Anyone with lean PCOS?

I was diagnosed 4 months ago. My doctor said I don't fit the PCOS norm but I have poly cystic ovaries. Currently I have poly cyst thats 3cm, high androgen & low estrogen, very painful and heavy cycles, thinning hair and hormonal acne and infirtility. I weigh between 105 to 110lbs i have never had a weight issue. And I have a 6 year old daughter. Im having a hard time trying to figure out how to help my body! Mainly my hormones get better! Nothing I read helps. Im not watching my sugar or insulin necessarily. Actually I'm hypoglycemic, just this week my blood sugar dropped to 64 and it's typically resting at 120. That was scary! So i have to make sure i get enough insulin but not too much...Does anyone have similair stories?

Replies

  • macchiatto
    macchiatto Posts: 2,892 Member
    Yes. My ob/gyn actually made that comment to me this morning (I slack and hadn't seen him in 3 years; didn't realize it had been that long!): "I forgot you have PCOS. You're not typical, since you're slim." However, I have to work hard at it; I gain weight easily if I don't eat low carb. I was also diagnosed w/prediabetes when I was technically a normal weight. I'm 5'7" and seem to do best staying in the 130s (goal range for maintenance is 130-133).

    I actually had hypoglycemia previously but my blood sugar stays more stable eating LCHF (after experimenting I plan to eat this way for life, not just for weight loss; I've been mostly maintaining since early 2016). Besides polycystic ovaries I've also had irregular and heavy cycles all along (better since having kids though, and even better when I eat low carb), frequent anovulatory cycles, hair growth, thinning air, and bouts of hormonal acne (just broke out again recently). I took Clomid when I conceived my twins, and 4 years later had an early miscarriage (I suspect low progesterone). I also have about 5 days of spotting before every period now.
  • stacicali
    stacicali Posts: 137 Member
    I am so glad you posted this. I've had PCOS since puberty but had a horrible time getting diagnosed since I "wasn't heavy and hairy." Symptoms are painful, heavy, irregular periods, oily skin (acne as a teenager), thinning hair (started in my 20s), and hypothyroidism that started in my 30s caused not by autoimmunity but I suspect by insulin resistance.
    I take Metformin 1000 mg twice a day, and this drug has worked wonders for me. I also take a variety of supplements like Inositol and alpha lipoic acid. I am still working on some symptoms like hair loss (Rogaine works but you have to stay on it forever.)
    Regarding the carb levels, low carb is great but can take some fine tuning to meet your individual needs. Here's an interesting article: https://chriskresser.com/the-3-step-process-to-determining-your-ideal-carbohydrate-intake/
    Soon I will post more links that I've found helpful while dealing with lean PCOS. I welcome you ladies and everyone else in this group to friend me! Together, we can fit these puzzle pieces together and take them to our doctors.
  • littefish2018
    littefish2018 Posts: 96 Member
    Hi you guys, I don't have the weight issues common with PCOS but have most of the other symptoms (rings of cysts around both ovaries, an unfortunate blossoming of thick hairs and on my chin, adult acne at 35, reversed numbers of LH FSH and a slew of other hormonal imbalances. I've been exercising (pilates, yoga and strength) and have noticed a normalization in my periods, will report back once I get a blood test on any major progress, but I definitely have noticed a lot of positive changes in my body and mind- the biggest are no acne and no more major mood swings out of the blue- so that's something! Good luck and this is such a great group for support and sharing
  • OneTwentyThree
    OneTwentyThree Posts: 189 Member
    edited December 2016
    Sugar that is typically resting at 120 is not normal. 120 is normal after you eat but within 2 hours should be lower than that. I suffer with hypoglycemia as well. It seems like this is a symptom of PCOS especially if you are a thin PCOSer.
  • bingo_007
    bingo_007 Posts: 101 Member
    Here. though the topic is quiet old. not sure if someone is still reading this o:)o:)
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    I don't know if the OP is still reading, @bingo_007 - but @stacicali is active here...and others pop in. Do you have specific questions or advice?
  • bingo_007
    bingo_007 Posts: 101 Member
    I just wanted to rant a bit. Even though my weight is ok despite pcos we have trouble to conceive n I was just told off by someone in my personal life that my pcos is not bad since my weight is fine.
    My advice with regards to food is that my maintenance is lower due to lower metabolism n that I need to eat about 5 to 10'percent less a day due'to this if I do not want to gain weight
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    Infertility is a minefield anyway, but I positively LOATHE people who judge on "invisible diseases." Sure, I'm one of the fat ones, but people don't know about or see my PCOS, IR, hypothyroidism, POP, BP issues, chronic tendon issues, limited mobility and all that - so obviously the FAT part is all because I'm lazy.

