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ERA EMMA ALICE testing thread 7

1000 replies

VenusStarr · 23/02/2023 22:00

Hi all. We're on our 7th thread! Really hoping for some more positive news in the coming months.

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VenusStarr · 11/03/2023 13:43

Ah, that makes sense @Enfys23 and knew I'd missed something! Keeping everything crossed for you ❤️

Have an amazing trip @Gardenlady543 🇺🇸

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2021ivfagain · 11/03/2023 18:23

@Gardenlady543 Have a nice break away. Sometimes a change of environment can be really good.

@Enfys23 Are you doing a transfer soon? Sorry struggling to keep up with the thread at present. Husband not well at present and he’s still self-isolating.

I’m sorry I’m not going on here as much. Finding things a bit difficult. I just started metronidazole today but this time I’m doubling up on oral probiotics with a digestzyme to break down biofilm apparently.

If this does not work, I will take fluomizin @Gardenlady543 recommended. Does anyone know if it kills off lactobacillus? I know it’s not an antibiotic and I’ve probably asked a silly question. My nutritionist wants me throw everything at this.

Does anyone know if digestzymes work?

Enfys23 · 11/03/2023 18:52

@2021ivfagain I am sorry it has been a rough time and your husband is still poorly needing to self isolate.

I think it will kill some Lactobacilli too as it’s a type of salt that will damage most bacteria? Not sure about the digestizymes.

Yes, natural cycle frozen embryo transfer with the last blastocyst we have from 2nd stims is on Wednesday. Is it bad I’m preparing myself for 3rd cycle 😬. I really need to get my mindset a bit more positive for this embryo. Maybe it’s just self preservation but I know it doesn’t take the devastation away when you see that BFN so I may as well try and be positive.

Enfys23 · 12/03/2023 18:41

Hope everyone has had a moment they’ve enjoyed this weekend.

just wondered if those taking supplements stop or continue from embryo transfer day? Not sure if ok to continue vitamin E 400iu, ubiquinol 200mg. I have stopped the 4g L-Arginine from ET day before but not sure about the others. I’m also taking pregnacare preconception max and oral probiotics. Thanks for any advice!

Gardenlady543 · 12/03/2023 21:34

@Enfys23 during transfer cycles I stop taking omega, because I think the intralipids are similar and apparently omega needs to be 2.5:1 EPA to DHA ratio which mine isn't. I keep taking all the other supplements I take throughout: prenatal vitamin, ubiquinone 200mg (if people are on more than this they normally say to reduce to this), vitamin d 2000 units, vitamin b complex, methylfolate 1000mg, probiotic.

My relaxing holiday did not get off to a good start, turned up to find no ceiling and water coming in, in the expensive Airbnb we booked, we had been up for 24 hours for the journey and were completely exhausted. We had to stay as we had nowhere else to go and try, but also find an alternative, as Airbnb wouldn't help move us. We managed to get some of the money refunded but Airbnb won't give us the taxes and fees back so aside from the first day of the holiday being ruined I'm out £450 :( I have booked somewhere else, it doesn't look as nice, but hopefully it has a ceiling.

Enfys23 · 12/03/2023 21:50

Thanks for this @Gardenlady543

Oh God what a nightmare!! That’s awful about Airbnb too, I thought they had more protections for guests. So sorry to hear this. I hope the next place is better than you think, and you can enjoy the rest of your break xx

Spin101 · 13/03/2023 20:55

@Enfys23 I hope you’re doing ok. I’m sorry you’re alone for this transfer. I’m preparing myself for a 2nd stim cycle even though I have 3 embryos in the freezer so know exactly how you feel. All the best for Wednesday. I’ll be thinking of you x

@Gardenlady543 I’m so sorry that has been the start of your holiday. I hope things only get better and you’re able to relax and have a proper break!

@2021ivfagain sorry to hear your husband is still unwell. Wishing him a speedy recovery!

