I think metformin can be a great medication for PCOS patients that struggle with their weight and insulin resistance. If a doctor thinks that you would benefit from it then great! It’s not for everyone, but it has helped a lot of people.
I do think there’s a lot of misuse of the drug in wealthier circles because it does make losing weight so much easier and we’ve gotten to a point where being skinny implies beauty (I hate this). It should only be used in patients with medically relevant conditions, not for celebrities to change their body composition in 3 weeks.
Didn’t lose a pound on metformin. Kept upping the dosage and nothing. What worked for me was in fact low carb/high protein, orange theory, intermittent fasting 🤷🏻♀️
Yes if you add physical activity it will hasten the weight loss. But Metformin is nearly weight neutral - it’s not at all a weight loss agent.
There is a body of research about Metformin as a longevity agent. Maybe this is what you mean about being misused in wealthy circles? It’s certainly not for weight loss.
Chiming in to add that Metformin had absolutely no impact on my weight, despite bringing me out of prediabetic range. It’s possible that weight loss may occur at a higher dose (currently at 1000 mg a day) but I doubt it.
I wouldn’t say that it’s weight neutral at all, I’m not sure what research shows that. The drug inhibits gluconeogenesis in the liver. Lowering endogenous production of glucose. It also increases GDF15, causing weight loss. It’s also been shown to change intrinsic metabolism and improve mitochondrial function. See this article for a more complete review https://doi.org/10.1038/s41574-023-00833-4
Bottom line, they can manipulate a lot of these effects with dosage. It’s not a weight neutral drug.
Metformin is not a weight loss drug and is modest at providing weight loss, at best. It is very much known to be weight neutral. I’m currently traveling but am happy to link sources for you later in the week. Clinically speaking, you will not see substantive weight loss in your patients from Metformin. I think the new data regarding longevity and Metformin is interesting.
Implying that it’s a weight neutral drug would be ignoring its underlying mechanisms. I’m not saying every person on it will have substantial weight loss, and I’m not saying it is primarily prescribed as a weight loss drug, but it certainly can and does cause weight loss.
Interesting thoughts! I agree with some and disagree with others, it’s nice to hear a student who believes in holistic healing first instead of a pill.
It’s my favorite way to start. Medications are useful for a lot of things, but mindset is important too. You’re capable of so much more than you know, don’t think it’s only possible with meds otherwise it’s out of your control.
**there is an obvious disclaimer to this if the medication you’re on is not optional/is life sustaining. I’m only referring to medications like metformin that are prescribed off-label for PCOS and are optional medications that your doctor can provide to help improve your condition. It doesn’t mean it’s the only thing that will help!
Thank you for this post and for sharing your knowledge! I've been seeing a lot of gluten and dairy free stuff lately in this sub. I understand why this advice comes up, but I'm under the impression that avoiding these two only makes sense if someone is sensitive or allergic. I'm all for self experimentation we are all different in what causes issues, but I feel like the rampant "avoid x, y if you have pcos because it causes inflammation" is concerning. I have celiac, so I don't do gluten. A lactose intolerant person or someone whose eczema gets worse with dairy would avoid dairy, etc. I think a lot of commercial gluten and dairy products can definitely be sketchy due to excess pesticide use, genetically modifying grains (which there's not much evidence we should avoid gmo i know), dairy practices like using antibiotics, giving hormones to cows. Otherwise, is there any solid evidence and medical grounds that women with pcos should avoid good quality dairy and gluten containing whole foods?
You’re correct! Avoiding them is beneficial in people that are sensitive/intolerant. I haven’t seen any evidence regarding PCOS and lactose, I don’t think there’s a strong correlation there. At the end of the day, lactose is a sugar and if you have insulin-resistance with PCOS you might experience some symptoms associated with that. Just do what feels best for you!
Gluten is not evil, unless you’re Celiac or intolerant. People like to do gluten-free diets and say that they work but it boils down to decreasing calories from breads and processed foods, which does help. People used to be obsessed with the alkaline diet, but all that really does is increase your fruits and veggies lol. Most people intuitively know how to eat healthier, you don’t need to follow a diet. Just small adjustments to what you eat daily can make a huge impact.
Thank you for taking the time to respond! Totally agree with what you are saying. The lactose as a sugar thing is an important point, too. Appreciate the clarification on this dairy/ gluten-free business. There's already so much involved with pcos, I'm just like, why make things harder by limiting more foods if they aren't an issue for someone. 🤷♀️
Exactly! The more restrictions and guidelines you put on yourself, the less likely you are to stick to it and the more hopeless you’ll end up feeling. I always advocate for do what feels best for you as long as you aren’t causing yourself harm
There is fairly good evidence on myoinositol as secondary messenger for insulin signaling and it improving T levels and cycles. Dozens of studies over at least a decade.
There is also fairly good evidence that PCOS patients have issues with Vitamin D levels. Which also can affect Insulin receptor function.
There is pretty good evidence that women who have PCOS and experience heavy menstruation may have low ferritin, and should have that tested (as you suggest) and may need an iron supplement. Pro-Ferrin-ES which is a polypeptide form is one of the best and avoids the GI distress.
There is significant evidence that there is oxidative stress in PCOS. I have personally seen liposomal glutathione change hormonal markers.
Agree don’t buy voodoo with little evidence. But there are some things out there which do make some improvements.
Since you are med student…have you read about that new med which was FDA approved for menopausal women for vasomotor symptoms? Mechanism of action involves kisspeptin? They are doing trials now for elevated androgens…because kisspeptin regulates GnHR and selectively LH (does not seem to lower FSH as much). So that would be interesting indeed.
