Pregnitude is a blend of myo and d-chiro inositol (and folate, I think). D-chiro is expensive and Pregnitude is a proprietary blend (ie - they came up with the ratios), which is why it's so expensive. You can get myo-inositol by itself for about $30/lb in bulk form, which should last you somewhere around three months (my family goes through about half a pound a month, with a combined usage of about 25-30g daily, so a single person on the PCOS dosage of about 4g, or anything less than that, should be able to last far longer).

D-chiro and myo work together and complement each other, so it would probably still be worthwhile to include it if you can find it (even Amazon only has two listings -- if it doesn't specifically say it's D-chiro, then myo). Take a look around and see if you can find them cheaper separately.

You might also want to check out Vitex (chasteberry). It's got more side effects than Inositol, but it's pretty powerful for hormone balance (just make sure you talk with your doctor to ensure you don't accidentally cause interactions).

And yes, you can have cysts without having PCOS, you can also have PCOS without polycystic ovaries. It's a syndrome, so it's just a collection of symptoms.

Also, define "normal" for insulin levels. What did your test result come back with and what is the cut off number? "Normal" according to LabCorp isn't necessarily "healthy" for one's body.

andisue50 wrote: »

Thank you, Dragonwolf! Maybe I will continue pregnitude while TTC but definitely want to try the inositol and see if it provides the same relief from my cramps in the future. My insulin was 3.5 in April and then 5.6 this time.
Thank you, ravenstar25 for the response. It's definitely frustrating that things are so gray, not black and white. I really love my doctor (and of course she just moved across the country and I have to go to a new one!), but I wasn't expecting her to suggest PCOS. It makes me feel better to know there really is so much variability.

Let me just say I'm jealous of your insulin numbers. I've been fighting to keep mine under 20 (the cutoff between "normal" and "pre-diabetic"). I'd have zero weight issues if I could get mine to your levels, since it's the major roadblock for me!

Seems you have what's sometimes referred to as Type II PCOS. Or PCOS without insulin resistance. Have you done progesterone supplementation? It sounds like your issue may stem from estrogen dominance due to the low progesterone. The cysts on your ovaries and intermittant ovulation may also stem from the lack of progesterone (and I'm willing to bet low levels of lutenizing hormone (LH), too).

And I stand corrected, it seems Pregnitude does not contain d-chiro inositol, but rather it's a blend of myo-inositol and folic acid (which means it's expensive largely for the name, all the more reason to switch to something else). So, in light of that, here's what I recommend trying:

1. Drop the Pregnitude for a different, less expensive brand of Myo-Inositol (I recommend what I linked earlier). You can keep the same amount as a dose of Pregnitude (2 grams) if it's effective for you, but don't be afraid to increase the dosage (especially if you can't get your hands on DCI, or if you're still having limited benefit). There are no known adverse effects to larger doses and tested therapeutic dosages of myo-inositol go as high as 12-15 grams.
2. Take a separate folate supplement and make sure it's folate and not folic acid. Folate has better bioavailability (folic acid has to be converted for the body to use it). Also, don't be afraid to eat more eggs, especially if you can get your hands on pastured eggs. They're folate powerhouses.
3. Add in some d-chiro inositol (DCI) to help augment the action of the myo-insoitol.
4. If your progesterone is still low and/or testosterone still high, consider a natural progesterone cream, Vitex, or other progesterone supplementation. Bringing progesterone up may help reduce testosterone as the body is no longer trying to compensate for the estrogen dominance.

* Disclaimer -- I don't think Inositol has been tested for safety during pregnancy, and so most people will be like "use with caution" or whatever borderline paranoid verbiage they like to use. However, Folate is highly encouraged during pregnancy. Given that Inositol has very similar actions to Folate (improved neural function), helps modulate insulin much like Metformin (which is also usable during early stages of pregnancy), and is also a vitamin and has been proven to be safe in general, even at high doses, then it stands to reason that it's safe, and possibly even advantageous, during pregnancy. As always, though, consult with your doctor about it and go the route that makes you feel most comfortable.

On a side note, I found this nifty article on the safety of preconception herbs during pregnancy (as well as herbs that are great for common pregnancy ailments).

andisue50 wrote: »

Dragonwolf, sounds great. I have an appointment next week so I will definitely talk to her about changing the Inositol/Folate. As far as the progesterone, the doctor did have me take progesterone supplements along with my Clomid/Letrozole rounds. Sorry, should have mentioned that. The side effects of the progesterone SUCKS though!

