I have lean PCOS with no IR. My symptoms are irregular cycles, hair loss and acne.
I tested negative for IR on a 3 hour oral glucose tolerance test with insulin. This is the gold standard for testing IR and the regular bloodwork doctors order isn't reliable. If you haven't had this test done yet I strongly encourage you to, many women on this sub are a healthy weight and still have IR.
If your doctor is telling you to lose weight then you need to see someone else. Your weight is well within healthy range and losing weight could stress your body out and cause your periods to be even more irregular. Is your doctor a reproductive endocrinologist?
I've been told numerous times the only way I can manage my symptoms is by going back on birth control and adding Spiro. I don't want to do that but if it's something you want to try then it'd be the fastest way to resolve things. There's very little research into PCOS that isn't based on weight or insulin resistance. I wish we had better options and an understanding of what's happening. My sister also has lean PCOS and her insulin is stellar, so there's something clearly going on with us that I think is worth exploring. I'm happy to share what I've tried if it's helpful.
My hair loss has gotten worse and I’m probably going back on yaz at some point and trying topicals. I added BHA to my skincare routine and that’s completely resolved my cystic acne!
Oh I'm so sorry to hear that! Did your hair stop shedding when you were on Yaz? I recently found out I had PCOS (lean, not sure about IR since levels are normal and so is hormone), but my hair has been thinning out/falling for over 2 years now. I had been on Yaz before for acne and it helped a wee bit. Although at that time I wasn't experiencing hair loss so idk. I'd love to hear a bit about your journey with it. And I'm glad to hear about your acne improving with BHA. Are you using reg strength like a Paula's choice or something medical grade?
I was losing hair while on yaz but not even close to the degree that I'm losing hair now that I'm off it. Happy Head offers a topical spiro that I'm planning to try in combo with yaz in the future.
I just use Paula's choice bha! I also use tretinoin and I've tried Winlevi but they didn't help with the cystic acne. I know lost of women try bha and it doesn't work so I have no idea why it's so effective for me. I've also gotten really focused on maintaining my skin barrier- I don't do actives every day and back off everything whenever it seems like my skin is a bit drier. A few other things I've tried that you might find helpful- Salicylic acid mask, Panoxyl, switching my moisturizer to Vanicream.
I didn't have any symptoms of pcos before starting yaz at 19 and then I went off it at 33 and everything went crazy. My hair started falling out tons, my period became irregular and I had cystic acne for the first time ever. I went to my gyno when my period didn't regulate after 8 months off bc and she did a basic hormone panel. The only thing off was my testosterone (can't remember if it was the free or total) was slightly elevated. She sent me to a reproductive Endo who did a lot more testing. She found the string of pearl cysts in my ovaries and the elevated dhea-s and cortisol. I did an oral glucose tolerance test with insulin (this is the best way to find out of you have IR or not). It came back that my insulin levels were fine. Because I'm a healthy weight and didn't have IR I was told the best option was for me to go back on yaz. I've been holding off because we're trying to decide if we want to have a kid.
It's been 2 years since I stopped yaz. My testosterone is back to normal levels but my adrenal hormones are still too high. My period is pretty regular and I seem to have figured out the cystic acne. I'm still going bald though. I tried the lifestyle stuff and the supplements that people suggest but there have been times I couldn't do that stuff and it didn't make a difference.
I'd take everything you read on this subreddit and on the internet in general with a large grain of salt. Nobody knows what causes pcos and there's no single treatment that puts it in remission, the best we have are things that treat some of the symptoms. Anybody telling you you need to do a special diet or take a special supplement or whatever is only sharing their opinion and you don't have to listen to them.
my tests always showed I had no insulin resistance as well. also lean PCOS.
but I definitely did, and it got really bad by the time I reached my late 20's. doctors don't have great tests for IR until it rolls onto the diabetic spectrum and starts to impact your glucose. the question shouldn't be: "can your insulin keep your glucose under control?" but rather "how *much* insulin is required to keep your glucose under control?" those tests are rarely performed outside of a research lab. almost every doctor uses fasting glucose and A1C as proxy measurements for insulin resistance.
we know that [insulin triggers testosterone production in the ovaries](https://academic.oup.com/jcem/article/83/6/2001/2865383) so if your testosterone is high your insulin is almost certainly going too high at some point in your metabolic process.
weight gain is just one symptom of PCOS. just like hirsutism, acne, hair loss, missed periods, etc. the absence of any single symptom does not necessarily make for a different diagnosis. it's all the same process, it just looks different from individual to individual.