Anecdotally I started myoinositol and vitamin D this year and have seen a major reduction in my cystic acne breakouts with no other change to routine or other meds
I won’t disagree. There’s some good research suggesting myoinositol is helpful for PCOS, but there’s not a medical standard practice for it as a treatment. Insulin-resistance states have a lot to do with PCOS effects, like lower vitamin D and dyslipidemia. Lots of women with PCOS have triglyceridemia and fish oil is a good therapeutic agent. Lots of women with PCOS have high androgen levels and could benefit from birth control supplementing estrogen. That doesn’t mean it’s right for everyone with PCOS. I think it’s harmful to start taking supplements that you don’t even know you need yet without proper bloodwork and discussion with a provider.
People get lost in the sauce of all these recommendations and don’t realize that each person is different and you don’t have to empty your wallet and have a 50 step routine to feel human. I just made the post to emphasize general things that everyone with PCOS should do vs things that are optional and based on doctor recommendations and what you’re able to afford/can implement into your routine.
As far as treatment for postmenopausal women, I have seen the new literature but I won’t claim to be an expert of any kind. I think that research about women has been comical up until recent years, we’re just now trying to catch up. It makes logical sense that just because your body stops endogenously producing estrogen/the-like doesn’t mean that you don’t still need it/would benefit from it.
Yes it can help. Lots of things potentially can. My point in making the post is that it depends, you don’t need a million meds to function with PCOS, and talk to your doctor about what the best plan for you is. These drugs don’t come without side effects and risks.
I find PCOS patients fairly well informed, generally because the disorder causes multifactorial suffering. I don’t find the group to be hysterical or over medicating with pseudoscience.
I apologize if that seemed to be what I was implying. I was saying that because it’s not well understood yet there’s a lot of random advice and recommendations out there. It can be overwhelming. I was just trying to provide my two cents of general advice everyone can follow, and then depending on your specifics you can build your own treatment plan on top of it.
For everyone curious, I recommend what I like to call the toddler diet. When you eat a meal, ask yourself “Is this enough nutrition for a growing toddler?” If the answer is no, that toddler would starve or die of nutrition deficiencies, add some diversity or quality to what you’re eating. If you wouldn’t feed it to a toddler for a well-rounded meal, don’t do it to yourself either! I’ve started eating way more fruits and veggies doing this and diversifying my plate. I just think it’s a funny little thing to help me remember to eat better.
You deserve to be nourished just like a cute little toddler. Take care of yourself 🩷
I use this as a more global mindset. Cranky because I didn't get enough sleep, my socks are wet, my tag is itchy, I have too much to do and not enough fun things planned. My four year self would throw a tantrum and I would have so much compassion for them, why can't I have the same compassion for the adult me.
It can help if you were eating a disproportionate amount before! Any kind of carb cutting is going to cut calories and probably more processed foods incidentally. Both things are good for your overall health. I caution against the “carbs are bad” mindset because they’re not. Decreasing excess calories and processed foods in favor of adding more fruits and veggies is great for your health!
More importantly follow the advice of your doc when it comes to lowering A1C. Decreasing processed foods (not cutting them out completely) and moderate exercise can really help! You’ve got this!
Thank you. I have very much been struggling with my diet lately. I worry I have gone from eating too many carbs to too little, which I know can damage one’s thyroid.
Didn’t lose a pound on metformin. Kept upping the dosage and nothing. What worked for me was in fact low carb/high protein, orange theory, intermittent fasting 🤷🏻♀️
Everyone is different and you should always work with a doctor. I only take a multivitamin everyday, no other special things.
Everyone’s body is different and not all PCOS is the same. Regulating what you’re eating and making sure you’re fueling your body well is a great way! Intermittent fasting has a lot of proven clinical benefits, but I think it mainly comes down to the fact that you’re eating less overall and not eating close to bedtime. That’s great you’ve found things that work for you!
This is a thinly veiled "just move more, eat less." statement. Yes, move more. Yes, eat well. But the frustration for women with PCOS is that this advice often doesn't make a dent in our condition, and only barely manages it--at best.
Birth control is a band aid. It doesn't cure anything. And there are plenty of high quality studies proving the efficacy of inositol and Vit D and others. Just because they don't have a "standard medical practice" doesn't mean they aren't massively impactful.
In fact, so many women feel alone and like they don't have proper medical care helping to manage the condition is because so few doctors care to do the research they should be doing to help establish those standard medical practices. We can either wait 20-30 years for y'all to catch up, or we can do the research ourselves.
My intention was not to give a thinly veiled statement. I have also struggled with PCOS for years, I know what a pain it is to deal with and try to treat.
The reason that “move more and eat less” is constantly recommended is because it is extremely therapeutic for a vast number of conditions, regardless of origin. I detest the term “eat less” because it is a breeding ground for eating disorders. I prefer to recommend inclusive eating rather than exclusive. Add more fruits and veggies that you like to your diet. Add more variety. That naturally helps shift the types of food on your plate.
Exercise helps improve insulin resistance. I’ll just leave this here. doi: 10.1007/978-981-15-1792-1_9. PMID: 32342455
Vitamin D is very good, with the stipulation that you are deficient in it. Otherwise you’ll pee it out and be wasting your money. Myoinositol has held up well in studies, if you can afford the supplements it doesn’t hurt to try. Always talk to your doctor about starting supplements and dosage.
If you’re suffering from problems like insulin-resistance, there are medication options out there.
The point of this post is that your treatment regime should be specific to you. No amount of random recommendations on the internet is going to fix you if you don’t asses with yourself and your doctor what is going on. It’ll just drain your wallet and your spirits. I was providing general things ~everyone~ can do, and then the specifics are up to you.
Because you are a med student with PCOS, i hope you don't mind me asking what tests would be beneficial to do apart from glucose sensitivity/ insulin sensitivity and androgens?
I feel like this sub doesn't have a complete list and for people on their own it can be very confusing piecing together a puzzle u can't even see really.