KnitOrMiss, sorry you've been through so much! Glad the Metformin is helping you.

Was it natural or synthetic progesterone? I'm not as versed in progesterone supplementation, but that may make a difference in that. Hopefully you can work something out that doesn't require that, though, if you're getting bad side effects.

Good luck!

KnitOrMiss wrote: »

The progesterone I took was a natural topical cream that you rub into your thigh once daily so that it is slowly absorbed through the fat layer. Don't know about Andisue50's form... I just know that must stuff was so out of whack, it helped, but not the way it needed to help. It worked to balance out another deficit that was even worse...

I use a natural progesterone cream the last half of my cycle also. You can rub it into your inner arms, face, thighs, etc. It helps balance out the estrogen issues, which the Vitex is also helping. Since my miscarriage in September, i use the progesterone to straighten things out AND to help just in case we have another surprise.

andisue50 wrote: »

Mine was a prescription that is inserted vaginally.

After a positive pregnancy test, the insurance will pay for progesterone suppositories but until you get a positive pee stick, its natural progesterone cream off amazon.

Hey! PCOS can be very confusing because there are multiple ways that different medical organizations use data to make the diagnosis. They used to make the diagnosis solely based on polycystic ovaries on ultrasound, hence the name. I also have PCOS, but I'm what you call a "lean" PCOS. (I'm 5'4, around 130 lbs), however I have never had a period naturally or ovulated. I do not have insulin resistance which leaves less meds that might help my ovulate (such as those that help insulin resistance such as metformin and supplements like myo-inositol). I also had severe androgenic sx when I was diagnosed; getting laser hair removal on my face at the age of 13! I have not tried for pregnancy yet and am nervous about doing so. Thus, looking for support in general. I love that we are educating each other; such a positive group here. I am a physician assistant myself and have a strong interest in women's health and PCOS in general. Let me know if I can help with any medical questions also. I did my Master's thesis on comparing myo-inositol vs. metformin in regards to pregnancy rates. I should also say I am also hypo-thyroid, so I have both of those things going for me!

lysco08 wrote: »

Hey! PCOS can be very confusing because there are multiple ways that different medical organizations use data to make the diagnosis. They used to make the diagnosis solely based on polycystic ovaries on ultrasound, hence the name. I also have PCOS, but I'm what you call a "lean" PCOS. (I'm 5'4, around 130 lbs), however I have never had a period naturally or ovulated. I do not have insulin resistance which leaves less meds that might help my ovulate (such as those that help insulin resistance such as metformin and supplements like myo-inositol). I also had severe androgenic sx when I was diagnosed; getting laser hair removal on my face at the age of 13! I have not tried for pregnancy yet and am nervous about doing so. Thus, looking for support in general. I love that we are educating each other; such a positive group here. I am a physician assistant myself and have a strong interest in women's health and PCOS in general. Let me know if I can help with any medical questions also. I did my Master's thesis on comparing myo-inositol vs. metformin in regards to pregnancy rates. I should also say I am also hypo-thyroid, so I have both of those things going for me!

Also, if your thyroid issues are not under full control, look into Iodoral. It is a combination iodine/iodide supplement that is over the counter, but generally kept behind the counter in many pharmacies that carry it. Medication brought my numbers under control, but I didn't start having any symptom relief until adding Iodoral. I recommend it to anyone I hear suffering of hypothyroid. My doctor had me start taking 1/2 a pill a day to be sure I tolerated it okay (some have an allergy, similar to iodine allergies). After about 4 days, I switched to a full pill, and around day 8, I realized that it had slowly creeped up on me that I was waking up without multiple alarms and not feeling like a brain-dead zombie. I was still tired, but I was functionally awake with a single alarm, which hadn't happened in a decade! Nearest I can tell, it really kicked in around day 5-6... I missed that supplement accidentally the last 3-4 days, and I could really tell. Today, I was nearly catatonic... Took me a while to realize the problem.

