Tentative PCOS diagnosis...so many questions

andisue50
andisue50 Posts: 26 Member
Hey ladies,

So, my doctor recently started me on Metformin saying she thinks I have PCOS even though my tests aren't necessarily consistent. I'm wondering if anyone else got a diagnosis like this? I'm only on 500mg metformin so far, but I am already starting to lose weight, so I'm hopeful. Here's my story:

Irregular periods/SEVERE cramps since 12yo. Started on BCP and pain meds as needed. Went off BCP about 2 years ago to try to get pregnant. Gained 20lbs despite no change in lifestyle. Have been through 3 rounds of Clomid and 2 rounds of Letrozole. I seem to ovulate at least some of the time, but don't make enough progesterone. I'm also hypothyroid. Testosterone is borderline high. I do keep getting ovarian cysts, but from my understanding these are different thany polycystic and don't think related to PCOS? Insulin is normal, though fasting blood sugar has been slightly elevated a couple times.

I have been taking Pregnitude for about a year, and it has helped greatly reduce the severity of my cramps. Does anyone recommend another myo-inositol supplement that is cheaper?
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Replies

  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    Pregnitude is a blend of myo and d-chiro inositol (and folate, I think). D-chiro is expensive and Pregnitude is a proprietary blend (ie - they came up with the ratios), which is why it's so expensive. You can get myo-inositol by itself for about $30/lb in bulk form, which should last you somewhere around three months (my family goes through about half a pound a month, with a combined usage of about 25-30g daily, so a single person on the PCOS dosage of about 4g, or anything less than that, should be able to last far longer).

    D-chiro and myo work together and complement each other, so it would probably still be worthwhile to include it if you can find it (even Amazon only has two listings -- if it doesn't specifically say it's D-chiro, then myo). Take a look around and see if you can find them cheaper separately.

    You might also want to check out Vitex (chasteberry). It's got more side effects than Inositol, but it's pretty powerful for hormone balance (just make sure you talk with your doctor to ensure you don't accidentally cause interactions).

    And yes, you can have cysts without having PCOS, you can also have PCOS without polycystic ovaries. It's a syndrome, so it's just a collection of symptoms.

    Also, define "normal" for insulin levels. What did your test result come back with and what is the cut off number? "Normal" according to LabCorp isn't necessarily "healthy" for one's body.
  • ravenstar25
    ravenstar25 Posts: 126 Member
    Sounds like PCOS or something similar to me. I have no advice on the medical front though.
    Syndromes are weird things. You can have some but not all of the symptoms. Someone else can have the complete other half and you both have the same syndrome.
  • andisue50
    andisue50 Posts: 26 Member
    Thank you, Dragonwolf! Maybe I will continue pregnitude while TTC but definitely want to try the inositol and see if it provides the same relief from my cramps in the future. My insulin was 3.5 in April and then 5.6 this time.
    Thank you, ravenstar25 for the response. It's definitely frustrating that things are so gray, not black and white. I really love my doctor (and of course she just moved across the country and I have to go to a new one!), but I wasn't expecting her to suggest PCOS. It makes me feel better to know there really is so much variability.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    Another supplement to consider adding for the hypothyroid is Iodoral. It is a combination of iodine and iodide. Most people absorb one type or the other, so this covers both. It is over the counter, but most pharmacies, if they carry it, keep it behind the counter. With my thyroid, meds brought my lab levels to "normal" range, but I didn't have any relief to my symptoms. Within a week of adding this supplement (1/2 tablet at first until you are sure you tolerate it since some have reactions, then up to a full tablet), I started noticing some symptom relief. While I'm still tired most times, it wasn't a 4 snooze alarms and then barely drag myself out of bed with a shoehorn and shock therapy kind of daily occurrence anymore... Just make sure your doc is aware and monitors your thyroid levels (only way to check this).

    Also, remember, all blood lab work results are relative. most things are "acceptable ranges." What may be low for one person is high for another, so just because your levels are "in range" doesn't meant you are okay. Also, make sure to monitor your B12 levels, because chronic BCP and metformin (along with another dozen meds) severely restrict absorption, and you can end up with permanent nerve damage before you even know it is a problem.

    Best of luck on your path...this diagnosis is difficult, but getting as informed as possible provides so much hope!

    P.S. Anyone can feel free to add me...just include a note please saying you found me in group! :)
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    andisue50 wrote: »
    Thank you, Dragonwolf! Maybe I will continue pregnitude while TTC but definitely want to try the inositol and see if it provides the same relief from my cramps in the future. My insulin was 3.5 in April and then 5.6 this time.
    Thank you, ravenstar25 for the response. It's definitely frustrating that things are so gray, not black and white. I really love my doctor (and of course she just moved across the country and I have to go to a new one!), but I wasn't expecting her to suggest PCOS. It makes me feel better to know there really is so much variability.

