Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

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.

Thank you for the reassurance ladies. Bleeding has slowed but the clinic have agreed to scan me at 12.30. They've warned me they won't be able to see much, but I think I'd rather just know if the pregnancy us on the right place / there's a sac / whether there's a haematoma at this stage for my own sanity at this stage. xx

@Everhopeful35 sorry to keep drip feeding, I’m in between work calls but also keep thinking of more things that might help...

As @VenusStarr said try to rest. The less you move the better until you know what it is (with a hematoma you need to be careful not to do too much and I got my local GP to sign me off for a bit so I could have semi bed rest). Also, try not to strain too much went you go to the loo... sorry for tmi but that may also help xx

@Rebecca9876 We're you bleeding a lot at five weeks? I'm trying to figure out what 'normal bleeding' might be like. There's no clots and I don't have any cramps, but I've just been to the loo again and had some more... just when I thought it was slowing 😔

@Everhopeful35 oh just seen your response that’s brilliant you can be seen soon. I really really hope it’s going to be ok xxx

*Were

@Everhopeful35 sorry messages are crossing! I can’t quite remember now but I’m pretty sure it was just bleeding and no clots or cramping (which is a good sign if that’s what you have). I think the blood was initially red and then turned brown but I can’t quite remember sorry, I’ve had so many bleeds since then :/

I did read that many women bleed during the first trimester - something like 20% - so it doesn’t necessarily mean bad news. Please let us know how you get on. Sending so much love! xx

@Everhopeful35 oooo one more sorry! It might be obvious but don’t use tampons while you are bleeding, use a pad x

@Everhopeful35 uck sorry to hear you are bleeding, just adds another layer of concern but I a I do remember hearing over 50% of people on our meds / ivf have bleeding...clearly aspirin adds to it if they tell people to stop too. Delighted you got a scan so quickly and I hope it can shed some light..let us know how you get on Thinking of you x

I'm glad you're booked in for a scan today @Everhopeful35, you're going to the right place. Thinking of you today xx

I had the scan but don’t feel overly reassured. The guy scanning me (Dr Jan?) struggled to find the gestational sac, and then said he could see it and pointed it out, but couldn’t confirm it actually was the sac because there was no yolk sac inside. He said it could just be too early. There’s a small collection of fluid in the womb and he thinks it’s old blood, but it wasn’t near the sac and he didn’t provide any explanation for why it was there. When he couldn’t find the sac, he started talking about the possibility of an ectopic pregnancy but said he couldn’t see anything in the tube and I don’t have any pain, which is positive. But not really sure how to feel now. x

@everhopeful35 I am guessing it could be too early to see a yolk sac? I had a scan at 5 weeks before and think maybe i could only see a gestational sac. Its crap though. Early scans never really reassure :( but it was worth going to find out re the blood although sounds like he isnt sure there either...its so hard to see things at such an early stage. Are you waiting and going to go back at 6.5 weeks now as previously planned?

@Everhopeful35 ok that doesn’t sound bad. I also only had gestational sacs at my 5 week scan after bleeding - I think it’s too early to see much else. In another week you will suddenly see a lot more, it goes very quickly at that stage.

And if he found a blood collection then that sounds like a hematoma?? It sounds really similar to what I had at your stage as well. What colour has your bleeding been? If it’s brown then he’s probably right it’s old blood coming out. But you still need to rest as much as possible to stop it getting worse.

Did they advise about meds? You should presumably be off aspirin ASAP (don’t want blood thinners whilst bleeding) and maybe on nifedipine like me (meant to help blood circulation and also stopping contractions from memory) - Dr S prescribed it for me and although it’s a bit experimental for these purposes but I said why not, I’m always willing to give things a go if they might help. Plus increase cyclogest.