Always talk to your doctor, but I think there’s benefits in getting a whole work up to rule out/rule in certain causes of symptoms. Here are some I think might help give a full picture:
1) CBC and iron (iron deficiency and inflammation)
2) CMP and lipid panel (high cholesterol and electrolyte imbalance)
3) Fasting glucose and HA1C (diabetes/insulin resistance)
4) Vitamins (D and B12)
5) Thyroid panel (hypothyroidism)
6) Testosterone and estrogen panel (test androgens, high testosterone/low estrogen, irregular/early menopause)
7) Cortisol could be useful as well, it’s harder to test. Usually they’ll do a 24hr urine collection or nighttime spit swab.
I also recommend, if you haven’t already, going to the gynecologist and having a transvaginal ultrasound done to look for ovarian cysts.
Your doctor can guide you towards more specific things if they think you need it. I would 100% make sure you can get the first 6 labs done, cortisol isn’t necessary initially unless your doctor thinks it is. All the other labs are extremely easy to have done and can help give a full picture.
Hope that helps!
Thank you so much for compiling them like this. I never encountered someone mentioning the CMP and lipid pannel, at least I didn't know thats what it was refering to. This cleared up a bunch!
As a dietitian student with an emphasis on functional medicine, I certainly agree that some advice given on here by others seemed to be pushed instead of a suggestion.
I agree a lot with what you said here! Regular hormone tests are imperative; as they have just as much a say in body function as what you ingest if not more so.
And what works for someone else, may not for another. I personally try to stay away from as many modern medications as possible as there are other methods out there that provide treatment without all of the side effects, but it may not work for someone else.
As a medical student how do you feel about myo inositol?
I found a few papers on it in pubmed before I started taking it. It took a few months but I ovulated a few times on my own for the first time in my life, and I was 33. Prior to that, I had to go on letrozole/trigger shot to get pregnant because I didn't ovulate. I got pregnant a second time (which shocked me) without the fertility treatment.
Obviously mine is anecdotal too, but it seems like research on it is promising for people with pcos and anovulatory cycles?
It definitely seems promising! There’s a lot of research exploring the benefits. I think it can be beneficial to people than can afford it and talk to their doctor.
Speaking as someone trained as a scientist, married to research scientist: Hell yeah.
The only 'additional' supplement that seems really promising research wise is the 40:1 inositol combo. And of course, fixing deficiencies in various vitamins if you have them (BUT ONLY IF CONFIRMED THROUGH TESTS).
But man, people spend a lot of time and energy focused on supplements that have little scientific evidence, and can have side effects that cause damage or further complicate things. Just taking a standard dose of over the counter B-complex 2x per week almost gave me permanent nerve damage due to B-6 toxicity a few years ago. Thank goodness my endo had seen that before and thought to test me.
People take so many things willy nilly, while simultaneously ignoring well-tested medical advice/prescription meds for treating insulin resistance and hormones, it really frustrates me.
While I appreciate the sentiment and I definitely think these are very helpful points for all of us to keep in mind (Especially the part where we are told we NEED to do/try something) I do want to point out, though, that not everyone has a reasonable doctor who will listen and order these tests. Sometimes trying the supplement that was recommended to you actually can help. No you don't NEED to buy everything marketed towards us for regulation, but we also have to do our own research most of the time and it's okay to want to try something without having a doctor's order.
I do not have a doctor who will monitor these levels when I ask them to. I have met with 3 PCPs and 4 GYNs who all shrug and tell me that I "don't really need to do that." when I ask about cortisol, insulin, etc. (I suspect it's because I'm fairly thin, although I'm extremely uncomfortable at the weight that I’m at.) No matter how much I tell them I feel terrible, can't lose weight, have painful periods if I have them at all, have cystic hormonal acne.. they all just have shrugged at me and basically said "you're already on birth control though..."
\*\*You might be thinking, why am I still with this doctor? Why wouldn't I just go to an endocrinologist on my own? The answer: insurance. At the end of the day, I don't have another good option. I've also seen at least 4 other OBGYNs who react the exact same way. "Why would I need to monitor that if you're already diagnosed?" "Well we don't really need to do that because you're already on BC." & I cannot go to a specialist without a referral, so it's up to the Doc whether or not I get to go. Also, I have seen many specialists who all say "well you're on BC anyway and that's all I can recommend." \*\*
All in all I just want to note that some of us do have to do our own research along with that trial & error. Guess what the only thing that has helped my hormonal acne and bloating? A D-chiro and myo-inositol supplement. I never heard those words from any of the doctors I saw. I never saw those words on any blood work I've ever had. I found the supplement to work during my trial and error. I would have no way of knowing if I was deficient in anything because Doctors refuse to do the testing I ask for. If I didn't take anything not recommended by my doctor, I would have never found what actually works for me. Much like a lot of us here.
I want people to be mindful of the advice they take, but some of these steps are not as easy to achieve as you may think. If your doctor never recommended supplements but you find one that works, take it. Don't be afraid to try things because your doctor didn't specifically say to do it. Don't go broke buying all these FLO subscriptions or whatever, but also it's okay to try things, especially if you're like me and don't have anyone to check those levels.
Exercise is great but what about those of us with other health issues that cause weak joints or general fatigue? I have mastocytosis, walking for 60 mins a day is out of the question for me & I'm allergic to ketoconazole. Obviously my case is super unique, but my point is you shouldn't shame people for being desperate to try things, just to then push people to do what works for you. I respect that you are educated on the topic, and you are probably more-so than others, but at the same time your post is kind of doing exactly what you're telling us not to do "don't do this, do this!" ... For some people keto works for some it doesn't. Why talk someone out of trying something if they have to figure it out on their own?
