Letrozole, high AMH and PCOS

[Jaydrives]

This is my first cycle using letrozole for ovulation induction. I was prescribed 2.5mg on CD 2-6 and am due to have a scan tomorrow (CD13) to see if it's working.
I've just got myself so stressed out convinced that because of the fact that i have PCOS and very high AMH that the low dose isn't going to work and I'll just be wasting cycles (I've been told that they will only increase dose by 2.5 each cycle to a maximum of 10mg, and that i can only do this for a maximum of a year). So I'm just hoping that there is anyone out there who has been in a similar position and actually successfully ovulated on a low dose?

I'm trying to calm myself down before my appointment tomorrow, we've been TTC for so long now that every new issue just feels insurmountable.

Slightly different as I have very low amh and do not have PCOS. I have been prescribed 2.5mg. I was told I would have blood test on day 21 to check if I did ovulate and if not they would double my dosage.

I'm going in for an ultrasound this afternoon to check for dominant follicles to see if ovulation is likely. I've just gotten myself utterly convinced that this is just something else that isn't going to work since i have yet to leave any of my appointments with anything that feels even remotely like good news.

@Jaydrives How did you get on with your scan? I’m in very similar situation PCOS and high AMH.

Im currently on CD10 of my third letrozole cycle. The first two cycles I did 2.5mg and this is my first cycle on 5mg.

It didn't work, i don't have any follicles bigger than 7mm so that's us out for another cycle. I'm waiting to hear back from my consultant but i should be doing 5mg next cycle.

How are you finding the side effects? I had crazy hot flushes so kindof dreading that getting worse as we go up in dose.

@Jaydrives Just FYI even though there was no dominant follicle at CD13 doesn’t mean you definitely won’t ovulate this month. My first two cycles on 2.5mg there was nothing at first scan and then I went back for a second scan both times around CD15/16 and had a dominant follicle each time. I ended up ovulating on CD19 the first cycle and CD20 the second. Maybe use ovulation tests at home to make sure If you do ovulate you don’t miss it!

I’ve been ok with the symptoms so far. It just seems to make me really fatigued. 5mg didn’t seem any worse than 2.5mg.

@Jaydrives I’m going in for a scan tomorrow (CD11) so we’ll see if the increased dose has sped up ovulation!

Hi,
I'm on letrozole and have pcps with high AMH. I started at 5mg, it did nothing for me either but 7.5mg is working, and haven't had many side effects from it either.

I do really empathise with it feeling like such a torturous and slow trial and error process though! The first time I ovulated the day 12 scan was actually a bit too late (they think I'd already ovulated) so then I moved to day 10 and 12 scans, and then this cycle they added a trigger shot too. Wish they'd just done all this from the outset!

I hope 5mg works for you, hopefully the hot flashes mean 2.5mg was having some kind of impact and means 5mg will be your sweet spot

@Jaydrives Thanks for starting this thread! I am in the same position. PCOS (the lean version, low BMI) and very high AMH.

I am currently on CD17 of my first round of 2.5mg Letrozole and due my CD21 blood test on Friday to tell if I've ovulated. I have been tracking with OPKs and Basal Body Temp and nothing is happening, so I know I haven't ovulated. I even had to have the Ovarian Drilling procedure before starting on Letrozole as my consultant said I would be unlikely to ovulate on Letrozole if I didn't have the procedure...but still nothing!

I hate the waiting around for the next step and not making progress! How are you getting on with your second round of Letrozole? Out of interest, do you have periods? I don't, so I have to take 10 days of Norethisterone to induce my period before I can start the Letrozole, so that delays things even further 😔

I keep reading such different stories of what different consultants are advising for people, it makes it all feel lile it's a guessing game for them too. 🤨 nothing has been said to me at all about trigger shots or blood tests to confirm ovulation, they want me to take the letrozole for 5 days, have a scan at CD12-ish and if there is no dominant folicle they don't want to know me until my next cycle.

I'm on CD29 of my first letrozole cycle, i tend to have quite long cycles so i have been prescribed Norethisterone and been told to take it if my cycle runs longer than 35 days so that i can try the letrozole again at 5mg. I haven't really got any hope of that working either though TBH, starting to think that I'll be luckily to actually ovulate at all this side of Christmas 😞

The trial and error is an incredibly hard part of it all, especially when you only get 12 chances a year.

