Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

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@Gizmo1983
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@Meg310532
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@recurrentmis
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@Jecca88 its so unfair I’m not surprised you are feeling the way you are, no one deserves to go through the emotional rollercoaster. My heart honestly aches for you, I haven’t been able to get you off my mind! :(
there is nothing anyone can say to you to make you feel okay but if there is any small amount of positivity is that the immune medication worked so if they can get a good egg without chromosome problems then it could be the way forward. I know your mind won’t even want to process this information or want to think about it all yet. It’s all too raw. Let yourself have some time off to heal and re visit it all when you are ready hun! Sending you sooooo much love xxxxx

Thinking of you for tomorrow @Jecca88 ❤️❤️❤️

Thanks @Meg310532! going in the afternoon so having a very chilled morning and gonna have a bath and try and relax as much as possible.

how are you doing? The 7th feb feels like ages away. Are you doing anything to distract yourself/keep busy?

@Jecca88 i hope it all goes as well as it can hun! Glad you had a chilled morning❤️❤️
its now the 5th feb as I needed to change day due to work, but it’s with professa Shehata now I wished it was with dr silva but she couldn’t do the 6th! I am watching SOOO many series and dramas at the moment to keep me distracted!!! Xxx

Ho @Jecca88 so so sorry for your loss I don’t post much but I always like to see how everyone is. We had a cystic hygroma with our 15 week loss. It was spotted at 11 weeks had almost gone by 12 weeks but we lost the baby somewhere between 12 and 15 weeks. We had all the testing and it all came back genetically fine but a CG can also be heart issues or physical issues that aren’t right ( usually heart) this is what we were told. I’m so so so sorry this really is just not fair xxx

Thank you so much to you all for your kind words the other week. I’m sorry I haven’t replied until now my mc is still ongoing since November and I am finding it really tough I just need it to be over. I went for my latest scan today and although I’ve stopped bleeding and had a period I still have 1mm of retained tissue left can u believe 🤦‍♀️🤦‍♀️🤦‍♀️. No idea what they are going to do. I’m 41 and a half now so I don’t have time to wait and this last pregnancy was ivf so I’m pretty fed up at the moment to say the least. I’ve had 4 pregnancies in the last 2 years. We are both pretty fed up especially with this last one taking so long to resolve. we signed up for a 3 for 2 ivf so I have 2 left to go but I’m learning now with every pregnancy there is a chance of damaging my womb/scar tissue or do we give donor eggs a shot. 2 of my pregnancies have been tested and both are clear so all they can say to me is egg quality. I’ve had a blighted ovum, a chemical, a 15 week ( the cystic hygroma) and a 10 week loss. The last one was on a full immune protocal. I’ve spent around 10k so far with mr shehata just to have the same results as the others I didn’t spend 1000s on and that’s not saying anything bad about him but I do t want to spend 1000s to get nowhere again. I’m sure he says your clear of immune issues after 10 weeks and my losses were 10 and 15 weeks. I’ve just got so many thoughts in my head. @Jecca88 you are in my thoughts and to the other ladies thank you so much for reading and I truly have everything crossed we are all going to get there xxx

Hey guys, had the surgery on Monday and all went well. Just recovering at home and not in too much pain so that's good and bleeding is subsiding. My Husband is back at work today and i have taken the rest of the week off, just gonna take it easy. @Meg310532 any series you recommend? I am watching the traitors lols and doing loads of puzzles to distract myself. I have had a scan with Shahata before and he is very good - he was the one that diagnosed me with Polycystic ovaries within 2 mins.

Been researching loads about Cystic Hygroma's and just won't know until results come back what it all means. @Gizmo1983 this has thrown me tbh, so they identified a CH at 11 weeks that had resolved by 12 weeks - but they still think the cause of your later loss was the CH?
i have read that sometimes when the mothers get a viral infection this can cause it - did you ever have a test to rules this out?
I also read that 50% of CH are usually chromosomal and mostly related to Turners Syndrome i have read, but then the other cases can be defects that can't be identified in Cytogenetic testing - but is this random and rare? or is there a chance it can happen again? is this why the Dr at Tommy's said your egg quality isn't good? have they used any other results/evidence to give you this feedback? Have they ever given you any explanation to why the 10 week loss happened? Does the CRP think they need to change the immune protocol? sorry lots of questions.

I understand your predicament about spending so much more with CRP.

