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

Thanks everybody for your kind messages. I'm considering going back to CRP alongside an IVF cycle, since it was 9 months since I was last a patient there, does anybody know if they're adding anything new to protocols by any chance please? I've read that tacro and something called siralimus/ramamycin might be good for endo cases x

Hi everyone, thank you for your messages. I had second beta HCG done today and it’s gone down to 4.5 so it looks like a chemical. My 4th loss. I can’t cope with this anymore.

@SWMum9 I am really sorry that it is heading this way😞 sending lots of strength.
@TammyinCorkthanks that’s good to know some doctors agree to take the medication from bfp. I have started progesterone at 3dpo and I have started to test so I can see when the trigger shot leaves my system and if there is a pregnancy so I can start prednisone then if necessary… I am willing to try anyway! I will report back 🤣

So sorry, sending love. It’s so cruel. Xxx

Thank you lovely @TammyinCork ! A 3 week wait just to schedule you in is a lot - but there is sooo much waiting around with IVF it doesn’t sound too unusual sadly. Are you hoping to start asap? Xxx

So sorry @SWMum9 that’s heartbreaking xx

Thanks everyone. Feeling totally deflated and numb. This is my first positive in 12 months but also first positive on the protocol.

Has anyone else miscarried on the protocol on NHS? Will they adjust my meds or just carry on? I’m on 25mg pred but I dropped the hydroxy as it messed up my cycle and caused bleeding.

@SWMum9 I'm so so so sorry 😞 Sending you the biggest hugs, I know it doesn't take the pain away but lots of love to you 💓

Hey ladies, sorry been a bit quiet. Thank you for all the well wishes. Still sleeping terribly and still very anxious all the time. Had my husbands 40th yesterday which was a nice distraction and treated him to proper day in london, with lots of lovely food. Got my 10 week scan next week Tuesday.

Just got to get through his party on the weekend and his whole family coming to stay. I am also sick of people asking me when we are having the IVF transfer too. I keep putting it off but need to just say i would rather not say - its so intrusive. I went to a wedding on the weekend and saw people i hadn't seen for a few years as we have been hibernating, i was quite open and told them of our struggles in a very light way as knew we were at a wedding, the responses i got were just infuriating. Diminished everything we went though and said everyone has fertility struggles and then went on to say the worst thing you can do is be stressed, so try and stay calm. Honestly i was fuming.

@Hopeandfaith1990 glad the transfer went well. I am literally praying and keeping everything crossed for you. How's your TWW going?

@SWMum9 i am so sorry to hear about the chemical, just so damn cruel. I did have a chemical at CRP and they changed meds. I am not sure if NHS offer more than Pred and Hydroxy. I never had any issues with the Hydroxy and cycles were really regular. Are you also doing Progesterone and baby aspirin?

love to everyone else. xx

Hope all goes well on Tuesday 😊

People just say the wrong things don’t they when it comes to infertility / miscarriage. I’ve heard some right crackers and it’s at times made me think I just wish they knew how it felt!! Sorry you went through that. Sending you love for next week.

No, I don’t think NHS will offer any more… now that I’ve had endo surgery and my uterine septum removed perhaps I could try hydroxy again or even the half dose of 200mg

Are you with Epsom and St Helier @SWMum9 it might be worth trying it again.
I think you can also have intralipids elsewhere if you wanted to try that.

Yes I am. I’ve emailed them today to update and have a new prescription to pick up so perhaps I’ll also request the hydroxy and see. I’ll try anything!

@Jecca88 TWW is horrid as always haha. I’m 5dp5dt and had some cramping come on this afternoon, I’m feeling quite negative :-( glad your husband had a good 40th.

Omg those people sound awful, so sorry you had to endure them 😡 I cannot understand how some people can be so stupid and insensitive.
It’s unbelievable for people to ask you about transfer date too urgh. If you want to share then fine but no one is entitled to know.

Thank you for your well wishes. I think I’m gonna test on Sunday as I have to go back to work on Monday. Started off feeling quite optimistic but feeling pretty rubbish about everything now.

@SWMum9 the hydroxy is the highest stage on the NHS sadly. If my transfer works I’m considering taking it again lol I’m so flippant I just feel scared either way.

thaNK you for the well wishes @MC8
and @Deerdancer34x I hope you’re both ok xxx

@SWMum9: Gutted to hear your news and really hope CRP can provide you with answers / guidance at this difficult time. I hope you have plenty of support...