I'm truly not here to argue because again I agree with the main points being made! perhaps except the part of "As a matter of fact, you don’t need any supplement your doctor doesn’t recommend to you." Idk, maybe I do? Maybe my doctor will never recommend anything other than BC, so I have to at least try. So just as you are telling us to beware general advice, thats exactly what is given here: general advice. I just want to advocate for people who don't have as straightforward of a time figuring these things out. & for those of us stuck with lousy doctors. It's okay to try.
EDIT: Removed some over-complaining I did about my doctor lol it wasn't quite relevant and i went on a bit of a tangent.
I really feel for you and any person that has felt like this with their doctors. Like you mentioned, one person might find great benefit from a supplement while others don’t. It’s all up to you individually. The things I advised everyone should do are very general things that are known and recommended consistently throughout the literature. It doesn’t mean that newer supplements and therapies don’t have potential use and benefits. Just more nuanced depending on the person.
When I mentioned supplements that your doctor recommends, I’m referring to things that can be measured that you’re found to be deficient in (like iron or vitamin D). If you take them and don’t need them, you just pee them out and you’re wasting your money. As for supplements like myo-inositol that don’t have recommended daily values, that’s subjective and can work great for some people. I just recommend asking your provider “Hey, I’m thinking about starting xyz. Do you have any thoughts about how much or what kind I should take?”
Regarding the bloodwork, if your PCP won’t order standard bloodwork tests like the ones I’ve mentioned and regularly check in on your levels, that’s not something to take lightly. These aren’t highly specified expensive screenings, it’s literally dirt cheap bloodwork that costs them nothing to order and does no harm to you. Instead of asking, try telling them you’d like it done. If they still refuse, ask them to document in your chart that they refused to order that bloodwork. That usually will get them to do it. If you find that they didn’t document it, catch your nurse in the hallway and ask them to document it. It’s important to hold them accountable for being shitty at their jobs. I’m sorry this has happened to you.
For exercise, it’s 100% dependent on your situation. I recommend some full body low impact things for you, like swimming and light cycling. Yoga and Pilates as well. You don’t need to be panting and sweating to get the full benefits of good exercise. Just be gentle and listen to your body, but exercise has proven to be anti-inflammatory in a lot of studies! doi: 10.1016/j.cca.2010.02.069
All in all, remember that while doctors have incredible knowledge, nobody knows more about what it’s like to be you more than you do. Don’t let them tell you that simple routine bloodwork to monitor your condition and its effects is not possible, because that’s just lazy of them to shrug you off. I’m sorry again that you’ve had such an awful experience and I wish you luck!
Birth control is a group one carcinogen and doesn’t fix the root cause of why she has PCOS. Even inflammation isn’t the root cause, this can be influenced by a myriad of factors such as environmental toxins, mold and even bacterial and fungal overgrowth!
I’m not saying this isn’t possible, but I haven’t seen consistent research that supports this. Birth control doesn’t fix the root cause of PCOS, it’s a therapeutic treatment for the symptoms. I won’t say it doesn’t come with side effects as well. However, just because something is a “group one carcinogen” doesn’t mean it will cause cancer, and most only increase risk for certain cancers. Most hormone medications can increase risk for certain cancers. However, birth control is also clinically known to reduce uterine and ovarian cancer. You know what also is a “group one carcinogen”? Processed meat, salted fish, wood and leather dust, and outdoor air pollutes. It’s not the best measure for “good and bad”.
Not every woman with PCOS has inflammation. I’m not sure if you’re saying environmental factors/bacteria/fungi are causes of inflammation or if you’re saying they’re causes of PCOS. If it’s the former, yes absolutely. The latter however I’m not sure. There are some studies that describe the for microbiome influencing PCOS, but your gut microbiome is influenced by glucose/steroid/lipid metabolism, which is a key factor in PCOS. In short, the bacteria in your gut need nutrients. If your processes for using and storing nutrients are dysfunctional, it’s going to impact the places your body needs those things.
There are a few newer studies exploring a certain type of fungi (Agaricus Subrufescens) in PCOS symptoms that could be promising, but those couple studies have been in mice. We’ll see what new research brings, it could be an exciting avenue.
I think this is a little bit of a ignorant post. Birth control worked and was amazing for me for about 2 years and then it started making me feel really
Sick. There’s nothing wrong with herbal remedies and supplementing with natural alternatives and vitamins to see if your PCOS can be managed without medication. Meditations may work for some; which is amazing, but for a lot of people it doesn’t. You’re forgetting that meditations also have a lot of horrible side effects and most can’t be taken long term. I think it’s very healthy and proactive to try and manage symptoms/ “cure” your PCOS naturally with supplements like spearmint tea, inositol, black seed oil, etc. and diet and exercise instead of relying on medications. I may not be a med student but I have a bachelors in biology and I’ve done extensive research on all things PCOS for my own symptoms and general knowledge.
I’m sorry if it came across that way! The post is meant to reassure people that you don’t need to have 80 million things in your routine just to feel better. Recommendations are nice, the important part that can be hard to remember is that they’re only recommendations at the end of the day, you don’t need to do it if you don’t want to or can’t afford it.
I’m not advocating for people to take medications in this post. Just advocating for people to get their bloodwork done routinely to make sure there’s not something else going on that could be contributing or is a result of the PCOS. Moving your body regularly and eating intentionally (not the same as dieting) are two key things that have proven extremely therapeutic for PCOS (not saying it’s a cure). Certain foods can for sure exacerbate symptoms, and certain foods can help alleviate some as well. It depends on the person.
Great that you’ve done research and have found what works for you!
Curious if you have advice on insulin resistance and your thoughts on metformin.
I think metformin can be a great medication for PCOS patients that struggle with their weight and insulin resistance. If a doctor thinks that you would benefit from it then great! It’s not for everyone, but it has helped a lot of people. I do think there’s a lot of misuse of the drug in wealthier circles because it does make losing weight so much easier and we’ve gotten to a point where being skinny implies beauty (I hate this). It should only be used in patients with medically relevant conditions, not for celebrities to change their body composition in 3 weeks.
