PCOS and Insulin Resistance: Some Questions.

March 25, 2009 8:39 AM

My 26 year old daughter has just been diagnosed with PCOS and insulin resistance. Where does she go from here?

My daughter, who has been having wildly irregular periods - one a year if that - and has been gaining weight steadily without being able to lose it for some years now, finally got health insurance and went to the doctor. The gynecologist ran a bunch of blood tests and gave her this diagnosis, as well as a prescription for birth control pills to start her period up again, a prescription for Metformin and the stern admonition to lose weight. Considering that one of the reasons she went in for testing was that she has been unable to lose weight even on a very strict diet with about 12 hours of gym time a week, that's easier said than done. She didn't give her much if any more information. We've been googling like crazy but so much of the information is contradictory or strange and I don't want to get entangled by mistake in any of the weirder theories or treatment plans out there - and wow, they do seem to exist.

Yes, we should be asking her doctor and that's the first question - should we go to another doctor? What kind of doctor treats this? Her OB/Gyn (who is my doctor too) is nice but a bit harried and busy and getting an appointment to talk to her literally takes months. So I have some other questions:

There is absolutely no history of diabetes or any kind of insulin problem in either side of her family. There's no history of obesity in women, either, although some of the men do tend to bulk up as they get older. So where did this come from?

She's afraid to start taking the Metformin due to possible side effects and because of the strictures it has: i.e., you must take this at exactly the same time each day with a full meal. She has a crazy work schedule and simply is not able to eat at the same time every day: she works with autistic patients and at any given moment could be anywhere in the area, depending on where she's needed, thus, she spends a lot of time in her car. How bad are the side effects? Earlier AskMes seem to say they are worst in the first 2 weeks after starting the medication. True? How important/necessary is it that she take the Metformin with food? At the same time? And what about alcohol? Can she really never have a drink again? Also, is she on this medication for life? Is this thing curable or not? She doesn't want to change her entire lifestyle and while I keep telling her she may have to, I sympathize completely.

Should she see a nutritionist? Where do you find those? Some of the suggested online diets are insanely restrictive. Is she really going to have to be on a completely carb free diet forever? Is that even a good idea?

If I ate and exercised the way she does - honestly, she's very diligent - I'd get very thin in about four weeks. Yet she just keeps on gaining weight. Is the Metformin really going to help with that? What else can be done?

I'm sure there are lots more questions that I can't think of right now. Basically, if you have this condition or know anyone who does, any information would be really helpful. We're both a little freaked out by the whole thing.

posted by mygothlaundry to health & fitness (30 comments total)

Check out the Curezone for assistance with this.
posted by watercarrier at 9:01 AM on March 25

Everyone I know (4 women) who has taken metformin/glucophage for PCOS/insulin resistance related to fertility or general wellbeing has reported losing weight and resolution of at least some of the related issues. I was prescribed metformin for some (perceived) infertility issues but got pregnant before I started taking it, amazingly, so I can't speak from personal experience.


Yes, we should be asking her doctor and that's the first question - should we go to another doctor? What kind of doctor treats this? Her OB/Gyn (who is my doctor too) is nice but a bit harried and busy and getting an appointment to talk to her literally takes months.
Instead of researching complementary/alternative medicine on the Internet, can you get a new doctor?
posted by chesty_a_arthur at 9:08 AM on March 25

should we go to another doctor? What kind of doctor treats this?

While her OB/GYN is a good start, she would probably also benefit from seeing an endocrinologist.
posted by amyms at 9:13 AM on March 25 [1 favorite has favorites]

Hi, Type II Diabetic on Metaformin (and other drugs) here, though male, so I can only help with some questions. I'm typing this quickly before heading out the door, so excuse the typos.

First: DON'T PANIC. This is doable, but'll take some time. She will fail at times (keeping to diet, exercise etc), that's ok, just keep plugging away at it.

I think there was slight nausea at first when taking MetaFormin, but no big deal. I have a glass of wine every now and then, but I'm not a big drinker so that doesn't bother me. Metaformin helps with the insulin, which should make losing weight easier. If not, the dosage may need to be increased or she may need to go on Byetta, but the doctor is probably trying smaller measures at first before bringing out the big guns. She should discuss taking Byetta with the doctor as it may help her more. If she can lose weight, she might be able to get off the drugs, but that's a very, very difficult thing to do, so Metaformin and other drugs may be in her future.

