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Miscarriage/pregnancy loss

Find support and share your experiences on our Miscarriage forum. See also legal rights and support after baby loss.

Immune/NK Issues - aka Pred Thread no 26

998 replies

KtAgs · 11/10/2020 19:00

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

OP posts:
Wireless77 · 06/12/2020 21:42

I'm sorry it was a bfn for you @VenusStarr, take good care of yourself. Hug!
Question to everyone who has done/is doing superovulation with Ovidrel 250 trigger. Have you ever tested out the trigger and if so, by when was it out of your system? We're supposed to test at 10 dpo (12 days post trigger shot) and many of us are guilty of testing a day or two before that...I guess there is no way knowing if the 2nd line is bfp or remnants of the trigger until the lines get darker?

Rebecca9876 · 06/12/2020 22:36

This reply has been deleted

Message withdrawn at poster's request.

Everhopeful35 · 07/12/2020 08:54

Thanks so much for your thoughts @Rebecca9876 @KtAgs @LaurenAB94 - I really appreciate it. It sounds like it might be sensible to have the scan, especially if they're going to probably do intralipids that day too. Just calculated again and the 22nd puts me at 6 weeks, 5 days, so I guess you would expect to see a heartbeat by then. I'm just so terrified that our Christmas will be ruined and we're hosting people this year, which will be a lot to cope with if we get bad news. I know I need to have more faith in the protocol Mr S has prescribed, but to be honest I'm most worried about chromosome issues after my recent experiences. I think we'll call the nurses today and talk about our concerns, and then see what they say, then make a decision. @Daffodil21 Gentle congrats on your BFP! Looks like we have very similar dates. I don't want to sound ungrateful, as I'm so happy to be pregnant, but it's hard to deal with this over the Christmas period isn't it? Not sure about you but my previous miscarriages have all been around six or seven weeks, which is why I'm so nervous about this scan.

Daffodil21 · 07/12/2020 09:48

@Everhopeful35 yes all mine have been 6-7 weeks too, so there's absolutely no way I'm having a scan a approx 6 weeks just before the family arrive for Christmas. They know what's going on, and I've explained that there is a high chance of things beginning to end while they are here. I sort of feel ok about that, obviously it's not ideal but I feel I can manage it ok (assuming it would be as before). I'm not on any proper treatment (apart from some pred and progesterone left over from last time, prescribed by a consultant as a 'just in case measure' - I don't even know if I need it) so for me I don't see how there will be a different outcome, but it sounds like you're in very good care so there is every reason this should be ok. You could call them and have a chat, maybe see if there's a date between Christmas and new year? Nothing wrong with going ahead with the date you have of course, I personally couldn't face the possible uncertainty or bad news then, but I've also decided against any scans before 9 weeks or so.
I'm actually quite glad it's over Christmas tbh - it's a welcome distraction!

Whyisthistakingsolong · 07/12/2020 10:38

@Everhopeful35 I totally get you re the scan. Could you just get the intra lipids and have scan after Xmas?
@VenusStarr sorry to hear. You can have a drink and eat all the food over Xmas now though!

Congrats @daffodil21

I just tried to book a mid cycle scan to see if my potential retained tissue has gone, and they are fully booked all of next week. Hope they can fit me in!

VenusStarr · 07/12/2020 10:57

I thought I was coping well with it being negative but I'm not good today 😢 I'm not coping with the unknown, waiting for my period. If it arrives tomorrow we can't ttc next cycle because I ovulate early on cd10/11 and I won't be able to get intralipids on time if I test positive. I'm waiting for the clinic to come back to me on what to do, even if Wednesday is cd1, it's cutting it fine. But then it's probably unlikely we will even conceive anyway. I'm just so tired of this. Sorry for the glum post, just feel like I've mentally crashed.

Everhopeful35 · 07/12/2020 18:49

@VenusStarr I'm so sorry you're having a rough day. I must say that I'm quite angry the clinic isn't open for so long over Christmas and forces people to make these kind of decisions. I understand that everyone had to take time off, but their break seems long for a medical facility. I rang the clinic today to try and make up my mind about the scan and they said I could have a scan and intralipids on the 30th, but they wouldn't advise this because that would be late for the intralipids, so I'm going to stick to the 22nd. But I was surprised because the sign in the clinic says they're closed until January 4th. The nurse said that they are open for those services though, so worth checking? xx