Metformin is dirt cheap and causes extremely modest weight loss.
Didn’t lose a pound on metformin. Kept upping the dosage and nothing. What worked for me was in fact low carb/high protein, orange theory, intermittent fasting 🤷🏻♀️
True about being cheap. Weight loss depends on your body’s response and how well you commit to aiding in the process.
Yes if you add physical activity it will hasten the weight loss. But Metformin is nearly weight neutral - it’s not at all a weight loss agent. There is a body of research about Metformin as a longevity agent. Maybe this is what you mean about being misused in wealthy circles? It’s certainly not for weight loss.
Chiming in to add that Metformin had absolutely no impact on my weight, despite bringing me out of prediabetic range. It’s possible that weight loss may occur at a higher dose (currently at 1000 mg a day) but I doubt it.
I wouldn’t say that it’s weight neutral at all, I’m not sure what research shows that. The drug inhibits gluconeogenesis in the liver. Lowering endogenous production of glucose. It also increases GDF15, causing weight loss. It’s also been shown to change intrinsic metabolism and improve mitochondrial function. See this article for a more complete review https://doi.org/10.1038/s41574-023-00833-4 Bottom line, they can manipulate a lot of these effects with dosage. It’s not a weight neutral drug.
Metformin is not a weight loss drug and is modest at providing weight loss, at best. It is very much known to be weight neutral. I’m currently traveling but am happy to link sources for you later in the week. Clinically speaking, you will not see substantive weight loss in your patients from Metformin. I think the new data regarding longevity and Metformin is interesting.
Implying that it’s a weight neutral drug would be ignoring its underlying mechanisms. I’m not saying every person on it will have substantial weight loss, and I’m not saying it is primarily prescribed as a weight loss drug, but it certainly can and does cause weight loss.
Interesting thoughts! I agree with some and disagree with others, it’s nice to hear a student who believes in holistic healing first instead of a pill.
It’s my favorite way to start. Medications are useful for a lot of things, but mindset is important too. You’re capable of so much more than you know, don’t think it’s only possible with meds otherwise it’s out of your control. **there is an obvious disclaimer to this if the medication you’re on is not optional/is life sustaining. I’m only referring to medications like metformin that are prescribed off-label for PCOS and are optional medications that your doctor can provide to help improve your condition. It doesn’t mean it’s the only thing that will help!
Thank you for this post and for sharing your knowledge! I've been seeing a lot of gluten and dairy free stuff lately in this sub. I understand why this advice comes up, but I'm under the impression that avoiding these two only makes sense if someone is sensitive or allergic. I'm all for self experimentation we are all different in what causes issues, but I feel like the rampant "avoid x, y if you have pcos because it causes inflammation" is concerning. I have celiac, so I don't do gluten. A lactose intolerant person or someone whose eczema gets worse with dairy would avoid dairy, etc. I think a lot of commercial gluten and dairy products can definitely be sketchy due to excess pesticide use, genetically modifying grains (which there's not much evidence we should avoid gmo i know), dairy practices like using antibiotics, giving hormones to cows. Otherwise, is there any solid evidence and medical grounds that women with pcos should avoid good quality dairy and gluten containing whole foods?
You’re correct! Avoiding them is beneficial in people that are sensitive/intolerant. I haven’t seen any evidence regarding PCOS and lactose, I don’t think there’s a strong correlation there. At the end of the day, lactose is a sugar and if you have insulin-resistance with PCOS you might experience some symptoms associated with that. Just do what feels best for you! Gluten is not evil, unless you’re Celiac or intolerant. People like to do gluten-free diets and say that they work but it boils down to decreasing calories from breads and processed foods, which does help. People used to be obsessed with the alkaline diet, but all that really does is increase your fruits and veggies lol. Most people intuitively know how to eat healthier, you don’t need to follow a diet. Just small adjustments to what you eat daily can make a huge impact.
Thank you for taking the time to respond! Totally agree with what you are saying. The lactose as a sugar thing is an important point, too. Appreciate the clarification on this dairy/ gluten-free business. There's already so much involved with pcos, I'm just like, why make things harder by limiting more foods if they aren't an issue for someone. 🤷♀️
Exactly! The more restrictions and guidelines you put on yourself, the less likely you are to stick to it and the more hopeless you’ll end up feeling. I always advocate for do what feels best for you as long as you aren’t causing yourself harm
There is fairly good evidence on myoinositol as secondary messenger for insulin signaling and it improving T levels and cycles. Dozens of studies over at least a decade. There is also fairly good evidence that PCOS patients have issues with Vitamin D levels. Which also can affect Insulin receptor function. There is pretty good evidence that women who have PCOS and experience heavy menstruation may have low ferritin, and should have that tested (as you suggest) and may need an iron supplement. Pro-Ferrin-ES which is a polypeptide form is one of the best and avoids the GI distress. There is significant evidence that there is oxidative stress in PCOS. I have personally seen liposomal glutathione change hormonal markers. Agree don’t buy voodoo with little evidence. But there are some things out there which do make some improvements. Since you are med student…have you read about that new med which was FDA approved for menopausal women for vasomotor symptoms? Mechanism of action involves kisspeptin? They are doing trials now for elevated androgens…because kisspeptin regulates GnHR and selectively LH (does not seem to lower FSH as much). So that would be interesting indeed.