Gardenlady543 · 14/03/2023 01:20

Thanks @Enfys23 and @Spin101 the new place is ok and I managed to get the full refund sorted. Not a great start to the holiday but it's sorted now :)

How's everyone doing?

Enfys23 · 14/03/2023 06:23

So glad you got it sorted @Gardenlady543 and can now enjoy your holiday.

Work was very busy yesterday but I’ve taken today as a half day so while it won’t actually be that as need to catch up on some bits after going to the clinic for the progesterone bloods at least means I won’t be working late tonight.

Faithhopelove83 · 14/03/2023 15:52

Hi everyone,

I'm so sorry for going MIA not long after I joined you in January. I've been so overwhelmed with my situation and have had a terrible time with my clinic/investigations/treatment (not to mention work). It's been one thing after another (long story) and I'm losing confidence in my clinic (who I've been with for the last 3 years of my 6.5 year ttc journey).

Particular apologies to @thislittlebird , I know you asked me about my fresh IVF cycles and fertilisation rate and blasts. I'm so sorry for not responding, I must seem so rude. I hope you're doing as well as can be. I've been thinking of you.

I need to catch-up on this very busy thread. I'm sorry @Gardenlady543 about your cancelled cycle, you must be so disappointed, but I hope you're having a lovely time in LA. Likewise @VenusStarr I hope you're having a lovely holiday too. Sending hugs and encouragement to everyone who is still struggling / under treatment. And wishing @Enfys23 all the very best with your transfer tomorrow, I'll be thinking of you (we'll be in the 2ww together!).

So ultimately I ended up having the Chicago lab tests based on reassurances I received from my clinic (also I'm not based in London and can't afford any more delays). The first lot of bloods were messed-up (long story). So I had to have them done again, and that time I was unwell with a bad cold/flu virus and had been for several days. I phoned my clinic the day before the test to ask whether this would affect the test (as my immune system would have been in over-drive) and they assured me it wouldn't - so I went ahead. But then when I had the review with the Consultant (to discuss the results), he said there would have been an inflammatory response and he couldn't say either way whether the test results were affected! So now I don't know whether the test results are reliable; whether they're worth the paper they're written on. Does anyone know the answer to this please?

The results showed increased NK cell activity (25.4%) and the level of NK cells were at the upper end of normal at 12%. TH1:TH2 ratio was very high at 44.4. But could this be because I was unwell? The previous explanation we were given for our miscarriages was sperm DNA fragmentation (my level 1 recurrent miscarriage tests were all normal) so it's all very confusing.

I've gone ahead with treatment (intralipids, prednisolone and inhixia) in any event, as I feel I have no choice. Treatment has moved quickly and I'm actually in the middle of a medicated FET cycle, with transfer scheduled for this Friday. Which leads me to a couple more questions I'd be so grateful for your help with -

I had a scan last week and all looked well with the lining but, a couple of days later (before starting the progesterone pessaries), I had the worst night sweats for 2 nights in a row, and I've had some cramps, and I'm now worried that my estrogen levels could be dropping (I only ever get night sweats when my period is due). Can this happen (dropping estrogen levels) and, if so, would it affect the lining? I've managed to persuade them to retest my estrogen levels tomorrow but they won't rescan me, which I think is nuts. What should the estrogen level be?

Also, I was due to have my progesterone levels checked on Thursday (the day before transfer). I've now been told I can have this checked at same time as estrogen tomorrow, or on Thursday as previously planned (for some reason they can't do the estrogen on Thursday). Apparently it won't make much difference. But why then is the protocol concrete about having progesterone tested the day before transfer (not 2 days before)? What's best for me to do here? And what should the progesterone level be?

I'm sorry for the long post and all the questions. Although I've been through 3 IUI and 2 fresh IVF cycles, this is my first FET and I'm really conscious that this time I am completely reliant on the estrogen and progesterone drugs as not producing my own. I don't want to waste another precious embryo.

