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

❤️

What we’re your immune results @Gardenlady543? My CD69 count was 1.19% and TNF alpha IL:10 was 35.2.

My partner and I have had a few conversations since yesterday and he’s suggesting we follow the current plan, with the exception of bringing clexane and prednisolone forward and pushing aspirin back to a +ve test (all going well). I may also go for the intralipids with Gorgy. And then we could consider further testing and treatment if this cycle doesn’t work out.

I’m feeling quite mixed up. I was aware of the LIT side of things and had consciously chosen to draw a line. And now I’m questioning myself. This is a 4AA embryo and while grading, on the whole, doesn’t really matter, the others are 4BC and 4CC. So it’s only natural I want to make the most of this cycle. Going to try and write all my feelings down this morning and go for a long walk later but wanted to brain dump here in case anyone has found themselves in the same position…or can help me decide? Ultimately it is down to me 😩

@MyEasterEggs when is the transfer cycle? Are you in it right now? I think it's difficult if it's imminent. In my first transfer when I had a rash which turned out to be progesterone hypersensitivity my specialist decided to transfer the worst graded embryo rather than the best, so you could go with one of the other 2 and if it doesn't work reassess the situation and plan things well in advance.

My results were
Uterine biopsies were normal
Blood CD56+CD16+ was 15 (high)
Th1/Th2 was normal
THFalpha/IL-10 19 (normal)
Complete DQA1 match

@birdbybird oh I'm not sure what tests you don't need to be pregnant for, is he doing a endometrial biopsy?

Yes, I’m in the cycle @Gardenlady543. The question I’ve asked myself is…will I regret not trying this testing and treatment if the cycle doesn’t work? The question my partner asked me is what’s next if we throw everything at it and it doesn’t work? I think he likes the idea of having a next step.

Is LIT totally safe? No adverse effects on pregnancy? My partner wondered if I can be over-treated. Appreciate I could have a reaction but I’m just thinking about the potential pregnancy itself. I suppose I do have some concerns about the intensity of all the treatment I could wind up having.

Hi everyone. Loads of chat on here.

@MyEasterEggs it's great that you are up and running and have had your consultation with Gorgy. I was also thinking along the same lines as @Gardenlady543 - if you're testing the protocol why not transfer one of the other embryos?

@birdbybird technically you're not pregnant 5 days post ovulation. But I think it depends what the tests are and why you can't be pregnant. There's not much point doing the tests if they results would be invalid and equally you don't want to TTC if the test could prevent the pregnancy. Such a tricky one.

I know how hard it is delaying TTC for all this additional treatment but in the end I was glad we took out the 4 months to do Mr S's treatment and tests. We had a good break and had a chance to reset.

@Gardenlady543 sorry you're bored and sore! I've also been reading random Mumsnet threads to pass the time! I'll probably meet you on a few.

Xxx

@MyEasterEggs sorry we cross posted. I always try to avoid regrets. Could you maybe do the earlier steroids, Clexane, aspirin etc but leave the LIT for now?

Sorry I didn't phrase that right. It's not easy to avoid regrets but if my heart is telling me to do/not do something I tend to follow it so that I don't regret it later x

Thanks @Janefx40 I'm doing a lot better than I was in the week after the op, so think it's just getting over the next part of recovery now.

@MyEasterEggs you shouldn't jump into LIT, the clinics say it's safe as they test the donors for viruses, but I've heard there is a theoretical risk of issues if the woman that had the treatment needs an organ transplant later in life. I have a complete match so LIT is the main treatment option. But it's a blood product treatment and people should properly think through a decision involving elective blood product treatment.

I have the histology report from my surgery now which reads like the report is only from one fibroid although it states 2 pieces, so hopefully those are the 2 separate fibroids. It says they are submucosal fibroids made of smooth muscle with thick walled blood vessels and normal over lying endometrium with no signs of endometritis or hyperplasia. I'm hoping the presence of blood vessels mean that now they're out my lining will get a better blood supply and I might end up with a thicker lining.

I also got an appointment through for the breast clinic, I was supposed to go a few months ago as I had a ultrasound in January and it was recommended I repeat in 3 months, but I had the hypothyroidism diagnosis and then the surgery. I'm hoping the appointment goes well as I had a biopsy last year and that was very stressful.

Thanks @Gardenlady543 @Janefx40. Appreciate you both helping me.