Reading this book helped a lot in that first year of being diagnosed.


Take the Metaformin with food, as it'll help her blood sugar levels not spike as much when she consumes food. I wouldn't worry about taking it at EXACTLY the same time every day, just have her do the best she can. Sure, it would be better if she could, but taking it at all is better than nothing.

Insulin resistance is not curable. If fact, it gets worse over time, especially if she doesn't treat it. Her body's insulin makers are working overtime to try to compensate with her body's resistance and wearing themselves with the effort and dying early from that effort and they don't get replaced. If she starts taking care of herself, those cells will be able to last much longer, though they'll eventually fail. It's just a question of whether they do that at 30 or at 50.

Check out your local hospital for diabetic programs and/or nutrition programs.

IGNORE anything that says she must be completely carb free, that's bullshit.

I'm in the middle of doing something else right now, so I gotta wrap this up, but feel free to contact me. There's some pretty standard diets/philosophies that allow a diabetic to lead a pretty normal life, you just have to be careful.

If I ate and exercised the way she does

YOU ARE NOT HER. Her body with her insulin resistance works differently from normal bodies so please, for the love of god, don't compare your body to hers or let her do the same. She's different and needs to live within that difference. Basically, her automatic transmission is broken, so she'll have to manually adjust it.

Here's the major point: She' 26 and young and her life will have to radically change IF she wants to remain happy. That's an extremely difficult thing to digest, especially at a young age. There is a lot of information and education that will have to be done, but it's possible and it'll take a while to not only learn, but digest it all. That's ok. Take small steps, or very small steps. This is a life changing thing but it's not life destroying and she can come through this feeling better than she ever felt before.

If nothing else, she needs to start taking the Metaformin now, with food. That's the first step.
posted by Brandon Blatcher at 9:14 AM on March 25

I'd get a second opinion on this. PCOS is called a "syndrome" for a reason -- the estrogen mix-up is related to the insulin resistance. The standard treatment for PCOS is simply having the patient go on the pill. She may not need Metformin, and unless there's something super-acute going on, the birth control pills may set her system right on their own.

IANAD, etc.
posted by foxy_hedgehog at 9:16 AM on March 25

I have PCOS and I see a reproductive endocrinologist every few months. I also saw a nutritionist in the beginning, but it didn't really help me much. Metformin has definitely helped me lose some weight, but I have a hard time with it not messing with my stomach too much.
posted by disaster77 at 9:18 AM on March 25

Ack, forgive me, I'm talking from a strictly diabetic perspective, where as PCOS is something I know nothing about.
posted by Brandon Blatcher at 9:24 AM on March 25

On preview: I have a doctor dad with Type II diabetes and a sister with PCOS. BrandonBlatcher's well-informed post on Metformin is from the perspective of a man with Type II diabetes, not a young woman with PCOS-driven insulin resistance. These are two different patient profiles and the need for the Metformin -- and the need to start it right away -- is not necessarily the same in both cases.

Insulin resistance is not curable.

I have heard differently. I think this may be true for people with Type I diabetes, but for people like your daughter, it may just be a function of weight.

Also, something I forgot to mention: you might want to see an endocrinologist, rather than a gynecologist, for your second opinion.

Good luck.
posted by foxy_hedgehog at 9:24 AM on March 25

Oops, sorry Brandon, didn't see your second note there.
posted by foxy_hedgehog at 9:24 AM on March 25

My wife had the same thing. She went on a low-carb diet (even avoiding carrots!) and lost about 25 pounds, and the condition abated. Exercise was helpful, but the endocrinologist stressed that diet, more than anything else, would help her fight PCOS, and it worked.
posted by KokuRyu at 9:29 AM on March 25 [3 favorites has favorites]

She might be able to evade some of the scheduling difficulties by using the time-release versions of Metformin, if she isn't already:

Metformin SR (slow release) or XR (extended release) was introduced in 2004, in 500 mg and 750 mg strengths, mainly to counteract the most common gastrointestinal side effects, as well as to increase patient compliance by reducing pill burden. No difference in effectiveness exists between the two preparations.
posted by jamjam at 9:29 AM on March 25

Some say that vitamin d can help with PCOS symptoms. Of course, there are people who say vitamin d helps with pretty much every condition, syndrome and disease. Still, a couple of vitamin d pills a day and getting out into the sun a little more won't do any harm and might help.
posted by stavrogin at 9:36 AM on March 25

I'd really recommend seeing an endocrinologist. You can often find one through the health insurance website, and click through to see their specialties. It's made a world of difference seeing an endo for thyroid issues - I think she'd have much greater monitoring and suggestions on her actual case from an endocrinologist as opposed to a regular GP or OB-GYN. And don't conflate everyone who takes Metformin as having the same root cause - they may manifest in similar insulin numbers but the underlying causes are very different and require treatment as such.