I would ask more questions if you’ve come away unsure, you have paid money for this after all xx

@Everhopeful35 I’m remembering a bit more about my 5 week bleed and scan now and am pretty sure they also couldn’t be 100% about anything at that stage, but did at least rule out ectopic and confirmed sacs, plus likely hematoma (to be fair Dr S called it a blood collection, I termed it hematoma after researching on
Dr Google afterwards). Which is basically sounds very similar to your outcome? I think it’s positive for now but you might need another scan in a week (that’s what I did, it coincided with my 6 week scan) xx

@Rebecca9876 Thank you for the reassurance 😘 It's good to know that you also didn't see anything within the sacs at that stage too. It was just worrying how long it took him to find the sac. When he finally found it, I could definitely see it and so could my husband, and the nurse assisting Dr Jan also confirmed, so I guess that's something. But it was very small. The fluid collection wasn't massive, so he said to just expect spotting for a few days until it resolves. I didn't find Dr Jan overly reassuring though... he said a few unhelpful things, like when he saw the sac, he wasn't convinced it was the sac at first because it was small and said 'have you ever had fibroids?', thinking that might be what it was 🙄 Then when I questioned where the blood came from he couldn't give an answer but said 'all bleeding is worrying and not ideal'. But I read of many people having bleeding in early pregnancy and it's fine/fairly normal. He took me off the aspirin though.

@LookingforAnswers86 Thanks for your message. I've kept my scan in for the 22nd, when I'll be six weeks five days. They did take blood today though to check HCG and progesterone, and I'm back Monday for repeat bloods. So that might tell me more about whether things are heading in the right direction.

@Everhopeful35 if it helps, I have also been left with questions after my bleeding this week, and I’m still concerned as it’s continuing each day. But I’m trying to take away the key point that the pregnancy seemed to be ok at the last scan and - I think - you can take that away for now as there was clearly a visible sac, so you haven’t passed the baby :) It’s really good it’s not located near the blood collection as well.

I still don’t know what my bleeding this week has been - it could be a hematoma (but I was told that had gone at 10 weeks...) but it’s unlikely the lost twin after all (having said it probably was on Tuesday...) as they then saw it still there on Wednesday... My bleeding this week has been awful - very heavy, varies from red to brown, comes and goes, and at one point loads of tissue that looked like lumps of flesh (gross), which we assumed was the twin at that point... I still have no clear answer from anyone as to what it is but am just trying to relax and think about the positive parts of the scans. I hope you can do the same! You are not alone by any means.

Our journeys are ridiculously complicated and it’s a little unfair that even after everything we’ve been through we can’t have simple pregnancies but hang on in there, it’s all looking ok so far xx

@Rebecca9876 Thanks lovely, and I'm so sorry to hear your bleeding hasn't slowed. Have you been put on bed rest? And have they said to come back for another scan too? Not sure about you, but I actually thought I was going to have a heart attack in that scanning room. I was breathing so hard you could have mistaken me for a woman in labour (chance would be a fine thing!) 🤣 It's those awful silences and pauses, where you're just imagining the worst. But you've made it past 12 weeks now and that's such a big milestone! You're doing the right thing by staying calm and thinking positively. I need to do that myself! xx

@Everhopeful35 I am also a nervous wreck every time I have a scan, I know EXACTLY what you mean about panting like a woman in labour!!! 🤣 My next one’s in two weeks.

The clinic told me to rest but it’s my GP that recommended semi-bed rest. The idea is to rest but not so much you don’t move at all, as it’s still healthy to move a little and keep blood flowing. I try to have a gentle 20-30 walk each day (but take it easy as I have found too much can set off bleeding) but otherwise I am basically a potato. A friend of mine is also 12/13 weeks pregnant and running 30k every week whereas I am now quite a fatty, but am just going to worry about that next year (and I’m not a 30k a week runner anyway haha)!

Maybe you can do something similar? Not sure if you work/what your situation is, but working from home makes a big difference to me as means I can rest as/when needed (one advantage of the pandemic...) x

@Rebecca9876 Oh my gosh, you're kidding me - 30K a week? Even if I wasn't terrified out of my mind every time I get pregnant, I'm not sure I'd be doing that. But, like you, I'm not a runner! Sounds like you have a sensible plan of resting and gentle exercise, which is perfect. I'm very similar, actually. I'm self-employed and my husband is wfh at the mo because of Covid, so we take a gentle walk together once a day. I'm glad I'm not the only one panting in the scans! 🤣 xx

@LookingforAnswers86 yes it's exactly that! He doesn't believe in the immune therapy and meds as little evidence but agrees I need help with sustaining a pregnancy so I'm yet to find out what protocol and meds I'll be on. He did say that he will still accept me for ivf if I chose to go to Dr S for immunes but I feel like I'm disrespecting his opinion 😑 I know that shouldn't matter as this is about me but I feel awks telling him I'm continuing with Dr S meds too.