Yes, definitely going with the steroids and clexane from Sunday (CD7) and aspirin from +ve test. I’ll skip the LIT for now and explore later if needed. That feels okay, I think. It’s very hard to find that gut feeling when your head is so busy isn’t it!

So now to decide whether to have 2 x intralipids before FET. I’m not sure of the need for it as I chatted with another patient and she’s had success with just the single infusion before transfer and two following. I’ve carried pregnancies up to 8, 10, 16 weeks so I think single infusion should be okay with second at 6 weeks (assuming a pregnancy).

I feel so much lighter, thank you x

@Gardenlady543 a better blood supply and thicker lining would be a nice turn of events! Can you ask about that?

All the best with the breast clinic appt. I know it can be stressful to have something like that hanging over you. I have a skin biopsy coming up and it’s always in the back of my mind x

@MyEasterEggs I'll only know what my lining is like when I have a scan in the cycle of the second bleed so probably early November.

I've not heard gorgy advise about 2 intralipids before a transfer so I assume 1 would be fine, followed by the next one after a positive test.

@Gardenlady543 yes, sorry, I meant could you ask if it is likely to make a difference? Or was the whole purpose of op to assist with lining? I don’t know a whole lot about fibroids I’m afraid just that I’ve had a couple of tiny ones in the past!

@MyEasterEggs when I spoke with Mr Trew who knows a lot about lining he suggested the lining might improve because it's being stretched over the fibroid so appears thinner and also because the vasculature can improve. My understanding is that fibroids take quite a lot of the local blood supply. They were pretty small though but then they've said my uterus was pretty small too so who knows. The issue with submucosal fibroids is that they affect implantation, mine were quite small though and I think if I hadn't had 3 years of infertility they would have been less likely to operate.

So it's bad news for me, I just got the LAD result and I haven't responded to the 2 x donor pooled LIT.

I was told 70-80% of people respond, of the 30% that don't respond 25% respond to a further treatment and 5% don't. I was so sure I responded as I was so itchy and the area was inflamed after the first one, but the second one I barely got a response at all.

He likes to see the IgG's over 50% but prefers them over 80%. My T cell IgG is 19% and my B cell IgG is 40%.

I called the clinic and they told me I could pay for a review, it just seems like a lot of money for a review for him to say have LIT again, I asked if she could just show him the result and ask what I should do.

I'm so sick of this, this is like the worst prognosis of patients and I'm still in the small proportion where things don't work out again.

@Gardenlady543

I’m sorry to hear you’ve been in pain. Are you planning a transfer soon? Sorry I’ve not caught up with all the posts!

I had my swab test result today which was delayed and feel a bit scared about my upcoming transfer. Even though the NHS swab revealed nothing was wrong, on the same day I did a private swab just in case and have been told gardnerella was detected. I do have antibiotics metronidazole just in case and will take these when instructed. It’s strange I’ve done two lots of canesbalance after I did the swab and feel like it’s gone now. But I obviously need antibiotics just in case. I started canesbalance again after swab testing.

I think when taking antibiotics I will take your advice with anti fungal pessaries and probiotic pessaries (lactobacillus) and alternate. But I think after transfer I will take canesbalance again to lower ph just in case. Is 10 days of this canesbalance overkill? It did help this time reducing ph from 5 to 4.2 and symptoms disappeared.

@Janefx40

I’m a bit worried about the progesterone. Did you get your estradiol checked on transfer day? I asked my consultant if I could take estradiol because if it was low. I’m started to get nervous as I did not do era for natural modified FET as it is natural and almost like a fresh transfer cycle. I did not do immune testing for fresh transfer when I became pregnant with my son.

I’m just hoping everything is ok.

Hi All!

@Gardenlady543 im so sorry the results were not what you were hoping for. I agree….. the highly expensive 10 minute reviews (to usually tell you what you expect to hear anyway) are so frustrating. I hope they are able to advice based on the results instead.

@2021ivfagain I’m sorry, I don’t know much about the various probiotics. I did do the ERA and it came back normal. They said the majority do so I have just taken probiotics since but they have never suggested retesting?! 🤷🏼‍♀️

@Janefx40 what did they say about your prog levels? Are you still taking the same amount?

i am just en route home from my transfer so officially PUPO. I asked them to test prog levels as have had conflicting advice about how much I should be on.

my last emby didn’t thaw so was very grateful this one did and is safely on board. Fingers crossed the good luck continues 🤞🏻

Thinking of you all ♥️

@Hopeful199 eeeeee!!! Congrats on being PUPO. That is so exciting. You must have been relieved about the thaw.