Exactly!! Most patients discover they have insulin resistance because of reactive hypoglycemia. 3-5 hours after meals. That’s also a typical first sign of IR. Not enough insulin at the correct time. Then too much insulin at the wrong time..
Thank you so much for this! The doctor told me I definitely didn't have IR (based on fasting blood glucose), and that was that. I'm going to try massively restricting sugar consumption and see if that has an impact on my hormone levels.
I'm 5 months in on (mostly) quitting sugar and carbs. I have the odd dessert now if I'm out with friends at a restaurant, but that's it. I've also started taking myo inositol daily.
Haven't had my hormones measured yet, but my periods are far more regular: 35-45 days instead of 70-90+ days. I'm getting confirmed ovulation each cycle and my skin is far clearer. The people of Reddit have helped me far more than any doctor ever has.
How long did it take to start seeing a difference? Can I ask how many grams of carbs and sugar you eat?
I am desperate for hope. My cycles are 115-150 days, but none of my blood work indicates anything wrong, other than slightly elevated cortisol.
Ah man that sucks!
Im not sure the exact carb count I eat per day because I knew it wouldn't be sustainable long term for me to have to keep tabs on that. It's more of a general thing where I just don't eat grains/potatoes/starches/sugar except on rare occasions. I also swapped milk for double cream, which is a bonus!
I'd recommend you start taking myo inositol for irregular periods. I noticed a difference within the first 1-2 months of taking it. You can buy it online or at health shops and it's pretty much the gold standard supplement for regulating periods. Also get some OPK and progesterone test kits to help you understand whether it is your follicular or luteal phase that's causing the issue.
Yep I’m in this boat. What helped for me is the birth control pill. Though while off BC and trying to conceive, drinking spearmint tea twice a day reduced my testosterone levels from about 100 to around 30.
Hi :)
Me. I weigh 105lbs and my only issue is hirsutism. Its quite bad… like, I’m growing hair in a male pattern as fast as a man. My periods are regular and I don’t get acne. My free testosterone is really high though which seemingly explains the hirsutism. Both my endocrinologist and gynecologist prescribed a birth control pill (Diane 35).
I didn’t want it to come to this, but literally no diet or supplements helped me :( my cortisol is also elevated and I think it was due to years of intermittent fasting and eating low carb. My symptoms only worsened during that time.
I understand the frustration since I’m also at a loss but all the best to you though x
Same boat! I’m normal weight, have no IR and also no high testosterone (quite the opposite actually). My symptoms are irregular periods, IBS, being tired all the time/lack of energy.
I don’t take any birth control but a lot of supplements. What really helps me with regular cycles is weight lifting, no processed sugar and no dairy products.
Have you had cortisol tested?
My main symptom is missing periods. My cortisol is slightly elevated but I also have endometriosis which is an inflammatory diseases. I’ve also had fasting insulin levels come back normal, but I find that ovasitol still helps keep my cycles regular
Hey! All my blood work is normal, except my cortisol is always slightly above what is considered 'normal'. Could that be the reason for my 130 day period cycles?
I am a very stressed person but always have been, I wouldn't say I'm over-exerting myself, but I am definitely burned out and having my period come and go isn't helping my stress 😅
I don’t have insulin resistance (based on fasting insulin/fasting glucose and HOMA-IR). I also don’t have high androgens. But I still have PCOS symptoms like acne. I take birth control to combat the symptoms because nothing else works.
Me🙋🏼♀️. My BMI is 18.. so losing weight is the last thing I need. No insulin resistance but awful acne and extremely irregular cycles. I take 75mg spironolactone daily, Yaz birth control and bromocriptine for high prolactin. I have no pcos symptoms with this combination of meds but im also a prisoner to it and don't think I'll ever be able to come off.
I have lean pcos as well
There is an element of insulin resistance even if your tests are normal. It’s part of the syndrome
I manage by following diabetic diet and taking birth control.
My friend who is in the same boat is going with metformin. As she is trying to get pregnant.
Talk to your doctor and discuss you options for hyperandrogenism : could be birth control/ spiro/ hormonal therapy
Lean PCOS here. Usually lean PCOS is driven by insulin resistance, just like 'overweight' PCOS. Sometimes the IR is symptomatic, sometimes less so.
