Immune/NK cells pred thread #34

[Hopeandfaith1990]

Hi all, started a new thread as the old one was full. Not sure if this is the way to do it but I've c&p'd the list of people on the previous one as much as poss:

Old thread here: https://www.mumsnet.com/talk/conception/5228367-immunenk-cells-pred-thread-33?page=40

@Jecca88
@Gizmo1983
@Deerdancer34
@Objectiontime
@SWMum9
@TammyinCork
@Newbeginnings22023
@Fletchasketch
@Morgan236
@CarpeDiem75
@ALittleLight
@MC8
@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

@Jecca88 Sending very best wishes for the egg collection - hope all goes well!

@CarpeDiem75 and @SWMum9: So sorry to hear you're going through this. Some ladies in the UK Recurrent Miscarriage Support Group on Facebook say that taking progesterone from ovulation day has messed with their cycles... Probably why there is a difference of opinion amongst doctors re: taking it (and prednisolone) from ovulation, 3DPO or from positive test.

@Hopeandfaith1990: Sending you my warm thoughts. It's such a lonely (often protracted) journey and I'm so glad to have the support of this group of women, plus the Facebook forums.

No I haven’t been scanned since the beginning of the year and my last blood tests were February also.

hoping the doctors come back with something on Monday rather than just ‘keep trying’ which is super unhelpful.

we are thinking about going to Greece next month for some investigation too. That will be a saline scan, endometrial scratch and microbiota test. I think we will just go for it and that may give us some answers and if it’s all fine then that’s good too!

Hello my lovely lovely ladies. Have just caught up with everything and the stages where everyone is at.
i think we are all such fighters and crikey sometimes it just is sooooooo bloody hard isn’t it.
im getting used to stitch it’s been a pretty long recovery and I think my way of coping is just going into myself and I need to pull myself out of this.
@Hopeandfaith1990 so sorry you hit a low I’m pretty sure the same happen to me I think you’ve just been through so much to get to this one point and it’s a lot to deal with mentally.
@jecca that’s sounds like you are going to get some good numbers
@SWMum9 i absolutely feel for you after my 2nd loss I just could not get pregnant again. It sounds like you definitely have something going on could it maybe be a polyp or fibroid I had similar and it was a polyp. You defo need investigating don’t let the nhs brush you off xxx

@sw9 hoping they come back with something today, but otherwise i would ask for a scan and some bloods. If the hosp say no - try the GP?

Thanks @TammyinCork :) what are your next steps?

@Gizmo1983 glad the stitch went well, but can imagine lots of recovery. did they discover you needed a stich with your last loss? or was it just something that came up this time? Are you in lots of pain? Does this mean you will need a C-section?

Transfer done and went really well - I am PUPO! Can’t believe it. Xxxxx sending love to all just wanted to update

Hi ladies, newbie here :)

I've just started at the CRP clinic after 3 early losses, low AMH, high sperm fragmentation, normal NK cells - we were advised to go ahead with IVF in the interest of time, wondered if anyone has done IVF at the clinic or if it's normal (& easy?) to go to a different clinic that will work with them on the immune side. Despite my NK results coming back as normal, I want to try everything I can on that side too 🙏

Any advice gratefully received! Wondering where to start with IVF clinics.. or if I even need to do the immunology stuff if my results are normal! 🫠

@Hopeandfaith1990 Marvellous news, I've been wondering how it went! Keep us updated!!

Omg @Hopeandfaith1990 thats awesome watch lots of funny/happy films laughing/warm fuzzy feelings in studies got higher implantation ☺️.
@Jecca88 yes the pain after the placement was something else dihydrocodeine and oromorph didn’t touch it for the 1st 12 hours but then some women get no pain at all ( typical I wasn’t one of them lol) no this one will be removed when/if I get to 36 weeks xxx.
@SWMum9 hope you’ve made some progress today xxx

@Jecca88 @Hopeandfaith1990 @Deerdancer34 @CarpeDiem75 thanks ladies! They came back and advised that if my sneaked up to date (which it is) to get GP to make two referals. One to general gynae for the bleeding and one to fertility for the fact I’m not getting pregnant. She also advised to restart hydroxy as it doesn’t affect my cycle.

Ive got a GP apt this week so atleast I can be proactive. Was hoping they might say something more helpful lol

Thank you @Deerdancer34 !! I will do!

