D-Chiro Inositol research

suzy25 · 05-21-2002, 02:45 PM

Hi again,

Just wanted to start a thread for all research articles showing a relation between d-chiro-inositol deficiency and IR/PCOS. I'm starting to notice that all studies I've seen so far are authored by or associated with Dr. Nestler, who is linked to Insmed, the pharmaceutical company getting ready to profit from INS-1, the commercial version of d-chiro-inositol.

Does anyone know of any articles by sources other than the Virginia Tech/Dr. Nestler study? Please note, I am not trying to say that there is something fishy going on here, I'm just trying to get second opinions, hopefully from some more objective sources who haven't been commissioned by investors of a drug company that stands to profit if it is confirmed that their drug works.

Thanks in advance. Be well...

DolciLady · 05-23-2002, 12:27 PM

I think the pharmaceutical company has a patent or monopoly on research/info on the d-chiro-inositol. I can't find much out there either that's not linked to the particular doctor, company, or clinical trials.

Kittycat · 05-23-2002, 03:29 PM

I participated in the 9 month clinical trial for D Chiro Inositol and I can tell you it is going to be HUGE. I was not expecting the results I had from taking it. I am really ticked off at this point at the drug companies that have tried so hard to keep this whole thing under wraps so they will make a "profit" from it. This "drug", (which isn't even really a "drug', it's a substance the body is supposed to make on its own) will be used to treat Type II and PCOS. The part that ticks me off is that what they've known of it for years! It has been kept from us so they can federalize it and make huge profits. If there is a "cure" for Type II and PCOS and it's a natural substance that has no reported side effects, shouldn't it be made available to the public?

Let me tell you alittle about my own experience first of all. I am 30 years old tomorrow and I have always had one period per year or less. I have gone as long as 3 years without ever having a period. The most periods I had on my own before the study was 2 in one year. (Not counting those I induced with provera). I have high testosterone so I have symptoms associated with that as well. I have been ttc for 4 1/2 years and took a break last year to participate in the study. (I really needed a break from ttc!) As for ttc, I am clomid resistant- no amount of clomid will make me O, and my doctors speculate that I have never had an ovulatory cycle in my life. My hormones are extremely wacky as well. I moved on to injectable meds and hyperstimluated on the lowest doses possible. Then I graduated onto wearing a PICC line in my arm that pumped gnRH into my system every 90 minutes. I wore this thing for 45 days and never ovulated even thogh they tripled my dosage.

Upon taking the DCI I was convinced I was on placebo for the first 2 months because I felt nothing. Then during the 3rd month, AF came. I fgured it was my annual AF. But exactly 30 days later AF was back! Then 30 days later AF was back again and so it continued for 7 months ina row. I also noticed hormonal symptoms. My breasts even changed! and I could feel the hormonal cycles taking place every month (which I had never had before). My skin also began to change and became more supple and clear. I had taken a GTT before starting the study and had fainted at the 2 hour mark because of hypoglycemia.(Along with severe sweating, nausea and shakes) I lhad learned at that point from my results that I am hypoglycemic. During the course of the study I had 3 more GTT's and felt fantastic the entire time. I was not hypoglycelic during the study. At the end of the study, my sonogram showed that I had far less cysts than I had before.

DCI is a substance that the body normally makes. Upon testing normal people and Type II diabetics they found that normal people have much more DCI than we do. (Both PCOS or TypeII) We excrete too much of it and we probably don't make enough of it. It is now believed that PCOS and Type II are caused by a deficiency of DCI, and they have found that supplementing with it corrects the problem.

I wanted to add that I had no side effects the entire time and was able to take my pills on an empty stomach or with food, didn't matter. I'm off it now and not doing so well. AF hasn't showed up since I went off the meds and even though I'm low carbing I am still not feeling very good. I think my body is trying to adjust back to not having the meds. What I wouldn't give to be back on it again! Hopefully it will be approved and available by 2004, but it's hard to say.

I wish, oh how I wish, that the pharamacy companies cared more for people's well being that about making money but that is simply not the case. DCI sould be readily available for those of us that need it. I am outraged when I think of the fact that these facts have been known all this time and we have been here suffering all along. I wish there was something more I could do, but in the meantime, I wait. Like everyone else.

suzy25 · 05-23-2002, 03:46 PM

kittycat,

WOW! Thank you so much for responding -- I'm so happy that DCI worked for you -- that is great! Especially after so many years of failed efforts!

You know, if you look around on these boards, and the old messages from the old board, you will find that some SoulCysters are getting their DCI naturally through foods. One SoulCyster has a list of Foods high in DCI on her website. I'm not sure where she got this information, but it's a start.

Also, some folks are taking "inositol" they find at health food stores and finding results similar to what you had with DCI. That might be worth a shot as we all wait until 2004. But I must say I have read that women with PCOS, for whatever reason, can't convert regular old "inositol" into DCI. But, again, many women have had positive responses with it, are having regular AF's, and are ovulating. So who knows!?!!?!?!