I am not insulin resistant by the numbers, but have odd food processing borderline narcolepsy issues that are managed with Metformin. So, good luck. It is wonderful to see more PA's out there studying these difficult issues.

andisue50 wrote: »

I've been doing some research, and there are studies showing PCOS is linked to hypothyroidism. Also studies showing PCOS is linked to IBS (something else I deal with- anyone else?). This doesn't really provide any answers, but I just found it interesting that these are all interconnected. Hopefully the treatment/management can become interconnected as well.

The doctors only give me the TSH and the T3 and T4 blood tests, but they are all smack dab in the middle of normal so they wont dig further. Hoping that means no thyroid problems. But I do have some IBS symptoms but never been in to evaluate it for sure. There are things i cant eat without problems, milk because of the whey, gluten in any form, not just wheat but even oats give me a problem. Since I try to do a LC/HF diet, it isnt usually a problem for me because i dont eat the oats/wheat/gluten or drink milk. I can use dairy in cooking, cream cheese or sour cream or heavy whipping cream with out much of a problem but one 8 ounce glass of milk will bloat me by almost 4 inches (yes we measured) and give me some bad IBS symptoms.

It is interesting how interrelated everything is with PCOS. It isnt a 'fertility' only issue but the sad and frustrating part is most doctors only see it as a fertility issue. It actually affects all the rest of our lives, from self esteem issues based on weight or weightloss issues or excessive hair or cystic acne, to the depression and feelings of worthlessness from fertility issues, to digestive health, PMS symptoms, depression and anxiety.

I am SOOOO very very happy to see some doing their thesis and work in this field who really do care why and how to fix it because most of us are surrounded by doctors who view it as a fertility issue, stick us on birth control and tell us to come back if we want kids.

andisue50 wrote: »

I've been doing some research, and there are studies showing PCOS is linked to hypothyroidism. Also studies showing PCOS is linked to IBS (something else I deal with- anyone else?). This doesn't really provide any answers, but I just found it interesting that these are all interconnected. Hopefully the treatment/management can become interconnected as well.

It wouldn't surprise me if they found PCOS to have a certain amount of autoimmune activity. I've already seen a lot of promise in numerous people for reducing or eliminating things like dairy and gluten for PCOS, IBS, and at least Hashi's in the thyroid department. Unfortunately, nothing will change until doctors start asking the right questions and seeing that it's not just a "fertility issue" or "just" anything and start digging into the root causes of the issues (which I have little doubt will be similar environmental causes as IBS, Hashi's, and other issues with an autoimmune component).

I've seen, and have had a lot more success with, integrative doctors. They can be hard to come by, though, and don't take insurance (due to their needs for how to practice conflicting with what it takes to deal with insurance), but they're worth every penny, because they do do interconnected treatments for things.

We took my son to one due to behavior issues that his primary just shrugged her shoulders at and basically said "we could try Ritalin." The integrative doctor ran more tests than the primary would have even dreamed of doing, and found nutritional deficiencies that have gone unnoticed, because primaries basically won't ask the right questions. His gut flora basically looked like Chernobyl, and was completely devoid of lactobacillus species and was having issues with parasitic flora overgrowth, thanks to all the antibiotics from recurrent ear infections (that the primaries didn't bother to refer to an ENT after the third one in about as many months like they're supposed to). His gut flora was so messed up that he couldn't digest meat properly and ended up deficient in basically all the nutrients found in red meat (he'd refuse to eat meat, probably because he didn't feel well afterwards). Since starting him on supplements and probiotics, his behavior has improved and he's starting to more readily eat meat (the big hit right now is chicken, but he'll do pork sometimes, red meat is still sketchy, but we're getting there).

Dragonwolf wrote: »

andisue50 wrote: »

I've been doing some research, and there are studies showing PCOS is linked to hypothyroidism. Also studies showing PCOS is linked to IBS (something else I deal with- anyone else?). This doesn't really provide any answers, but I just found it interesting that these are all interconnected. Hopefully the treatment/management can become interconnected as well.

It wouldn't surprise me if they found PCOS to have a certain amount of autoimmune activity. I've already seen a lot of promise in numerous people for reducing or eliminating things like dairy and gluten for PCOS, IBS, and at least Hashi's in the thyroid department. Unfortunately, nothing will change until doctors start asking the right questions and seeing that it's not just a "fertility issue" or "just" anything and start digging into the root causes of the issues (which I have little doubt will be similar environmental causes as IBS, Hashi's, and other issues with an autoimmune component).