Thanks @Gizmo1983 I have read those studies!! For that reason I've resurrected 'My Dad Wrote a Porno' podcast and have been listening to it all day its so ridiculous and good. Glad you're feel okay from the stitch now but how typical it was so painful after everything you've been through!! xxx

@Blossomvic Sorry to see you here but we're a supportive bunch. I am not doing IVF at CRP but I am under Dr S' NHS practice so its slightly different. I remember him saying on his podcast its quite common to have IVF other places and see him/CRP for the recurrent loss issues. Did they suggest ICSI because of the high DNA frag? Re IVF clinics I would really consider geographical location -- you sometimes end up going in 3-4 times a week during stims and it can be a lot. Obviously price is a contributing factor too, depends on your budget but I think CRP is one of the more expensive ones (probably for good reason but if your needs aren't THAT complex is it necessary?)

My clinic is a private one within an NHS hospital and I have had such a good experience. It also does NHS patients so its a real mix xxxx

Hey ladies, had my first egg retrieval yesterday at kings fertility. Luckily we got 23 eggs which they constantly told me how surprised they were considering my AMH would have predicted only about 4 eggs. Anxiously waiting on the call to see how many fertilised, everything is out of my hands now. So relieved it’s over and had my post surgery McDonald’s fries and McFlurry lols!

@Hopeandfaith1990 congrats on being PUPO - what you doing to keep yourself distracted?

@Gizmo1983 that stitch sounds mental - glad you get it out at the end though. Are you going to find out the gender soon? Hope you’re ok my love ❤️

@Blossomvic hey my love, we have just gone through kings fertility which I think is the practice that works with CRP - but we very luckily got a referral that came through quite quickly. Think we requested our referral in April and just had my egg retrieval. It’s worth a shot asking GP if they came fast track you and then you can do the immune protocol alongside it with CRP and maybe even have an attempt over the next few months of just doing natural with CRP. Your partner can try and change the dna frag with diet and meds - and I think they retest in a few months to check if improved

@SWMum9 glad the GP is on your side and you get some clarity.

@TammyinCork @Deerdancer34 where are you at with your thinking? What’s next for you guys?

sending love to everyone xx

That’s amazing news 👏🏻!!

@Jecca88 I'm so sorry I meant to come on here and wish you luck for EC!! I'm so glad it went well and 23 eggs is amazing!! Well done you. How are you feeling? Fingers crossed for the fertilisation rates over the next few days.

PUPO so far (2 days lol) has been okay - visited some friends yesterday, got my sister over today. Problem is the pred (and probs anxiety) is keeping me up all night, from about 2-5am most nights so I'm so tired :( been torturing myself that it isn't going to work because of my poor sleep :( also had some cramps which we all know could be anything but I'm obviously defaulting to saying it hasn't worked. Trying to stay positive and busy!!

Wow @Jecca88 thats an amazing number absolutely amazing. Oh wow I could murder a McDonald’s ( gluten free 😢😢😢 ) we have the sex saved in an unopened file from the nipt at 11 weeks) take it easy today xxx
@Hopeandfaith1990 hey sweet absolutely any symptoms can mean everything and nothing I read up on so many people and how they felt some had none some had loads . Just keep yourself busy with nice things I’ve started sudoku it keeps my brain occupied when it’s running wild.
❤️

@Jecca88 This is absolutely amazing news, gosh it makes me so emotional. We'll be waiting to hear 💖 Carry this high with you and enjoy that McD!

@Gizmo1983 How many weeks are you now? Will you look at gender at some point?!

@Hopeandfaith1990 Agh it's horrible waiting, its just the worst but anything you feel or don't feel doesn't mean a thing. Also I actually had really bad sleep when I turned out to be pregnant so it doesn't affect pregnancy if that's any help! Maybe try a podcast or audiobook when you're awake at night so your mind doesn't wander....And keep a positive mantra in your head when the negative thoughts start to creep in...I am PUPO, I am PUPO 💕

@SWMum9 Hopefully you get those referrals quickly?

