Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour 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 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

@Hazlet2 @Lalaifa Yes, I know what you mean about friends having babies so easily too. One of them told me that with her third baby, she 'forgot' to go to her 12 week scan because she was so busy 🙄 Oh to have that confidence. I'm now at the point where it makes me so upset that I can't see them, which I know is bad. But it's a constant reminder of what I don't have. Anyone else avoiding pregnant friends and those with kids?

P.S. if you need any more info on ARGC @Hazlet2 then feel free to message me. I hope your first appointment goes well x

@Everhopeful35 hope you don't mind me jumping in. I definitely avoid certain people who are pregnant or have made insensitive comments in the past. Youll probably want to slap me as I'm in the enviable position of having a gorgeous little boy but i have secondary infertility and have now lost 5 babies. I hate how I'm made to feel like I can't grieve them. I sometimes wish I had had the miscarriages before my little boy and then had him as maybe I would have been happy to stop and appreciate my 1 child instead of trying to reach something that just isn't happening. I confided in a friend last christmas that I was going through an ectopic pregnancy and terrified I was about to lose a tube, she texted me a couple of days later asking if I had a baby carrier she could borrow and I just couldn't believe she expected me to go up to the loft and go through baby things whilst I was in the midst of losing my much wanted baby, I was in bits! People just don't get it. I went to christmas parties with my little boy last year choking back tears as I watched several mums with newborns, i just felt and still do feel such a failure. It just appears so easy for everyone else and I'm so mad I've spent the past few years crying and not enjoying my little boy. My mother in law also refuses to acknowledge our losses anymore, she said she has nothing left to say to me which has really affected our relationship and we dont really see the in laws anymore....just wanted you to know even with a child there can be a real effect on relationships.

Sorry I haven't gone back through the posts but does ARGC offer immune therapy like Dr S? We're on the waiting list for ivf but the thought of travelling up and down to epsom every 2 weeks is exhausting. Would be good to get treatment all in one place! Xx

@Luckyducky2 @Hazlet2 @Everhopeful35
Totally understand how you must have felt about others being inconsiderate about what you're going through. I have plenty of stories. Once I had a chemical pregnancy and I couldn't take it any more to be silent and pretend I was alright. I started talking to my sister in law. And she was pregnant at the time, didn't mention it when I was talking to her about my miscarriage. Then revealed it after she had a threatened miscarriage at 11 weeks. I felt so triggered by all of that, so abandoned and so derelict as if my feelings didnt matter. Everyone made a fuss of her threatened miscarriage tho. It was a dark time for me as my loss didnt matter cos it was chemical. Weirdly enough it was harder to deal with than the others for I got no I'm sorries and no respite from anyone. Everything kicked inside when I had a laparoscopy to look for endo and nothing was found. I came out on facebook about all my story and what I've been through including things people had said to me such as 'you're too small to have a child', 'you behave weird with children's, 'you're not a mum' etc etc. Its unacceptable the lack of tact and education on how to deal with women with rpl. Because of this I started a blog to try and explain the feelings. After that people have left me alone partially. But I still hear the odd comment and the lack of consideration now and then. I tend to avoid people with children or pregnant women in general but sometimes is unavoidable. With regards to secondary infertility, I have a close friend who went through that, and it is so disgraceful the things she had to hear from others such as that she was being ungrateful for what she had. She was going to write on my blog to raise awareness about secondary infertility.

@Lalaifa that is so horrible, it takes courage to talk about pregnancy loss and it really hurts when people are dismissive of your pain like that. And you most definitely are a mother - i read a lovely scientific article about microchimerism, its when fetal cells pass over from the embryo to the mother and little pieces of their dna attach onto our organs. I found that a real comfort knowing a little piece of them will always be with me? I must sound absolutely mad though, having a child but avoiding other mothers.....i almost found lockdown a relief as so many friends and family were having new babies and it was the perfect excuse to avoid them and baby showers etc. Your blog must be so cathartic to get all these feelings down! Hopefully its made some people understand what you're going through aswell? Xx

@Luckyducky2 I'm so sorry to hear about your losses. It's interesting to hear that you also avoid mums and pregnant people - it just doesn't get easier, whenever you experience RPL. It's often a lovely and isolating place. Your mother-in-law sounds very insensitive! I do understand that people don't know what to say, but just giving someone a hug and telling them you're there for them and feel for them is sometimes the best thing. x

I meant to say lonely, not lovely - obviously!!

@Luckyducky2 Oh and forgot to say that, yes, ARGC offer immune therapy like Dr S. They are big advocates of it. They do the Chicago test for NK cells, though, and Dr S dies his own one at his own labs x

@Everhopeful35 you are so right, it is a very lonely place, am so glad we all have each other to talk to. Ooh I must check out this ARGC as sounds like it would be a bit less stressful than having to jump between 2 different clinics? Thanks for that info xx

@HoldingOn2Hope I hope you're okay today. I just wondered, how long did it take for the hospital to give you your genetic results from the fetus/pregnancy tissue? I was told four to six weeks and I'm now going into week five, so wondering whether to ring the hospital and check...

