pcos without insulin problems, need advice

smma · 10-16-2003, 01:56 PM

Is it possible to have PCOS without insulin problems? If so, what can be done without needing to take metformin/gluco. to reduce symptoms of pcos? Since I am already thin, staying on a low carb diet would only make me lose more weight.

Chrissy · 10-16-2003, 05:28 PM

Hi welcome to the bunch! I too, as well as many cysters here, are thin, not IR and wondering that same question. For me since I am 38 on Friday and done having my children, I use birth control pills and have used aldactone in the past. The pill helps my symptoms almost completely disappear and gives me regular AF. I do worry about taking it for so long but am encouraged by my RE that it is the best of options for me to stay healthy, cyst free, and shed the uterine lining to protect against uterine cancer.

I know many girls here take insulin sensitizing drugs but since my sugar is low as well as my insulin levels not much help there.

I have done particularly well with ortho-cyclen and triphasil in my history. I used aldactone early in my thirties to get excess hair and acne under control after being off the pill for quite awhile. Things settled down after I got back on the pill awhile.

Clomid worked very well for me although the second time around it took more medicine to get pregnant.

Good luck and see what works for you. We're all different! Maybe some of my experience will help you. Feel free to email me if you have any particular questions. jk.mclaughlin@juno.com

Emmanuelle · 11-19-2003, 12:29 AM

I don't believe insulin resistance to be the root cause of pcos...if that was the case then all women with pcos would have IR. The root cause seems to be a pituitary gland dysfunction caused by exposure to environmental toxins as a fetus. So, for women with pcos who are not IR, working to rebalance the endocrine system will help. This like natural progesterone cream or vitex combined with a good multivitamin/mineral and essential fatty acids are highly recommended...and a healthy diet with exercise always helps with everything.

waiting for first · 12-10-2003, 10:55 AM

I'm unfamiliar w/ the toxic exposure link (not disagreeing but I've researched a ton about pcos and never saw any scientific studies about this).

What I can say is that the newer studies show that even in those women who are thin and not IR, if you put them on metformin, a large %age will eventually start ovulating. Now, if insulin didn't play a part in pcos on some level in everyone, then why would an insulin sensitizing agent work at all? So now many theories out there are saying that...

A.) the GTT for insulin resistance does not pick up all cases of IR. It was meant to pick up diabetes technically. Also, there have been studies done where women who did NOT test + for IR w/ the 2 or 3 hour GTT were given a 24 hour IV glucose drip (obviously this test would only be done in a research setting) and many of them DID then test + for IR. The longer your GTT, the more likely it is to show something at least (a 3 hour is preferred to a 2 hour, a 4 or 5 hour would probably turn up more cases). Something to consider.
B.) some people who are pcos without IR may not technically have super high insulin levels, but maybe our body has an abnormal response to the insulin floating around. We are just overly sensitive to it possibly.
C.) some cysters who are not IR initially over time do become IR. Some women on here were not IR in their teens and 20s, but by their 30s, or sometimes after a big change like having their first child, they became IR, started to have more weight problems, etc.

I never tested high on my 2 hour GTT for insulin or sugar levels. I definitely have pcos (elevated free testosterone, higher end of normal dhea-s, elevated androstenedione, anovulatory, cystic ovaries). I did met for about a month alone, did a month of it with clomid (no O) and then moved to injectables (had already done 4 clomid cycles total and never responded) while remaining on met. Met alone never got me Oing, but I also wasn't on it very long by itself. Sometimes it takes 6 months or longer to work.