My news is I'm gearing up to start Superovulation in September, we've decided to go straight to that. I do feel sick about having to do the whole process again and slightly anxious if have more losses, another ectopic etc but trying to close my mind to the what ifs. Plus I just have to think I'm in a better position this time because I do now have my daughter. I sometimes do get upset still that I can't just do it like so many women can do and that it'll never be an easy process or get that excitement at a pregnancy test that others get plus the time, cost and emotional worry...sometimes I feel like a child and want to stamp my foot and say Its Not Fair!! Anyway that's my moan 🤣

Lots of love to you all 💖

@Jecca88 big congats on an amazing result- so pleased for you. Keeping my fingers crossed for the next stage. @Hopeandfaith1990 I had to google PUPO but it's a great mindset and I have everything crossed for you too. I remember the first time round I had cramps which I was sure was a period and then got a positive result. Good good luck!
@Deerdancer34 best of luck with the superovulation, curious to hear how it goes as I think that will be the next suggestion I get. Did you get anywhere with having the intralipids at home? I went for my second lot at CRP on Tuesday and it took over 2 hours out of my day- it's okay now as work is quiet but going to be trickier from September onwards so will be very tempted to do that at home. My tiny win is that my GP surgery has agreed to do my 'wellbeing bloods' so that's a few pounds saved.

Love and luck to all, I hope you're doing well.

@Hopeandfaith1990 thank you! Yes that's it, alongside high DNA frag, theres also morphology issues to contend with. SUCH a good point on the location, the nearest to us is surprisingly way more expensive than going to CRP Epsom which is only an hour away so not too bad and they work with Kings which is meant to be very good. Its so hard to work out what we need because I have unexplained recurrent miscarriage. And my low AMH is stressing me out that I don't have time! 😅really need to try and chill haha

Thank you for welcoming me here, congrats on being PUPO, try and plan in just one thing to look forward to each day, whether it's a walk or your favourite snack!

@Jecca88 firstly, congrats on the amazing numbers! ✨
And thanks for your reply and advice, we're thinking Kings looks really good - especially with your result today! Annoyingly I was referred to Kings last October, started the process and then our funding got pulled as we moved house while it was processing and we couldn't continue treatment. I've had another miscarrage since and now don't qualify for our local funding. 😪But we always thought it looked like an amazing facility and the docs we met were all great, so we're happy to go back!

Amanda Tozer would be a good person to see if you want someone with both IVF expertise and reproductive immunology expertise! I enquired with her earlier in the Summer, only to be told that she just sees IVF patients now (she used to assist couples who were trying naturally).

@Jecca88: That's wonderful news - great to hear! A well deserved treat at McDonald's!

I have asked CRP to send me a private prescription for the thyroxine, progesterone tablets, omeprazole and prednisolone, as they are not allowed to post medication over to Ireland. I will need to print out the prescription and give to my Cork GP, who will then put some Irish code on it to give to my local pharmacy! We are planning to wait at least two months before we start trying, so I guess the pred / omeprazole will only be taken from that ovulation day onwards.

Hope everyone is doing really well!

@Blossomvicokay it sounds like CRP may be a good fit then, they certainly know what they’re doing an I imagine the combination of assisted conception and Dr S protocol would hopefully be a very solid plan. I imagine Dr S will want your husbands DNA frag under control as much as possible and probably suggest ICSI. Low AMH is an important factor to consider but it isn’t everything — I’ve seen quite a few people across this thread and others be successful and it truly is amazing what they can do with the IVF drugs these days especially when they tailor them
properly to your specific case.

Thank you! Trying to take it one hour at a time, yesterday was hard but feeling more positive today.

Thank you @Fletchasketch how are you doing? When will you get your bloods results?

Thanks @Deerdancer34, very sensible advice and I am going to try the audiobook tonight. Starting superovulation sounds good but equally anxiety inducing. It must be comforting to have your daughter. I totally get your upset, I had many similar feelings about IVF especially because our ‘problem’ wasn’t the actual conception (although that then in turn did become a problem). I’m with you in the foot stamping too, I’m sure all the women around the world who go through the same things as us are too. I know that if we are lucky enough to bring a child into the world I won’t care about how we got there, but it’s so normal for us to grieve not being able to do it ‘normally’ or have a normal experience. Sending love.

Thank you @Gizmo1983 sudoku is a great idea. I’ve ordered a ‘paint by numbers’ on Amazon too 🤣 blast from the past. Hope you’re okay xxx

how are you doing @Jecca88? How’s everyone else? Xxx

@Fletchasketch Yes they will probably suggest Superovulation, last time I did 3 cycles of just meds and then at my review they suggested Superovulation. I had no idea there were different options and was very relieved, plus it was the first time meeting Dr Edge who is fabulous! I'll keep you updated! I just asked about a prescription for Intralipids and as I thought it was a resounding No... I don't understand how they let people do it at Cherish etc, think I'm too scared to ask... 🤔 But the at home one needs a prescription, so can't do it anyway which is really annoying. Are you on your 2nd cycle then? Glad you're GP is doing your Wellbeing bloods@

@Hopeandfaith1990 It's nice to be able to moan sometimes to people who understand! But then in a way our journies will make us far more appreciative. The amount of people who moan about their kids and I used to want to shake them, well I still do! I like the sound of all your activities! What's your next step?

