ERA / EMMA / ALICE testing thread 5(!)

[VenusStarr]

Just setting up a new thread as we're coming to the end of thread 4.

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22

❤️

@MyEasterEggs who is your consultant? Who has done this plan?

@VenusStarr

I have had my day 3 oestradiol checked twice, not pre IVF, my clinic doesn't do any IVF bloods before the cycle:
Oestradiol 98.80 pmol/L
Oestradiol 142 pmol/L
[Follicular 45.4 – 854]

Yours doesn't sound that high, if it is higher than usual links Jane suggests it can be useful to see if there is anything producing estradiol like a cyst. Maybe ask the clinic what range they like to see it in.

Your FSH is not an issue at all, mine has been:
FSH 11.8, 8.1, 8.5
So 11.8 is pretty high and makes no sense in my case as I have a high AFC. A second opinion service suggested that the high:high pattern of FSH:AMH could indicate PCOS but that seemed to have been ruled out. I had no issue getting good quality eggs. Yours is absolutely fine.

Thank you @Gardenlady543 I kind of thought higher natural estrogen was a good sign (for my lining issues). But the nurse at Dr Shehata's clinic said high estrogen at this stage in my cycle can be indicative of showing an unnatural FSH - so my FSH could be actually higher.

Its all a bit confusing. I've sent a copy to my ivf doctor, so hopefully I'll hear back next week.

Turned 39 this week and feel like my fertility has fallen off the cliff. Couldn't stop crying last night.

I hope you're feeling OK today ❤️ do you know when you'll be going home?

@Janefx40 I has extreme thirst I my last FET/ pregnancy. But it didn't start until about 7/8 dpt. I hope it's a good sign for you 💕

What's your AFC like @VenusStarr ? I haven't heard of estradiol masking a high FSH. I think they only really worry about FSH in DOR, my friend who has DOR said people can have really high FSH values but her specialist who is a DOR expert doesn't even measure for it. I was told that clinics sometimes check for FSH at the start of stims and if it's over a certain value hold off with giving the stims, as it's the FSH in them that cause the follicles to grow and if there is a high FSH there anyway the stims won't do much.

When they said they won't do IVF with this estradiol what do they mean- fresh cycle or FET? People can have medicated FETS post menopause so I don't see why it would be an issue.

Last year I had an estradiol panic as in a FET it was 8000 but this seems to be because they gave me too much in the cycle.

Estradiol is supposed to start off low and then there is a surge before the LH surge, my CB monitor tells me when I get that and usually it happens from around CD8 and then I get the LH surge about 6-8 days later.

I am still in hospital, not seen the surgeon today, not sure if he's coming. I had a better afternoon yesterday. The nurse couldn't recatheterise me and I decided it's best to try and pass, after 9 hours without urinating I managed to pass again. By now I was pretty dehydrated and my cannula decided to come out right when it was needed, it was tricky for them to get another back in due to the dehydration. They managed though and I'm drinking ok. I'm in quite a bit of pain, had a tramadol this morning and feeling a bit spaced out. Moving about ok and I'm sat out in the chair at the moment.

It's not great @Gardenlady543 AFC about 8. In my last scan at my ivf clinic, the doctor said I actually had a lot of follicles, which surprised me. AMH was only 5 back in 2020.

The nurse at CRP said my estradiol was to high for ivf, she knows I'm only trying a FET at the moment.

I just don't understand why my body isn't responding to the estrogen, either my own or synthetic.

I'm sorry you're still in pain but glad you had a better afternoon. It sounds like things are going in the right direction. X

Too high *

@VenusStarr oh I'm so sorry that you've been so upset. Your fertility is not going to fall off a cliff. It just doesn't work like that - your body doesn't know you are 39 (and I'm seriously hoping mine doesn't know I'm 45!!!). Want to send you hugs.

Xxx

Ps the thirst came pre transfer so I don't think it means anything positive!!! But I like the though x

@Gardenlady543 how are you feeling today?

That AFC is not too bad @VenusStarr I don't understand why they have an issue with a FET, there are various protocols and I'm sure there can be a workaround. I think you need to ask what they are worried about with the estradiol level.