That is an interesting idea. I've been dx with PCOS and Chronic Fatigue Syndrome since i was 16, signs of Rheumatoid arthritis (which is auto immune) since i was 25 and dx with it at 28, Psoriasis (also autoimmune) and Sjogren's syndrome (also autoimmune). I also had breast cancer at 33 and again at 35 with NO family history of it. I always chalked it up to my mother doing drugs, mostly pot, while she was pregnant with me (darn hippies!) but maybe it has a lot to do with the PCOS and wacky autoimmune/hormonal response.

I believe I posted it on another thread, but just because you are in range does not mean that is in range FOR YOU. Make sure you have a doc who is willing to treat the symptoms too, even if your bloodwork doesn't fully support the diagnosis.

My PCP suspected thyroid problems back almost a decade, but never could get the range results to show it. Finally did a couple years back, but after a med that didn't help, I thought it was fluke because it was "barely" a problem. Now that i'm treated with a different med and supplement and feeling human again, I know it wasn't. My normal range is not the test's normal range... Listen to your body. If it is saying something is wrong, it is. We are not a one size fits all society. It is my endocrinologist who told me this - about the ranges not fitting everyone, in particular for people with PCOS...

I never thought about the fact that I had more or less borderline precocious puberty and weight problems. I was the "fat kid" since I was less than ten. I started my periods at 9. Which means that I was in hormone flux since at least 8. And the last time I remember being average/healthy was around 6-8 years old. This makes so much sense!!!!!

I was already on the bandwagon of advocating PCOS testing and treatment to any females I hear about having problems, but this makes me wonder, seriously, how many widespread cases there are being untreated... This condition could have higher rates than other crazy diseases....

A_Dabauer wrote: »

I've also been reading about a potential link between early puberty, and PCOS.

Interestingly enough I was put on my first diet at 10 because of rapid weight gain (though I wasn't actually fat), my period started at age 11.

I've never really made that correlation before, but there very well could have been the trigger for the weight gain.

I learned very young that deprivation was the only way to maintain my weight. I was a reasonably 'healthy' weight until I reached my 20's got married and stopped starving myself.

I started the month i turned 10 and my daughter started at 10 and a half, my mother started at 9 and all of us have PCOS. My dad put me on my first diet at age 9 (slim fast is soo gross!) because id gained about 20 lbs that year. And i was active, outside all the time with all the siblings climbing trees, slip and slide, making mud pies, etc. Didnt eat more than others but gained weight anyway.

Its amazing how we all have similar stories. Amazing that because this is seen as a 'ferility' issue, it hasnt been more studied and girls arent caught earlier so their lives are a train wreck of hormones by the time it is a fertility issue in their 20's 30's or 40's.

I've looked into water kefir and kombucha, and there seems a lot to it. I've made sourdough before, but honestly, it is forgiving as far as if you forget a day, etc. Are these as forgiving? We use worcestershire sauce often, so that's good... I've heard kimchi is scary... LOL I've only had sauerkraut once, despite being 25% Polish, and usually the smell if offputting, but now that I know many people rinse it before cooking it, and I already love cabbage, I might try this... I'm scared, but ...

My problem with cheese/dairy is weird. I don't have any problem at all with hard cheeses. It is soft cheeses/milk. I'm okay with cream, even half and half. It is the ricotta, cottage cheese, cream cheese, sour cream, yogurt stuff I have such huge problems with... Sour cream I can do in small doses. Cream cheese I can handle when cooked. Yogurt I can tolerate when I'm visiting Aunt Flo, but since that doesn't happen anymore with meds, I don't try. But Greek Yogurt gets like Cream Cheese, and that has actually made me quite ill before. Cannot do cheesecake or anything like that. Makes my tummy hurt...and makes me queasy. I don't know what it is. Cottage cheese I can stomach, but it makes me ... rumbly?

Speaking of cycle effects - does your gut flora alter cyclically? Or just random with food eaten and all that?

Milk is intermittent. I can drink it, but my body treats it like a mild sensitivity (like it builds extra phlegm and if I drink too much, a tummy ache). I don't have this issue at all with any gelato or ice cream or custard, anything like that. I just don't understand.