My progesterone on Monday was 185 and my consultant agreed to prescribe meds at the current level. I imagine he just rolls his eyes when he sees my emails and then just does what I ask 😳

@2021ivfagain I don't know if they tested my oestrogen but I didn't ask.

@Gardenlady543

I’ve just read your post. I’m sorry about your bad news. I hope you manage to get more answers.

@Gardenlady543 so sorry the treatment hasn’t worked on this occasion. Are levels rising? How much is a review? Hope you can get a response via email as it’s quite demoralising to keep ploughing money in when you’re not getting the results you need.

@Gardenlady543 I'm so sorry - I missed your post. I can't believe it!! This is so rubbish. I wish I could come over and give you a massive hug x

Thanks guys, I'm in need of a hug. It's rough being in pain healing from surgery, unable to do much and then to get that news on top.

I'm not sure if a review is £150 or 250, but I'm sure I would just pay to hear, do more LIT. Unsure if it would be 1 or 2 more LIT and whether it would be partner only, donor pooled or donor pooled with partner. I imagine he would say do 2 more, one with partner and one without. I need to know soon though because I have a gap to do this prior to the planned transfer at the end of November. It's just where do I put the boundary at. I already paid for the tests he wanted and LIT x 2 at £1k a go. So it would be another £2k and I mean that's fine if it helps, I budgeted for it helping, but how much do I throw at this when it's not making any difference.

@Gardenlady543 It's so tough. I really don't know. I think you probably do need that review to find out what his thoughts are. Why are you not responding? What is the chance of you responding after the next ones and what are the options if you don't.

This road seems endlessly tough x

@Gardenlady543

Hi. I’ve not had to do LiT, but I can empathise with paying out lots of money for IVF. I was recommended to do batching and realistically I would have been better transferring fresh what I had from first cycle.

Instead IVF has just dragged on with different protocols to improve things. More and more time and money have been spent.

All I can say is you need to think what am I going to get out of this? When I’m in situations like this, I write a pros and cons list. Whatever you do you need to be happy in what you decide to do. For example, I’m only thawing 4 day 3 embryos this time. My consultant was against it, but I knew it was the right choice for me. If my transfer does not work, I’ve probably got one more chance if my fsh is still under control. I would try and go on an even stricter protocol for gardnerella and perhaps era, but I’m running out of time and money.

Overall, you need to be happy with what you decide. I always follow my gut eventually and if I’m able to pursue things I will. Could you have another review and go through your options?

@Janefx40 I'd asked some questions in my initial appointment, he said he likes both IgG to be above 50% but ideally above 80%. At the moment mine are 19% and 40%, I guess they are at least better than they were, since they started at 0%. If I do the same treatment again then I would hope for doubling up to 38% and 80%, I guess still not perfect but any improvement must be a good thing. I do wonder if the antiinflammatories I was on in hospital dampened the response to the LIT treatment, but I didn't really have a choice in that.

In the consultation I asked how many people respond he said 70-80%, but then went on to say of the remaining 30%, 25% respond with another course and 5% don't. I had planned this LIT early, I thought oh I should delay it as it only lasts for 4-6 months and I'd be recovering from surgery for 3 of those months, then I remember thinking that if I needed any more I'd have that time. I'd have to get on with it quickly, but since the cycle would be planned for November I could get another 2 treatments in.

My worry with a consultation would be that it's likely to delay things and I need to get on with things quickly, I could probably manage being driven to London by my husband while I'm recovering right now and I only have 1.5 weeks for that before my husband will be back at work as he's off to help me at the moment. There is no way I'd manage the trip on the train right now. Other issues is his viral tests, I think they will accept them for a 3 month period and that ran out on 8th September, so that would take extra time as well.

As for the options if I don't respond, LIT is not legal in USA and I'm pretty sure the full matches are put on neupogen and IvIg. I have kind of drawn the line at IvIg.

Thanks @2021ivfagain I guess my gut says do everything I can to optimize. So I think I just need to suck it up and try 2 more LIT.
Re your swab result, I am pretty sure there is evidence that the acid treatment and probiotics can resolve BV, so unless you are told to take the antibiotics I think just stick to those testament if you have an imminent transfer. While I am clearly super into resolving microbiome issues, people can get pregnancy with microbiome issues, BV is super common. So just try to keep the microbiome as good as you can.

Congrats on being PUPO @Hopeful199 ❤️