Don't freak out. A direction in terms of possible diagnosis is much better than a doctor who says, "who knows? we can't help you!" It's not a hindrance, it's a huge benefit to know the name and strategy to begin figuring this out. Metformin has its issues but she will likely see the weight begin to come off if she continues with her food/exercise regime. What's keeping her from doing so now is the insulin resistance. Metformin (can) help with that. Good luck!
posted by barnone at 9:38 AM on March 25

watercarrier - sorry, I should have said in addition to. "Instead of" didn't make any sense, my bad.
posted by chesty_a_arthur at 9:40 AM on March 25

I was diagnosed with PCOS at 17 (I am now almost 30) because of my irregular periods and lack thereof. PCOS is a tricky thing (as are many endocrine issues) - the weight/insulin/sex hormones are all tied up in a lot of feedback loops.

I have been seeing my reproductive endocrinologist for 13 years now, and seeing one is very crucial to your daughter getting the proper treatment. It's even better if you can find someone at a research hospital (I don't know where you are, but I go to Massachusetts General, where there is a whole research unit devoted to PCOS and similar issues.) You don't mention what tests your daughter has had, but a fasting glucose tolerance test and an ultrasound of her ovaries are two things the RE will probably do.

As far as my life with PCOS, I did gain quite a bit of weight once I got into my teens (I was just sort of "pudgy" as a child) and through my 20's. I was treated with birth control pills to return my periods from about age 18-20, but I developed high blood pressure so I was taken off of them and put on Metformin instead. The Metformin did help me lose some weight, but it was difficult and relatively easy to regain. I really disliked Metformin and found that if I skipped even one pill my digestive system had to readapt all over again.

About a year and a half ago, I got laparoscopic gastric banding surgery to help me finally lose the weight I had gained. I had spent a few years being angry at the idea whenever my reproductive endocrinologist brought it up, so it took me some time to come around to it, but I am so glad that I did it. I have lost 60 pounds, no longer take Metformin (stopped the day before the surgery), and I ovulate and menstruate normally. My insulin resistance and blood pressure have improved too. It sounds like your daughter is doing a fabulous job with diet and exercise, and even losing 5-10% of the weight will help the PCOS tremendously.

I really hope that you aren't feeling too scared about this diagnosis, and I am certainly not saying weight loss surgery is the only "way out" of the issue. I just wanted to give you my perspective. I never felt like my life had to change too much at all because of PCOS, so don't worry about that. Please feel free to MeFi mail me if you have any questions.
posted by nekton at 9:44 AM on March 25

I have both PCOS and insulin resistance. I take Yasmin (birth control pill) and metformin. The insulin resistance is driving the weight gain. She needs to start taking it otherwise she is not going to see any weight loss.

First, I would recommend that she sees an endocrinologist. I know that every OBGYN I've been to in the last twenty years have been less than helpful with my PCOS.

Has she been prescribed the extended release version of metformin? That's preferable to the older version, it's easier to take. She will probably have some stomach upset for the first few days on it, but at this point I've been on it for years and I take it without food and I'm fine.

Personally, I have only had success with weight loss in connection to a lower carb diet, but it is difficult to eat well for me.

There have been a ton of developments in treating PCOS in the last few years, mainly in dealing with the metabolic and hormonal components.