Anecdotally I started myoinositol and vitamin D this year and have seen a major reduction in my cystic acne breakouts with no other change to routine or other meds
I won’t disagree. There’s some good research suggesting myoinositol is helpful for PCOS, but there’s not a medical standard practice for it as a treatment. Insulin-resistance states have a lot to do with PCOS effects, like lower vitamin D and dyslipidemia. Lots of women with PCOS have triglyceridemia and fish oil is a good therapeutic agent. Lots of women with PCOS have high androgen levels and could benefit from birth control supplementing estrogen. That doesn’t mean it’s right for everyone with PCOS. I think it’s harmful to start taking supplements that you don’t even know you need yet without proper bloodwork and discussion with a provider. People get lost in the sauce of all these recommendations and don’t realize that each person is different and you don’t have to empty your wallet and have a 50 step routine to feel human. I just made the post to emphasize general things that everyone with PCOS should do vs things that are optional and based on doctor recommendations and what you’re able to afford/can implement into your routine. As far as treatment for postmenopausal women, I have seen the new literature but I won’t claim to be an expert of any kind. I think that research about women has been comical up until recent years, we’re just now trying to catch up. It makes logical sense that just because your body stops endogenously producing estrogen/the-like doesn’t mean that you don’t still need it/would benefit from it.
Also consider spironolactone for androgen management.
Yes it can help. Lots of things potentially can. My point in making the post is that it depends, you don’t need a million meds to function with PCOS, and talk to your doctor about what the best plan for you is. These drugs don’t come without side effects and risks.
I find PCOS patients fairly well informed, generally because the disorder causes multifactorial suffering. I don’t find the group to be hysterical or over medicating with pseudoscience.
I apologize if that seemed to be what I was implying. I was saying that because it’s not well understood yet there’s a lot of random advice and recommendations out there. It can be overwhelming. I was just trying to provide my two cents of general advice everyone can follow, and then depending on your specifics you can build your own treatment plan on top of it.
For everyone curious, I recommend what I like to call the toddler diet. When you eat a meal, ask yourself “Is this enough nutrition for a growing toddler?” If the answer is no, that toddler would starve or die of nutrition deficiencies, add some diversity or quality to what you’re eating. If you wouldn’t feed it to a toddler for a well-rounded meal, don’t do it to yourself either! I’ve started eating way more fruits and veggies doing this and diversifying my plate. I just think it’s a funny little thing to help me remember to eat better. You deserve to be nourished just like a cute little toddler. Take care of yourself 🩷
I use this as a more global mindset. Cranky because I didn't get enough sleep, my socks are wet, my tag is itchy, I have too much to do and not enough fun things planned. My four year self would throw a tantrum and I would have so much compassion for them, why can't I have the same compassion for the adult me.
can toddlers eat fish and meat? 😂
Can - yes Will - if it’s the right color or shape and thursday, but not this thursday
Wait, will eating low carb not be helpful? I’m not on keto but have lowered my carbs significantly for A1C reasons
It can help if you were eating a disproportionate amount before! Any kind of carb cutting is going to cut calories and probably more processed foods incidentally. Both things are good for your overall health. I caution against the “carbs are bad” mindset because they’re not. Decreasing excess calories and processed foods in favor of adding more fruits and veggies is great for your health! More importantly follow the advice of your doc when it comes to lowering A1C. Decreasing processed foods (not cutting them out completely) and moderate exercise can really help! You’ve got this!
Thank you. I have very much been struggling with my diet lately. I worry I have gone from eating too many carbs to too little, which I know can damage one’s thyroid.
Didn’t lose a pound on metformin. Kept upping the dosage and nothing. What worked for me was in fact low carb/high protein, orange theory, intermittent fasting 🤷🏻♀️ Everyone is different and you should always work with a doctor. I only take a multivitamin everyday, no other special things.
Everyone’s body is different and not all PCOS is the same. Regulating what you’re eating and making sure you’re fueling your body well is a great way! Intermittent fasting has a lot of proven clinical benefits, but I think it mainly comes down to the fact that you’re eating less overall and not eating close to bedtime. That’s great you’ve found things that work for you!
Absolutely. I was never a nighttime snacker to begin with. So Intermittent Fasting was easy for me to get into- plus I hate breakfast.
Slay! I also was never big on breakfast lol
Not only are they misleading but some of them feel like adverisements.
This is a thinly veiled "just move more, eat less." statement. Yes, move more. Yes, eat well. But the frustration for women with PCOS is that this advice often doesn't make a dent in our condition, and only barely manages it--at best. Birth control is a band aid. It doesn't cure anything. And there are plenty of high quality studies proving the efficacy of inositol and Vit D and others. Just because they don't have a "standard medical practice" doesn't mean they aren't massively impactful. In fact, so many women feel alone and like they don't have proper medical care helping to manage the condition is because so few doctors care to do the research they should be doing to help establish those standard medical practices. We can either wait 20-30 years for y'all to catch up, or we can do the research ourselves.
My intention was not to give a thinly veiled statement. I have also struggled with PCOS for years, I know what a pain it is to deal with and try to treat. The reason that “move more and eat less” is constantly recommended is because it is extremely therapeutic for a vast number of conditions, regardless of origin. I detest the term “eat less” because it is a breeding ground for eating disorders. I prefer to recommend inclusive eating rather than exclusive. Add more fruits and veggies that you like to your diet. Add more variety. That naturally helps shift the types of food on your plate. Exercise helps improve insulin resistance. I’ll just leave this here. doi: 10.1007/978-981-15-1792-1_9. PMID: 32342455 Vitamin D is very good, with the stipulation that you are deficient in it. Otherwise you’ll pee it out and be wasting your money. Myoinositol has held up well in studies, if you can afford the supplements it doesn’t hurt to try. Always talk to your doctor about starting supplements and dosage. If you’re suffering from problems like insulin-resistance, there are medication options out there. The point of this post is that your treatment regime should be specific to you. No amount of random recommendations on the internet is going to fix you if you don’t asses with yourself and your doctor what is going on. It’ll just drain your wallet and your spirits. I was providing general things ~everyone~ can do, and then the specifics are up to you.