@VenusStarr are you going ahead with ivf? I called the clinic today to talk to them and Geri is usually lovely but was very abrupt with me - basically said put it in a email and she will get Dr S to have a look but then told me there's no appts and Dr S won't be in clinic til mid Jan which annoyed me as all other clinics remain open - I did my research before deciding where to go for ivf as wanted to ensure they are open.

@Everhopeful35 I'm sorry you've had a bleed, I do think 5 weeks is too early to see anything, fingers crossed all is ok xx

I'm sorry the scan didn't totally reassure you @Everhopeful35 but I'm hopeful for your next scan ❤️ I bet you're exhausted.

@Mini82 we'll likely do ivf in the spring, want to try on our own first and then superovulation after that. Since my first loss which took 16 cycles, we've concieved within 3 cycles for the next 3, so hopeful we can again.
Will you need to see Dr S before you can start your ivf? If they hadn't been closed over Christmas we might have tried superovulation this cycle xx

Hi ladies I’m
New here . Been reading the thread with interest

I’m 36 and have now had 5 losses In 18 months .
2 mmc seen on scans and 3 chemicals. The last two being on progesterone.

All testing through Tommy’s Birmingham is normal including karotyping .

I had my son in 2013 aged 28 with no issues .

I’m now at all loss what to do and am
More than likely going to do the biopsy with prof Brosens .
However if my results are high I’m
Not sure he will even prescribe steroids so I don’t even know if it’s worth it

I keep thinking surely at just turned 36 all my eggs can’t be duds? 😢

My partner is 41 and we are hopefully going to be part of the dna sperm frag trial

Hi @Finleysmom84 sorry you find yourself here. I don’t personally know about prof Brosens but some others might. Most of us are under treatment by Mr Shehata (I always call him
“Dr S” for short but in fact he has the highest medical ranking Mr) - with him you would have a battery of tests for many possible causes, his speciality being immune disorders and in particular NK cells - many of us here have high numbers and/or high activation of NK cells.

He is still currently prescribing the normal dose of steroids if it’s needed - but there are lots of other aspects to his treatment like intralipids and hydroxy so it’s not a given and depends on your personal results and treatment plan. He also tests for sperm dna fragmentation if you want it in addition.

If it helps - presumably no, your eggs are not all duds and something else is going on here. I’m 39 so older than you. I also had a baby with no issues in 2018 and then went on to have four miscarriages (and a chemical) this year - my losses were late in the first trimester and then got shorter until I just had a chemical. Am pretty sure my NK cells got more aggressive each time and ended things earlier and earlier. Went under treatment with Dr S with steroids (and everything else) in Sept and now 13 weeks pregnant (I did suffer a twin loss but we have assumed that one actually was chromosomal). So you have some hope whoever you decide to pursue things with - and don’t worry about your age (he and others have success with women fairly well into their 40s).

Good luck with whatever you decide to do - definitely sounds likely you have what most of us here have if you’ve exhausted other avenues x

@Everhopeful35 how are you sweetie? Have been thinking of you a lot x

@Rebecca9876 Thanks for thinking of me 😘 I had a scary moment last night where the bleeding got momentarily heavier but since then it's got lighter and lighter, and now it seems to have stopped. I've been resting lots, but went out for a walk for an hour earlier and the bleeding didn't worsen afterwards, so that's good. I know this sounds crazy, but I keep asking my husband 'did I dream this pregnancy?' Just because the only symptom I've had so far is sickness and food aversion/loss of appetite, and it disappeared completely a couple of days ago, so that panicked me. But it's returned a little tonight (it's so weird how you pray to feel sick 🤣). Very nervous about Monday because I get my HCG/progesterone results and do a second one, to see if things are progressing okay. Just limiting my expectations until then really. How are you? How's your bleeding now? Hope a little better. xx