ERA/EMMA/ALICE Testing thread 4

[Janefx40]

New thread ladies! @Gardenlady543 @MyEasterEggs @seven201 @VenusStarr @Violette22 @Yuliaaa

Oh @Gardenlady543 I'm screaming with you. I'm glad you have got your surgery pencilled in. I think with the recovery time delaying LIT might be a good idea. I hope the biopsy goes well on Friday.

@seven201 don't worry too much about the hydroxy, you take a loading dose and can start ttc straight away. You double the dose for 2 days.

How are you @Janefx40 ?

Got my lining scan booked for next Tuesday, will be cd10. Really hoping its not more bas news next week.

Lots of love ❤️

@Gardenlady543 I'm screaming too! It seems sensible to delay LIT especially since that was becoming stressful too with the lack of donors etc.

@seven201 good work on the painting.

@VenusStarr fingers crossed for the scan

Sorry to add to the misery. I just had my consultation and he says we have to delay a cycle. I know it makes sense but I'm in bits. I just can't do this any more. It also means we will miss 2 out of 3 of our camping holidays. And he then thinks we should do a medicated cycle to avoid being cancelled again. That makes sense but makes me nervous as we have never ever done that before. I don't know how I'm going to tell DP. How do we keep going with all this? I just want to find a way to make it better and I can't.

Sorry @seven201 I know what you're going through is worse. Sending you extra love xxx

Oh @Janefx40

Hadn't finished, sorry @Janefx40 I'm so sorry you've got more delays. That is incredibly frustrating and sad ❤️ medicated transfers aren't too bad (although mine did get cancelled 😕) I'm worried my doctor us going to say I need to try natural.
That's so annoying about your trips too!

I hope it goes ok when you talk to your DP xx

@VenusStarr oh thank you, that's reassuring about the hydroxy. Sorry you're feeling nervous about next Tuesday. It's impossible to just not overthink everything isn't it.

Oh @Janefx40 that is so crap. Was it to give your body time to recover? That is so disappointing about the camping trips too; can you move them or not? I take it you wouldn't want to delay by another cycle for the camping (I probably wouldn't either). I guess giving medicated a go makes sense.

What a crappy day.

In better news. After 7 years of thinking my outdoor windowsills need painting, I finally have lovely white ones I'm not embarrassed of!

How are you today @seven201 ? What did you decide about time off?

@Gardenlady543 is your biopsy today? Good luck if so x

How are you @Janefx40 I hope things are with your dp ❤️

Hope things go well today @Gardenlady543 did you decide to postpone the LIT until after your op?

@seven201 I hope you're doing as well as you can be. We'll done on your window sills!

@Yuliaaa how's things with you?

@StillTrying10000 @MyEasterEggs @Violette22 @Babydustt12 I hope all is well with you ❤️❤️

@VenusStarr thanks for checking in 💛

I’m doing okay. Still awaiting endometrio results which is frustrating as it’s been almost a month since the biopsy. My consultant was ill and wants to comment on them before releasing them to me, which I can understand, so I’m trying to exercise some patience…

Heading back down to London on Wednesday to see Raj Rai for TEG test and a few final bloods/urine tests (mainly for my own peace of mind) so progress is still being made.

Good luck with your scan on Tuesday. Sending all the positive vibes to your lining!

Hope everyone else is doing okay 😚

Thanks guys, I had the biopsy.

He didn't scan me, so I don't know how thin the lining was but it was a reminiscent of the first ERA I had, when the specialist didn't get any tissue and had to try 3 times. The first time he got nothing and asked if I have thin lining and I said yes. He got a sample on the second one. I asked for a sample for receptiva which he did. I am usually ok with these biopsies but it was pretty hard today. I asked if the sample was adequate and from his response I assumed yes, he then removed the speculum and then told me the nk activity biopsy sample was adequate but he only got a tiny amount for the receptiva. I don't know if it's enough, the kit was supposed to arrive today but was delayed until Monday and the instructions are in there. On the website it says if you have a test without the kit put the sample in 10% formalin and he happened to have a pot of that. So I have the tiny sample. I will likely see if the surgeon will do a laparoscopy when I speak to him on Wednesday morning before deciding whether I should send it. Since I can't sent it until at least Monday and the early week heat wave seems a stupid time to send it anyway.

I had my file and I noticed he'd circled my fasting insulin of 4.8 (normal is less than 10) and wrote "why?" next to it, I don't have any idea why he did this, I thought this result is optimal.

He also highlighted 3 of the activating receptors on my KIRS result and wrote "all 3 receptors present".

We decided just to get started on the LIT and will have it on Thursday, since it will take 3 months and then I may need another after anyway so I may as well get on with it.

Really worried about this thin lining situation again, Mr Trew did say that the fibroids could be affecting this. So I guess all I can do is get them out and then assess.

It's just shit to be going into all this treatment and surgery so far into the process.

I think the next step is for me to see what this nk activity biopsy shows then book in with him for a consultation to discuss all the results and the plan. I know he wants to start me on hydroxychloroquine 200mg twice a day.

