Immune/NK cells pred thread #34

I was with CRP until March this year and after 6 months of super ovulation nothing had happened and I found out I have pretty severe endometriosis. CRP wanted me to do another round with endo and I just felt that the endo needed addressing so I banked embryos and got a lap done and parked CRP. I was planning to do the whole protocol when I transferred but fell pregnant the first month after my lap. I was taking hydroxy, aspirin and progesterone but maybe I do need the Pred and intralipids too, or maybe it was genetic, so hard to know. The nhs are going to test the fetus thankfully, my nk cells have only ever been borderline and so it’s hard to know where to focus your energy and funds isn’t it @Jecca88 and as I’m new to the thread, I don’t know if others have had a few diagnoses going on concurrently? CRP had swapped Pred for hydroxy on my protocol cos I was having side effects from the Pred but it seems like some people take both rather than one or the other?

How is everything going @MC8 ??

@Gems2811 i am so sorry you're experiencing this. Have you been with the crp clinic this year? Have they said as to why this miscarriage might have happened? it could be due to immunity still? Did they prescrib you prednisolone?

@Jecca88 thanks for your reassurance on testing - yep I've got my tupperware ready! To be honest it is very light atm, hoping it stays that way until a plan is in place.@Gems2811 thank you, I called EPU and am waiting for a call back, feeling a bit calmer now - hope you're both holding up ok xxx

I’m so sorry you’re experiencing this @MC8 , I don’t have any info I’m sorry, but just wanted to say that I really hope your EPU can help if they’re open today and that I’ll be thinking of you xx

@MC8 my love I’m so sorry you’re going through this. I was given a Tupperware (I know it’s horrendous) but collect anything you can in terms of the blood loss and they can try and test it. This was always my worry when waiting for a D and C. I never actually did that but that’s why they advised me. I have had cytogenetics on 6 week, 8 week, 9 week losses so they can test a very small amount of pregnancy tissue. Sending you all the strength xx

Thank you, I did sleep ok and it’s not too bad. Thanks for the tip on Tooting too - it’s pretty far from me, but luckily my EPU does open from 9 on Saturdays, so will call then and see what they say. I just don’t expect them to come back on a decision on the surgery over the weekend… it feels like the worst possible outcome is happening at every stage but I’ve just got to deal with it now. xxx

@MC8 just so sorry you’re going through this. Most EPU’s won’t be open unfortunately, but if you can get to St George’s in Tooting they have a walk-in service from 8.30. I do hope the pain isn’t too bad and you can get some sleep.

Sorry me again, I’m panicking now as my cramps have got worse in the last couple of hours and now I’ve started bleeding, it seems like the progesterone isn’t going to hold it long enough. I’m wondering if I should call EPU in the morning and reconsider going for medical management? I feel I’m running out of options and this might be the only way to get cytogenetics, though it was confusing when I spoke to them - on one hand they suggested medical management because they could do it sooner than surgery, on the other hand the surgery itself is a problem because it’s so small.

@Gems2811 oh my gosh you’ve been through so much, I’m so sorry. I really hope you get some answers this time.

@Hopeandfaith1990 thank you.

An update from my side - I just had a call back from EPU and they’ve been speaking to the consultants who have said it’s too small to operate within their guidelines :( instead they offered medical management in the hospital which I refused as I think it would totally break me. With my first miscarriage I did expectant management (didn’t work), followed by medical management at home (painful and didn’t work), and then the MVA (so painful) and it dragged on with heavy bleeding on and off for months, so to go back to medical management when it didn’t work last time just sounds so grim. The nurse said they can’t make me consent to something I don’t want, so are going to email all the consultants again and see what they say.

I’m so worried it’s not going to be big enough for testing and I won’t get any answers. It just feels so unfair. It was bigger at my first scan with CRP and my first scan at EPU and all while they waited and followed protocols the sac is collapsing, they struggled to see the embryo today, and now I’m at risk of not getting tested and no answers to how I can move forward, or being forced into another option. Probably won’t hear back again until Monday now. :(

I just read about your experiences with EPU @MC8 and I’m so sorry, that’s just so awful, well done for raising it when you went back in. I have exactly the same fears as you about the wait, and thank you for the suggestion about progesterone. I did continue to take it last night and this morning in the hope that it would hold things off a little longer, it makes sense that it might. I agree on the genetic testing and I’m glad they offer this. It will help me understand whether it was immune related, I was being treated by CRP for borderline NK cells and Super ovulation for 6 months and then found out that I have pretty bad endometriosis because the letrozole really flared intense pain. I had a lap the month prior to this pregnancy, which was following 3 rounds of failed IVF and so now I don’t even know whether my issue is immunological or whether this one was genetic..hopefully all will become clear
I’ll be thinking of you xx

@Fletchasketch thank you, glad you're feeling better, and that they are normal symptoms of pred - I'll be thinking of you on Tuesday!

@Rainbowchaser87 thank you, I'm doing ok - just really want to speed up the process but it's all out of my control.