My understanding is once you get past 10 with CRP - you are in the safe zone for the immune protocol, but losses after this can be due to other things. You 15 week loss - was it with CRP and were you on the protocol?

Hi hun @Jecca88 , so pleased the surgery went as well as it could and that you are resting up, how are you feeling emotionally ?? God I bet there is so much going through your head isn’t there with what has caused this and trying to understand it all. Omg I LOVE the traitors I am obsessed !!!! Last series was even better than this one! I have just watched playing nice which was really good, and I also watch la palma on Netflix which was good!! Getting engrossed in love island all stars at the moment lol!!
so I had full blood count tests etc done with NHS to save me money and they have called me today to say the doctor needs to speak to me about my results, I went on my NHS app and can see they came back abnormal high white blood cells and also borderline for blood clotting and something else high, I assume this is from the steroids and nothing to worry about!? I just want them to send my results to me so I can send them to CRP I don’t want them trying to worry me etc !!!! Xxx

Hi @Jecca88 yes it was found at an 11 week scan When I went for my 12 week it had resolved they said the nuchal thickness was still thicker than they’d have liked but was in normal limits, we were so happy. Due to the size we had an autopsy as well as genetic testing, it was a girl but didn’t have turners in fact there was nothing physical in her little body she was the right size for her gestation and the bit of placenta they got was normal. I hadn’t met shehata before this I was just on progesterone so he gave me the usual protocal knowing a had a CH. there’s a good CH Facebook page. I have no idea if I was tested for viral but they defo tested for bacteria. I’d also had a vaginal swab the week before and it was clear. Ms Silva was interested in the fact we’d had a CH, my only egg retrieval out of 4 only one was viable and that was a mosaic so I’m told it’s suggesting my egg quality is poor. I’d also had an nipt test that was clear. I tested clear for everything on shehatas test except the natural killer but at 15 weeks I should have been clear of that. I’ve been told ch can very often be linked to heart or major organ problems but at 15 weeks ours was too small to tell. If you have any more questions please just ask. Change can resolve but normally they are linked to something which makes the baby unable to survive 😥. Did you have an nipt? Xxx i was told it would be best if it did come back a genetic issue as then we would have answers instead I’m left not knowing why all I can go by and that’s what the drs are saying my egg quality. I was 39 at my 15wk loss and 41 at this one xxx

My consultant now wants me on Pred from ovulation. I’m quite nervous about it to be honest. Previously he had said from a positive test and I felt fine with that since I guess I thought if I had to take it to try and stay pregnant then so be it but I am anxious about spending what will probably be two weeks on Pred every three weeks or so. Ahh well…

Shamefully @Meg310532 i am also watching love island all stars - it passes the time and numbs the brain. I too had a full blood test with NHS in early pregnancy and my white blood count was like 11 and neutrophils were really high- I took it to CRP and they didn’t seem concerned - said it was steroids but also pregnancy can do that too.

@Gizmo1983 thanks for sharing. Has anyone come to a conclusion about your 10 week loss? Did they say when the baby had died? Does the CRP think it’s immune related and have they suggested changing anything about the protocol? I’m sorry you still have retained products - sounds like a nightmare and only 1mm too 😢 were your chemicals with CRP? I have had six miscarriages now, one at 12 weeks and two at 5 1/2 weeks and then since CRP - two blighted ovum’s and one 12 week loss. I started on the inofolic and think it might have helped with ovulation and egg releasing correctly, but then this could just be the bad luck CH. I really don’t know where to go from here but might just need a break for a few months. I just wish someone could tell me how I can have a baby successfully. I’m so drained by this all and nothing makes sense.

I remembered you said you still have embryos left with IVF clinic? What are your thoughts going forward?

@Jecca88 im addicted to it 😂😂 traitors tonight too can’t wait ! Good evening of TV! Ahh okay that’s reassuring hun thank you, did your GP also call you concerned about the blood test results ? I have given to CRP and they asked me if I was feeling well in myself , did they ask you this too? Xx