    Let me just say I'm jealous of your insulin numbers. I've been fighting to keep mine under 20 (the cutoff between "normal" and "pre-diabetic"). I'd have zero weight issues if I could get mine to your levels, since it's the major roadblock for me!

    Seems you have what's sometimes referred to as Type II PCOS. Or PCOS without insulin resistance. Have you done progesterone supplementation? It sounds like your issue may stem from estrogen dominance due to the low progesterone. The cysts on your ovaries and intermittant ovulation may also stem from the lack of progesterone (and I'm willing to bet low levels of lutenizing hormone (LH), too).

    And I stand corrected, it seems Pregnitude does not contain d-chiro inositol, but rather it's a blend of myo-inositol and folic acid (which means it's expensive largely for the name, all the more reason to switch to something else). So, in light of that, here's what I recommend trying:

    1. Drop the Pregnitude for a different, less expensive brand of Myo-Inositol (I recommend what I linked earlier). You can keep the same amount as a dose of Pregnitude (2 grams) if it's effective for you, but don't be afraid to increase the dosage (especially if you can't get your hands on DCI, or if you're still having limited benefit). There are no known adverse effects to larger doses and tested therapeutic dosages of myo-inositol go as high as 12-15 grams.
    2. Take a separate folate supplement and make sure it's folate and not folic acid. Folate has better bioavailability (folic acid has to be converted for the body to use it). Also, don't be afraid to eat more eggs, especially if you can get your hands on pastured eggs. They're folate powerhouses.
    3. Add in some d-chiro inositol (DCI) to help augment the action of the myo-insoitol.
    4. If your progesterone is still low and/or testosterone still high, consider a natural progesterone cream, Vitex, or other progesterone supplementation. Bringing progesterone up may help reduce testosterone as the body is no longer trying to compensate for the estrogen dominance.

    * Disclaimer -- I don't think Inositol has been tested for safety during pregnancy, and so most people will be like "use with caution" or whatever borderline paranoid verbiage they like to use. However, Folate is highly encouraged during pregnancy. Given that Inositol has very similar actions to Folate (improved neural function), helps modulate insulin much like Metformin (which is also usable during early stages of pregnancy), and is also a vitamin and has been proven to be safe in general, even at high doses, then it stands to reason that it's safe, and possibly even advantageous, during pregnancy. As always, though, consult with your doctor about it and go the route that makes you feel most comfortable.

    On a side note, I found this nifty article on the safety of preconception herbs during pregnancy (as well as herbs that are great for common pregnancy ailments).
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    I wish I knew what I had. I, too, am not insulin resistant, but I had that condition I called "food narcolepsy," whereas anytime I would eat, I would have an episode where I was pass out/narc out/doze off with no warning until I was waking up. Luckily it was isolated to when I was seated but not driving. never happened driving or while body was in motion. My endocrinologist said that it really couldn't hurt for me to try Metformin, given the odd circumstances (glucose, insulin levels fine, even glucose tested before and after eating)...

    And literally, the first dose, I could tell something was working. i not only didn't pass out after eating, I literally felt a surge or energy from my food. So I waited a few extra hours to shift the pill from night to day (ER) so I could have the energy when I needed it most, while at work... I discovered through trial and error that if I take it with an energy drink shot (like 5-hour energy), I had less than 5% of breakthrough passing out. Doc approved this combination and even said he was going to suggest it to some other patients with similar issues.

    So I'm not insulin resistant by testing, but I react to the medication mostly as if I were. I've always been somewhat of a medical mystery, as I never have all the main symptoms of any condition and so diagnosis and treatment is almost happenstance and frustrating...

    Years and years ago, I did do progesterone supplements (a topical cream compounded by my pharmacy), but I was believed to be in adrenal fatigue, as the levels never raised, it was believe to be converted to other hormones as necessary. My estrogen was dominant but still low, and testosterone was normal. However, every single cycle, I would get the symptoms of early pregnancy, while TTC, and have no actual pregnancy, and it started to make me a little insane. So eventually I stopped taking it.

    But my levels of all hormones are in normal ranges now, finally, for the first time in almost 15 years... I hate that my body is so confused and doesn't react to anything as expected... Starting to finally feel human again, but I also feel like a medical pharmaceutical cabinet - have pills will travel?
  • andisue50
    andisue50 Posts: 26 Member
    Dragonwolf, sounds great. I have an appointment next week so I will definitely talk to her about changing the Inositol/Folate. As far as the progesterone, the doctor did have me take progesterone supplements along with my Clomid/Letrozole rounds. Sorry, should have mentioned that. The side effects of the progesterone SUCKS though!

