Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

4dpo today @star2022 feeling glum, but I'll try to look forward to next cycle and getting the hyfosy. I need af to hold off for a day or so, so that I can go for the procedure after the bank holiday. Going to start cyclogest on Saturday. My temp is definitely raised but not as high as when I'm supplementing sith cyclogest. My heartrate has dropped back down though.
Sounds like you have ovulated now 🙏 Hope the pred is OK this month for you.

I haven't looked into dhea much but know you can't get hold of it easily here and you'd need to be monitored on it. Not sure about ttc whilst on it though?

@comingsoon786110 I had my microbiome checked as part of the endometrio tests and nothing showed up, so I've not tried anything. And am scared to introduce anything in case it upsets the balance. I don't tend to get thrush or issues so hoping its OK. I do have actimel daily but no idea if they're any good for gut microbiome really.

I've got zero motivation today!

@Ems123456789 I did but don't think it achieved anything. I went mostly gluten free, hardly any caffeine, and have eaten lots of protein in the last 6 months or so. I sort of felt I needed to know I had done everything!

@star2022 I have wondered the exact same thing about dheas. My testosterone is something like 0.3 too so I have wondered. In fact, I shipped some dhea over from the us but was too scared to unwrap it so it has remained hidden in my wardrobe for around 6 months. Let me know what you uncover...

@VenusStarr I'm sorry you're not feeling hopeful. It's a grim feeling isn't it. A hyfosy/hyfosy is a good idea as it at least gives everything a good flush out!

Not feeling so optimistic here. I've tested and it's negative. The blood didn't turn into anything so I guess the progesterone held everything in place. I'm meant to test on Sunday but I doubt much will have changed since then. The embryo was "top quality" apparently, not that that means anything, clearly!

I'm sorry to hear that @Zest11 I'm glad the bleeding stopped but sorry to hear about the negative test. Hopefully you're not out yet though. It's very deflating 😐 Did you get any frosties?

I've been to zumba tonight but really struggled to keep up, felt like I had no energy.

Sorry to hear this @Zest11
it’s such a challenging process when you are told your embryo is great quality and you feel like you’ve done all the things. another 4 days til test date so we will hold out hope for you.

Hi all,

I hope you’re all managing to find time in the lovely sunshine today ☀️

As many / most of us are with Dr Shehata, I wondered if any of you had been re-tested to see if the medication is working?
Following our previous miscarriage, he said they normally do a repeat blood test after the Humira injections but he said I didn’t need one as he knew they would work. I’ve miscarried again since so not too sure if I’m sold…

I’m starting to question if all the meds (pred, hydrox, aspirin, fragmin, intralipds) I’m on are actually making an impact.
Is there a way of finding out? Like a pre and post blood test?

Hi @Zest11 Hope you're ok, i'm glad the bleeding has stopped - is there any chance it could have been implantation? and maybe the negative was too soon. Will you be testing again? I really do hope it turns around for you. Yeah its interesting about testosterone, like my bloods at <0.4 came back as 'normal' from my GP as anything over 0 is fine according to them, but everything i've read is saying low testosterone isn't good for fertility. I guess I'm gonna just have to see what happens with SO, think we'll do it for the 6 months as suggested and then see. I just feel like these months just pass by and before I know it another year has gone still being in the same shitty boat.

@VenusStarr Feeling the same as you right now, a bit glum and just fearful of it not working, i think i'm just trying to protect myself. I'm even having to plan my social life around these weeks like not booking anything around test date in case its bad news and i'm a mess. It really does take over doesn't it..

@RJayne I'm so so sorry to hear this, I did also raise this a few pages back whether its worth doing a repeat test. I also wondered whether too low of an immune system has the opposite effect? I keep forgetting to ask that in my consultations. Has dr s suggested anything else as to why this is happening? How many cycles have you tried? I really hope he has a solution for you I can't imagine how hard it must be x

@Ems123456789 thanks for the info re DHEA, I have read so much about them being great before egg collection but only if you have low testosterone and the need for monitoring in case it goes too high. I will definitely keep that in mind if this process just doesn't work for me as it could just be that too.

