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!

@VenusStarr I use preseed too - its the only one I found isn't a horrible consistency. I've used conceive plus in the past didn't like it, preseed is good and it comes with the applicator to insert it 10-15mins before xx

@VenusStarr woah that was quick loool. Nah you're not clutching with preseed. Lots of people use it.
Oh never heard of a hyfosy. If its not too painful or expensive then why not.

Thanks for the ERA advice. I know, and its so much money to just throw down the drain. I'm with crgh. And considering going to lister. We did access fertility with crgh so can do FETs there until the embryos run out. Only have 2 tested ones left and one with no result so we might just transfer 2 and if that doesn't work, start from scratch at lister.

Another random que
This might be tmi so apologies in advance but with most of my miscarriages (not including my chemicals) about 2days-7days before the bleeding starts, I get a gush of clear (almost egg white) fluid and its slightly sticky. Wtf is this? Anyone else have this?

I always wonder if its just part of the whole horrible ordeal. But as I'm trying to analyse everything, is there meant to be fluid in the uterus at that early stage?

Thank you @star2022 how you getting on. Is it the last day of letrozole today?

@Danni8 not messing about here! 😜 I need to look up the cost for the hyfosy but if its under £500 might just give it a shot.

We're quite limited on local clinics, only Create and Care by us. We did look at ivf with crp and Kings but I'd probably have to stay down there doing stims and it doesn't feel practical.

I don't recall anything like that with my miscarriages. I have had bleeding in 2 of them, just a bit but I think that's when the heartbeat has stopped / it's gone wrong. I do think I've had ewcm type discharge but not sure if there was a pattern to it. I don't think you have more fluid in the uterus though.
It's hard not to overthink everything isn't it xx

@Ems123456789 I do wonder if with the low amh there's some immune issues causing it to be low which also causes the high nk activation too? When I was 30 my amh was 11 then so whilst still "normal" definitely not what you expect for a 30 year old and 5 years later it's far far worse. Will this next transfer be your first on Dr S' plan?

@comingsoon786110 I'm sorry, that's really difficult news to face and at such an awful time too.

@VenusStarr I felt okay for the first few days but then the tiredness/exhaustion hit me. It also felt like I was carrying a few marbles in my pelvis as the days went on but it was manageable...I did consciously rest. I have heard various ideas on the best treatment plan re low amh...some say mild and focus on quality of the few eggs there are whereas others are more aggressive. No idea what the "right" answer is...high stimms could also lead to eggs being over mature too but low stimms could mean not enough/any mature. Why can't it be straight forward?! I would do the hyfosy/cosy too...I did one a few months ago actually just to make sure everything was all okay. Don't think it's clutching.

@star2022 hope the period has eased now and you are edging towards your scan. I'm glad for you that hysteroscopy has been done...you will know that, going into this cycle, your uterus is completely clear!

Interesting to read all the comments about era, steroids etc. ERA was something that was in the back of my mind but I suppose if things have implanted then it's probably not worth it. And to add my bit to the steroids, I haven't taken them for long as I have so far come off after 10 days due to no success but I am ravenous when I am on them.

@Danni8 i just got a second opinion from the Lister.. dr Thum, he was very good compared to the doctors I have had so far and an expert in immune issues.

@Zest11 i do too. Though I asked the doctor if the 2 are related and he said no. But I have also read other things that say immune issues can attack the ovaries and therefore your reserve. I probAbly need to be more focused on the plan moving forwards rather than the reasons behind it all, I just find it frustrating when no one really gives you any solid issues.

I am not under Dr Shah. My clinic in Brighton are giving me prednisolone, intralipids and clexane for my next frozen transfer. I was on prednisolone last time and still miscarried and according to the NK testing prednisolone is actually more effective for me than intralipids so I don’t feel that hopeful!

thanks for the love everyone 💞

I passed the sac yesterday (sorry if that's TMI) but bleeding has been pretty minimal this time for some reason. I've pretty much stopped bleeding and just spotting now.

CRP emailed me back and said I need to do another blood test to check for ectopic but I know its not because my HCG is defo below 5 now as tests are completelyyy blank.

Thinking to try a completely unmedicated cycle this month- just progesterone. I know Dr S doesn't like you trying the month right after a miscarriage but I've listened to him up until now and seen no success so let's try not listening to him. He was also the one that advised me against the hysteroscopy without even looking at my scans. Sometimes I think he just says anything to get you out the room and onto his next patient.

I was wondering if somebody could help me interpret my results pls. In all honestly I still don't think I understand mine in terms of NK cell activity levels etc...

Please treat it as though you are explaining it to a toddler, the more detail the better!

Thanks in advance 😘

@Ems123456789 yes that's what I read too. And yes, you're right about looking forwards rather than causes. Although I do wonder if we had a clearer cause we would have something to work with. That's really good your clinic are giving you all the immune meds...I have kept quiet to mine as I know they're not really believers in it. I felt the same re. the prednisolone/intralipids and the pred being more helpful. But I think @star2022 explained it earlier in saying that the intralipids etc help with implantation and apparently they do for mc as well. What does of pred were/are you going to be on?

@Zest11 I agree. Also if I knew it was genetic then I know that there is nothing I can really do about it. If I knew it was mainly lifestyle than I’d try even harder then I’m already trying 🤣

good idea on keeping hush. My clinic refused to work with anyone else and refused to do IVIG but I would risk spending £2k per transfusion on IVIG for my next transfer because it’s frozen and not genetically tested. So we shall see.