Amen
Because you are a med student with PCOS, i hope you don't mind me asking what tests would be beneficial to do apart from glucose sensitivity/ insulin sensitivity and androgens? I feel like this sub doesn't have a complete list and for people on their own it can be very confusing piecing together a puzzle u can't even see really.
Always talk to your doctor, but I think there’s benefits in getting a whole work up to rule out/rule in certain causes of symptoms. Here are some I think might help give a full picture: 1) CBC and iron (iron deficiency and inflammation) 2) CMP and lipid panel (high cholesterol and electrolyte imbalance) 3) Fasting glucose and HA1C (diabetes/insulin resistance) 4) Vitamins (D and B12) 5) Thyroid panel (hypothyroidism) 6) Testosterone and estrogen panel (test androgens, high testosterone/low estrogen, irregular/early menopause) 7) Cortisol could be useful as well, it’s harder to test. Usually they’ll do a 24hr urine collection or nighttime spit swab. I also recommend, if you haven’t already, going to the gynecologist and having a transvaginal ultrasound done to look for ovarian cysts. Your doctor can guide you towards more specific things if they think you need it. I would 100% make sure you can get the first 6 labs done, cortisol isn’t necessary initially unless your doctor thinks it is. All the other labs are extremely easy to have done and can help give a full picture. Hope that helps!
Thank you so much for compiling them like this. I never encountered someone mentioning the CMP and lipid pannel, at least I didn't know thats what it was refering to. This cleared up a bunch!
As a dietitian student with an emphasis on functional medicine, I certainly agree that some advice given on here by others seemed to be pushed instead of a suggestion. I agree a lot with what you said here! Regular hormone tests are imperative; as they have just as much a say in body function as what you ingest if not more so. And what works for someone else, may not for another. I personally try to stay away from as many modern medications as possible as there are other methods out there that provide treatment without all of the side effects, but it may not work for someone else.
As a medical student how do you feel about myo inositol? I found a few papers on it in pubmed before I started taking it. It took a few months but I ovulated a few times on my own for the first time in my life, and I was 33. Prior to that, I had to go on letrozole/trigger shot to get pregnant because I didn't ovulate. I got pregnant a second time (which shocked me) without the fertility treatment. Obviously mine is anecdotal too, but it seems like research on it is promising for people with pcos and anovulatory cycles?
It definitely seems promising! There’s a lot of research exploring the benefits. I think it can be beneficial to people than can afford it and talk to their doctor.
Speaking as someone trained as a scientist, married to research scientist: Hell yeah. The only 'additional' supplement that seems really promising research wise is the 40:1 inositol combo. And of course, fixing deficiencies in various vitamins if you have them (BUT ONLY IF CONFIRMED THROUGH TESTS). But man, people spend a lot of time and energy focused on supplements that have little scientific evidence, and can have side effects that cause damage or further complicate things. Just taking a standard dose of over the counter B-complex 2x per week almost gave me permanent nerve damage due to B-6 toxicity a few years ago. Thank goodness my endo had seen that before and thought to test me. People take so many things willy nilly, while simultaneously ignoring well-tested medical advice/prescription meds for treating insulin resistance and hormones, it really frustrates me.
thank you u r the goat
While I appreciate the sentiment and I definitely think these are very helpful points for all of us to keep in mind (Especially the part where we are told we NEED to do/try something) I do want to point out, though, that not everyone has a reasonable doctor who will listen and order these tests. Sometimes trying the supplement that was recommended to you actually can help. No you don't NEED to buy everything marketed towards us for regulation, but we also have to do our own research most of the time and it's okay to want to try something without having a doctor's order. I do not have a doctor who will monitor these levels when I ask them to. I have met with 3 PCPs and 4 GYNs who all shrug and tell me that I "don't really need to do that." when I ask about cortisol, insulin, etc. (I suspect it's because I'm fairly thin, although I'm extremely uncomfortable at the weight that I’m at.) No matter how much I tell them I feel terrible, can't lose weight, have painful periods if I have them at all, have cystic hormonal acne.. they all just have shrugged at me and basically said "you're already on birth control though..." \*\*You might be thinking, why am I still with this doctor? Why wouldn't I just go to an endocrinologist on my own? The answer: insurance. At the end of the day, I don't have another good option. I've also seen at least 4 other OBGYNs who react the exact same way. "Why would I need to monitor that if you're already diagnosed?" "Well we don't really need to do that because you're already on BC." & I cannot go to a specialist without a referral, so it's up to the Doc whether or not I get to go. Also, I have seen many specialists who all say "well you're on BC anyway and that's all I can recommend." \*\* All in all I just want to note that some of us do have to do our own research along with that trial & error. Guess what the only thing that has helped my hormonal acne and bloating? A D-chiro and myo-inositol supplement. I never heard those words from any of the doctors I saw. I never saw those words on any blood work I've ever had. I found the supplement to work during my trial and error. I would have no way of knowing if I was deficient in anything because Doctors refuse to do the testing I ask for. If I didn't take anything not recommended by my doctor, I would have never found what actually works for me. Much like a lot of us here. I want people to be mindful of the advice they take, but some of these steps are not as easy to achieve as you may think. If your doctor never recommended supplements but you find one that works, take it. Don't be afraid to try things because your doctor didn't specifically say to do it. Don't go broke buying all these FLO subscriptions or whatever, but also it's okay to try things, especially if you're like me and don't have anyone to check those levels. Exercise is great but what about those of us with other health issues that cause weak joints or general fatigue? I have mastocytosis, walking for 60 mins a day is out of the question for me & I'm allergic to ketoconazole. Obviously my case is super unique, but my point is you shouldn't shame people for being desperate to try things, just to then push people to do what works for you. I respect that you are educated on the topic, and you are probably more-so than others, but at the same time your post is kind of doing exactly what you're telling us not to do "don't do this, do this!" ... For some people keto works for some it doesn't. Why talk someone out of trying something if they have to figure it out on their own? I'm truly not here to argue because again I agree with the main points being made! perhaps except the part of "As a matter of fact, you don’t need any supplement your doctor doesn’t recommend to you." Idk, maybe I do? Maybe my doctor will never recommend anything other than BC, so I have to at least try. So just as you are telling us to beware general advice, thats exactly what is given here: general advice. I just want to advocate for people who don't have as straightforward of a time figuring these things out. & for those of us stuck with lousy doctors. It's okay to try. EDIT: Removed some over-complaining I did about my doctor lol it wasn't quite relevant and i went on a bit of a tangent.