    It's just as awful on the flip side. Because you're thin, they can't SEE that you have parts of your body that don't function well or properly or in some cases AT ALL! That's like a thin diabetic..."how can you have diabetes, you're not fat, and you don't look sick!" Heck, some folks who have cancer don't look sick...

    GRR...

    I am so sorry that you are struggling to conceive, but many of the ladies here have a boatload of suggestions to help... There are a huge number of factors... If you have any more specifics, folks can offer more specific ideas.

    Basics are: get hormones balanced - inositol and vitex, as well as metformin sometimes, can help. Getting active, preferably with weights, can really help... losing weight can help some folks. Changing up foods can help. Treating any underlying conditions helps. There are many other supplements that if verified with testing can help meet nutrient deficiencies that are preventing different stages of fertility (from egg maturity to release to implanting to staying pregnant, etc.)...

    Sending you the best of luck!

    @Dragonwolf - Any ideas here?
  • Dragonwolf
    Dragonwolf Posts: 5,614 Member
    First, those people are jerks. I'm sorry you had to deal with that.

    Find what your hormonal imbalance is and work to treat that. Insulin, cortisol, lutenizing hormone, progesterone, testosterone, and estrogen all play a role, so make sure they're where they should be. Also, get your vitamin D levels checked, as it's another "master hormone" that's responsible for a number of other things.

    Check out things like "pregnancy diets" or whatever that have extra nutrition in them, and take a prenatal vitamin if you aren't already. Might also be worth supplementing magnesium if you aren't already, to build up your stores (there's some evidence connecting it with reduced morning sickness if you get extra before getting pregnant, and it helps in a ton of other processes in the body).

    I personally also recommend avoiding gluten grains as in my experience, they wreak havoc on the system, even if Celiac tests come back negative (I especially recommend it if you suffer from things like anemia, frequent headaches, or other signs of inflammation).

    I also second the Inositol. It's a B-vitamin, which like the others support our body's "communication channels" and can, independent of other factors, improve fertility. Vitex is good, too, but as I recall, you have to stop once you get pregnant, so be mindful of that and I recommend if you go that route, track your cycle with an app like Glow or one of the other options out there, so you know when you should be most fertile and when you might be pregnant (yes, even if you don't have periods, it is possible to get pregnant).

    That's probably a good thing to do (cycle tracking), anyway if you aren't already, since the cycles are still usually there, just not as obvious. It should also help you uncover which phases are wonky, which will help you work with your doctor.
  • bingo_007
    bingo_007 Posts: 101 Member
    Thanks for your input. my cycles are irregular but must cycles I ovulate. My clinic had hormones checked including thyroid n even hashimoto prior to starting any fertility treatment. I am currently on my first ivf cycle'hope it will be successful. So far all is ok just the'progesterone is low but I am taking medicine for that too.
    I think they checked some vitamins too but will ask next time I visit if not I think good to check on this too if not for this round than the next one ☺
  • LolaDeeDaisy23
    LolaDeeDaisy23 Posts: 383 Member
    Can we get our hormone levels checked with any primary care doctor? Or does it need to be with a reproductive endocrinologist? I put trying to conceive on hold at the moment, but the last time they did my bloodwork was with the ER.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    Can we get our hormone levels checked with any primary care doctor? Or does it need to be with a reproductive endocrinologist? I put trying to conceive on hold at the moment, but the last time they did my bloodwork was with the ER.

    @LolaDeeDaisy23 - As long as you're willing to pay, most tests are available without doctor request/prescription.

    The bottom of this page shows places you can order your own bloodwork.

    https://stopthethyroidmadness.com/recommended-labwork/

    Each lab has prices and such shown. Also, I think it is questdiagnostics.com or something near me that does this too. I think LifeExtension (the folks who make supplements, too), have their own sets of tests, too. I didn't look for the specific tests you might need on the list, but check between the sites, etc. If not, someone here might have a better option.
  • leahraskie
    leahraskie Posts: 260 Member
    Can we get our hormone levels checked with any primary care doctor? Or does it need to be with a reproductive endocrinologist? I put trying to conceive on hold at the moment, but the last time they did my bloodwork was with the ER.

    Your PCP can order them. Just let them know your diagnosis, why you need them checked and they can order them, just let them know what lab you plan on going to. My pediatrician ordered my initial labs that gave my diagnosis. Don't pay out of pocket for tests, you'll be spending like $500 on tests that are covered by insurance. Estogren, progesterone and testosterone testing isn't that cheap. I'm a lab tech btw.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    @leahraskie - Thanks for that! Somehow I completely misread @LolaDeeDaisy23 's original question...