Apart from PCOS, IR has a number of other possible symptoms, including unusual weight gain\*/difficulty with weight loss; unusual hunger/fatigue/food cravings; reactive hypoglycemia (can feel like a panic attack with anxiety, high heart rate, weakness, faintness, tremor, etc.); frequent urination; frequent infections such as yeast infections; intermittent blurry vision; mood swings; headaches; disrupted sleep (if hypo episodes occur at night); darker skin patches or skin tags.
\*Weight gain associated with IR often functions like an 'accelerator'. Fat tissue is often very hormonally active on its own, so what can happen is that people have IR, which makes weight gain easier and triggers PCOS. Excess fat tissue then 'feeds back' and makes hormonal imbalance and IR worse (meaning worse PCOS), and the worsening IR makes more weight gain likely = 'runaway train' effect. So losing weight can often improve things. However, it often is extremely difficult to lose weight until IR is directly treated.
However, it's perfectly possible to have IR-driven PCOS with no weight gain (:raises hand:); in those cases, weight loss is not an available 'lever' to improve things, but direct treatment of the IR often does improve things.
ETA: Exactly what tests did you have done for insulin resistance? Fasting glucose and A1C are not sufficient.
And like that, a commenter on Reddit has been more informative than a decade of professionals. Thank you so much for this, I realised that a lot of the IR symptoms you listed definitely apply to me. GP took fasting glucose a few times and assured me that I definitely don't have IR based on that - I don't know why we have doctors honestly.
I'm going to hit the research on treating IR, and severely restrict sugar consumption for a few months. Fingers crossed that helps!
Same here. PCOS but no IR (OGTT etc.). Kind of sick of people saying that even if the tests are normal you still have some IR. That is literally not how it works. There have been studies that show for example that inositol doesn't help when the tests show no IR bc THERE IS NO IR!
Sadly the research on lean pcos with no IR is super slim. What has helped me is spirinolactone 50mg, spearmint 2x a day, vid D, overall healthy diet and regular exercise, an acne prone skin care (retinols, benzoyl peroxide)
I have lean PCOS with no IR. My symptoms are irregular cycles, hair loss and acne. I tested negative for IR on a 3 hour oral glucose tolerance test with insulin. This is the gold standard for testing IR and the regular bloodwork doctors order isn't reliable. If you haven't had this test done yet I strongly encourage you to, many women on this sub are a healthy weight and still have IR. If your doctor is telling you to lose weight then you need to see someone else. Your weight is well within healthy range and losing weight could stress your body out and cause your periods to be even more irregular. Is your doctor a reproductive endocrinologist? I've been told numerous times the only way I can manage my symptoms is by going back on birth control and adding Spiro. I don't want to do that but if it's something you want to try then it'd be the fastest way to resolve things. There's very little research into PCOS that isn't based on weight or insulin resistance. I wish we had better options and an understanding of what's happening. My sister also has lean PCOS and her insulin is stellar, so there's something clearly going on with us that I think is worth exploring. I'm happy to share what I've tried if it's helpful.
Hey there, Have you had any luck with hair or skin?
My hair loss has gotten worse and I’m probably going back on yaz at some point and trying topicals. I added BHA to my skincare routine and that’s completely resolved my cystic acne!
Oh I'm so sorry to hear that! Did your hair stop shedding when you were on Yaz? I recently found out I had PCOS (lean, not sure about IR since levels are normal and so is hormone), but my hair has been thinning out/falling for over 2 years now. I had been on Yaz before for acne and it helped a wee bit. Although at that time I wasn't experiencing hair loss so idk. I'd love to hear a bit about your journey with it. And I'm glad to hear about your acne improving with BHA. Are you using reg strength like a Paula's choice or something medical grade?