@Jecca88: People can be so infuriating... While miscarriage is common, recurrent miscarriage is far less common - I wish there was more awareness of this. All the best for the 10-week scan...

@Hopeandfaith1990: Hope the cramping subsides soon and wishing you so well for the two-week wait. Yes, I was hoping to start IVF straightaway - I know the Spanish clinic I originally enquired with (Clinica Tambre) had no waiting lists, and am wondering whether to go back to them.

@CarpeDiem75: Hope all goes well for you with taking the meds from 3DPO!

I had thyroid bloods taken nine days ago and these were the results:

TSH: 1.55
T4: 15.2
TPO antibodies: 43.6

i.e. a big improvement on what they were in July (TSH was 2.5 and TPO was 144). Dr S thinks high TPO antibodies have played a significant part in my six miscarriages. So even though I haven't gotten pregnant on the complex plan, at least this part of the treatment seems to be working!

@Hopeandfaith1990 sorry this tww is so rubbish, when do they advise you to test? sunday will only be 8days post transfer? but technically 13dpo? You so hyper tuned to your body and twinges, its just so horrid. Be kind to yourself please.

@TammyinCork ahh i know, recurrent loss is so exhausting. The waiting list for a transfer for IVF was a month for me, obvisouly didn't need the appointment in the end, but it is frustrating. The spanish one sounds cool - where in spain? would you go over there? I know Prague is also really good and is really affordable and good results. Good results on the thyroid meds already working.

Hey all, I’m incredibly anxious but we’ve tested positive ✨💕🥹 I’m 8dp5dt. Got the first positive yesterday but wanted to make sure it wasn’t the trigger remaining in my system so wanted to see it hopefully darker today, which it was 🙏🏻 very grateful.

Trying to take each minute / hour / day as it comes.

@TammyinCork Spain sounds like a good choice, it seems so much cheaper and efficient abroad haha. If my job wasn’t so rigid with days off etc I think we would have considered going abroad for it. Great news on your thyroid results. I also find a good quality iron supplement helps my stay stable. My mum has thyroid disease so I’m always getting mine checked.

@Jecca88 how are you ? How many weeks are you now? Sending love.

how is everyone? @SWMum9 thinking of you.

This is amazing news!! So so happy for you. Keeping everything crossed.

I’m okay thank you. First couple of days were rough thinking that this will just never happen but I’m feeling better now and trying to remain optimistic x

@Jecca88 Good Luck for Tuesday!!
Fertility is just a horrible conversation to have with anyone, they just cannot understand. I found it hard because I didn't want to talk about it but I also kinda wanted them to know how crap it is what I was going through. In the end I found it easier to stay quiet and I turned to here, where people actually understand the devastation you go through...

@Hopeandfaith1990 Oh my goodness I could cry!!! I am keeping everything so crossed for you 🙏 🙏 🙏 I'm so hoping this is your time!

Lots of love to all 💓

Oh @Hopeandfaith1990 my love - wonderful news and just what I needed to hear today. It’s such an anxious time, we have all be through so much so please be kind to yourself. Each day ❤️

I’m 10 weeks today! it has DRAGGED!

thanks @Deerdancer34 I totally get that. I also am battling thinking I should just be honest with people - and not be a shameful topic, but it’s actually the responses. Need to protect my energy x

Ahhh you're all so wonderful thank you my angels. I truly feel the support in this group and its amazing.

@Jecca88 10 weeks wow!! You've done sooo well, do send any tips you have re the anxiety etc haha. Although I know we are all just anxious wrecks 24/7.

@SWMum9 thank you. I'm glad you're feeling a bit better, we are rooting for you so much. Do you think you'll stay off the hydroxy?

@Deerdancer34 thanks so much lovely. Totally agree with wanting people to know but also predicting/knowing most people usually say the wrong thing. Its such a hard predicament.

