For those with PCOS, have you tried inositol?

MARISAV77 · September 2014

I was diagnosed with PCOS in July after I went to a regular endocrinologist to rule out hypothyroidism or other endocrine disorders because my hair was severely shedding and becoming noticeably thinner. My testosterone levels were normal in November when I first saw my RE and did not have the normal looking polycystic ovaries. One ovary had an AFC of 9 and the other one was 13. This Endo showed my thyroid levels were normal but my testosterone was high at 76. I was 45 back in November. This Endo asked if I wanted to follow up with him or follow up with my RE. I decided to follow up with my RE. So after my RE went over my chart from my initial consult she said "technically we could call you PCOS, since that one ovary has an AFC of 13 and anything over 12 is considered PCOS" and with my irregular periods and now my testosterone levels high, it's official. She didn't diagnose me with PCOS back in November because I didn't have any other symptoms except irregular periods and we both believed it was due to me working night shifts, since my periods were super regular before I switched to nights.

Sorry this is long, I'm getting to point!

I asked her if I needed to be on metformin and she said no because I am responding well to Letrozole by itself. I really wanted the metformin because I read it helps lower testosterone levels and therefore would help with my hairloss. My question is has anyone with PCOS taken Inositol? I've read so many great benefits from it especially those with PCOS. It sounds like it works similar to metformin but naturally since it's a B vitamin. I was thinking of giving myself a 3 month break from medicated cycles and IUIs to see if my periods regulate with inositol. I've been on a dayshift schedule since June, but have been on medicated cycles, so I also wanted to see if my cycles will regulate on their own now that I'm working days too. I have another follow up with my RE on Monday, and my plan was to ask to redo my labs including AMH to see what my ovarian reserve is since it's been almost a year since my initial labs. And if my ovarian reserve still looks good, a 3 month break from medicated cycles wouldn't hurt. But if it doesn't look good, I guess we'll carry on with another IUI.

Thoughts on inositol? Thanks!

RazzyRN · September 2014

No advice I'm sorry I just thought it was interesting that you have hair loss, I didn't know that was a sign of pcos I just thought that excessive hair was.. I suffer from that. After I got of my BCP my manly side burns came in full force

BunnyBerry · September 2014

Sorry, I don't know anything about inositol.

I guess my questions for the RE would be, If my TSH/AMH are both great, is it an issue to wait a few months, or does the research show that an AMA woman could still have more issues by waiting a bit even with good bloodwork results? And if the RE recommended not waiting, I'd ask, Can I take this med along with the fertility meds?

May I also ask, though, if the goal is to regulate your periods, why does that matter if you're taking medicated cycles already? I guess I'd also ask the RE, Would regulating my periods naturally make a difference in some way for fertility in subsequent medicated/IUI cycles?

Good luck with whatever you choose!

DSculley1824 · September 2014

Sorry no advice on the actual question. But another question for you. What are you doing/did you do about hair loss and thinning hair? I'm literally experiencing the same thing. It's making my self esteem go way down. Nothing is helping.

[Deleted User] · September 2014

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Waterlily234 · September 2014

Hi! I don't have PCOS but I have just started a regimen of myo-inositol gearing up for IVF in few months. I did not discuss this with my RE because I went on a break after my IUI#4 fail ...but one of the lovely SAIF ladies who got her BFP on IUI#4 mentioned it to me and I researched it and found that it has been shown to improve oocyte quality for IVF. Myo-inositol is the ingredient in Pregnitude along with folic acid, and it is cheaper I think to just buy these things separately. I am taking 4 grams per day along with folic acid and melatonin in addition to my regular prenatal vit. There is a ton of anecdotal evidence online about it's benefits for PCOS and there are studies published as well that it helps with insulin resistance therefore helping regulated PCOS cycles. I don't think it has been shown to do anything for non-PCOSers but the egg quality studies are good enough for me. I have been taking it for 3 weeks, and the only things I have noticed are I had tons of watery CM, I feel hot, and I am a little constipated sorry fo the TMI. I have no idea if these things are related to the myo-inositol or not but that's what I got for you. Good luck with your plan I get wanting to see if your cycles regulate after IF treatment, I am doing the same thing right now.

MARISAV77 · September 2014

DSculley1824 said:

Sorry no advice on the actual question. But another question for you. What are you doing/did you do about hair loss and thinning hair? I'm literally experiencing the same thing. It's making my self esteem go way down. Nothing is helping.

I've been praying...literally! I was known for my long and thick hair and its been very depressing to see almost 50% of my hair gone since March. Others may not notice too much, because I still have a lot of hair on my head, but I definitely notice it. In July I went to a wig store, just to be proactive before anyone started to notice I was losing my hair. I tried on some human hair wigs, and the gal helping me suggested a "wig topper" for me, because she said I still had a lot of hair and didn't need a full wig. Walked out with a $650 human hair wig topper and have been wearing it for 2 months and no one can even tell I'm wearing a wig. It definitely has brought my self-esteem up and my stress (stress from thinking I was going to go bald) levels down. I'm also OCD taking all of my vitamins and supplements and just trying to eat healthier. I have noticed a lot of new hair growth the last month and so has my husband. Hopefully in the next few months I won't have to wear the wig anymore!

MARISAV77 · September 2014

RazzyRN said:

No advice I'm sorry I just thought it was interesting that you have hair loss, I didn't know that was a sign of pcos I just thought that excessive hair was.. I suffer from that. After I got of my BCP my manly side burns came in full force

Yes, I guess high testosterone levels can cause thinning hair also. I don't suffer from hirsutism, like a lot of PCOS gals, the only symptoms I have are the irregular periods, high T, and the hair loss. =(

MARISAV77 · September 2014

@BunnyBerry all great questions to bring up to my RE on Monday! Thank You! and to answer your questions about regulating my periods on their own vs medicated cycles, I'm just pretty tired of taking all the medications and US visits. When my husband and I were trying on our own, I was working nights and my periods became very irregular. My husband has the mentality that we will get pregnant when it is our time, and although he is not against the fertility treatments and has been very supportive, he is all for trying naturally without any help, especially now that I am finally back on day shift and have felt better mentally and physically on days. Night shift can definitely mess with your health! Hopefully my RE will give us some good news on Monday!

@Waterlily234 and @PeanutRN thanks for the good input! I'm hoping inositol will help with my PCOS!

DSculley1824 · September 2014

@MARISAV77‌
Your situation sounds just like mine! A lot of people think I'm just styling it differently with a new hair cut. Def not the case. It's seriously so depressing. I've lost a lot in the temple area. I keep changing my part from side to side to hide it and help the area try to grow back. Can I ask what vitamins and supplements you are taking? I'm willing to try anything. I've just begun doing deep conditioning treatments too.

MARISAV77 · September 2014

@DSculley1824 I've been taking a regular multivitamin, 400mcg folic acid, 1000IU D3, acidophilus, 2300mg fish oil and 50mg chelated iron. I've read online that the inositol has helped with hair growth, so I'm hoping it works! I'm not sure if my low iron has contributed to my hair loss too, found out I was severely iron anemic in late June (wasn't surprised since I was bleeding heavily for 6 weeks straight!) and have been taking iron supplements for the last 11 weeks, so not sure if my hair is growing back because my iron is back up or not. Getting my iron retested on Monday too!

DSculley1824 · September 2014

@MARISAV77‌ thanks for the list of vitamins/supplements. I need to try something! I'm keeping my FX that your iron test comes back good! Also, that your hair loss/thinning journey is over!!

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