Really hoping that the intralipids and prednisolone make the difference this time, but I'm conscious that some of you ladies have been on this treatment for months prior to ART cycles, whereas my clinic seems to think this isn't necessary. I only had to do day 21 intralipids, followed by pred along with IVF meds from day 1 and further intralipids on day 8. I've no idea if this is right.

Any thoughts / advice would be much appreciated, thank you xx

VenusStarr · 14/03/2023 17:16

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Faithhopelove83 · 14/03/2023 18:07

Thank you @VenusStarr
I'm with Care. That's good to hear you agree with erring on the side of caution with the immune treatment. I've had 2 lots of intralipids, the last one was a week ago, so 10 days before transfer. I increase the pred dosage on transfer day and start the blood thinning injections then. Then on positive test, it's more intralipids at weeks 4-5, 8 and 12. I'm just so anxious about this transfer and struggling to muster positivity, partly because I've experienced so much failure and partly because I've had a terrible time with my clinic and have lost confidence that they are doing the best for me. Do you think it matters if progesterone is tested 2 days instead of day before transfer?
I'm so sorry to hear your DH is still so poorly, it sounds awful, and so frustrating that the doctors aren't helping. I'm sorry it means a rubbish start to your much needed holiday. I really hope he gets better soon and you can both enjoy your break xx

Enfys23 · 14/03/2023 20:48

Thanks for the good wishes everyone. I’ve got everything ready so can really chill out and not do anything too strenuous next couple of days while DH still away. I’m glad I’ll be seeing my acupuncturist for the pre and post sessions. It felt a lot more reassuring last time knowing there was a back up if one failed to thaw but everything riding on this one feels quite scary. I’m really trying to focus on positives about my lining and not agonise over 0.4mm!

@Faithhopelove83 I can understand why you’d be concerned about the hot flushes. Are they still ongoing? I think it would be unlikely the oestrogen would drop if you were absorbing it well to get to a good lining etc and hadn’t changed the dose. My clinic checks progesterone on day 3 of starting it in medicated cycles, which I’m guessing is similar to what yours is doing. Weird they all have their quirks about timing of stuff. Sound sensible to be trying an immune protocol - is that via your Care clinic? I don’t really know much about this but as these cells are involved in fighting infections especially virus infected cells I could imagine being poorly with bad cold might affect results in some way, but I’m really no expert. I’m sorry there so much uncertainty and stress for you. I hope things look calmer by Friday.

@VenusStarr I’m sorry your break isn’t really going as planned. I still hope you are having some downtime and a change of scene at least. It sounds awful how bad your DH is - could you see another GP when you go back and ask them to look over things again then if no progress get referred for private? Did he have any issues before the doxycycline?

@seven201 thinking of you ❤️

Faithhopelove83 · 14/03/2023 21:50

Thank you @Enfys23
The night sweats weren't as bad last night. The previous 2 nights I was absolutely soaked. Thank you for the reassurance, that makes sense. I just can't think what's causing it.
Yes, my progesterone test is supposed to be day 5 of progesterone, this being the day before transfer on day 6 of progesterone. I can't decide whether to move it until tomorrow or not, but it's reassuring your test was day 3 of progesterone. I guess the earlier they test, the more time there is to do something about it if levels are too low.
Yes, I'm doing both the IVF and immune therapy through Care. The NHS/Tommys recurrent miscarriage unit didn't test me beyond the level 1 tests.
I agree with you that the NK/immune test results must have been affected by the cold/flu virus, but I wonder to what extent (if at all). Of course neither the lab nor the clinic will say. I'm hoping someone has come across this before.
Wishing you all the very best for tomorrow. I so feel for you with DH being away and it being your last embryo. I can imagine how nervous you must be. Will be thinking of you xx

seven201 · 14/03/2023 23:13

@Enfys23 best of luck for tomorrow!

@Gardenlady543 and @VenusStarr I hope the holidays improve. Hopefully the blips are done now and you get to relax and enjoy it. Sorry about your dh Venus, so incredibly frustrating he's not actually getting proper help.