Interestingly, I just insisted my mom get a 3 hour gtt w/ insulin levels. She never was diagnosed w/ pcos, was always very regular in terms of periods to the day (whereas since i went off the pill I wasn't getting AF at all on my own), but she did take 3 years to conceive me (she had my brothers easily when she was 19 and 20, then divorced, and married my dad). So perhaps she had pcos but in her younger years it was very mild. Maybe it played a part in her having issues getting pg w/ me, but she was getting AF every 28 days and didn't have any other signs.
SHe's a bit overweight (about 150s-160s at 5'2" but was thin when younger), apple shaped, but no other external symptoms. She does have high cholesterol, taht despite a perfectly healthy diet and exercise, refuses to cooperate (she takes a low dose of a statin drug to control it). She has a hard time losing weight even when eating perfectly healthy. Recently she tried low carbing after me getting diagnosed, and it helped her a lot. She got the GTT done and sure enough, she's borderline IR. Her doctors keep saying the levels are normal, but her PCP has no idea what he's looking for. He's looking at the normal range as set up on the lab results, which is meant for diagnosing diabetes, etc. If you look at the values listed on PCOS sites for IR, my mom is at those levels. I suspect her cholesterol issues, etc. are all part of syndrome X (metabolic disease caused by insulin which may be the root cause of high cholesterol, high blood pressure, high triglycerides, heart disease, diabetes, etc. in a large part of the population).

I believe PCOS does have a tie to insulin in almost everyone to some degree, whether the tests label you as IR or not. Otherwise insulin sensitizing agents would NOT work for non-IR cysters, and they eventually do for many people according to the research. It may take time for the IR to really show up, or maybe we just are overly sensitive to the insulin in our bodies, even if the levels aren't necessarily super high.

My 1st RE wouldn't put me on met because my GTT was normal. I wanted to be on it, because I read the studies saying it could possibly help me ovulate regardless, and even if it didn't, it significantly lowers the m/c rate in pcos. I didn't want to go through all of the treatments to get pregnant and m/c if it myabe could be prevented on some level w/ met. I got a 2nd opinion from a different RE and he agreed to put me on it (he's at U of Penn in Philadelphia, one of only 8 centers in the country to get funding from the Nat'l INstitutes of Health for clinical IVF/IF research, and the only one currently getting funding from the NIH for laboratory based IVF research...it is a great institution). I ended up switching REs and never regretted it.
I eventually conceived on gonal-F and stayed on met through my first trimester. I'll be 30 weeks pg this Saturday.

Just wanted to share what I've read after spending a lot of time researching and wondering the same thing...

Beth

kloc12 · 01-08-2004, 01:24 AM

WOW!! Beth you are so inspiring. I want to do what you did. My RE does not wan to put me on Met either because I do not test IR. However, I am worried if I go to another doctor that my blood tests won't show my symptoms because I run and am on Prometrium. I guess i just release my records at my old hospital. BUT, I wanted to know how you went about finding the doctor that listened to you and prescribed you Met? How did you feel on MEt? Did you get regular periods, did it feel better than BCPS? I am curious!!

moonshadow · 01-08-2004, 10:52 AM

i didn't test positive for ir, either. my endo at the time put me on met as she said the non insulin properties of the drug haven't been tested, but that something is happening with people with pcos that aren't ir shows that it helps regardless. or something like that. it was over a year ago.

all i know is that i was on it for about 3 months, and for about 9 months following my stopping it i got closer to having regular af cycles. which says a lot, as i usually only got af once or twice a year before that.

i am very interested in th pituitary aspects of pcos. this is because i also have thyroid problems. i think that especially in people that express problems with more than one gland/hormonal thing that is connected to the pituitary (and which isn't???) or the hypothalamus these should be addressed as roots, and looked at more closely.

until i find someone that is willing to look to the pituitary or hypothalamus as possible reasons for thyroid and ovulatory problems i'm going to try to get back on met, as it did help for a while, i think, even though it made me ill when the dosage got at about 1500. i wasn't able to stay on it long enough to see if these side effects would wear off like they seem to in others.

if i can get someone that will be able to moniter me while on vitex, i'd like to try that, as it seems to target the pituitary gland. i don't want to try it without someone who knows what they're up to monitering me on it though.