Hi ladies, I’ve seen you on other threads (@Janefx40 @VenusStarr @seven201 )
I'm sorry for your loss @seven201 .
I’m in a similar situation - my third early miscarriage in a row. First mc following ivf fresh cycle number one. Am 41.
is this to be expected at this age or unusual? The first two were before a hydrosalpinx was discovered and treated so not sure if that resets the count.
I’m thinking of doing genetic testing on the tissues from this pregnancy but don’t know where I could do this? The reason is I didn’t Pgt test this embryo and would like to see if that’s why the pregnancy failed.
I’m with Create London but have an appointment on Monday with CRGh for a second opinion.
anyone know what questions I should ask?

Hi all.

@Janefx40 how are you and DH doing now that you know you have to wait?

@MyEasterEggs gosh that is a frustrating wait. I've never heard of a TEG test.

@Gardenlady543 doesn't sound like a great communicator the doctor you saw today. Sorry that the second sample is unknown at the moment. So they have enough donors for the LIT now? That's good! Getting those fibroids out does sound important and hopefully the answer to your lining issues.

@VenusStarr how are you doing? What cd are you now?

@birdbybird sorry you find yourself here and for your losses. Sorry, I don't know what hydrosalpinx (I've spelt that wrong) is? I'm
Under the treatment of the CRP clinic (it's for immune treatment /miscarriages mainly) and they've given me the stuff to send off mine for testing. Maybe it's worth seeing if you can see them for immune testing, or have you already had that?

I'm alright. Still no bleeding or cramping here. I've got my EPU appointment Monday morning. I'm due to go to my friends 40th tomorrow evening so I hope it doesn't start until after then.

Hi @birdbybird I'm sorry for your losses ❤️ you are eligible to have this baby tested, although it doesn't surprise me that your hospital haven't offered. I have had 2 babies tested, one medical management at home and I took them into hospital, the second was a d&c in hospital.
Be prepared for everyone to tell you it's probably chromosomal, but until you test you don't definitely know. Both of mine were healthy.
We've decided not to pgs test at the moment but it's a personal choice.

If you haven't yet, I'd have tests on your thyroid, lupus anticoagulant and aps (clotting factors). Have you been referred to a recurrent miscarriage clinic? This can take a long time though to get seen, so you might want to consider private. A lot of ivf clinics do these tests but in my experience they aren't miscarriage specialists so might be better to see a specialist.
Our issue is Reproductive Immunology, but we didn't get testes for this until my 4th loss and its expensive. Xx

I'm glad you had your biopsy @Gardenlady543 it's hard not to worry isn't it. Are you under Dr Gorgy now, did he do the biopsy today? I'm sorry it was difficult to get the sample though ❤️ I hope you weren't in pain.
Is Mr Trew doing your lap? Hopefully he'll get a good look at everything. When is surgery again?

I'm sorry you're still waiting for your results @MyEasterEggs very frustrating knowing they're back.
I wanted the TEG tests by my Tommy's clinic said they don't do it. Annoying that each area is run differently.

I'm nervous about the scan but I am quite liking not being in treatment at the moment xx

Cross posted @seven201 took me ages to write that!

I hope you can enjoy your friend's birthday tomorrow ❤️

I'm cd6 today, had to check! I'm ok, having a glass of wine tonight 😌

Hi @birdbybird welcome, sorry to hear of what you're going through, we seem to be the complicated lot here so I hope you can stick around and get some support.

Thanks @seven201 I hope you're ok, it sounds like you have been very productive over the last few days! You have to get the painting out the way now because it's going to be too hot next week. I hope you get some answers soon.

They ended up having enough LIT donors to chose either day, so I chose Thursday as my husband is worried our pets will need us around to provide cooling actions on Tuesday!

@VenusStarr yeah it's Gorgy who's dealing with the immune stuff, they told me to book a review once the nk activity biopsy is back to discuss treatment, I know he wants me to start hydroxychloroquine but I prob will hold off until after surgery as it's an immunosuppressant.

The surgeon will hopefully be Alan Farthing, looks like the best gynaecologist in the UK, good enough for the queen and delivered the future king! I don't know what the op will be yet, it might all be a hysteroscopy.

The lab got back to me and said there is no minimum size for the 3 tests they do (receptiva, marker for endometriosis and a marker for receptivity) as long as the sample sunk rather than floated at the top it's fine.

Hi everyone

@Gardenlady543 glad you got the biopsy done but frustrating re the small sample. I really hope that the lining issue is sorted by the fibroid.

@birdbybird hello! Yes I remember you. I'm so sorry for your losses. You have had a rough ride. I'm with CRGH tend to favour an embryo banking and testing approach. It's been a loooong process. They're ok as a clinic. They offer all the additional tests/treatments etc but you may need to ask for them. Who is your appointment with?

@seven201 sending you love. I hope you can enjoy your friend's birthday.

@VenusStarr enjoy the wine.

@MyEasterEggs so frustrating about the results. It's hard enough waiting but even harder when you know they are back.