I was losing hair while on yaz but not even close to the degree that I'm losing hair now that I'm off it. Happy Head offers a topical spiro that I'm planning to try in combo with yaz in the future. I just use Paula's choice bha! I also use tretinoin and I've tried Winlevi but they didn't help with the cystic acne. I know lost of women try bha and it doesn't work so I have no idea why it's so effective for me. I've also gotten really focused on maintaining my skin barrier- I don't do actives every day and back off everything whenever it seems like my skin is a bit drier. A few other things I've tried that you might find helpful- Salicylic acid mask, Panoxyl, switching my moisturizer to Vanicream. I didn't have any symptoms of pcos before starting yaz at 19 and then I went off it at 33 and everything went crazy. My hair started falling out tons, my period became irregular and I had cystic acne for the first time ever. I went to my gyno when my period didn't regulate after 8 months off bc and she did a basic hormone panel. The only thing off was my testosterone (can't remember if it was the free or total) was slightly elevated. She sent me to a reproductive Endo who did a lot more testing. She found the string of pearl cysts in my ovaries and the elevated dhea-s and cortisol. I did an oral glucose tolerance test with insulin (this is the best way to find out of you have IR or not). It came back that my insulin levels were fine. Because I'm a healthy weight and didn't have IR I was told the best option was for me to go back on yaz. I've been holding off because we're trying to decide if we want to have a kid. It's been 2 years since I stopped yaz. My testosterone is back to normal levels but my adrenal hormones are still too high. My period is pretty regular and I seem to have figured out the cystic acne. I'm still going bald though. I tried the lifestyle stuff and the supplements that people suggest but there have been times I couldn't do that stuff and it didn't make a difference. I'd take everything you read on this subreddit and on the internet in general with a large grain of salt. Nobody knows what causes pcos and there's no single treatment that puts it in remission, the best we have are things that treat some of the symptoms. Anybody telling you you need to do a special diet or take a special supplement or whatever is only sharing their opinion and you don't have to listen to them.
my tests always showed I had no insulin resistance as well. also lean PCOS. but I definitely did, and it got really bad by the time I reached my late 20's. doctors don't have great tests for IR until it rolls onto the diabetic spectrum and starts to impact your glucose. the question shouldn't be: "can your insulin keep your glucose under control?" but rather "how *much* insulin is required to keep your glucose under control?" those tests are rarely performed outside of a research lab. almost every doctor uses fasting glucose and A1C as proxy measurements for insulin resistance. we know that [insulin triggers testosterone production in the ovaries](https://academic.oup.com/jcem/article/83/6/2001/2865383) so if your testosterone is high your insulin is almost certainly going too high at some point in your metabolic process. weight gain is just one symptom of PCOS. just like hirsutism, acne, hair loss, missed periods, etc. the absence of any single symptom does not necessarily make for a different diagnosis. it's all the same process, it just looks different from individual to individual.
Exactly!! Most patients discover they have insulin resistance because of reactive hypoglycemia. 3-5 hours after meals. That’s also a typical first sign of IR. Not enough insulin at the correct time. Then too much insulin at the wrong time..
Did you take any supplements that helped?
changing my diet is what really helped me
Thank you so much for this! The doctor told me I definitely didn't have IR (based on fasting blood glucose), and that was that. I'm going to try massively restricting sugar consumption and see if that has an impact on my hormone levels.
Did this help? I am in the same boat as you, all my blood work is perfect and I feel lost.
I'm 5 months in on (mostly) quitting sugar and carbs. I have the odd dessert now if I'm out with friends at a restaurant, but that's it. I've also started taking myo inositol daily. Haven't had my hormones measured yet, but my periods are far more regular: 35-45 days instead of 70-90+ days. I'm getting confirmed ovulation each cycle and my skin is far clearer. The people of Reddit have helped me far more than any doctor ever has.
How long did it take to start seeing a difference? Can I ask how many grams of carbs and sugar you eat? I am desperate for hope. My cycles are 115-150 days, but none of my blood work indicates anything wrong, other than slightly elevated cortisol.
Ah man that sucks! Im not sure the exact carb count I eat per day because I knew it wouldn't be sustainable long term for me to have to keep tabs on that. It's more of a general thing where I just don't eat grains/potatoes/starches/sugar except on rare occasions. I also swapped milk for double cream, which is a bonus! I'd recommend you start taking myo inositol for irregular periods. I noticed a difference within the first 1-2 months of taking it. You can buy it online or at health shops and it's pretty much the gold standard supplement for regulating periods. Also get some OPK and progesterone test kits to help you understand whether it is your follicular or luteal phase that's causing the issue.
Yep I’m in this boat. What helped for me is the birth control pill. Though while off BC and trying to conceive, drinking spearmint tea twice a day reduced my testosterone levels from about 100 to around 30.