Emmanuelle · 01-08-2004, 12:45 PM

It might be true that some people are overly sensitive to insulin without necessarily being IR. I've never tested positive for IR and I'm thin but then again my body could react negatively to the insulin in my body. It's like my dermatologist told me that someone with acne can have very normal testosterone levels but their skin is too sensitive to DHT ( dihydrotestosterone)...so I guess the same thing could happen with insulin. BUT, even though I agree that PCOS has a strong association with insulin problems, I still do not believe that IR is the root cause. Like moonshadow mentioned, some women with PCOS are at risk for developing hypothyroidism which could be caused by low progesterone levels. Many women with PCOS also have high estrogen levels or a high ratio of estrogen to progesterone. Others have anxiety problems, depression or weak adrenal glands which suggests that IR like hypothyroidism, like cysts on ovaires, anxiety etc, are all consequences/symptoms of a dysfunctional pituitary gland. If the pituitary gland doesn't work optimally then it can cause a domino effect on other glands. I think it definately has it's importance to somewhat focus on insulin resistance to some degree since it can and will worsen PCOS, but I still believe that by treating IR, you are treating only a symptom and not the underlying cause. Scientists have to focus on why women with PCOS become IR and why they have an increased risk for progesterone deficiency and estrogen dominance which could lead to hypothyroidism ( which by the way can frequently be corrected with natural progesterone cream). We now know that women are literally bathing in a sea of xenoestrogens which are false estrogens who act like imposters in the body and then do damage. This can cause a dysruption in the messages that the pituitary gland sends to other glands ( ovaries, pancreas, thyroid etc). Which is why I believe that PCOS involves the endocrine system, not just the ovaries or just the pancreas. I think that if scientists could find a way to completely rebalance the pituitary gland, the rest would follow...other glands would rebalance themselves.

waiting for first · 01-13-2004, 12:52 PM

Kloc 12,
I requested a copy of all bloodwork results from the beginning for my own files, and took them along w/ me when I got my 2nd opinion. If you aren't sure what the doc's feelings are on IR/non IR and taking metformin, you could call around and ask in reality. Just ask what their feelings are on RXing it for non IR patients.
Also, if you are talking w/ your doc about it or getting a 2nd opinion from a different RE, PRINT OUT THE STUDIES. Print them out from off of this website...the ones that show +++ effects from metformin even in non IR women. If doctors know you know your stuff, they may be more willing to listen. I work in healthcare (I'm a pediatric physical therapist), so I feel comfortable reading medical studies and I also don't believe that doctors are infallable. I think my proactive approach (and lots of questions!!!) keeps them on their toes

Ask lots of questions. Ask why the studies are saying met might work even if you aren't IR. Ask if it would hurt to at least TRY metformin. It is your body...you have to advocate for it

I know that had I not pushed as hard as I did to get my doctors to hear me, and to eventually locate an RE who was familiar with the latest research it would have taken me MUCH longer to get pg. (BTW, my RE who Rx'd metformin isn't entirely convinced about met for non IR patients, but he said as long as I understood it might not be a "miracle cure" he was willing to give it a try based on the research. His partner however, is a huge believer in non IR cysters taking met. IN fact, she doesn't even test for IR anymore because she believes met can help regardless)

I only took met for about two weeks, then I had to stop because they wanted to do an HSG. I went back on a few days later and we also added clomid that cycle, but I didn't ovulate (I had only been on met for a short time though, maybe I would have if we had given it longer). After that cycle, I was on met about 6 weeks when the doc asked about going to injectables...did I want to give met along more time or move on. I was very ready to move on. My first injectables cycle I overstimmed big time and my cycle was cancelled. Round 2 I got pg. BTW, when I started metformin I ramped up the dose per my doc's instructions and that helped w/ side effects. I did 500 for a week, then 1000, then 1500. I didn't feel really nauseaous until I hit 1500 and that lasted about a week and was very rough.

I stayed on met throughout the first trimester. I'm so glad I did...I was terrified of m/cing, and even though it can still happen, met can really lower the risk.