@Everhopeful35 hello, I'm good thanks :) my results took 8 weeks and I was told 4-6 weeks. Dr S kept telling me to chase them as they get them done quicker but tbh when I used to call the one they wouldn't give me any info anyway. I hope you get yours soon, the wait is awful I know x

@HoldingOn2Hope Thank you for coming back to me. I was told 4-6 weeks too - I ended up ringing yesterday and they said they didn't have it and there was currently a backlog, due to Covid. It's annoying because the result could inform our treatment. We're seeing Dr S next week so I want to start making some decisions on what to do moving forwards...

@Everhopeful35 I understand I was in the same boat as if it had come back with an abnormal result then ivf would have been our next plan. Hopefully you will get them back soon, keep chasing them or better still see if your GP can or if you have an nhs consultant xx

Hi everyone, sorry I’ve not commented for a while but I do keep reading and sending love & support to you all.
@HoldingOn2Hope I wanted to say I’m so sorry for the results that came through and that they told you the gender. It’s heartbreaking & probably my lowest moment during the last 6 years was being told by a junior doctor that my 4th mc was chromosomally normal and it was a girl. It was devastating to hear and knowing it was a girl made it so personal & increased that sense of loss that I already had. Sending you lots of strength. I think finding out I was having a boy in this pregnancy brought it all back too - the feelings, however confusing, are very difficult to manage. I really hope the hydroxy works for you this time - keeping everything crossed x
If it helps anyone I’m an example of where steroids weren’t enough for me & I had hydroxy in this pregnancy - am now 32 weeks. Previously I had 4 mcs (2 before my daughter Plus a chemical and 2 after) and they had all, bar one, never had a heartbeat by 6/7 weeks. All my test results came back absolutely normal too. I hope this doesn’t come across as insensitive but I just wanted to say even in the darkest times when you think it will never happen, it can and it will
Xxx

@Everhopeful35 @HoldingOn2Hope - do you mind me asking where you both ring to chase your results please? I only have my consultant and his secretary is near impossible to get hold of so wondered if there was another avenue I can try. TIA

@mezgaski - Congratulations! so lovely to hear success stories and something I can take to my consultant, as a possible next step. Are you also under Dr S or another consultant/clinic?

@Jellystar23 thank you x I was under Dr S for this pregnancy (but all tests were clear - including uterine nk cells biopsy which was done by my consultant in Bristol). The only thing I did different this time was steroids from ov, hydroxy & intralipids x

@mezgaski thank you, your story gives me hope :) I've started the hydroxy so hope it does it for me too.

@Jellystar23 it will be the lab the hospital uses for testing. I had the karyotype tests done last year and found the number for the lab on the results letter I was sent. What's your local hospital? Xx

@Jellystar23 I've just been calling the hospital's EPU, where we delivered the pregnancy remains. Both times I've asked to speak to a doctor, the front desk requests a call back and then a nurse calls who has no idea whether my results are in, let alone what they are. So I'm not really getting anywhere and probably not the best person to speak to!

@HoldingOn2Hope Thanks 😊 I’m in wales where everything seems to be backwards 🙄 However, everything is processed in the same place so will try and get a number and chase it up 🤞🏻
@Everhopeful35 I feel your pain. I’ve been told in the past by EPU that the results were ready, booked an appointment with consultant who then told me nothing had come back. Complete waste of both our time. I wish they could understand that we are on tender hooks awaiting these results and the passing from pillar to post is infuriating at best.

Hi ladies, I wish I was writing with better news but it’s another BFN for me this month 💔 I don’t even feel disappointment anymore, just numb. You think you’ve done everything you can, lining was good, 2 juicy follicles, triggered when I was told, BD’d on the right days and still nothing ☹️

I'm so sorry to hear that @Jellystar23. This whole process is very draining. I remember last year getting pregnant so quickly with both of my two miscarriages, then this year I tried for five months and nothing. Sending you a huge hug. I've seen a few of you ladies talking about triggering ovulation - is this something you're doing because you don't ovulate normally or is this some special thing Dr S recommends? Sorry, I hope you don't mind me asking - I've yet to have my follow up with him and keen to know what to expect.

And that was meant to be directed at @Wishing5tar. My brain isn't working today!

@Wishing5tar I'm so sorry it's a bfn :( it's just crap when you know all was looking good. Are you on super ovulation? Sorry if you've already said before. Is it 10dpo for you today?

@Everhopeful35 thanks for your message! My brain never works on a Friday 😂 so even though I ovulate on my own when on the superovulation plan, after taking the meds to increase the amount of follicles I produce that month, the trigger shot means you’ll release all mature eggs rather than just one naturally, with the hope of increasing the chances of conception. This was my 4th superovulation cycle with no luck yet and my 15th cycle since I was last pregnant ☹️ x

Hi @HoldingOn2Hope, yeah on superovulation so only 10dpo but not feeling optimistic ☹️ I HATE having to test so early x