VenusStarr · 07/12/2020 18:57

That's interesting @Everhopeful35 they did come back to me and said it wouldn't be ideal but the intralipids do last for a month, so if I was a day or so late for the intralipids for a positive test, it wouldn't matter too much. But interesting to know that they are open (or could be) as I'd likely be testing on 29/30 December.
I'm booked in for ovulation intralipids on Monday - they confused me because they said they were at Harley St on Mondays so I wasn't sure if they'd told me the wrong details, but apparently they only do intralipids at Epsom.
Thank you, I'm having a glass of wine and a soak in the bath tonight. Just feeling a bit silly for being hopeful.
I've got everything crossed for you for your scan ❤️ xx

Rebecca9876 · 07/12/2020 19:17

@VenusStarr so sorry you’ve been feeling down, wine and a soak in the bath sounds amazing though.

Just a thought - if you’re testing around 29/30 you probably won’t miss anything during the time they’re having a break and are closed, because you only need intralipids within 7 days of a positive test (assuming you’re on intralipids?). The rest can wait/you can have the other meds ready to go? I didn’t know they were open during that week (bit annoying actually as one of my scans would work much better then as it’s currently going to be very early) but suspect it might be for pregnant patients (the nurses mentioned to me they are prioritising those who are already pregnant over Christmas which I know isn’t ideal but makes sense in terms of medical care) - but as I said I didn’t know they were open so worth asking them.

It sounds like you will be trying over Christmas come what may and I totally get that. I don’t know if it helps but I had a bit of a meltdown over everything late in the summer (and burst into tears in Dr S’ room telling him how low I was). We agreed I would take a break from trying and the meds, and I just enjoyed myself and worked on my mental and physical health. I found it hard as up until then had just wanted to keep trying and trying each month, but it turned out to be the best thing I could have done. I have felt more like my old self again since that break - and my mind was in a much better place. We then fell pregnant when we started again in autumn and, whilst that may have been coincidence, I do think mind and body were better aligned for things to “work”. It’s just an idea, just in case you think about taking a break. But I know how hard that is to do!

Meantime enjoy your wine and bath, really hoping you feeling a bit better soon x

Hazlet2 · 07/12/2020 22:50

@VenusStarr I'm really sorry you're feeling down - it's so crap! Completely get it, and like @Rebecca9876 just said, having a break and taking the pressure off can often be a really good thing to do for your mind and body. We're taking a break for Xmas before starting and I already feel lighter. Might be worth taking it easy for a few weeks, enjoying Xmas and starting fresh in 2021? But obviously totally up to you and what you feel is right 💛

@Everhopeful35 good luck with your decision, sounds tricky but I have my fingers crossed it will all work out. @Daffodil21 congrats!

Hope you're all doing ok x

Rebecca9876 · 08/12/2020 09:24

@VenusStarr hope you’re feeling a bit better today x

LookingforAnswers86 · 08/12/2020 10:55

@venusstarr i am so sorry it wasn't your month. Testing early always plays tricks on me, it is so hard to know. It sounds like you can try again this month and enjoy some christmas drinks, I know the waiting is absolute torture but it will happen :)

@Everhopeful35 uck I am always the same as you. I almost prefer not knowing but I think i would follow the clinics advise that's what I am going to next time...I keep telling myself they know best and have answers (I hope I am right :))

@Daffodil21 I have everything crossed that this pregnancy goes ok.

@Rebecca9876 is your 12 week scan this week?? Good luck x

Rebecca9876 · 08/12/2020 11:29

@LookingforAnswers86 I can’t believe I’m writing this :( I am 12 weeks today and my scan is tomorrow. But just now I started bleeding heavily, went to the toilet and a huge mass of tissue came out. There was so much :(

I just can’t believe this is happening again. If this is a miscarriage it will be the fifth baby we’ve lost since February this year. That’s so many in quite a short space of time. And 12 weeks is supposed to be the “safe” date - I was literally going to announce our pregnancy after the scan tomorrow.

I am praying it might be the twin we lost but that was 5 weeks ago now and should have been reabsorbed by now (it was disappearing at my last scan at 10 weeks).