I don't think IR is the root cause of everything pcos related, but I believe it plays a large part. I definitely think the pituitary plays a part. There is a lot of talk about the "ovarian-pituitary axis"...that dysfunction in one creates dysfunction in the other. Also...There are several forms of pcos that are theorized. I once posted to Dr. Sher (a famous RE) on an forum about being a "thin cyster"....did it mean anything different. I asked if we are tougher to get to respond to ovulation inducing drugs....(because you often here that...) Here was his response:
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Your body build should have nothing to do with response or outcome. If you are a high testosterone output PCOS woman then you may be more resistant but I doubt it. Most PCOS women are very high responders. If you have no IR , Metformin is not going to do much good. If you have "Adrenal PCOS" then you will have a raised blood DHEAS. If not, you probabbly do not and will not benefit from adrenal suppression with dexamethasone.

Please read the article below and email sbenzel@sherinstitute.com if you wish to interact with me one on one.

Geoff Sher

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POLYCYSTIC OVARIAN SYNDROME (PCOS): OVARIAN STIMULATION AND EGG/EMBRYO QUALITY.

GENERAL COMMENTS:

In the mid-1930’s, Stein and Leventhal described a syndrome characterized by irregular or absent ovulation, amenorrhea (absent menstruation) obesity, short stature, an increase in body hair growth (hirsutes), acne, infertility, and evidence of slightly enlarged, “glistening white ovaries that contained numerous small cysts under the capsule. It subsequently became evident that infertility occurring in women with “polycystic ovaries” often occurs unaccompanied by many or even most of the typical features of the so called “Stein Leventhal Syndrome” leading to the condition being re-named, the Polycystic Ovarian Syndrome (PCOS).

Women with PCOS often have insulin resistance, a family history and/or a personal tendency to develop diabetes mellitus Women with PCOS also have a slightly increased potential to develop endometrial and/or ovarian carcinoma, but the consequences of these serious conditions can be all but avoided through vigilance and early diagnosis...

PCOS-related infertility is usually amenable to correction through selective surgery and/or the use of oral and/or ingestible fertility drugs.

Woman with PCOS are often highly sensitive to injectible gonadotropin fertility drugs and commonly develop Severe Ovarian Hyperstimulation Syndrome (OHSS) with its serious complications. When using fertility drugs, PCOS women often experience multiple ovulations which dramatically increases the risk of high order multiple births (greater than, triplets). While selective use and careful rationing of such drugs can reduce the risk of OHSS it does not eliminate it altogether.

VARIATES:
Polycystic Ovarian Syndrome (PCOS) is not a single disease entity. As the name implies it is a syndrome of symptoms and signs that can be traced back to three basic underlying path physiologies:

1) the most common is genetic (dominant inheritance) hypothalamic-pituitary-ovarian in origin and is typically associated with inverted LH: FSH ratios (high endogenous LH levels) and high normal or raised, androgens (androstenedione, testosterone and dehydroepiandrosterone -DHEA).

2) Adrenal hyperplasia: Here the Androgens testosterone and/or androstenedione are raised but the presence of DHEAS confirms the adrenal origin of this androgen (note the S [sulfate radical] at the end of the DHEA indicates its adrenal, rather than ovarian origin).

3) Chronic pelvic adhesive disease due to inflammation, repeat surgeries or endometriosis (usually advanced): This type of PCOS tends to be more resistant to stimulation with gonadotropins and androgen levels may vary. DHEAS is not raised.

# 1, above is often associated with insulin resistance and may respond to prolonged metformin (glucophage). The women tend to hyperstimulate easily and may require "prolonged coasting" (see below) to avoid the severe complications associated with hyperstimulation. Timing in the administration of HCG is critical if good quality eggs/embryos are to be attained. These women have a high incidence of triplets or greater if IVF is not used to selectively transfer fewer embryos/blastocysts.

# 2 is treated with steroids such as prednisone or dexamethazone which sometimes restores spontaneous, regular ovulation. If not, Clomiphene or gonadotropins may be needed. The tendency toward sever ovarian hyperstimulation also exists and IVF may be needed to prevent high multiple pregnancies.