@star2022 yes I also read about the monitoring. Though one of the doctors in my clinic advised on the amount (75mg) but didn’t say anything about monitoring. My clinic don’t really so monitoring full stop! Lol. So I was winging it slightly! I started off just taking 25mg for a week or so then upped to 50 and then higher, just in case it had any funny effects.

I also thought I’d share something I learned this week about intralipids in case it’s useful to anyone. My doctor prescribed me 500ml on day 4-9 of my period cycle before having a frozen transfer at around day 18. I asked Dr Thum at the Lister for a second opinion (as that’s where I have recently been getting advice following my immune diagnosis and my current clinic not being that great) and he said to make sure the 500ml intralipid isn’t diluted as a lot of clinics dilute it, I checked and my clinic do 100ml and 400ml saline so I’m going to go to him to do the 500 pure instead. He also said the infusion had to happen 1-5 days before transfer and not so early as my clinic advised.

We shall see. My test results showed IVIG would be 8% more effective but at £2k a pop on a frozen embryo (that could not thaw properly) and that is not genetically tested, it feels risky to spend that much money. Hard decisions all these things. Want to give myself the best chances but also don’t want to pour money down a drain constantly.

@star2022 ahh that's good that you have a plan of 6 months and then move on to the next idea afterwards, that makes sense. How are you feeling this cycle? How many dpo are you now...is it around 2? I hope the next week or so goes quickly for you!
i do understand what you mean how a year just passes and no better off. From our first round of IVF back in 2019 we had 5 blasts and we started putting the rest in a year ago for a sibling. Naive at the time.

@VenusStarr how are you today? Have you done more Zumba this evening? I am going to head back to the gym this weekend, I have missed it.

Unfortunately things haven't gone well here. My body held off the blood until today and now it's properly going. I really don't know what to do next. I sort of thought if the problem was immune related then the embryo would at least implant. But oh no, I feel a bit deflated that we've got further along with no immune protocol in the past. We have 2 frozen which, if thawed, will get used but I'm not sure how. Don't know whether to ship to argc, follow the Dr s protocol again or just follow the basic one without any immunes. I sort of feel like I need to know I tried everything. The only thing I haven't done is pgtesting because I can't change the outcome...no amount of lifestyle changes can change the genetics and from a process of elimination I can't see what else it is. 5 failed/miscarried transfers in total now. Clocking up!

I'm really sorry to hear that @Zest11 ❤️ how much progesterone were you on? Similar happened to me in my fresh transfer (ended in a chemical) but it was put down to low progesterone as it was only 20 on test day. So we added lubion in my FET, it worked much better to have that plus 2 cyclogest.
Have you done any microbiome testing or the ERA? I did the endometrio tests after the fresh cycle.

I'm absolutely knackered. I went to the hairdresser after work and came home and fell asleep on the sofa! Felt completely knocked out.

Sorry you're feeling glum too @star2022 having hope feels too scary and every time it creeps in, it's not ended well, so self-protection might not be a bad thing. When's your test day? Work is really full on next week and I'm unsure when to test, don't want to leave it too late in case it has worked by some miracle and I need to start steroids.

Can't wait to go to bed 😴 xx

Woah. I've missed a lot on this thread! I will attempt to catch up.

@VenusStarr thank you so much for the birthday wishes💕..despite this mess, amd having a nasty cold (probs because of immune meds) I had a great time.
Initially wrote "Sorry to hear you have to skip this cycle for hubby's surgery. Can you try on the cycle after?" But seen you managed to try after all this cycle so fingers crossed for this month. But if not, then great that you've lined up the hyfosy.

@star2022 fingers crossed for your tww.

@Zest11 I'm so sorry to hear your cycle didn't go well. Sucks even more when you put so much effort in.

@Zest11 and @Privatemedical246 my losses have been the 5-6 week mark to. Whether that's a chemical or that ay the 6/7 week scan it showed the embryo didn't progress past 5.5 weeks. It's maddening that there is a clear issue that happens at that time but no one has figured out how to address it.

@Ems123456789 I've tried so many different diets in the last few years and I am TIRED of it. I just try to eat as healthily as possible but who knows. I am considering doing the AIP diet before I transfer again. I'll see.

