I know this is one really I have to trust my Dr on but can’t help but feeling a bit worried about!
I’ve been told I have PCOS (45 AFC and latest AMH was 60), so I’m aware I’ll be on low dose stims.
I mentioned to the Dr the plan was to aim for a few embryos (should we be so lucky!) as we will freeze and test them, so likely loose some among the way. He agree and said he would up the stims slightly to aim for a few more since the risk of OHSS was not as worrying with no fresh transfer planned.
I’ve since found out I’ll be on just 75iu menopur. This feels very low to me given what was discussed and the levels other women with PCOS have been on.
I was wondering if anyone had any words of wisdom to calm me down? Perhaps that low dose did yield a good number of eggs for them? Or they were able to course correct and amend the doses during treatment?
I appreciate the dr is erring on the side of caution…I’m and an NHS patient so likely have less say in my treatment
Xxx
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CarlottaD27
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I also have a high AMH and had very different responses between my first and second cycle. How many cycles do you get on the nhs? I think many women find the first cycle to be trial and error. So you can then tweak medication and hopefully get a better response on the 2nd round.
For both my cycles I was on 150IU and the doctors said that is what the usually start all women with high risk of OHSS on 🤷♀️ could you get a second opinion if you are worried about it?
thank you for sharing that! I may ask why I’m not on 150 as that seems appropriate, but appreciate as first trial they will be learning. It’s frustrating as i only get two cycles on the NHS so this one does matter! X
I would definitely ask for second opinion - it may be your clinics particular protocol in which case you are unlikely to change or an individual doctor’s opinion. If you voice that you would be happy increasing the dose higher (especially if not aiming for a fresh transfer) they hopefully will take this into consideration!
thank you! Yes I will be pushing for it to be reviewed. Do you mind sharing what your AMH was? Just curious based on the dose you had! I now have to wait until a follow up next Tuesday to have the conversation and I’m itching to get it resolved x
I can’t quite remember but it was around 70/80 my AMH I also have low BMI as well. As another poster commented it’s all a bit of a gamble and everyone responds differently. If you end up under/over responding you may get option to cancel and try again and then this doesn’t use up one of your cycles?
My clinic told me if doing short protocol the evidence is now that you shouldn’t change doses mid way through a cycle - I don’t know if that is a view shared across other clinics though! We are in an NHS hospital 😊
Thanks for sharing! Interesting that your clinic don’t believe in changing doses as I hear a number of people on hear changing doses through a stim cycle! I guess the evidence is always evolving xxx
I know! For my first cycle (at a different clinic) I did get a reduction in dose down to 75IU. I think different clinics seem to have very different protocols and views. It probably points towards actually there isn’t a ‘best’ way of doing things
I've tried to look into this a bit, and it seems quite rare for us ladies to be on such a low dose! However, for me I was on 75iu, sometimes I even needed to cut it back to 37.5iu a day, I'm a huge over-responder! I'm also PCOS with a high AMH. If you don't respond quickly enough they can always increase the dose. They may have decided the extra low dose based on your profile, especially being very thin, young, PCOS, high AMH, high follicle count, etc. Are all big risk factors (I'm all of these).
My very first cycle was totally cancelled because my body over-reacted to stims at a "normal" dose. I got OHSS on a different cycle and was hospitalised for a week (that was from fresh retrieval only). I've since learned that OHSS can be avoided by doing an alternate trigger (without hcg), but even on that cycle I was still very unwell and in agony. My point being that it's smart they are being careful, but I do understand your concerns! xx
Gosh, things are never straight forward are they?! It’s frustrating how unpredictable our bodies can be and I expect particularly for PCOS it can be trial and error.
It’s reassuring for me to know that such a low dose indeed did have an impact on you and might not be too low for me after all. Scary, though, that you had OHSS as I’ve been reading about how dangerous it can be.
I guess I’m going to have to treat the cycle as a learning experience, but it’s if course frustrating having so many unknowns!
hey, I can’t remember my AMH levels etc but for two cycles on menopur I was on 125. My last cycle I had 100!!! Very small follicles start growing, most of which stopped growing thankfully. By collection day they were expecting 30 eggs 😬 by comparison I got 10 on my first cycle taking the same meds. In the end they collected 20 but the point being, each cycle can vary wildly. I would question your dose though, as others have suggested. Best of luck 🤞🏼
Thank you! Ah I see it can vary so much and be very unpredictable - even on the same stim dose! I will be chatting to the Dr and probably have to accept it’s all a bit random and unpredictable! X
I had good amh too, in the high 40s and now but not PCOS and my first round I was on 75 I was on stims for about 10 days but got 6 blasts from 13 eggs that round (one of which was my son). I’m now older and trying for a sibling and we’ve gradually upped it and now 300 and whilst I stim for less time I am only getting 1 or 2 blasts (from about 9 eggs) and I know age will be a factor but I do also wonder if the higher stims are affecting the quality! Defo talk it through with them as they may have a reason for trying this as they always tell me they can up the stims after 5 days if they need to 🤗 xx
Thanks for sharing that. 6 blasts and a son is a beyond brilliant outcome! Gives me hope that this low stim dose could work well after all and I shouldn’t be so despairing ❤️
I’m such a control freak so realise I shouldn’t be dictating what the Drs do, but will raise my concerns - both on our next meeting and at my scans during stims - I guess that’s all I can do.
Absolutely ask ALL the questions I find even if the answer is the same treatment at least I know a bit more about the why and that I raised it and feel better and sometimes they do reconsider and tweak things. But yeah 75 was our only lucky dose so far so it can defo work 🤗💜 xx
They’ll just start you on that and if the response is slow they will up it as you go. OHSS is the biggest risk with IVF so they have to be so careful.
I was started on a really low amount and then wasn’t responding so well so they upped it as I went and I did end up stimming for like 2 weeks but it worked in the end. But I’ve known some women with PCOS respond quickly to a small amount and get OHSS really badly or risk not getting a good amount of eggs as a few of them grew too quickly. I would say trust your doc for now, it’s always hard to know in the first instance but they will change if needed.
Thank you! Good to know that Drs should be flexible and amend the stims as we go. I’m an NHS patient so not sure how much monitoring I’ll get, but as you said, due to the OHSS risk, it should be a priority! I guess this first round is a bit of a trial - it is odd how some women with PCOS respond really quickly and others are poor / slow responders, makes things even more unpredictable! x
Yeah it’s so hard to tell in advance. The first round is often a bit of trial and error. I responded so slowly the first time and stimmed for ages but got some good embryos, whereas the second time they put me on a higher dose and I responded much quicker but my eggs were much lower quality than the first time and therefore got less embryos and it was only a year after the first round. I’m very luckily currently pregnant with an embryo from my first round so the lower dose for me worked.
They should definitely be monitoring you regardless of it being NHS! So I really hope they do.
Massive congratulations ❤️ that really gives me hope that the low dose has led to your pregnancy. I guess I will have to put it down to (a very emotionally intense!) learning experience. Hoping the rest of your pregnancy is uneventful and gets you your baby x
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