My local EPU has once again said they can’t see me today (they are useless) and the other nearby EPU is now closed for the day. I’ve called the CRP clinic and they are seeing me for an emergency scan at 4. I am just hoping and praying that this is somehow now what it looks like. Please cross everything for me :( xx

LookingforAnswers86 · 08/12/2020 11:58

@Rebecca9876 oh god, you have been through so much already in the last few weeks 😡 I am so glad they managed to fit you in for a scan later. It may be your body flushing out the twin you lost early on - I am guessing your body would try to get rid of it at some stage if it hasn't so far. I really hope everything is ok. Let us know how you get on xx

KtAgs · 08/12/2020 12:02

Oh gosh @Rebecca9876 I'm so sorry this is happening as it sounds so stressful. I have everything crossed for you. Please let us know how you get on - I get it must be an agonising wait until 4. What's the journey like for you to get there? Thinking of you, Katy x

OP posts:
Rebecca9876 · 08/12/2020 12:19

@LookingforAnswers86 @KtAgs thank you both. The clinic have managed to fit me in just before 2pm instead (I think they are squeezing me in before a consultant starts work), so it’s not so long to wait (it’s a half hour drive for me Katy). I’m just sitting here praying it’s the lost twin, but I have also started cramping and they told me before that that in itself could push the other baby out if it gets bad. All I can do is hope. I am really done with all this though I have to say - if we have lost the baby then I don’t think I want to carry on trying anymore :( I will let you know how it goes, thank you so much for your kind words. Xx

Wireless77 · 08/12/2020 12:52

@Rebecca9876, no words to comfort you, but until you know, there is still a chance. I keep everything crossed for you! x

VenusStarr · 08/12/2020 13:12

Sending you so much love @Rebecca9876 ❤️❤️

Everhopeful35 · 08/12/2020 13:18

Oh no @Rebecca9876 😔 I'm so so sorry to hear this is happening, and the day before your 12-week scan! I'm keeping everything crossed that the scan this afternoon is positive and that the bleeding is related to the loss of the second twin. When I lost my twin it disappeared quite quickly but I did have bleeding throughout that time. Hopefully the healthy baby is far enough along now that it won't disturb it. You're in my thoughts. Praying this turns out well for you xx

NICK7nick7 · 08/12/2020 13:31

@Rebecca9876 So sorry to hear this, thinking of you and praying that this turns out OK for you. You have been through so much already and it’s so unfair. Awful that EPU couldn’t fit you in, I’m glad that Dr Shehata could fit you in quickly ❤️

Whyisthistakingsolong · 08/12/2020 14:24

@rebecca9876 I'm so sorry to hear this. Thinking of you, really hoping it's the other twin. Xxx

Rebecca9876 · 08/12/2020 15:24

Thank you ladies so much for the well wishes. Baby is ok!!! It was the lost twin. The consultant didn’t really give an explanation but I guess my body didn’t absorb it and eventually expelled it instead. Nothing I found online said this could happen but maybe I need to stop going to Dr Google for answers...

I’m bleeding a lot and the scan showed there is blood still to come out, so have to rest and am back on nifedipine and an increased cyclogest dose. But the baby is sitting above it all in my womb so they are pretty confident won’t be affected :) It’s been expensive but I’m so grateful they saw me - am still waiting for my EPU to call back with a date to see me this week... :/

I know I should be happy and I really really am, and don’t want to sound ungrateful. But I’m so tired of the stress and worry. And physically seeing/ feeling the lost twin come out has made me feel like I’ve lost it all over again. I just hope we have no more drama from now on.

I hope that for all of us here. You’ve been such an amazing support for me and I hope I’ve helped some of you also. Xx

Wireless77 · 08/12/2020 15:29

@Rebecca9876, so incredibly happy for you! Get some good rest. Don't feel bad about how you feel, you've been through a lot. Sending good thoughts your way! x

VenusStarr · 08/12/2020 15:36

Such a relief @Rebecca9876 I'm so sorry you've been through so much with this pregnancy ❤️ get lots of rest and I hope the bleeding stops soon. Thank you for your kind messages too.

Just wanted to say thank you all for the messages, hadn't want to post much but I appreciate your thoughts and well wishes. I'm OK, a bit flat but I'll be OK. We are going to ttc this cycle, I don't cope well with breaks, having some element of control helps me and I'd just be worried and stressed if we stopped. Still going to have wine and pâte for Christmas.
I had a gynae appointment today as I have multiple fibroids and in my last pregnancy the scan report highlighted on was pedunculated and I wanted it checked out. But all is well, its not in my uterus, so that's reassured me too.

X

LookingforAnswers86 · 08/12/2020 15:39

@Rebecca9876 this is such good news!! I actually was also stressing out for you! I agree I think you have been through enough drama now, I just hope everything calms down soon and you could maybe start enjoying your pregnancy...mind yourself x