I had my follow up with my ivf consultant yesterday and came away more confused. She is also clearly confused and she's brilliant and head of research so clearly I'm a special case. She can't understand why my pregnancies have been ending at the same time despite all the immune treatments and the clotting treatments. We have to meet again next month to come up with a solid plan.

Out of interest has anyone here tested their uterine nk cells? Knowing that mine are low and my peripheral ones are high seems to be adding to the confusion on what approach to take.
Also why can no one decide if aspirin should be taken before bfp, at bfp or until after confirmation of a heartbeat!? 😫
I literally need someone to tell me exactly what to do and in a convincing way so I can trust the process and go for it.
I think the only think we decided on is that we need to explore adding estrogen either after ovulation or bfp to see if that stops the night sweats and helps me stay pregnant.

Also is it just me or does the whole recurrent miscarriage thing make you weirdly morbid and aware of your own mortality. Feel like I spiral a bit more after each loss and my anxiety goes 📈
Such a weird headspace to be in! Xx

I'm so pleased you had a good birthday @Danni8 ❤️
Our losses are very similar, not got past 6+2 on scans, but MMC. My uterine nk cells were normal then low but overactive peripheral (normal count though). I did sitagliptin but think that contributed to my poor lining. Dr S says aspirin from preconception but when I saw Professor Brosens (he did my nk biopsies) he said not until after 7 weeks 🤷🏻‍♀️ clear as mud. I am just doing daily aspirin.
I'm sorry to hear your review has left you more confused, but I'm pleased you're seeing her again and hope you can get a new plan you feel comfortable with.

I definitely think after a loss it really spikes my anxiety and low mood. I tend to get really clingy with dh. Sending love ❤️

@RJayne Dr as doesn't seem to retest once treatment has started, but I know Dr Gorgy does. I've been under him 2.5 years and not been retested.

I've attached my bbt chart, I've not started cyclogest yet (6dpo) but looks like my natural levels are OK?

Hi everyone, I have not posted here in probably around a year since my last mc in July as I just needed a big break from things but I wanted to share some good news. We have been TTC for 3 years. 7 early losses and 2 IVF cycles later I've made it to 12w and had a scan showing everything is healthy at this stage.

My losses were 2 chemicals, 1 blighted ovum found at 8w, 2 spontaneous losses 5w and 7w, and 2 MMCs after seeing a heartbeat (both saw a hb on 8w scan but had stopped by 9w, baby was always measuring small and didn't get bigger than 7w). Both of my MMCs were tested and found to be chromosomally abnormal.

We decided to go to Dr S in Sep 2021 after 5 losses and was put on the complex plan (pred, intralipids) and Humira. Didn't get pregnant while on the protocol, other than one chemical.

It was taking us longer and longer to conceive so DrS suggested a normal sperm test (we had done the DNA frag test which came back slightly high with no obvious cause and nothing we did made a difference to the result in the follow up). The sperm test came back low so IVF with ICSI was recommended to us.

We did a round in May 2022 and got 2 blastos, transferred one fresh and got a BFP but sadly this ended in my second MMC and was the second one with a confirmed chromosomal issue.

So we decided to do another round to create more embryos and send them for PGT-A testing, including the one frozen from first cycle. Dr S said we should just go ahead with the frozen transfer as odds are the second would have been normal but I couldn't face the risk! We were lucky to get 9 blastos in second cycle and of these 5 came back euploid, including the one from the first round!

We transferred one of these in March, following the protocol from DrS, and it has stuck, we found out that it is a boy 💙

I'm now starting to wean off the meds which is terrifying but just trying to trust the doctors and my body (!) that it will be ok. Scared to believe this might be happening this time and I am well aware things can still go wrong but as all my losses have been so much earlier I'm feeling positive.

I'm so sorry to see so many of you are still struggling and have had further losses. I totally know what this feels like, as if you are left behind in life. I've got no advice really as I didn't/don't cope with it well at all and cut myself off from a lot of friends who have had their babies.