Hi @Jecca88 it’s just soul crushing isn’t it, no one should be a member of this club it’s just not fair. So mr shehata wanted the cytogenetic results before he would meet with me again he said there was another med we could try but we would need to move closer to Epsom while we were doing it, it really pissed my hubby off we had just found out our baby had died and there he was rather sternly telling us to move to Epsom, it really didn’t go down well 😬. Yes my chemical
pregnancies were with CRP and so was the 10 week loss so I’ve had 2 losses under them, I asked them
last time is it time for me to move to donor eggs as something is obviously wrong dr silva said no but she also said having all these losses means there’s defo something wrong ( no shit Sherlock). The Tommys dr who I spoke to last week said he is absolutely certain it’s the egg quality which is the issue,my hubby is over weight and they said this won’t help.
I had a comfusing call from my nhs consultant today, they took a biopsy of the 1mm tissue left in my womb and it is just endometrial tissue not retained product they are going to give me 3 weeks of norethisterone to bring on a big bleed she said normal they just wait for a period but she knows we are in a hurry to start ivf again so this will speed things up, but if it’s just endometrial tissue why does it need to be put, I’m hoping her follow up letter will explain it a bit better.
sadly I don’t have any thing frozen. I had 2 rounds of ivf, the 1st round we got 4 eggs, 2 went to blast and we pgt tested one was no good the other was a mosaic and the 2nd round was abandoned as there was only one follicle, again the drs have said this also leads to it looking like an egg quality issue.
If I was younger I would 100% be taking a break, at the minute plan is to do 2 more ivf rounds then move to donor, if it was me I’d go straight to donor as I’m worried with every failed pregnancy my womb may be damaged, I ended up with a blocked tube after my 15 weeks loss, with this loss I’ve had retained products.
for some words of comfort I’ve only ever heard of 2 women have a cystic hygroma more than once so it would be extremely rare to reoccur.
annoyingly the pregnancy I got the furthest with was before I’d been to mr shehata so all the drugs and lipids haven’t helped me at all which is heartbreaking really I was so sure we would go all the way with this one and was so shocked when we had the 10 week scan, ms silva said she thought the heart had stopped less than 24 hours before so I lost her at 10 weeks exactly xxx

@Gizmo1983 im so sorry! I really feel your predicament - it’s so unfair and such a horrible thing to put yourself through as time just slips through our fingers. It’s really hard to test egg quality unless you go through ivf right and even that isn’t always conclusive. It sounds like you have really thought this through - when are you hoping to have the 1st round of ivf? March? Why don’t you see how the egg retrievals go before thinking about progressing with CRP - if you get some good eggs maybe you will want to go with normal protocol. Did your husband ever had the DNA frag test?

I wonder what this other drug is - I honestly can’t believe they asked you to move to Epsom - bless Shahata but his bedside manner is off.

I have a feeling that my cytogenetic results will come back fine and then we will be none the wiser about why this one happened. I have asked the GP to call me about a referral for IVF - not sure how long it takes but if I can get that part funded and then pay for the PGT testing myself it might save me something. That way I will be forced to wait and have a break - although I just want to get on with it. I am also not getting any younger and turning 37 in August.

Having a really low day today, but i just saw a beautiful rainbow outside and it gave me some comfort.

Hi @Jecca88 I'm so sorry to hear what you have been through it sounds completely traumatic 😔
I got referred to the consultant to refer me for IVF but he told me I'm not eligible under the NHS until 2 years of TTC have passed since my last miscarriage. Please do let me know if you get advised of anything different as this has been a big blow to me.

Oh and if I have any further miscarriages the clock resets!

Hi @Jecca88 i think I have dealt with each mc in different ways this one I was just oh yes is not a suprise really is it and I’ve never cried, I’m sure I will at one point when my brain is ready. You should be fine at 37 but if u can get the IVF funded and get them pgt tested that will be very interesting.
yea hubby had his fragmentation done all was great. I think you’re right about doing the 2. Cycles we have left before trying donor eggs, if we don’t do it now then we can never do it where as with donor ones we have much more time. I have no idea what the drug is with me shehata but I’m not moving lol.
im so sorry you’re having a bad day I think you need those days to process everything and come to terms with it all, I was so so sure this one was going to make it then on an instant it was over again. Did you have a d and c? If I don’t mind me asking.
both times when I’ve had my cytogenic results back it has hit me like a hammer they have definitely been some of my worst days, also I’m sure you know but just in case the sex of mine has been on the report so if you aren’t ready or don’t want to know let them know.
I have to take 3 weeks of progesterone then it will give me a big bleed then I can start ivf again so yes probably March 😬😬😬. You are in my thoughts just know you are not alone not one little bit just so sad we are all in this group together xxx

@recurrentmis that’s absolutely awful and very cruel I’m so sorry, I wonder what justification they have for that 😥😥😥

@Gizmo1983 its because they say I don't need any assistance in getting pregnant.