@Janefx40 I'm doing ok today. The surgeon came and said if things are ok today I can go home tomorrow. It's just pain that's the main issue at the moment. I haven't opened my bowels yet, I think when that comes I'll feel more normal but I wouldn't be able to exert the pressure for that at the moment anyway.

@Gardenlady543 glad things have improved a little.

Sorry I seem to have posted earlier without seeing yours or @VenusStarr most recent posts.

@VenusStarr hopefully you will hear back from the IVF doc. CRP don't actually do your treatment anyway do they so it is their opinion that matters more. As you said it's an FET anyway.

I've been listening to the Gayatri Mantra. It always calms me down! X

I’m with a private clinic in London. not CRP. I think the best thing I can do at this stage is query the treatment plan and ask what their recommendations are based on. And also what they will do if it doesn’t work. I really want to trust them but feel unsure about the length of time I’m on clotting drugs and the two infusions. It just seems like so little? But I could be wrong. Might ask for an online consultation before I go down. What questions would you ask @Janefx40?

@MyEasterEggs I'm afraid I'm no expert on immune stuff. It sounds like your questions are sensible. I'd probably ask those questions and then after hearing their answers say that this is different to other clinics and ask why.

Did I already mention the FB group to you, UK Reproductive Immunology?

I picked a clinic I trusted and just did what they said. Obviously CRP and Gorgy are the main specialists and ARGC to an extent. I'm not sure about what anyone else offers.

@Janefx40 I trust the clinic when it comes to ICSI IVF and PGT-A but with immune testing and treatment I’ve been extra cautious because I had a difficult experience with another private clinic (and their immune specialist) a few years ago. It created a lot of doubt in my mind around reproductive immunology.

The change to my plan for aspirin and clexane totally threw me so I suppose it’s made me question other aspects of treatment and I want to feel confident before moving ahead. There have been times when I’ve not advocated for myself over the years, like not pushing hard enough for certain treatment in my last pregnancy then blaming myself when it ended, so perhaps it’s less about trusting them and more about trusting myself.

They probably think I’m a pain in the ass because I do ask a lot of questions. But with thousands upon thousands paid to them and counting I want to understand. So I’ve asked for a consultation to go over my plan and put my mind at ease. I know of three other patients with an almost identical history to me who had similar treatment successfully so I may reach out to one or two of them and dig a little…

@MyEasterEggs so is it your clinic who have advised about the immune add odds? Dr Gorgy acts as a separate entity, I expect Dr Shehata acts in a similar way. Dr Gorgy assesses the case based on what has happened and what tests you've had, suggests further tests and then discusses treatment. I know someone whose specialist doesn't believe in the immune stuff so Gorgy has prescribed it as add ons, in my case I'm hoping my clinic will add his recommendations into the plan I have.

@Gardenlady543 my clinic handled all testing and treatment. I considered making an appointment with Dr S but since they were covering most of the same tests anyway, and doing them in a UK lab, I felt confident in their approach. Though I did ask a million and one Qs about that too 🙃

My consultant does believe immune treatment will support me - so as well as having the two infusions I’ll be on steroids - but he’s only come round in recent years. He also works closely with a reproductive immunologist outside of the clinic and they’re looking to set up a specialist private recurrent miscarriage clinic so I do feel as though he’s put a lot of thought into tackling immune issues. But I don’t suppose I was expecting such a ‘light touch’ with the treatment plan.

Since this is more treatment than I’ve ever had, following the protocol makes sense for this first transfer I think, then I can reassess if needed. Still going to chat about my plan though as I need that reassurance particularly around the aspirin and clexane 😬

This is the first time I’ve tried to get pregnant in three years so it does feel a bit scary for all kinds of reasons and it’s natural I’ll begin to overthink as I get closer. Hopefully, I can nip all the doubt in the bud!

@MyEasterEggs if you've had all the tests then there is no harm in getting a second opinion from someone that specializes in reproductive immunology. A consultation shouldn't cost that much, I think mine with Dr Gorgy was about £250. I don't think there are that many options when it comes to immune treatment, in USA some clinics put people on a kitchen sink protocol where they add in heparin, steroids and intralipids. The only thing I'm having in addition is hydroxychloroquine and LIT.