Just keep going, you are all so so strong and eventually it will be your turn, or at least you will know you did everything in your power, and if it didn't work out you can't ever blame yourself (I was thinking about how to ultimately accept being child free, although we were not at that point yet).

Love to all of you xxx

@VenusStarr that's a relief to hear its not just me with the anxietyand low mood. I also become VERY clingy with my hubby too. We are putting our poor brains through a lot.

I hate that there are such differences of opinion in the aspirin front. Ugh. I'm going to do some more reading about it and come to a decision. Do u have clotting issues? I just have the pai 4g/5g thing, a raised TEG (done at St Mary's) and I once had a positive lupus anticoagulant. Just one positive out of lots of negative lupus anticoagulant tests so I think it was a fluke.

Your bbt chart looks lovely. Good temps. You must be a temping pro. I'm so Shute at it I don't bother anymore (even when I've been ttc naturally)

@Amy00 thanks for sharing your good news and encouragement.

Xx

@Amy00 thank you for sharing your good news story. I hope that the day eventually comes for all in here too. All the best for your ongoing pregnancy xx

@Amy00 massive congratulations to you! Thank you so much for sharing. So was this your 2nd transfer with the Dr s plan? I hope you're able to enjoy your pregnancy. I remember with my son I was in so much disbelief that it was actually happening.

Congratulations @Amy00 💙 lovely news, I'm so pleased for you. Thank you for sharing. Xx

@Danni8 it is such a lot to go through 😓
No clotting issues, but when I've done ivf I've been on blood thinners too. They're not part of my standard protocol though. I wanted the TEG test by my rmc didn't offer it. But now I've been pregnant and used blood thinners and all the immunes, I guess it's not a thing for me.
I've heard mixed things for aspirin and that it can prevent implantation but again, I have implanted twice on it. Let me know what you decide.

I've got into the bbt habit now, I tend to wake up at 6.30 everyday so it's not too bad. I like to know when af is due. Still think I might just do 1 cyclogest from tomorrow anyway. X

Pretty sure I'm out 🙄 only 8dpo but I had lots of period pains yesterday and even taking the progesterone last night my temp dropped today. Just need af to hold off til next Sunday for timing the hyfosy 🤞

How's your tww going @star2022

Is it otd today @Zest11 hope you're OK ❤️

Hope everyone's OK. Am off to zumba this morning. Hopefully will improve my mood!

@VenusStarr oh no, do you normally get periods pains this early though? 9dpo today...I would have broken and tested by now. Any pregnancy symptoms for you? I've had my earliest faint positive at 7dpo.

@star2022 & @Zest11 any new from you? Hoping for the best.

I missed by entire fertile week and ovulation due to an argument with my husband. Haven't spoken for a week and it doesn't seem as though it will happen anytime soon. Normally I would try and resolve it if its my fertile week because I don't want to miss out but this time I was just that pissed off with him to be honest. He pushed my buttons too far and then all of a sudden I remembered all of the things he has done wrong since we have been married.

I only have to come to the office once a week but been in every day since April because I feel depressed at home and then the baby thought's just take over my brain. SOOO many pregnancy announcements and its getting to the point where I get pissed off with whoever announces a pregnancy even if its my nearest and dearest which is awful of me but I just can't help it!

Hi everyone how are you all?

@VenusStarr how are you feeling? Have you taken a test? Have the period pains stopped? Your chart looked great!

@Zest11 I really hope you're ok ❤️

@comingsoon786110 i know the feeling of arguing during fertile week! I feel like me and dh always argue like clockwork (mainly due to the anxiety and stress and pressure of fertile week!) Hope things calm down for you. I also feel like there are so many announcements and also whenever the sun is out, it's as if everyone suddenly posts their kids on socials - i've had to actively stay off socials these last few weekends as its just too much! Totally know how you feel.

I don't have any updates unfortunately, it's still super early for me - i'm 8 days past trigger today, (6dpo) tested yesterday and today and the trigger shot lines getting fainter so it's still trying to leave my system. Symptom wise, the insomnia from the steroids has kicked in (haven't slept for 2 nights) and my progesterone must be at its peak as i'm seriously bloated. I will keep testing this week as I'd rather just know than falsely hoping for a miracle.