@VenusStarr @seven201 thanks for asking. I haven't told DP yet. I asked him on Wednesday night if he wanted to talk about it and he said no so I haven't told him. The biggest decision is whether to go for natural or medicated transfer. My consultant has agreed I can do a scan when I get my positive OPK next month to check the lining. I think if it is thick, I will go for another natural. If it isn't I will probably do medicated. I don't want to be cancelled again (although of course that can happen on medicated too!) but I'd rather stick to what we know if possible

Xxx

@birdbybird sorry my message got muddled because I edited it. I meant to say:

I'm with CRGH. They tend to favour embryo banking and testing.

Personally I think it depends on your circumstances. I did it because I was 43/44 so the chances of getting a viable embryo were super low and I was very short on time so wanted to minimise the risk of cycles not working and then being more delayed. Of course there are no guarantees because I've recently had a chemical with a tested embryo. I probably wouldn't have done it if I was younger or if I'd had losses tested and knew they were chromosomally healthy. I think I assumed that my losses were down to chromosomes but I now know differently.

I'm also under the care of Mr Shehata at CRP so immunology is an issue for me too.

@Janefx40 it's really hard to know what to do, I hate medicated and want to do unmedicated but my lining issues mean it's unlikely an option for me. I think monitoring to see if you can transfer one more time is sensible. I don't like the medications but in the end of the day it's a lot more predicable and less like to get cancelled.

@seven201 I'm not sure I've had immune testing. I'm compiling a folder with all my tests: This year I've had prolactin, free T3, free T4, TSH, Thyroglobulin Antibodies, thyroxine (I think this all comes under thyroid...) tested. Last year I had: Antiphospholipid antibody syndrome including a thrombophilia screen, anticardiolipin antibodies, lupus anticoagulant, anti-beta-2 glycoprotein-1 antibodies tested (I got this list from consultant's letter). All were normal.
I had an HSG which diagnosed a "moderate hydrosalpinx" in my left tube. This got missed in multiple ultrasounds. It is fluid in the tube due to the tube being blocked and can wash away healthy embryos and was diagnosed when dye from the HSG failed to spill on my left side. I had this treated with a laparoscopy in January this year and they removed part of my left tube. I thought after this my miscarriages were behind me but I was left with only one tube, so tried another 3 months to conceive then went to IVF. But now I've had another miscarriage after a 5BB blastocyst transfer (untested but they were quite pleased with the grade). I have a day 6 4BA, and day 6 4C-something but I'm concerned with the miscarriage yet again and at 41 (almost 42) not sure what to do. My husband is 48 so clearly his age isn't helping either.

@VenusStarr I just read that testing babies from miscarriages is only conclusive if it was a boy as the mother's cells can be mistaken for baby's cells. So I'm worried about that now. But I will still try.

@Janefx40 my appointment is with Dr Ozkan Ozturk. Have you seen him? I'm going to try to see Dr Shehata too. I'm planning to put all these results in front of them.

Thanks so much for all this info ladies.

@birdbybird I've had a boy and a girl tested both were normal. I think it is a factor to consider. But with mine, there was no question our girl's result may have been contaminated.
I can see you have had a lot of the recurrent loss tests and were normal. Mine were too. I'd say if you can get this baby tested, it would give you answers for this pregnancy. It might be worth exploring immune factors. I very much feel like we got to a point where we were ruling things out, rather than looking for answers.

I'm sorry you're going through this 😪

@Janefx40 I feel the same about our FET, my first was textbook and it worked, so I'm anxious they'll suggest a different protocol. Sounds like your dh is keeping his head down, mine is a bit like that at times.

Excellent choice with your surgeon @Gardenlady543 🙂 hydroxy is an immune modulator, but if you do hold off starting it, I don't think it will have a negative impact x

@VenusStarr thank you. I had really high hopes for this last one. I have to go for a scan to confirm no heartbeat and until then I'll be in limbo. Really struggling to think of anything else. Am wondering how long I should allow myself to grieve over this.

I'm so sorry @birdbybird 😞 in all honesty, I'm still grieving for my last baby, we lost her in November. I do feel ready to try again though. But I didn't until we got the cytogenetics back. It's really individual though. After previous losses, I was desperate to get trying again but this one's definitely been the longest.
If you did decide to see Dr Shehata, there's no specific time to hold offtor the tests. Me, @Janefx40 and @seven201 are at the CRP Clinic x

@VenusStarr do you mind if I ask which clinic you went to to investigate immune factors?

@VenusStarr just crossposted. When you say no specific time to hold off for the tests... do you mean they can be done any time and don't have to wait for mc symptoms /hormones to subside?

I'm with Dr Shehata at his CRP clinic in Surrey @birdbybird I've previously done the nk cells biopsy which looks at uterine nk cells, but just gives you a count - one was normal and one was very low, indicating poor stem cells. But the doctor (professor Brosens at Coventry implantation clinic said that it was likely a fluke).

Dr S puts your blood into a pregnancy state and found that my nk cells a normal count but are highly activated - I think normal activity is under 1 and mine is 3.5, so I'm on the full complex plan of prednisolone, hydroxychloroquine, intralipids, cyclogest and as I'm doing ivf I also have fragmin and lubion. After my last loss on that protocol, he's added in gcsf injections, but I've not tried with that yet. X