@recurrentmis this is actually outrageous really. Was it the GP or consultant at hospital that said this? Are you able to afford it privately? It’s so much money isn’t it? Where do you live, is that anything to do with it? I will let you know what they come back with my GP is pretty useless, but it’s worth a try.

@Gizmo1983 yeh I had the D and C Monday, they said that was the safest way due to the size of it. I have had three d and Cs now and 1 MVA 😞. Yes I have had two results before from cytogenetic - but nothing ever found and both were boys. In a way I like knowing the gender - this time I’m convinced it was a girl. I was very attached to this one, I had scan pictures of my fridge and my niece and nephew who are 3 and 2 always kissed my belly and wanted to see the app to see how the baby looked - absolutely heartbreaking telling my nephew who is my little soulmate that we lost it. I think I was almost convinced it was going to work.

how do you choose a IVF clinic? I am guessing you will be paying for the retrievals
and it’s not funded?

sounds like you just have been processing this ongoing miscarriage so you haven’t really had time to grieve and then feeling like time is running out so just planning. I never know what the right thing is to do. I want to have a plan but go into research mode after a loss.

xx

@Jecca88 unfortunately it was the consultant gynaecologist at the hospital in Brighton. I have recently moved now and I am in Nottingham, how about you?

@recurrentmis i am based in south west London, no idea about of they will do funding. I know my friends got funding and that was only a year after their miscarriage. Is it worth trying to speak to GP in Nottingham?

Hey @Jecca88 telling people it’s over is the worse part I’m so happy we hadn’t told anyone about the 15 week loss it was strange being at a funeral just us 2 and one of the midwives came which was very sweet, this one I was so sure all would be ok so told some family and it’s just awful having to say it’s over my heart just brakes for you having to tell your little nephew it. I wish I’d done another d and c, my mva was a total shit show, found out the other day I lost almost a litre of blood no one had even told me.
to be honest we are up north so choices of clinics are very limited and all of ours we’ve paid for privately in top of shehata 😬. What I will say it you have to go there quite a lot so don’t choose one a million miles away.
ive got 3 weeks of norethisterone to take they want me to have a big bleed to try and flush this piece of endometrial tissue out. I did ovulate this month so we did try but considering we haven’t managed to get naturally pregnant for almost 2 years I’m extremely confident I won’t be pregnant but will do a test after 12 days to make sure before I start it.
once I’ve had the big bleed I can start ivf again but at the minute I honestly just can’t be bothered with it but I’m 41 and 7 months so can’t wait ugh.
lots of love to everyone xxx

@Gizmo1983 its so sad isn't it, such a lonely place to grieve with just you and your partner. I have decided i need another week off, still feeling emotionally drained and just can't face work. I am so sorry you had an awful MVA - i had one in June last year but it was just the removal of the sac and much smaller. They said my only option would be a D&C this time. I am a bit worried they haven't got everything as still bleeding and some pain still. That is insane they didn't tell you lost that much blood, were they not concerned?

I am not looking forward to tracking ovulation again - honestly i am so over this.

The GP is calling me on Thursday and my best friend who is a GP - just confirmed that you can get referral for NHS funded IVF - and it will be recurrent loss and extenuating circumstances, so i am going to push for it - despite it being 4-6 months wait. Lets see how patient i am :(

@Meg310532 how are you doing? How are your symptoms and how are you feeling? Only 1 more week to wait till your first scan :)

@Jecca88 hi hun! I don’t blame you,
honestly you should def take as much time as you need off work and do not feel pressure to return either, you have been through absolute hell and back and you are also going through a grieving process.
Thats positive about the referral on the NHS, so that you can go through the embryo testing too can’t you, god it’s such a process though isn’t it and exhausting. Would you stay under CRP for the immune side of it ? Or do you think the NHS would prescribe the tablets to you ? As you can have infusions under all fertility clinics as part of IVF package can’t you !
im feeling okay hun, sore boobs still but not a lot else really. The steroids are completely knocking me out for like two hours a day in the afternoon it’s mental! I thought they were supposed to make you have insomnia not the other way around. I’m thinking I will have to start taking them before bed as I’m having to take myself off on my lunch break in the back office to sleep for a hour as they just knock me out. Have got to have my bloods re done next Monday as CRP said they need to check if my white blood count has come down ..xxx