    KnitOrMiss, sorry you've been through so much! Glad the Metformin is helping you.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    Thanks. This week has been really rough. I was off work for two weeks, and sick for a week of that, so all my schedules are off and I'm EXHAUSTED... Hope everyone has a much needed upswing this weekend!
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    andisue50 wrote: »
    Dragonwolf, sounds great. I have an appointment next week so I will definitely talk to her about changing the Inositol/Folate. As far as the progesterone, the doctor did have me take progesterone supplements along with my Clomid/Letrozole rounds. Sorry, should have mentioned that. The side effects of the progesterone SUCKS though!

    KnitOrMiss, sorry you've been through so much! Glad the Metformin is helping you.

    Was it natural or synthetic progesterone? I'm not as versed in progesterone supplementation, but that may make a difference in that. Hopefully you can work something out that doesn't require that, though, if you're getting bad side effects.

    Good luck!
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    The progesterone I took was a natural topical cream that you rub into your thigh once daily so that it is slowly absorbed through the fat layer. Don't know about Andisue50's form... I just know that must stuff was so out of whack, it helped, but not the way it needed to help. It worked to balance out another deficit that was even worse...
  • Alliwan
    Alliwan Posts: 1,245 Member
    KnitOrMiss wrote: »
    The progesterone I took was a natural topical cream that you rub into your thigh once daily so that it is slowly absorbed through the fat layer. Don't know about Andisue50's form... I just know that must stuff was so out of whack, it helped, but not the way it needed to help. It worked to balance out another deficit that was even worse...

    I use a natural progesterone cream the last half of my cycle also. You can rub it into your inner arms, face, thighs, etc. It helps balance out the estrogen issues, which the Vitex is also helping. Since my miscarriage in September, i use the progesterone to straighten things out AND to help just in case we have another surprise.
  • andisue50
    andisue50 Posts: 26 Member
    Mine was a prescription that is inserted vaginally.
  • Alliwan
    Alliwan Posts: 1,245 Member
    andisue50 wrote: »
    Mine was a prescription that is inserted vaginally.

    After a positive pregnancy test, the insurance will pay for progesterone suppositories but until you get a positive pee stick, its natural progesterone cream off amazon.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    Mine was an actual prescription from a compounding pharmacy. Of course my progesterone level was so low it didn't even measure on the scale, so maybe that's why it was covered? Luckily, it has leveled out now...
  • Hey! PCOS can be very confusing because there are multiple ways that different medical organizations use data to make the diagnosis. They used to make the diagnosis solely based on polycystic ovaries on ultrasound, hence the name. I also have PCOS, but I'm what you call a "lean" PCOS. (I'm 5'4, around 130 lbs), however I have never had a period naturally or ovulated. I do not have insulin resistance which leaves less meds that might help my ovulate (such as those that help insulin resistance such as metformin and supplements like myo-inositol). I also had severe androgenic sx when I was diagnosed; getting laser hair removal on my face at the age of 13! I have not tried for pregnancy yet and am nervous about doing so. Thus, looking for support in general. I love that we are educating each other; such a positive group here. I am a physician assistant myself and have a strong interest in women's health and PCOS in general. Let me know if I can help with any medical questions also. I did my Master's thesis on comparing myo-inositol vs. metformin in regards to pregnancy rates. I should also say I am also hypo-thyroid, so I have both of those things going for me! ;)
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
    lysco08 wrote: »
    Hey! PCOS can be very confusing because there are multiple ways that different medical organizations use data to make the diagnosis. They used to make the diagnosis solely based on polycystic ovaries on ultrasound, hence the name. I also have PCOS, but I'm what you call a "lean" PCOS. (I'm 5'4, around 130 lbs), however I have never had a period naturally or ovulated. I do not have insulin resistance which leaves less meds that might help my ovulate (such as those that help insulin resistance such as metformin and supplements like myo-inositol). I also had severe androgenic sx when I was diagnosed; getting laser hair removal on my face at the age of 13! I have not tried for pregnancy yet and am nervous about doing so. Thus, looking for support in general. I love that we are educating each other; such a positive group here. I am a physician assistant myself and have a strong interest in women's health and PCOS in general. Let me know if I can help with any medical questions also. I did my Master's thesis on comparing myo-inositol vs. metformin in regards to pregnancy rates. I should also say I am also hypo-thyroid, so I have both of those things going for me! ;)