I have a ton of books and websites to recommend. If you're interested, please feel free to memail me.
posted by crankylex at 9:46 AM on March 25

I know someone with PCOS that is taking metaformin. She started out at a pretty high dosage and it made her so nauseous that should couldn't keep the pills down. After speaking with her doctor, she went down to a lower dosage then worked her way up to the original higher dosage over a period of several weeks. By working her way up to the higher dosage, her body learned to tolerate it and she was able to keep it down. Also, she got pregnant shortly after getting on the metaformin regimen, much to her relief after being concerned that fertility would be a long battle.
posted by chiababe at 9:51 AM on March 25

I have PCOS. My primary care physician initially prescribed Metformin, but when I sought infertility treatment from a reproductive endocrinologist, I was switched to Actoplus Met, which is a combo of Metformin and Actos - I personally don't experience any side effects from the combo drug like I did from the Met alone.

Your daughter is lucky, in that she was able to get a diagnosis and a good start towards fighting PCOS. When I first suspected I had it, back in 2002, I had a primary care physician who didn't believe me (though many of the symptoms are pretty obvious) and then told me that even if I did have it, it didn't matter unless I was trying to get pregnant (which I wasn't at the time). Your daughter's OB/GYN is probably not the best specialist for this - as others have mentioned, an endocrinologist should be her next step.

As for her need to eat while juggling a varying schedule - she should always have some snacks with her (baby carrots, dried fruit, nuts, protein bar, etc.)
posted by candyland at 9:58 AM on March 25

Don't freak out, parental unit. (Easier said than done, I know.) This is all doable.

Nthing the endocrinologist suggestions above. I don't think consulting a dietitian/nutritionist would hurt, if only to help your daughter understand her food choices a bit better. The more knowledge she has, the better equipped (and hopefully in control) she'll feel, moving forward.

Should she take metformin and will it help? It should help control her insulin levels better than her own body can right now, which means better glucose control (and that's important for a lot of reasons). At her age (and assuming she has no underlying liver or kidney dysfunction) metformin is not apt to have major side effects. (However, if in the future she has any diagnostic testing done which requires contrast media - she needs to let the imaging folks know. Contrast dye and metformin can cause problems with the kidneys.) Should she take it with food? Yes, because it's affecting her insulin levels - without food on board she runs the risk of becoming hypoglycemic. Can she drink while taking metformin? Well...here's the thing. If she's trying to lose weight, cutting out (emtpy) alcohol calories is a logical place to start. That being said, my understanding is that it's not necessary to avoid all alcohol while on metformin; HOWEVER, and as usual - talk to the doc first.

As to the carb free diet - again, in agreement with posters above who say it's not likely. A good dietitian/nutritionist can help set your minds at ease on this. You might also check the American Diabetic Association's website for recipe ideas that should work well for your daughter.

Best of luck to you both!
posted by arachnid at 10:00 AM on March 25

Very surprised nobody has mentioned Soulcysters, the online community for women with PCOS. The women on their forums are crazy-experienced with this, and there are areas specifically for the new newly-disagnosed to ask questions.
posted by DarlingBri at 10:10 AM on March 25

My ob/gyn, who is on the young side, and did her residency with some excellent local doctors I know (she's young enough to really be up on the newest treatments) recently prescribed Metformin for me as well -- she didn't make any points about taking it with meals / at superspecific times so much as she warned me to work up to the 3x / day regimen slowly so as not to suffer from, ahem, adult-diaper-needing consequences. I also wasn't told I couldn't drink at all/ever/etc again, so I'm not sure how accurate that is...
posted by bitter-girl.com at 10:12 AM on March 25

I was diagnosed with PCOS when I was the same age as your daughter (I am now 30). From puberty (age 11) until then, I only got my period once or twice a year, but had never been tested for PCOS. Most doctors ignored the symptoms because I was very overweight and focused on that issue (understadably) instead of on the abnormality of not menstruating (not as understandable). As my weight became out of control and I started college, I became extremely restrictive with food to the point of passing out all of the time, though I still never seemed to lose much weight. After college, I was less restrictive (but I was a vegetarian and I would swear that I ate less than most people) and I gained steadily until my highest weight of about 310.

At 26, my new gynecologist finally decided to test me for PCOS and lo and behold, that had been my issue this whole time. I know that you find the idea of restricting carbs to be an awful thought, but the day that I left that doctor's office and did research on PCOS and read that a low carb diet worked for this disorder I started doing my own version of a low cab diet (I started eating meat again, but only fish and poultry, and I ate as many vegetables as I wanted, but no sugar, bread, pasta, rice, etc). Four days after I went low carb, I got my period, and until a few months ago (I've become more lax with carbs in the past few months, which enforces to me how strongly they're tied together), I got my period every single month! It still blows my mind that all it took to go from 1-2 periods a year to a regular cycle was to cut out carbs, but there you go.