If it helps you both with the worries about norothisterone making the whole process longer, I found that once I was on the 7.5mg I did have a bleed after 28-30 days (even on the cycle I didn't ovulate) so hopefully that happens for you too once you find your dose is right, and you'll then be having a shot at getting pregnant every month.

Interestingly, I read a study when I was first diagnosed with PCOS that suggested that there are probably at least 2 separate 'disorders' that are being lumped together under the banner of PCOS (I am also within normal BMI and don't have any indicators of insulin resistance). Essentially, some women fall into the insulin issues/struggle with their weight camp and they seem to be a bit easier to treat for infertility, whereas for the 'lean' PCOS types it is harder to manage because insulin isn't a factor in the causation of the hormone imbalance. Doesn't help us much, but I do hope there's further research into this for the future as I think women like us probably need an entirely different approach to managing our condition.

@Jaydrives not on letrozole but I'm on clomid at lowest dose 50mg. Letrozole is supposed to be more effective for pcos and without the side effects, multiples, thin lining ect
At first scan month 1 I had a scan day 9 and they couldn't see any follicles .. ended up ovulating day 20 , confirmed by bloods

Cycle 2 didn't ovulate until cd30 . Didn't think was going to ovulate at all. They were going to cancel the cycle and have me take a provera to bring on a bleed. Had an appointment at fertility clinic same day luckily and they were able to see follicle but it was abnormal .

Cycle 3 . Currently just ovulated on day 17

hi everyone, just wondering how you’re all getting on with letrozole? I’m starting my first cycle on this tomorrow after a long 2 years of TTC.. I have regular periods but I don’t ovulate every month and have a high bmi. I have been given 2.5mg to take days 2-6 of my cycle and scan on day 12. Really don’t know what to expect

I've only done one cycle so far on 2.5mg but it didn't work for me. I'm currently taking Norethisterone to kick start another cycle so i can start again with 5mg and see if that does anything. The only side effect i had was pretty savage hot flushes but the only lasted for the 5 days i was taking it and couple of days after, i have read someone else suggesting to take it before bed though and that you then sleep through the worst of the side effects so I'm going to try that this time around.

@Jaydrives We are at the very same spot in our journey! I'm on 5mg Letrozole and on my second tablet today. No side effects for me, which makes me think it's not working again...I almost want some side effects! 2.5mg did absolutely nothing, so hoping for something this cycle, but I'm not that confident.

Interesting that you've been told to take Norethisterone if your cycle runs longer than 35. I don't have periods on my own, so I started Norethisterone no Day 22 after my Day 21 blood test proved I didn't ovulate, so if you did want to crack on with your next cycle and take Norethisterone earlier than your 35 days, it looks like you can do!

@SunsetsAndSandwiches how are you getting on? Interesting about the Lean PCOS and I agree, I don't think they know enough about us and just give us treatment for normal PCOS, which probably isn't that effective. I had a meeting with a natruopath recently (not usual my thing, but I'll try anything) and she suggested I might have post-pill PCOS and it can take 2 years for hormones to rebalance. Have you always had PCOS?

@sl7uk oh thats interesting from your naturopath. I think I have always had it because I've only ever had 2-3 periods a year since I started aged 14. I went on the pill at 19 and have had a few breaks here and there during my 20s, but have mostly been on it all the time due to longterm relationships. I had a break from the pill at the end of 2020 and didn't have a period for 6 months, which is when I went to the GP and got diagnosed. So it could well be that the pill has made things worse, but I think there was already an issue. Have you always had PCOS?

I'm on my 5th cycle, for some reason ovulation has been late this month despite me taking all the tablets on time- I'm day 16 and have just had a scan to show my follicle is ready for me to take the trigger shot. I've had zero side effects this month though so I guess letrozole can work without any side effects!

Hi @M425 found this thread and wondered how long you've been taking it? I just found out I too have low AMH and so going to be prescribed letrozole but hard to not worry that it seems like trial and error with dosages and there may not be time left to waste....