Congrats to you @Hopeandfaith1990and to @Jecca88for reaching the 10 week mark!! Amazing stuff!!! Please keep us posted!! A question - did you both start your meds after ovulation or at 3 DPO like others have been discussing?

sorry im a bit rubbish with writing in this chain and keeping up with you all.. I think it’s because I’m new to this thread. I think I need to have a book and take notes 🤣🤣🤣 anyway I’m reading all your posts regularly and rooting for you all!! 😆

A huge amount has been happening on my side - cut a long story I’m now at the 3 year mark with 2 miscarriages under my belt and 8 cycles with CRP with no luck at all. Still haven’t done super ovulation yet as I’ve been travelling a lot with work - so much so that the GP has written me off work for burn out. I’ve been off for a week and really think stress is stopping me from falling pregnant! I go to Thailand on Friday for our honeymoon which will be day 1 of cycle 9 so hoping to get my intralipid that day before I jet off (such annoying timing for day 1). Feel a bit weird about it as we went to Thailand exactly 2 years ago to the day and that was the first time I fell pregnant. Trying not to put pressure on the trip and focus on relaxing! I’m tempted to continue my fit note when I’m back from hols so I get a full cycle with no work and see if it works… GP is totally on my side! If that fails then I’m going down the SO route!

hope everyone is having a lovely Sunday and relaxing with your feet up 😄

Thank you @pagey23🥰 so when TTC naturally I’d confirm ovulation with temping after recording 3 high temperatures. Then id start the meds (Pred etc) at 3DPO. With an IVF transfer, I started 5 days before the transfer. I know, this thread is so epic it could be a book haha. It’s amazing that it’s tracked so many journeys across literal years.

Sooo amazing that you’re off to Thailand, I’m very jealous. I’m glad you’ve been written off work, I have to regularly tell myself my baby is more important than work and it sounds so obvious when you do, but I get some wrapped up in and lost in the stress of work sometimes. SO when you’re back sounds perfect - hopefully it won’t be needed though!!

Hi ladies, I hope it’s ok for me to join. I recently had my fourth missed miscarriage & starting to look at immune testing. I’m a bit early to join the thread as not started yet, but have been feeling a bit on my own with it all & don’t know anyone dealing with this. I’m waiting on cytogenetic results of latest loss, but the third loss was genetically normal which makes me think something with immune issues is at play.

Today I had a private consultation with CRGH to enquire about nk cells & Alice/emma biopsy test as feel like there’s not much more the nhs can do to help me. I know lots are seen by CRP but I felt like I wanted the Alice/emma test too. Not sure they do that? Feeling very overwhelmed with all the decisions there is to make & wish there was just a magic pill to take

Hey my loves, had my 10 week scan today and all went well. I was convinced it was going to be gone, but it was the most magical scan, in the 3D scan pic the baby had a halo over its head - both dr edge and Olvia were like wow this is your angel baby. Both of us in tears and my husband said it is the best birthday gift. Atleast we had this moment and it was properly moving around. So grateful but so scared about the NIPT results this week - hopefully should know by friday. Nothing i can do now but wait.

@pagey23 this was actually an unexpected pregnancy - i actually didn't start the pred or progesterone will about 4 weeks, so 14DPO. Usually i started it on the day of ovulation. Thailand sounds amazing. Is Cycle day 1 good for intralipids? Have the nurses advised this?

@Hopeandfaith1990 how are you doing my love? whats the plan? when's your first scan? do you do intralipids?

@Figtree11 welcome my love, never a nice place to be, but we are a supportive bunch. Sounds like you are doing all the right tests and really hope it provides you with some answers and a plan going forward. It is hugely daunting but know you are not alone. x

@Jecca88 Hope all goes well today 🙏

@Hopeandfaith1990 It's torture but just try and take each day as it comes and don't look too far ahead...easier said than done I know!

@pagey23 Enjoy Thailand, take the time to just be, soak up the sun and enjoy! I'm so glad your, GP is supportive, it really helps not to feel you're fighting every step of the way.

@Figtree11 Welcome and so so sorry for all you're going through. I'm at CRP, I had 3 miscarriages and an ectopic beforehand and then had my daughter by Superovulation and medications through them - it was a long journey, as is the case for everyone here. All I can say is don't give up hope, that's the only thing that kept me going. Ask away because its so overwhelming, especially when its hard to understand everything (I'm not sure I still fully understand everything). I'm not sure if they offer those tests because I've never looked into it. Maybe you can enquire?

Lots of love to you all 💓