Hope everyone is well xx

@comingsoon786110 Ahhh I'm sorry you missed your fertile week. I completely get the arguments. There are many (fortunate!) people out in the world who don't have to not only experience the difficulties with fertility but also the impact they have on relationships! I hope things sort themselves out soon. I get you with the announcements...it was announced that someone who has just gone off on maternity leave had her baby. I think I actually rolled my eyes. Oops.

@star2022 the insomnia is horrid isn't it!! I would wake up at 4am, sometimes 2! I hope you're able to get some sleep tonight. Good that the progesterone is working too!

Thank you all for your messages, I am okay. Well I'm pissed off really...really pissed off! I really don't know what to do next. I feel like all embryos are doomed when they get put in my body. I don't understand how I can have 4 failed transfers since 1 being successful. Where are the answers?! (Fully aware if we had the answers, none of us would be on this board!) I didn't seem to have an issue creating them despite my terrible amh...there are 2 left and the grades seem to be as good as what I created 4 years ago (although I did have more) but that means nothing, clearly after this apparently top one dissolved in my body. One was a 3ab blastocyst on day 5 but they cultured it to day 6 so it's now a 4aa so I've now decided that it took too long to get to that so it's probably useless. I don't know whether to follow the Dr s plan again another time or not because I don't know whether my problem is that or not and I'm now worried his cocktail is preventing implantation...who knows!

@star2022 the medication insomnia and bloat is real! I hate those side effects that come with the medication but at least you know your body is definitely absorbing it. Even if you take your pred after breakfast is it still an issue? I normally intermittent fast so when I'm back on the meds its always an issue for me!

@Zest11 sorry I can't help much with regards to the embryo because I'm useless at understanding all that but I definitely get what you mean with regards to following Dr S's plan again! I feel like it's not doing anything for me which goes back to the earlier posts about testing you NK cells again after you have been on the meds for a while...I feel like my problem is high NK cells along with something else which is why I'm not trying again until I have had further tests done. Sometimes I feel the plan he has put me in is wayy too strong and its having the opposite effect on my body.

I have also decided the next time I am going to try, I won't be taking aspirin (I stopped it after my 6th loss at the end of April) I have read studies where it actually interferes with implantation (newer studies) and a lot of dr's don't actually recommend it until after 10 weeks gestation. I'm just confused in every aspect to be honest. I cannot stop googling and thinking and wondering.

I hope everyone is well 💝

@comingsoon786110 it does feel early to be getting period pains, but they're definitely period rather than pregnancy, they hurt and its that draggy type feeling. The earliest I've had a positive is the evening of 10dpo but a squinter.
I'm sorry to hear you and dh have argued ❤️ I hope you're OK.
That's rubbish about the pregnancy announcements. I think I'm numb to them now, I just think well, of course you are.... 🙄 (not bitter over here! 🙃)

@star2022 I just feel like it's not worked, I nearly did my frer today but held off as I've only got one. Need to decide whether to do it tomorrow or Wednesday. I worked out if af arrives on Saturday I could go down next Thursday (although it's not ideal for work). I think if I do test tomorrow them at least I can stop the progesterone.
I hope your line gets darker and you don't have a lingering trigger this time. And I hope you get some sleep.

I'm sorry you're passed off @Zest11 ❤️ it's really shit and no one can really say why it didn't work. Do you need to see Dr S to review? It's hard to know what to do next. Will you have a break or go straight into a FET? Xx

As expected bfn. Sigh. So hoping for af in the next few days. I didn't bother with progesterone last night. Looking ahead to the hyfosy now.
I've also got the beginnings of a horrible cold, got a sore throat. Just done a covid test and it's not that. Dh is still waiting to hear about his op, hopefully not long now.

How's everyone getting on? X

@VenusStarr oh no, im so sorry it wasn't the news you were hoping for. Hopefully you will get some answers with the hyfosy. It sucks when you get your hopes up and then they just get shattered.

Question for those who had the EMMA/ALICE testing done. Were you able to get this on the NHS and if so when/how was it requested? Do you really have to push for it?

I have been doing a lot of research on it and apparently a lot of doctors dont even know what it is!