Hi ladies,
I just wanted to add a success story about Letrozole. It’s been exactly a year since I was in your shoes. I’m 35 years old, lean type PCOS, extreme high AMH, reversed LH -FSH ratio, period once every three years and a very thin uterine lining and basically a consultant told me my results were incompatible with any chances of pregnancy. They put me on metformin years ago on a very high dose and it did nothing to me, as insulin resistance is not my problem. Last year I tried Letrozole starting with 2.5 mg, it did not work at that dose. Then I moved to 5 mg and ovulated on the first round of 5 mg but was away from my DH attending my friends wedding abroad. I tried another round of 5 mg and there was no dominant follicle when I went for an ultrasound on CD 15. However, I was also using OPK and temperature tracking. My OPK came darkish (not very thick dark line though) on CD 20. I thought I will need to move to 7.5 mg probably next cycle and waited for my period which did not start. I was at CD 40 when I noticed slight spotting thinking it was a start of my period. The bleeding didn’t increase within the next three days and then spotting has stopped. I started having a constant headache every day and took a pregnancy test on CD 46 which to my great surprise came back positive! It was hard to believe. I since had a successful pregnancy and my little boy was born happy and healthy and is 4 months old now. I wish you all the best in your Letrozole journey. It worked for me at 5 mg with terrible PCOS and TTC for 7 years! I wish they gave me Letrozole sooner. My consultant also said that it is hard to get pregnant with PCOS but once we manage it does not affect pregnancy much and doesn’t make it a high risk pregnancy if you only have PCOS and no other issues.
PS I also did moderate exercises for three months and precautionary cut on carbs during this time of ttc with Letrozole.

Wow! Congratulations on your success and bundle of joy! This has made me so hopeful for a positive journey on letrozole, this is my first cycle on 2.5mg and I just had my day 12 scan there was a visible dominant folicle and my uterine lining has improved but still needs to be a tad thicker (fingers crossed for the next few days) I’m due to ovulate in the next 2-3 days so fingers crossed!!

@JohnnysMama thanks for sharing, it's hard to find any stats on it (and I'm a number person as like to manage expectations!) Massive congratulations, after 7 years wow...hope you're getting on well.

Do you mind me asking what the cut carbs bit is? Thank you.

@JohnnysMama thank you so much for sharing your story and congratulations on your little boy!! Did you have to wait for your period to come naturally before stating on another dose of Letrozole?

I ask because as soon as my day 21 progesterone blood test shows I didn't ovulate, I start straight away that day on Norethisterone to induce a period (as I don't have my own periods). However, it sounds like you were waiting for your period and got to CD40. Perhaps I ovulate later than the usual 10 days after the last Letrozole tablet and I should wait a bit longer in case I ovulate late. My clinic doesn't seem to give me very much info, so any experience from other is so helpful, thank you!

@JohnnysMama thanks for sharing a success story it's so nice to hear that things can work out so well, and useful to know that late ovulation can have a good outcome! Congratulations, 7 years ttc must have been a terrible strain, so pleased you finally got your baby in your arms.

@Gkb90 glad to hear you've got a dominant follicle. Last cycle my lining was also thin at my first scan but 48 hours later it had thickened to the perfect measurement so fingers crossed you have the same. I hope this is your month 🤞

AppleCrumble3 cutting on carbs involved just no sweet treats at all (I’m a big fan) and one carb meal(with pasta, rice, or potatoes) a day instead of three or four. I reduced rice, bread, pasta and potatoes consumption. I did Pilates three times a week. I’m not a big fan of exercise and hate cardio type of workout so for me only yoga, Pilates or swimming works. Although I didn’t need to lose weight but I read in multiple papers that less carbs and moderate exercise can improve metabolism and blood circulation in PCOS ( and not only PCOS) it’s just beneficial for everyone.

sl7uk I took Provera at the start of my treatment to induce period before starting on the lowest dose of Letrozole and then Letrozole caused period each time. I didn’t have to take period inducing pills once on Letrozole, so I waited longer that cycle expecting it might work. Each time my cycles were different length when on Letrozole. First one 31 days, then 35 and the last was a bit longer and resulted in pregnancy. My doctor told if the pregnancy test was negative in my last cycle and no period in the next three days then she would prescribe Provera again. Happily this was not needed as I got BFP that cycle ))

Hi Everyone. I’m currently 2dpo on my fourth letrozole cycle. This is my second cycle on 5mg. Where is everyone else in their letrozole cycle? It’s really great to hear some success stories. Hopefully there will be more to come!

@SunsetsAndSandwiches I’m glad to hear that your lining got better over 48 hours I’m hoping that’s the same case for me. Now to get through the dreaded two week wait after ovulation day today. How are you getting on? X

Hi again all 👋 how is everyones journey coming along?
I'm back in for day 12 folicle tracking scan tomorrow on my second letrozole cycle (first at 5mg)🤞 this round has done something.

Can i ask if those of you who have been getting day 20+ blood tests or being offered trigger shots are on the NHS? We're getting a bit concerned as we're not being offered either and want to bring it up with my consultant. X