@Faithhopelove83 do you think the night sweats could be just a bit of a bug, there are so many going round right now? I don't know much about estrogen levels I'm afraid. So frustrating that you don't know if all those (expensive) tests are valid! I'm on a similar treatment plan.

VenusStarr · 14/03/2023 23:23

We're at the hospital ☹️ He's just gone through but I'm not allowed in. I'm quite scared about what's going to happen xx

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Gardenlady543 · 14/03/2023 23:34

@Enfys23 glad you've got a little bit of time off.

@Faithhopelove83 what a stress with the bloods, how frustrating!

I have heard it's the estradiol on trigger day that's important when in modified natural cycles (over 500 is a good value I think) but yours is medicated so I'd be very surprised if it's dropped. I think it's more likely the immune treatments. Progesterone is debatable at the very least 30, specialist clinics like it over 100, but this tends to make clinics like mine freak out, mine was 160.

Oh dear @VenusStarr you've had a dramatic start to your holiday as well, I'm sorry about your partner being unwell still. Amitriptyline is a bit of an all rounder good for nerve pain in particular, helps people get to sleep and as an antidepressant but the dose is much higher for this. Does cause some people morning grogginess.

Thinking of those having transfers! Also thinking of @seven201 is it scan time soon?

Holiday is going much better now :)

Gardenlady543 · 14/03/2023 23:36

Oh gosh @VenusStarr cross posted, I'm sorry he's become more unwell and that they won't let you in, thinking of you ❤️

Gardenlady543 · 15/03/2023 02:26

@VenusStarr how are you doing, any update?

VenusStarr · 15/03/2023 02:31

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Gardenlady543 · 15/03/2023 03:05

@VenusStarr didn't they rule out gallbladder issues in the recent hospital visit in the UK? Obviously it could always be this even if it wasn't this before, but I'm a bit weary of these places in tourist destinations, they seem to insist everything requires an expensive hospital stay that insurance doesn't cover. His calcium could just be raised because he's dehydrated since you're in a hot area and he may not have been drinking enough with the pain. A scan and IV fluids sound sensible, 3k though, I don't think so.

VenusStarr · 15/03/2023 03:29

I know @Gardenlady543 😟 ugh. The insurance company are being really helpful. He's staying in, I paid €2000 but the insurance company have guaranteed this back ASAP. I'm currently sitting outside the hospital waiting for a taxi... feeling quite vulnerable and upset xx

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seven201 · 15/03/2023 06:05

Oh @VenusStarr how stressful! So sorry you're having to deal with this.

Janefx40 · 15/03/2023 08:30

@VenusStarr I'm so sorry - this sounds super stressful. I can't see the original post but it sounds like he is in hospital he's in good hands. The insurance/ money stuff is stressful but the main thing is that he's being cared for xxx

Faithhopelove83 · 15/03/2023 08:41

Thank you @seven201
It's not a bug, I'm fit and well thankfully. Been a bit paranoid about the immune therapy and largely isolating (apart from going for walks). If it's not the estrogen, it must be the pred, but it's weird because it feels hormonal.
Yes, massively frustrating not knowing if the NK/immune tests are valid. I'm raging with the clinic for giving me the assurance that it was fine, then backtracking afterwards!
Ah, we're on a similar treatment plan 🙂. I hope yours is going well. Sorry, I need to catch-up on the thread, are you mid cycle or between cycles at the moment?

Thank you too @Gardenlady543
That's really reassuring. It must be the pred, but strange the sweats are only kicking in now after being on it for a couple of weeks. Thank you for the estrogen and progesterone levels. Do you think it doesn't matter whether I get progesterone tested today or tomorrow (transfer Friday)? Thank you for taking time out of your holiday to help!

I'm so sorry about DH @VenusStarr , that must be so scary, especially whilst abroad. I'm glad the insurers are at least helping. And I hope the hospital finds and can treat whatever the problem is that hasn't been identified by the doctors here. Sending hugs xx

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