appreciate your getting this information out there.

I'm very interested in the carob syrup too, not because I don't like the farinetta, I actually find it fairly tasty, but 1/2 cup is a lot and I figure a carob milkshake with a muffin is more fun than two muffins.

Do you have any idea how much carob syrup one is supposed to consume daily?