I think my protocol is reasonable @Gardenlady543 as clexane is a form of heparin. Plus there’s the steroids and intralipids. It’s the length of treatment time I’m surprised by as I drop clexane on a positive test and second/final intralipid infusion is at 6 weeks of pregnancy. It just appears to be steroids, progesterone and oestrogen that I continue with (though I drop them all by 12 weeks) along with the metformin and levothyroxine I’m already on.

I think it’s the fact we lost a baby at 16 weeks that worries me most as we got no answers, the post-mortem revealed very little, and so if there’s no medication to prevent loss at that point it’s a concern. How long will you be on various meds for, do you think, if you don’t have a clear protocol already?

I had a test that ruled out the need for hydroxy and I think LIT is the only thing I haven’t done. I’ll definitely consider getting a second opinion if my consultation doesn’t reassure me 🙂

@MyEasterEggs Dr Gorgy said to let him know if I get a positive as he will then take over management at that time. I'm pretty sure the IVF clinics discharge at the 6 week scan. So he will likely do several consultations and advise based on how things are going.

@Gardenlady543 my hope is that I’ll have continuity of care right up to the 20 week mark (all going well) so I think I need to make my needs clear again. Looking at my notes, it does feel a bit like there’s little support after 6 weeks, and that’s fine in terms of scans as I have a local EPU, but I’d still expect them to monitor my response to treatment or at least prescribe the drugs I need beyond then. Maybe I’ll get more from them upon a positive test. So I’ll ask those questions too! Thanks to you and @Janefx40 for answering. Hate to nitpick but it’s all the little things that I wake up wondering about!

@MyEasterEggs if they will look after you until that point then they must be doing monitoring and adjusting the treatment plan. Maybe ask them about this period. There's no evidence for this treatment so there won't be any evidence about how long it's needed for but most people stay on it until a certain period in the pregnancy. I see people quite anxious about coming off whenever it's due and quite often the specialists will let them stay on it because of this.

I was discharged home today, I'm feeling a bit lightheaded as they gave me a few meds to make the long journey home easier, it was very uncomfortable getting in and out of the car.

That’s my hope @Gardenlady543. I’m sure they’ll be happy to go over everything and give me clearer guidance on what happens and when.

Pleased to know you’ve been discharged. Are you settled up in bed now? How long have you been signed off for and will you have a follow up appointment soon?

Hope you’re doing okay @Janefx40 it must be an anxious time. Hope LO is heaps better too 🙂

@Gardenlady543 Glad you’re on your way home. Sorry forgot to mention that you should travel with a pillow! Use it to brace yourself when coughing too.

@MyEasterEggs I'm on the sofa now, not really sure where I should be as they liked me sitting in the chair and moving about rather than lying down. I don't have a big sit up chair just a corner sofa so I'm lying on that. The surgeon has signed 4-6 weeks off work and will do a review during this time. I'm hoping to go back at the 4 week point, I'm sure that time will go quickly. I'm due to speak to my fertility specialist on Friday so will discuss the plan for the next transfer which hopefully will be in November.

@OrangeBengal I'm home now :) will keep a cushion around though. I bought a toilet stool that should arrive today.

@Gardenlady543 glad you are home and have a good long time to recover. I'm sorry this has been so tough

@MyEasterEggs I'm afraid my experience is that you have to make your own decisions with IVF and immune treatment. There is a tendency of doctors to always do the minimum treatment unless proven otherwise but with fertility stuff you don't really want to have a failed round before being given meds that probably won't hurt you anyway. That's my opinion anyway.

I'm ok. Anxiety starting to ramp up as time passes. Un/fortunately my body behaves pretty consistently when I'm pregnant and I've done enough transfers with the full range of results to know what I'm looking for. So it's hard not to panic that my body currently isn't doing any of those things. BUT I've decided to allow myself the fantasy of being pregnant especially as this is my last time. So I'm not going to be scared to hope - I'm going to try to really believe in the PUPO thing as much as I can.

We have also had a rubbish weekend with DP/DDs camping trip being cancelled due to this mystery illness and both of us being in foul moods/panics about it. I've been struggling with the fact that I had planned myself this calm space to focus on the embryo and instead I have been stressed and miserable.

Anyway I will try to enjoy the next few days

Hi All,

just marking my place on the thread before I go back and read through to catch up

congrats on being PUPO @Janefx40….. everything I have is crossed for you this time round x