@Gems2811 I'm so, so sorry for what you're going through, and for your experience at EPU. It's such a horrible shock and the waiting makes it so much worse. Unfortunately I think a week's wait is normal - my SIL recently had a missed miscarriage and had a week's wait before surgery, I'm currently in a similar position. Just had a second NHS scan today to confirm another loss and they couldn't give me a date for surgery - said they'd call me back later today or by Monday... so it's looking like it will be at least a week, unless I get lucky with a last minute spot or cancellation. It's so frustrating and I'm also terrified something will happen beforehand as I really, really need genetic testing done. But as others have suggested seeing if you can get in somewhere else might be a good idea. My EPU suggested I could have an MVA sooner, but I am traumatised by the one I had on my first miscarriage and will not put myself through that again. Are you bleeding? I'm sure you already are but continue taking progesterone, hopefully that should hold things off.

Thanks everyone else for all your good wishes - I did raise my complaint about the Dr's comments with the nurse I spoke to in EPU today, she was very empathetic and said she would raise it internally, but I could also put a formal complaint into PALs. I'll see if I have the energy. Hope you're all ok xxx

@Jecca88 such great news you have a strong heartbeat and it's still growing, try and hold onto that, although I know it's hard. Really hoping it goes ok on Tuesday and things become smoother for you.

I'm self employed so am lucky in the respect that I have a lot of flexibility and there's no-one I need to tell - I can't imagine the extra stress it must cause trying to arrange and attend appointments around work. But I have been thinking about being more open about it for my own mental health as I feel I'm living a weird double life sometimes, all this stuff is going on and no one would have any idea.

Oh that’s really useful to know @Fletchasketch , I’m in Redhill and so Kingstons definitely close enough to self-refer to next time, if I’m lucky enough to get another positive. Thank you so much for that insight. I’m really sorry to anyone else who has had, or is having, a rough time. This is all such a lot. And congrats to all of the pregnant thread members 🩷 pregnancy after loss is also a lot xx

@Gems2811 unfortunately it seems like your experience is not uncommon based on what I've seen on this thread and it absolutely should not be the case.

I hope you find a hospital with a good EPU. I had two positive experiences (well as positive as it can be) at Kingston if you're anywhere near there, they seemed to be very efficient and all of the staff were kind. Best of luck.

Thank you for responding @Fletchasketch and I’m really sorry to hear that you’ve experienced the same. I’ll try ringing around other hospitals nearby. I really wasn’t treated very emphatically at EPU and so I’m dreading having to go back there 😔

@Gems2811 I'm so sorry you're going through this. A missed miscarriage is a horrible shock. I think a week's wait is quite standard, unfortunately. My last MMC was also discovered at 10 weeks, and the heart had stopped at 8 weeks. The midwife seemed to think that because I wasn't bleeding that it could still take weeks. Of course it might not. My hospital was able to carry out the D&C the following morning and so you might find another hospital has availability. I do hope you can get this resolved quickly, sending much love.

@MC8 sorry darling….there are no words…the whole process with the NHS can get soooo frustrating and hurt u even more…
how are u holding up?❤️🫂

@Jecca88 great news that u have seen again the wonderful heartbeat…trust CRP…NHS can be catastrophic sometimes…hope this time passes quickly so u can take a breath once u reach the 12 weeks ❤️🫂

Hi Ladies can I ask a question as I’m feeling a bit in shock and I don’t know where to turn, I was with Dr Shehata last year for about 6 months with no pregnancy but I had finally had a positive result after 3 years TTC and took my hydroxy, aspirin and progesterone on positive test and I have just found out at my 10 week scan with EPU that there is no heartbeat and the baby stopped developing at 8 weeks. It’s a missed miscarriage. I would like the surgical management option but the hospital can’t fit me in until next Friday, is a weeks wait usual? I feel a bit panicked that things will start before then as I have some trauma from a previous miscarriage. Does anyone know if we can ask to be seen earlier at another NHS hospital or is there anything I can do to get seen earlier? Thank you for any help xx

@Jecca88 very glad to hear your baby is still doing well.At least you have some explanation for the discharge. Just hoping it will be gone by the time you have your next scan, I think as a pp said they do often resolve on their own. I'll be in on Tuesday afternoon too for my NIPT so may well see you there :).

@MC8 I really hope today goes as well as it can for you. Will be thinking of you.

I spoke to the nurses at CRP and they said my results were completely normal side effect of all the pred, and the GP was happy with this so can avoid antibiotics for now. Starting to feel a bit more human today, suppose it's not surprising with the suppressed immune system.

Lots of love to all.

@Jecca88 Really pleased that your baby is still safely attached with their heartbeat, Thar is excellent news. I totally understand your worries but I know these bumps can disappear of their own accord so I am really hoping this happens for you and everything continues to go well.

@MC8 Will be thinking of you tomorrow hun xxx

@MC8 Sending you so much love for tomorrow 💗

@Jecca88 Ahhh bless you, its so exhausting. What did EPU suggest? Will they monitor you too? Buuuut, there is a heartbeat, just focus on that when its all getting a bit too much & try not let your mind spiral to all the possibilities, otherwise you'll feel utterly swamped. I know there's that fear after all our histories & its easy for me to say this but...you are pregnant 💓 Focus on the now for now & take each appointment as it comes...we are all willing you on 💪 Much love 💞

@MC8 hope the appointment goes well tomorrow. So sorry your hubby isn't there, these things are hard enough without having someone physcially there and having to take care of yourself. Have you made work aware? are you having time off?