I did find a couple of interesting articles online regarding inositol (involving research *not* done by Nestler, believe it or not). The first one is from the company that produces Inzitol (which is d-pinitol in pill form, from what I understand). This is a list of their references: http://www.humaneticscorp.com/inzito...eferences.html .

The second link is from the FDA website, and is a letter from the makers of Inzitol explaining a little more about it. It's not 100% related to us, but I found it interesting: http://www.fda.gov/ohrms/dockets/doc...rpt0016_01.pdf .

Anyone else have any comments, articles, help?

PS: Kittycat: what part of California are you in? I'm in LA!

3-D's · 05-23-2002, 04:42 PM

Hello Kittycat,
I was just curious as to weather or not your other syptoms of PCOS improved while you were taking the meds for the trial. I'm waiting and hoping this drug or what ever you want to call it, is our big help. I have had PCOS for about 15 years now and all the syptoms that are associated with it. Did your facial hair improve and what about your weight? Sorry if I sound nosy,but I'm so curious. Thanks for any info.

3-D's(Robin)

Erin3 · 05-23-2002, 05:04 PM

Wow, Kittycat, your post was so inspiring - it's great that the DCI worked so well for you! And bummer that you can't be on it now.

Since DCI is a natural substance found in food, I'd highly suggest trying the buckwheat farinetta; it has 84.9 mg of DCI per 100 g; I'm eating about 1/2 c. a day of it (the amount recommended a couple different places I've seen) which is about 75 g (I just weighed it ;-) and so about 64mg a day - how much DCI were you on in the study? I'd be interested in knowing how close I am to the "proper" dose tested in the study.

I'm also considering adding the carob syrup, which has the d-pinitol which is converted to DCI in the body.

Since you responded so fabulously to the DCI in pill form, why not try it in your diet? Or perhaps you already are and didn't mention it...

Erin3 · 05-23-2002, 05:23 PM

Wow, Kittycat, your post was so inspiring - it's great that the DCI worked so well for you! And bummer that you can't be on it now.

Since DCI is a natural substance found in food, I'd highly suggest trying the buckwheat farinetta; it has 84.9 mg of DCI per 100 g; I'm eating about 1/2 c. a day of it (the amount recommended a couple different places I've seen) which is about 75 g (I just weighed it ;-) and so about 64mg a day - how much DCI were you on in the study? I'd be interested in knowing how close I am to the "proper" dose tested in the study.

I'm also considering adding the carob syrup, which has the d-pinitol which is converted to DCI in the body.

Since you responded so fabulously to the DCI in pill form, why not try it in your diet? Or perhaps you already are and didn't mention it...

Kittycat · 05-23-2002, 06:11 PM

I have been taking carob syrup for about a week now but don't think it's helping me. The problem with the carob syrup (for me) is the high sugar content. In the two tbsp per day recommended dose there is as much sugar as in a 12 oz coke! Much of the foods that are listed (that I have seen in the past) for having inositol is the myo-inositol which doesn't have the same properties as the DCI. I would be willing to try it but have heard it wouldn't help. Maybe it's worth a try. Buckwheat farinetta is high in DCI but not high enough. In the study they had us on 500 mg or 1000 mg a day. I don't know if I had the 500 mg a day dose or the 1000 mg a day dose. I will probably never know.

As for my symptoms during the study. The thing I was most pleased with was that AF began showing up on a regulat basis. When I said I had changes in my breasts I will clarify what I meant also. They were getting sore at different times during the month, and also, even though I have always had medium to large sized breasts they changed- lthey became fuller and rounder.. before they were kind of saggy sometimes? Thats the only way I can describe it. Another change was my skin! It was remarkable. I've always had splotchy facial skin, kind of like how a man's face is, not soft and clear like most women's skin. I suspect that it is from the high testosterone. Well, my skin began changing and became very smooth and clear. My facial hair did not diminish, but I was told by the investigating doctor that once the hair follicle has been stimulated it won't just go away just like that. I think it did slow it alittle though. I don't know how much my testosterone dropped but I felt as though it did drop because of allt he changes. As for weight, well, I am considered a thinner cyster so I didn't notice too much by way of weight. I DO guess though that since my metabolic endocrine system began functioning normally that it would facilitate weight loss if I were heavier, but I don't have any experience in that arena. The DCI helps the body to use the insulin properly, thus eliminating the high insulin in your system. I believe it's the high circulating insulin levels that prompts the body to store excess fat. My investigating doctor did mention that the other heavier cysters were having great results as well but I didn't think to ask about the weight, sorry.

I hink I am going to try the buckwheat farinetta. Alittle DCI is better than none at all, but that dose is very small. In order to have good results you need at least 500 mg a day, maybe more depending on how IR you are and the scope of your individual case. Good luck girls!