I went on birth control for a while, but not really for the PCOS and I chose to not use any other medication, though it was my choice as the insulin resistance aspect of my PCOS wasn't as bad as the other symptoms, and therefore wasn't necessary. In the four years since my diagnosis, I have lost ~150 pounds.

Every woman with PCOS has different needs, and maybe the Metformin alone would help her lose weight, but cutting out sugar and white breads/pastas/rices and replacing them with whole grain or low carb/high fiber options (there are many breads and pastas made to be low carb) would help.

My diagnosis of PCOS is perhaps, the best thing that ever happened to me. I would obviously be happier if I didn't have it, but living with it for so long without knowing I was doing so was seriously awful. At least now I have some idea of how to go about fixing the symptoms that accompany it.
posted by eunoia at 10:59 AM on March 25 [2 favorites has favorites]

Nthing the others - the answer to "where to from here?" is "to the endocrinologist".

Soulcysters actually scared me shitless after I was diagnosed (classic PCOS without insulin resistance) - I spent hundreds of dollars and a lot of time on a gym membership because I envisaged myself as massively obese with cystic acne and uncontrollable hirsutism within months, but PCOS manifests itself differently for everybody and this was totally unnecessary for me (I struggle to keep weight on). Don't let that (and the other online support boards) be all she reads on the topic, for her own sanity!
posted by goo at 11:20 AM on March 25

chesty, thanks for clarifying :)
posted by watercarrier at 11:39 AM on March 25

Actually there's some beneficial info I just read on the Soulcysters' site on alternative approaches. It's always good to get a few perspectives from a variety of sources and then decide how to go from there. Bottom line, mom - get a very good education on what you're dealing with - whatever it takes. Be well and good luck in finding the absolute best remedy for your daughter.
posted by watercarrier at 11:44 AM on March 25

Oh, and as for where it comes from - nobody knows. For me it is most definitely not caused by insulin resistance, and my cousin and I both have it in exactly the same form (although hers is more severe - she has never ovulated and is now 37), so I can't rule out genetics.
posted by goo at 11:48 AM on March 25

More later, but: the no-drinking on Metformin rule is because of the risk of diabetic ketoacidosis, which is serious but rare. I take Metformin for my PCOS and continue to imbibe occasionally, though my husband has been warned of the symptoms just in case.
posted by subbes at 12:43 PM on March 25

My husband's on Metformin for type II diabetes, and the GI symptoms vary by the person, but mostly seem to involve fascinating bowel movements and epic flatus. Your daughter should be prepared for same-- they do go away, although when Mr. F's mail-order pharmacy changes the brand of generic Met they get, he occasionally experiences a resurgence of GI symptoms. If they're completely intolerable-- don't go away in a few weeks, cause problems with her job, etc.-- she definitely should talk to her doc again.

Mr. F's old job kept weird hours and changing demands and so on, and he's found that having a snack with his before-bedtime Met dose, has worked out OK for him. That being said, his doctors suspect that the weird schedules he used to keep-- 15-hour shifts, working nights, etc-- made the endocrine disruptions worse, so keeping to a schedule may improve your daughter's situation. She'll almost certainly need a good reproductive endocrine specialist to figure that one out, though-- don't take my word for it, my representative sample is one 36-year-old guy with no ovaries. ;)

As for the no-drinking, our GPs have mostly been of the opinion that one drink occasionally is a lot better than strict denial and then a five-drink bender, and that's worked out well, although subbes's warning is one to keep in mind. (Mr. F's found that a nice dry gin and tonic is a safer drink, if he's going to drink, than just about anything else.)
posted by fairytale of los angeles at 1:20 PM on March 25

*favoriting*

I'm in some ways similar to Nekton, above, I was diagnosed at 16 and am now almost 30. For some time I was on aldactone and the Pill. Found that combo - but with only non-generic aldactone - worked well. However I lived overseas for some years and didn't have health insurance here for others and only started back with treatment last summer. NEw endocrinologist did tests for glucose tolerance, etc. all came back clear and she put me on metformin. I haven't had the severe side effects that some of you mention, but then again I haven't found a strong benefit to Metformin since my period is still crazy and the PCOS symptoms haven't abated. I'm seeing a new endo next month due to insurance and I'm going to speak with him about switching to either non generic and/or going back to the old regimen, which worked.