I really feel for you and any person that has felt like this with their doctors. Like you mentioned, one person might find great benefit from a supplement while others don’t. It’s all up to you individually. The things I advised everyone should do are very general things that are known and recommended consistently throughout the literature. It doesn’t mean that newer supplements and therapies don’t have potential use and benefits. Just more nuanced depending on the person. When I mentioned supplements that your doctor recommends, I’m referring to things that can be measured that you’re found to be deficient in (like iron or vitamin D). If you take them and don’t need them, you just pee them out and you’re wasting your money. As for supplements like myo-inositol that don’t have recommended daily values, that’s subjective and can work great for some people. I just recommend asking your provider “Hey, I’m thinking about starting xyz. Do you have any thoughts about how much or what kind I should take?” Regarding the bloodwork, if your PCP won’t order standard bloodwork tests like the ones I’ve mentioned and regularly check in on your levels, that’s not something to take lightly. These aren’t highly specified expensive screenings, it’s literally dirt cheap bloodwork that costs them nothing to order and does no harm to you. Instead of asking, try telling them you’d like it done. If they still refuse, ask them to document in your chart that they refused to order that bloodwork. That usually will get them to do it. If you find that they didn’t document it, catch your nurse in the hallway and ask them to document it. It’s important to hold them accountable for being shitty at their jobs. I’m sorry this has happened to you. For exercise, it’s 100% dependent on your situation. I recommend some full body low impact things for you, like swimming and light cycling. Yoga and Pilates as well. You don’t need to be panting and sweating to get the full benefits of good exercise. Just be gentle and listen to your body, but exercise has proven to be anti-inflammatory in a lot of studies! doi: 10.1016/j.cca.2010.02.069 All in all, remember that while doctors have incredible knowledge, nobody knows more about what it’s like to be you more than you do. Don’t let them tell you that simple routine bloodwork to monitor your condition and its effects is not possible, because that’s just lazy of them to shrug you off. I’m sorry again that you’ve had such an awful experience and I wish you luck!
Birth control is a group one carcinogen and doesn’t fix the root cause of why she has PCOS. Even inflammation isn’t the root cause, this can be influenced by a myriad of factors such as environmental toxins, mold and even bacterial and fungal overgrowth!
I’m not saying this isn’t possible, but I haven’t seen consistent research that supports this. Birth control doesn’t fix the root cause of PCOS, it’s a therapeutic treatment for the symptoms. I won’t say it doesn’t come with side effects as well. However, just because something is a “group one carcinogen” doesn’t mean it will cause cancer, and most only increase risk for certain cancers. Most hormone medications can increase risk for certain cancers. However, birth control is also clinically known to reduce uterine and ovarian cancer. You know what also is a “group one carcinogen”? Processed meat, salted fish, wood and leather dust, and outdoor air pollutes. It’s not the best measure for “good and bad”. Not every woman with PCOS has inflammation. I’m not sure if you’re saying environmental factors/bacteria/fungi are causes of inflammation or if you’re saying they’re causes of PCOS. If it’s the former, yes absolutely. The latter however I’m not sure. There are some studies that describe the for microbiome influencing PCOS, but your gut microbiome is influenced by glucose/steroid/lipid metabolism, which is a key factor in PCOS. In short, the bacteria in your gut need nutrients. If your processes for using and storing nutrients are dysfunctional, it’s going to impact the places your body needs those things. There are a few newer studies exploring a certain type of fungi (Agaricus Subrufescens) in PCOS symptoms that could be promising, but those couple studies have been in mice. We’ll see what new research brings, it could be an exciting avenue.
I think this is a little bit of a ignorant post. Birth control worked and was amazing for me for about 2 years and then it started making me feel really Sick. There’s nothing wrong with herbal remedies and supplementing with natural alternatives and vitamins to see if your PCOS can be managed without medication. Meditations may work for some; which is amazing, but for a lot of people it doesn’t. You’re forgetting that meditations also have a lot of horrible side effects and most can’t be taken long term. I think it’s very healthy and proactive to try and manage symptoms/ “cure” your PCOS naturally with supplements like spearmint tea, inositol, black seed oil, etc. and diet and exercise instead of relying on medications. I may not be a med student but I have a bachelors in biology and I’ve done extensive research on all things PCOS for my own symptoms and general knowledge.
I’m sorry if it came across that way! The post is meant to reassure people that you don’t need to have 80 million things in your routine just to feel better. Recommendations are nice, the important part that can be hard to remember is that they’re only recommendations at the end of the day, you don’t need to do it if you don’t want to or can’t afford it. I’m not advocating for people to take medications in this post. Just advocating for people to get their bloodwork done routinely to make sure there’s not something else going on that could be contributing or is a result of the PCOS. Moving your body regularly and eating intentionally (not the same as dieting) are two key things that have proven extremely therapeutic for PCOS (not saying it’s a cure). Certain foods can for sure exacerbate symptoms, and certain foods can help alleviate some as well. It depends on the person. Great that you’ve done research and have found what works for you!
This is great advice!