@Blossomvic Welcome, sorry I can't offer much advice, it's great you've had good experience with Kings. That's the first hurdle really isn't it, finding a good facility!

Lots of love to all 💕

@Hopeandfaith1990 glad to hear you're feeling more positive today. Blood tests are booked in for 5th September which will be 3 months since I started the hydroxy. Still feeling fine, so hopefully nothing worrying comes up.

@Deerdancer34 Thanks for the info- that is a pain that they won't let you do the intralipids elsewhere- makes no sense either as they will provide a prescription for the rest of the meds.Yes, I'm now on the second cycle, but will need to have a follow up before I move onto the third as I'll have been 3 months on the Hydroxy. I think the chances of a 42 year old conceiving in just 2 cycles is pretty low, so will be saying no to the superovulation- it's getting hard enough to fit everything in around work as it is and I'm only 20 minutes down the road from the CRP. I don't know how the rest of you manage it, but kudos!

Hope everyone has a great bank holiday weekend- we're off to the seaside, which I am very much looking forward to :).

@Fletchasketch I did reply and said I thought other patients did intralipids elsewhere but they evaded the question and basically sent the same reply 🙄 Let me know if you have any questions about Superovulation. It's not time consuming (like the intralipids) and you have the appointment the same day as intralipids if that helps at all but of course it is extra cost. Oh enjoy the seaside!! 😎

Hello everyone, I hope you don’t mind me joining you. I have spent a few weeks reading through many threads and following so many of your stories. I hope you know how much strength you all hold inside of you and how sharing your stories the way you have, have really helped me at an extremely lonely time.

a little about my story …

I am 36. Been ttc for 4 years. Have never had a positive test. Very likely I have endometriosis however on referral to fertility services I was recommended straight to ivf . Looking back I wish I had pursued a lapropscopy first but I tried to trust the professionals around me. I would say that over the last few years I have done lots of work at managing my endo symptoms and it feels a bit better pain wise however very conscious of the impact on my fertility. A recent scan could see endometriomas on my ovaries.

I have had 4 transfers of untested embryos from an ec which gave us 8 embryos. We have sadly never had implantation. We made the decision to leave our nhs clinic after multiple failings in our care some of which were really traumatic. Our last transfer we did privately following Chicago bloods and other tests which showed very high nk cells and double positive for aps. So last transfer I was on dexa then onto pred after transfer, aspirin and clexane with progesterone and estrogen. We really hoped this would make a difference but sadly it didn’t . I then re did the Chicago bloods ( at the price of a small car!!) and my cytokines are now raised so have started on hydroxy in lead up to a 5th fet.

Feels like we have such a long road still ahead. I’m very tired right now and just hope one day all of this will be worth it for all of us . Any thoughts are so welcome , thank you for having me here.

@Deerdancer34 I agree, I find it really difficult despite understanding that motherhood is of course hard, it’s still triggering. Next step is doing a pregnancy test and trying to hold off as long as possible!!! I’m currently 5dp5dt which is the equivalent to 10DPO. Gulp. Lots of people on the IVF boards test this early but I just have a gut feeling that I don’t want to right now. Clinic want me to wait until 1st September (!!) which is so long and also the day I go back to school so I want to know the result beforehand to process. Most likely I’ll test in 5/6 days if I can hold out. Watch this space…. Haha.

@Holdinghope2025 sorry to see you here but you’re in a safe and supportive space. I’m sorry you’ve had such a tough journey, 4 years is a long time. Great news that you have 4 embryos, are you moving them to a new clinic? Could you get themPGTa tested to rule out genetics or are you thinking of doing abother EC round?

I saw you mentioned Pred after transfer. From my knowledge, Dr S thinks that might be too late and starts his patients on the pred before. I think he thinks that the NK cells need to be simmered down BEFORE transfer/implantation. For example, I started taking Pred 5 days before transfer and in a natural cycle take it at 3DPO. It could be worth looking into that.

i feel you on the long road. I have to think that it will be worth it for all of us 🩷🩷🩷