Erin3 · 05-23-2002, 07:03 PM

Thanks, Kittycat, that's really useful info! When I was ttc my last baby, I had heard about DCI, but heard from some people who were having success with just plain old inositol, and decided to give it a try because it seemed better than doing nothing. I did end up getting regular cycles (for the first time in my life!), Oing and conceiving, so something I did worked.

I'm currently in the "throw the kitchen sink at it" mode, I'm taking about 400mg a day of regular inositol, eating 1/2 c. a day of the farinetta, going to add carob syrup I think, and also am taking Vitex, GTF chromium and L-carnitine, and only eating whole grains and as little sugar as possible and all of it non-refined. I just got my first period pospartum (17 mos. out), but I couldn't tell you if that's a one-off or if things are starting to work again. I'll get back to you in a few months. :-)

Hang in there!

August · 08-11-2002, 12:40 PM

LSGMSU1 · 08-11-2002, 02:26 PM

I've created a bread recipe which combines carob and buckwheat farinetta (the 2 best food sources of d-pinitol). I O'd last cycle for the first time since March and this cycle CD 14 I'm on my 4th day of EWCM. I don't know if it's the bread, soy isoflavones CD 5-9 or 3-7, 500 mg met, 50 mcg of synthroid, or all of the above but here it goes:

1 cup boiling water
* 1/4 cup oil
* 1/4 cup honey
* 1 cup buckwheat farinetta
* 1/3 cup carob powder
* 1/3 cup of soy lecthin granules (optional)
* 2 tsp baking powder
* 3/4 tsp ground cinnamon
* 1/4 tsp baking soda
* 2 eggs
* 1 Tsp pure vanilla extract (optional)

Preheat oven to 350 degrees Farenheit. Grind soy lecthin granules to a fine powder in a blender, add water,and blend for 30
seconds, add oil and honey, blend again. Allow to cool to lukewarm. Combine
flour, carob, corn free baking powder, cinnamon and baking
soda in a large bowl. Mix well. When the liquid mixture has cooled to
lukewarm, blend in the eggs and vanilla. Pour liquid mixture into the flour
bowl. Mix to moisten all dry ingredients. Bake in muffin cases for 18 minutes.

HISIRISHGEM · 08-11-2002, 02:50 PM

Hello Ladies!!

While taking this buckwheat farinetta for DCI, are you still on Glucophage or have you stopped taking that all together??

Where are you getting the syrup from?? I remember one of the cysters was selling it, but I also remember that she was thrown off, or her posts were deleated.........is that where your getting them from, or from the local food store??

I'm going to try that bread....I also think I got my answer, since LSGM is taking Gluc and thyroid...which I'm on both.

Bee · 08-12-2002, 08:26 AM

Hi there!

I have been on Metformin for 3 1/2 months. I got AF 12 days after starting Met and then again 54 days later and then 35 days later. I don't know if the 35-day cycle was due to the baby aspirin or the soy lecithin I have been taking.

For me, I've been really constipated on Metformin and once I introduced the soy lecithin granules, I've been having regular BM's. I also noticed a difference in my concentration and thought process. I no longer felt fuzzy headed. Soy lecithin is used to help clear the veins of fat, helps lower cholesterol and helps improve memory.

Soy lecithin has 2,100 mg of inositol. Recommended dosage is 1-2 tablespoons a day, but I'm only taking 1/2 tbsp.

I also think that adding the lecithin to my Met helped my acne to clear up. I got lazy and haven't been taking my lecithin like I should and I have a huge zit on my earlobe! Grrr!

I really hope d-chiro-inositol comes out quickly, it sounds very hopeful. I'm TTC and Met has helped me to start ovulating, but I'm still not regulated. My body hasn't taken on much of a pattern so timing is unpredictable.

Keeping my fingers crossed for a better treatment!
Bee

giberange · 08-13-2002, 11:57 AM

can someone please confirm to me the following:

1. is soy lecithin granules good to take to induce af and regulate our cycles or can pcos people not convert it? if yes, how much a day should we be taking (in mg and in tbsps please). what time of the day? on an empty stomach or with food?

2. where can it find the buckwheat farinetta? anyone have the link? and the carob syrop? what do both do for us?

3. any other advice you can provide me with on inositol and/or d-chiro inositol.

HISIRISHGEM · 08-13-2002, 12:33 PM

If you read through, D-Chiro Inositol is what the bodies are supposed to produce......those with pcos don't seem to....D-chrio inositol is made naturally by combing soy lecithin with Carob Syrup which contains a high (higher than most at least on the market) count of DCI......Kitty talks of the Drug administration producing a pill for this ...........however, theres not much information otherwise due to the fact that the gov't is keeping it quiet per say. Anyways......most products can be found at your local health food stores.........I'm sure one of these other cysters can explain more as I'm just researching this and most likely can't give you all the concrete information you should know.