#3 is often associated with ovarian resistance in spite of there being many follicles. Sometimes a high dosage of gonadotropins is required. Neither steroids nor metformin are helpful.

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Now, he didn't exactly seem to buy into met helping if you aren't IR, but I've seen lots of studies saying the opposite. Also, dexamethasone isn't that successful in most cases from what i've read. It is meant to suppress the androgens, but it is one of those things that tended to work better in theory than in reality, kwim? What I do think is interesting is his "variates" of pcos. I clearly fall into category 2. Raised DHEA-S. I do not have an abnormal LH/FSH ratio. I didn't respond to clomid, but responded like crazy to very low doses of gonal F.

Also, as far as the IR connection, I do not have any family members who are diabetic, etc. My mom didn't have pcos, but I do suspect that she has some IR. She recently was tested w/ a 2 hour GTT and came back borderline, but her primary care doc doesn't know anything about iR and says it is all normal (but if you look at the normal values for insulin and glucose based on one of the links here on soulcysters, she's slightly IR). SHe has skin tags on her neck, is apple shaped and has a very hard time losing weight (she's about 30 lbs overweight and that only happened after she had kids) despite eating very healthy and exercising regularly. My mom also has high cholesterol that she has had no success lowering without meds despite eating like an absolute saint. My dad has high blood pressure and high triglycerides. I believe i've also read that there may be a connection between premature balding and IR in men, and my dad and my brothers began to bald before they hit 30.

As researchers learn more and more about "syndrome X," they are tying insulin to causing high cholesterol, high blood pressure, high triglycerides, or diabetes in many people who have those conditions (not everyone who has them, but many people probably have some connection to IR). They still don't fully understand it all, but it is a big area of research right now (my husband is a pharmaceutical chemist and I know that the drug companies are looking at this connection right now to develop new ways to treat these common problems...by going through the insulin connection). If you read about syndrome X, it is all quite fascinating.

SInce pcos is probably genetic, I find it interesting that perhaps my parents (or maybe just my mom) have some degree of mild IR that didn't manifest itself as PCOS (obviously my dad can't have pcos) but did show up in the hyperlipidemia, the elevated blood pressure, high triglycerides. etc. So maybe there is some link in my family w/ the insulin issue. Either an oversensitivity or a mild level of IR that isn't showing up very clearly.

Okay, enough from me. I wanted to share Dr. Sher's 3 varieties of pcos with anyone who hadn't seen them...thought it was interesting info

Beth

It is all very interesting!! I just hope they keep learning more so we can all get appropriate treatment.

lissadell · 01-13-2004, 10:22 PM

Hi Beth,

Thanks for posting that study. It's quite interesting! It's the first time I've heard of a different variant of PCOS.

I've never been tested for IR (supposed to be happening along w/ other b/w after I start my next cycle, if I can ever convince this one to end), but do have a family history of diabetes (and an older sister w/ PCOS and pre-diabetes). So, it wouldn't suprise me at all to find out I am IR. At the same time, it seems like a lot of thin cysters don't test as IR, so it wouldn't surprise me if I don't test IR either! Years ago, I had some hormonal tests run and was told I had "high androgens" - so who knows, maybe I am the "type 2" variety also. Guess I'll find out soon!

Kloc12, Beth is so right that you have to be proactive with your doctors. The only reason I am on met now is because I specifically requested it from my OB/GYN. She was convinced that it wouldn't work for me because I'm not overweight. But there are plenty of studies suggesting that insulin-sensitizing drugs can work for us too! I too went for a second opinion (from an endocrinologist), after realizing that my OB/GYN was not up-to-date and had put me on a very low dose with no monitoring or guidance on if/when to adjust to see effects. Fortunately, I've found a very smart new doctor who is "met-friendly."

Anyway, just wanted to jump in and say "thanks" Beth and "good luck" kloc12!

Best wishes

Lissa.