Also interesting reading on the connections between PCOS and obesity

Happy to discuss further if you'd like to MeFi mail me.
posted by TravellingCari at 1:42 PM on March 25

My sister was diagnosed with PCOS about two years ago, similar circumstances, steady weight gain, lots of exercise, fairy good diet. Through changes in diet and exercise over the past year and a half she's improved all her test scores and symptoms, her physician is very impressed. Here are a few things I learned helping her out.

Doctors
It is rarely a bad idea to see another doctor who is qualified to treat your daughters condition, new tests, alternative treatments and most importantly a fresh perspective to treatment and cause. Reproductive endocrinologists tend to see a lot of PCOS cases as it is a common "cause" of infertility

Metformin
A derivitive of French lilac, one of the oldest diabetes treatments. It's effective, but I'm surprised it was immediately prescribed. Did your daughter have a particularly poor score on the fasting glucose tolerence test ?

Magnesium
Almost everyone with insulin resistance and/or type II diabetes is magnesium deficient. Magnesium intake is also a strong predictor for type II diabetes risk. Studies that use a high quality magnesium supplement (chelated, like magnesium citrate or magnesium gluconate) significantly improve the insulin sensitivity of the magnesium group. Magnesium oxide has poor bioavailability and is absorbed at up to 1/5 the rate of chelated magnesium in deficient individuals.

Diet
Although you say your daughter eats clean, it's likely her body isn't particularly fond of what she's eating as she continues to gain weight. Try the usual suspects
- cut total carbohydrate intake by 50%
- never eat carbs without protein/fat
- don't eat anything that comes in a box (processed)
- then look at glutin, milk protein and other less common food intolerences, try elimination diets. This comprehensive account of treating adhd with diet is a good place to start on different techniques and culprits.

Also, have her keep a food log for a few weeks. I do from time to time and i'm shocked at what I eat sometimes, it's too easy to lie to yourself.

Fish oil
My sister loves to eat pasta, lots of it. I suggested she take fish oil when eating pasta as studies show it blunts the insulin response to a large carbohydrate meal. Turns out it also seems somewhat effective in treating pcos, few interesting papers.

There is also plenty of research showing high intake of omega-3 fatty acids (fish oil being one of the best sources) having lower cholesterol, higher HDL, lower triglycerides, lower mortality, less cancer, better cancer survival rates, lower rate of mental disorders like bipolar and schziophrenia and so on.

Exercise
12 hours a week is a lot, most elite athletes and bodybuilders limit their workout sessions to 45 minutes as cortisol begins to dramatically rise at that point, lengthening the healing process and blunting fat loss.

Interval training is the best exercise for reducing insulin resistance (improving insulin sensitivity). Why do you think sprinters have less bodyfat than marathoners? If you perform an exercise aerobic in nature, the primary fuel are fatty acids, and the body supercompensates by storing more fatty acids. Glycogen is the primary fuel for glycolysis in interval training, which forces the body to become more efficient at using glucose/glycogen, improving insulin sensitivity (reducing resistance).

These sample workouts are very time efficient (30 minutes and 8 minutes excluding cooldown and post workout stretching), and incredibly challenging as well, but produce great results. The day2 workouts are based loosely on a workout the 1996 japanese speed skating team that set 4-5 world records, they are devasting to say the least.

(first 18 days)
day1 - pick two pushing (pushups, bench, overhead press) and two pulling (pullup, rows, lat pulldown) exercises. Perform each for 1 minute, move to the next without rest, rest 1 minute when you complete all 4 and repeat 6 times.
day2 - as many squats or lunges as you can for 20 seconds, rest 10 seconds, repeat 8 times
day 3 - off

(second 18 days)
day1 - two new pushing and pulling exercises (slight change ok, barbell to dumbell, machine to dumbell), but do each exercise for 2 minutes, rest 1 minute after all 4 exercises finished, repeat 8 times.
day2 - run, or use any machine (elliptical, bike) as fast as you can for 30 seconds, rest 10 seconds, repeat 8 times.
day3 - off
posted by zentrification at 7:17 PM on March 25 [3 favorites has favorites]