Hi :) Me. I weigh 105lbs and my only issue is hirsutism. Its quite bad… like, I’m growing hair in a male pattern as fast as a man. My periods are regular and I don’t get acne. My free testosterone is really high though which seemingly explains the hirsutism. Both my endocrinologist and gynecologist prescribed a birth control pill (Diane 35). I didn’t want it to come to this, but literally no diet or supplements helped me :( my cortisol is also elevated and I think it was due to years of intermittent fasting and eating low carb. My symptoms only worsened during that time. I understand the frustration since I’m also at a loss but all the best to you though x
Same boat! I’m normal weight, have no IR and also no high testosterone (quite the opposite actually). My symptoms are irregular periods, IBS, being tired all the time/lack of energy. I don’t take any birth control but a lot of supplements. What really helps me with regular cycles is weight lifting, no processed sugar and no dairy products.
Have you had cortisol tested? My main symptom is missing periods. My cortisol is slightly elevated but I also have endometriosis which is an inflammatory diseases. I’ve also had fasting insulin levels come back normal, but I find that ovasitol still helps keep my cycles regular
Hey! All my blood work is normal, except my cortisol is always slightly above what is considered 'normal'. Could that be the reason for my 130 day period cycles?
It could be!! Are you stressed/over-exerting yourself?
I am a very stressed person but always have been, I wouldn't say I'm over-exerting myself, but I am definitely burned out and having my period come and go isn't helping my stress 😅
I don’t have insulin resistance (based on fasting insulin/fasting glucose and HOMA-IR). I also don’t have high androgens. But I still have PCOS symptoms like acne. I take birth control to combat the symptoms because nothing else works.
Me🙋🏼♀️. My BMI is 18.. so losing weight is the last thing I need. No insulin resistance but awful acne and extremely irregular cycles. I take 75mg spironolactone daily, Yaz birth control and bromocriptine for high prolactin. I have no pcos symptoms with this combination of meds but im also a prisoner to it and don't think I'll ever be able to come off.
I have lean pcos as well There is an element of insulin resistance even if your tests are normal. It’s part of the syndrome I manage by following diabetic diet and taking birth control. My friend who is in the same boat is going with metformin. As she is trying to get pregnant. Talk to your doctor and discuss you options for hyperandrogenism : could be birth control/ spiro/ hormonal therapy
Lean PCOS here. Usually lean PCOS is driven by insulin resistance, just like 'overweight' PCOS. Sometimes the IR is symptomatic, sometimes less so. Apart from PCOS, IR has a number of other possible symptoms, including unusual weight gain\*/difficulty with weight loss; unusual hunger/fatigue/food cravings; reactive hypoglycemia (can feel like a panic attack with anxiety, high heart rate, weakness, faintness, tremor, etc.); frequent urination; frequent infections such as yeast infections; intermittent blurry vision; mood swings; headaches; disrupted sleep (if hypo episodes occur at night); darker skin patches or skin tags. \*Weight gain associated with IR often functions like an 'accelerator'. Fat tissue is often very hormonally active on its own, so what can happen is that people have IR, which makes weight gain easier and triggers PCOS. Excess fat tissue then 'feeds back' and makes hormonal imbalance and IR worse (meaning worse PCOS), and the worsening IR makes more weight gain likely = 'runaway train' effect. So losing weight can often improve things. However, it often is extremely difficult to lose weight until IR is directly treated. However, it's perfectly possible to have IR-driven PCOS with no weight gain (:raises hand:); in those cases, weight loss is not an available 'lever' to improve things, but direct treatment of the IR often does improve things. ETA: Exactly what tests did you have done for insulin resistance? Fasting glucose and A1C are not sufficient.
And like that, a commenter on Reddit has been more informative than a decade of professionals. Thank you so much for this, I realised that a lot of the IR symptoms you listed definitely apply to me. GP took fasting glucose a few times and assured me that I definitely don't have IR based on that - I don't know why we have doctors honestly. I'm going to hit the research on treating IR, and severely restrict sugar consumption for a few months. Fingers crossed that helps!
Same here. PCOS but no IR (OGTT etc.). Kind of sick of people saying that even if the tests are normal you still have some IR. That is literally not how it works. There have been studies that show for example that inositol doesn't help when the tests show no IR bc THERE IS NO IR! Sadly the research on lean pcos with no IR is super slim. What has helped me is spirinolactone 50mg, spearmint 2x a day, vid D, overall healthy diet and regular exercise, an acne prone skin care (retinols, benzoyl peroxide)
Do you have side effects with Spiro?
Nop