    Inositol has been shown to help PCOS symptoms, ovulation, and fertility independent of its glucose sensitizing effects, even in "average" weight women. It's definitely still worth trying, even if you're not insulin resistant or overweight. Worst case scenario, you take it for 3-6 months and it doesn't do anything.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    lysco08 wrote: »
    Hey! PCOS can be very confusing because there are multiple ways that different medical organizations use data to make the diagnosis. They used to make the diagnosis solely based on polycystic ovaries on ultrasound, hence the name. I also have PCOS, but I'm what you call a "lean" PCOS. (I'm 5'4, around 130 lbs), however I have never had a period naturally or ovulated. I do not have insulin resistance which leaves less meds that might help my ovulate (such as those that help insulin resistance such as metformin and supplements like myo-inositol). I also had severe androgenic sx when I was diagnosed; getting laser hair removal on my face at the age of 13! I have not tried for pregnancy yet and am nervous about doing so. Thus, looking for support in general. I love that we are educating each other; such a positive group here. I am a physician assistant myself and have a strong interest in women's health and PCOS in general. Let me know if I can help with any medical questions also. I did my Master's thesis on comparing myo-inositol vs. metformin in regards to pregnancy rates. I should also say I am also hypo-thyroid, so I have both of those things going for me! ;)

    Also, if your thyroid issues are not under full control, look into Iodoral. It is a combination iodine/iodide supplement that is over the counter, but generally kept behind the counter in many pharmacies that carry it. Medication brought my numbers under control, but I didn't start having any symptom relief until adding Iodoral. I recommend it to anyone I hear suffering of hypothyroid. My doctor had me start taking 1/2 a pill a day to be sure I tolerated it okay (some have an allergy, similar to iodine allergies). After about 4 days, I switched to a full pill, and around day 8, I realized that it had slowly creeped up on me that I was waking up without multiple alarms and not feeling like a brain-dead zombie. I was still tired, but I was functionally awake with a single alarm, which hadn't happened in a decade! Nearest I can tell, it really kicked in around day 5-6... I missed that supplement accidentally the last 3-4 days, and I could really tell. Today, I was nearly catatonic... Took me a while to realize the problem.

    I am not insulin resistant by the numbers, but have odd food processing borderline narcolepsy issues that are managed with Metformin. So, good luck. It is wonderful to see more PA's out there studying these difficult issues.
  • andisue50
    andisue50 Posts: 26 Member
    I've been doing some research, and there are studies showing PCOS is linked to hypothyroidism. Also studies showing PCOS is linked to IBS (something else I deal with- anyone else?). This doesn't really provide any answers, but I just found it interesting that these are all interconnected. Hopefully the treatment/management can become interconnected as well.
  • Alliwan
    Alliwan Posts: 1,245 Member
    andisue50 wrote: »
    I've been doing some research, and there are studies showing PCOS is linked to hypothyroidism. Also studies showing PCOS is linked to IBS (something else I deal with- anyone else?). This doesn't really provide any answers, but I just found it interesting that these are all interconnected. Hopefully the treatment/management can become interconnected as well.

    The doctors only give me the TSH and the T3 and T4 blood tests, but they are all smack dab in the middle of normal so they wont dig further. Hoping that means no thyroid problems. But I do have some IBS symptoms but never been in to evaluate it for sure. There are things i cant eat without problems, milk because of the whey, gluten in any form, not just wheat but even oats give me a problem. Since I try to do a LC/HF diet, it isnt usually a problem for me because i dont eat the oats/wheat/gluten or drink milk. I can use dairy in cooking, cream cheese or sour cream or heavy whipping cream with out much of a problem but one 8 ounce glass of milk will bloat me by almost 4 inches (yes we measured) and give me some bad IBS symptoms.

    It is interesting how interrelated everything is with PCOS. It isnt a 'fertility' only issue but the sad and frustrating part is most doctors only see it as a fertility issue. It actually affects all the rest of our lives, from self esteem issues based on weight or weightloss issues or excessive hair or cystic acne, to the depression and feelings of worthlessness from fertility issues, to digestive health, PMS symptoms, depression and anxiety.

    I am SOOOO very very happy to see some doing their thesis and work in this field who really do care why and how to fix it because most of us are surrounded by doctors who view it as a fertility issue, stick us on birth control and tell us to come back if we want kids.
  • PCOS and hypothyroidism can definitely be linked. Very common for both to happen together; which is really unfortunate as they both cause weight gain as well as fertility problems. I also struggle a lot with anxiety which contributes to some IBS. It was all very confusing when these disorders were being diagnosed to tell what was causing what! Thankfully, now that I am being treated, I feel much better. Being educated about each issue also helps me feel like I am in control and can make decisions with my doctor. Good luck ladies!