Help with PCOS inositol supplements (trying to conceive!)

[Afive]

Hi all!

I've been diagnosed with PCOS in my teens. I had most of the symptoms on the list, no periods, acne, hirsutism, heavy bleeding when periods deign to appear. I lost count of how many different pills I took and had most of their side effects (apart from blood clots thankfully!). It got to a point where I talked with my partner and we decided to use only condoms for contraception. I knew because of PCOS I was going to struggle to get pregnant so we start trying when I was 25. After having 6 periods that year my gynecologist (non-uk, EU country) suggested a D-chiro-inositol supplement which I took and 6 months later I got pregnant and our child was born. Pregnancy was lovely as it sort of reset my hormones which felt great. After my periods returned 8 months post-partum (I breastfed until my child wanted to stop), I was advised by UK GP to try progesterone-only pill. After I bled for a month a half, I decided it was enough (even with GP saying I needed to give it time for my body to adjust to the pill). Now we're trying for another baby and I'm very keen to try inositol supplements again. However Science has evolved lots and it has been shown that supplements with only D-chiro-inositol are not safe. The recommendation is myo/D-chiro-inositol in 40:1 dose (ideally 2000mg /50mg per day).

I would like to have recommendations of brands for inositol supplements - what worked for you, and what didn't. The scientific studies have limiting as they don't account for the subtypes of PCOS so I want to hear people's experiences.

I'm also on waiting list for endocrinologist specialist, but I don't want to waste time, and like last time I was trying to get pregnant, it didn't happen until my BMI was 24.9 (which only happened after I started taking inositol). I'm currently on 150ug vitD a day, + folic acid + iron tablets during my period (I tend to feel very tired as I bleed a lot, and even though my iron levels are not "anemic" I feel poorly if ferritin is below 70mg/L). My cycles currently are around 53 days.

I have sucefully lost 4Kg but haven't managed to lose more with dieting /exercise and I'm about 5Kg more than what I should have to get BMI <25 (which was the weight I was when I got pregnant last time). Any feedback on types of food that help loose weight for PCOS is welcomed too.

Thank you for your time and help!

A.

[TTC_babylexie]

Hi, I have pcos and was on the pill for years to control the hirsutism and give 'normal' periods: I used to bleed heavily for 2 weeks in a row and expel lots of large clots.One day my GP stopped the pill due to my high risk of stroke given my high bmi. I also wanted to start fertility investigations but I was worried about having heavy periods again. I ended up having long cycles, so my period would come every 55 days (like you). The longest wait for a priod was 66 days. I started taking myo-inositol (brand inofolic), 2 satchets a day. In 3 months my period cycle reduced to 35 days, and by months to 28 days.

I stopped using inofolic once I started having frozen embryo transfers in IVF because my periods were regular now and I was on a lot of supplements and medications. But now that I am 10 weeks pregnant, I've started taking it again due to reading it lowers the risk of gestational diabetes, as my bmi is 42 I'm m at a high risk of this.

In your situation, I recommend you take it. I first heard of myo inositol in the BFN (big fat negative) podcast, where they had a nurse specialist in PCOS in one of their episodes and was recommending this over anything else. Go and check it out!

Hope the above helps.

[Afive in reply to TTC_babylexie]

Congratulations on your pregnancy, I sincerely hope all goes smoothly!After I stopped pills I had longer cycles, like around 85 days. It only got "normal" (the 35 days!) after my pregnancy. I went from 85 day cycles to 28 day cycles (and pregnancy )with D-chiro-inositol, that's why I know it works for me. But the most recent studies have shown that this just by itself is not the best (as well myo-inositol by itself), so I wanted to check... Also, none of the inositols is sold at a recognised UK brand / store, so I'm afraid of taking random stuff from the internet. With that said, I also read inofolic recommended by an NHS trust documentation (not mine), so it's the top of my list. I'll give that podcast a try, thank you!

[Dwl2408]

My experience with PCOS is a little different. I wasn't ovulating or having periods at all and was getting a lot of brown spotting due to low progesterone. However, progesterone only pills don't really help me to have a period as my oestrogen is also too low to grow enough of a womb lining. I tried inositol to help me and wanted the 40:1 ratio as it's supposed to be most effective. My favourite brand is thisamazon.co.uk/Myo-Inositol-C...

It's also available from the manufacturer direct and they offer discounts to repeat customers (including through Amazon). I prefer the powder which isn't currently available as I really struggle to swallow capsules and I can just add it to my drinks. Having researched, the best effective dose is supposed to be 4000mg (4g) daily for PCOS, so twice what the label says. Using this stopped my brown spotting and improved my quality of life. I continued taking it through my IVF treatment and subsequent pregnancy (my son was born a month ago) with no issues. I had to switch to another brand as I couldn't get this for a while and the scoop sizes made getting the appropriate dose more awkward, but still had no issues. You can get mixtures which also have the folate and vitamin d included but my fertility specialist already had me on higher doses of these so I didn't want to take an extra. I stopped taking it when I went into hospital for the birth but I plan to start again soon. I'm thinking it might actually help my nights sweats due to the hormone crash. I'm breastfeeding but I don't think there are any problems associated with taking this, especially as I had it all through pregnancy. It's supposed to be very effective in helping prevent gestational diabetes as well in women at higher risk.

[Afive in reply to Dwl2408]

Hi! Congratulations on your baby and thank you for having taken the time to reply. Did your fertility specialist agreed with the inositol supplement or recommend it? feel free to PM if you need a chat (the first 3 months with a baby are so hard! Even if all you wanted was a child for a long time, it's very hard!)