I was on 25mg prednisolone last time and I’m on the same again for the next one. What about you? I did find it gave me insomnia a little.

@comingsoon786110 I am not a doctor so please don’t take this as gospel but I think what yours says is your natural killer cell count is high but it doesn’t look like they are highly activated. But I’m not sure if this test was done before or during pregnancy? Mine are highly activated just normally, but I know some women’s only get activated once pregnant. As for the TH1/TH2 it looks like this is fairly normal. As I say please don’t take this as gospel - would hate to give you the wrong insights.

@Zest11 How are you getting on? Are you implementing dr s protocol alongside your ivf? Are you having intralipids and the steroids and will you be doing a fresh transfer?

@comingsoon786110 Like ems has said don't take this as gospel either but it's just how I have interpreted mine - so it looks like your total number of NK cells are high, but the activation of them are borderline so not normal nor high. However, when your nk cells are in a pregnancy state their cytotoxicity is higher than normal (22% should be below 20%) and for you apart from the IVG which reduces their toxicity the most, prednisolone and the higher strength of intralipids work best for you to lower their activity.

Its funny isn't it how we all are having to interpret our own results, you'd think after spending so much money they would at least explain it better lol

@VenusStarr yep it was my last day of letrozole yesterday thank god, I've got my follicle scan booked for tomorrow. Dr Edge says day 7-9 for me as i think my body responds fairly quickly to letrozole. Just hoping its enough time for my lining to thicken and i'm not sure how my lining will be after a hysteroscopy. How are you feeling?

How is everyone else? I can't believe its May already, I really didn't think i'd still be here on this journey! 🤦‍♀️

@Ems123456789 yes, that is exactly it!! If I knew there was something genetically wrong then I'd be so much more like "ahh, well I can't do anything about that." Yes, same amount of prednisolone as you but for me, the insomnia isn't "mild." That's probably quite handy you can get everything done under one roof!

@star2022 yet again, you have explained the results so clearly! Next time, can you sit in on my appt with Dr s? 😂😃 Yes, following the plan and had the intralipids before EC. Hope the scan goes well for you tomorrow. Hopefully if your lining gets pretty thick in normal cycles, days 7-9 will actually be work quite well for you. Although it may be that the polyp contributed to a thicker lining. Let us know how tomorrow goes!

Morning all,

I've had a bit of a crisis of confidence the last few days and have felt so crap on the pred and progesterone. Didn't sleep last night at all and felt like I was going to have an anxiety attack my heart was pounding so hard. Is it normal for the pred to make you feel so wired and anxious? This was my fourth month SO and looks like it's failed again as my bbt temp has dropped to baseline today and I'm only on cycle day 21. Wondering if my progesterone levels, even though I'm on the cyclogest, are not high enough. Either way sooooo bummed out.

@Ems123456789 I've also read that immune issues can cause low AMH/ovarian functure. It frustrates me that CRP are so reluctant to consider reasons for your infertility... my left ovary isn't doing anything at all on the high dose letrozole 10mg - and I'm now thinking about trying one cycle on a lower dose to see the difference. I'm concerned it's causing low quality egg. But I only ever manage two dominant follicles.

@star2022 I also can't believe it's May. I'm starting to really worry I won't be able to get pregnant again now as each month goes by! Hope your scan goes well today. Nice you've got Ms Edge. Looks like I'll have to have Dr Shehata next time and I'm dreading it!

thank you @Ems123456789 and @star2022 that makes a lot of sense! When CRP explained it they whizzed through it and didn't even give me the chance to fully understand it all. The test was done when I wasn't pregnant. Does anyone know why they don't include HCQ in there on how it reduces the level of killing or is this just to suppress the immune system overall?

My reduction in killing levels don't seem that good to be honest and it scares me. I have read on these forums where other's percentages are far higher than mine which is why I probably continue to miscarry.

CRP emailed me back asking me to come in to see Dr S mid May but I am not going to arrange this appt until I have had my hysteroscopy. I just feel as though Dr S will keep adding medication probably some of it which I don't even need because the issue is something else. I feel in my heart that they will find something in my hysteroscopy and then I will try again with Dr S as obviously I do have NK cells issues too.

I have major moon face right now but glad to be off the pred so this can go down. It does take several weeks though if not months and then I will probably be back on it again.

Hope everyone else is well. 💚

hello all - i'm a lurker here, trying to understand it all before my first Dr S cycle (after 3 x FETs at Kings). I'm about to start the fragmin, intralips, omeprazole, pred + vits. ahead of a 4th FET.
Does anyone else find timing it all yourself, and matching up with Dr S protocol with the Kings one, tricky? For example I don't know to what extent getting the days wrong is significant (eg doing intralipids on day 11 v day 7). it's so much money and responsibility to get it all right. I carry my scruffy paperwork everywhere going over it all several times a day 👵

@comingsoon786110 what is HCQ?

Your reduction in killing levels is very similar to mine.

two of my TNF alpha and IL gamma results are sky high. Well above the range. Neither doctor has said anything to me about Humira but I’ve read that this is often used for that. Not sure if anyone has any experience with that?

@HopefulH it’s interesting what you say re your left ovary. Mine has never responded until my third ivf attempt where I did Chinese medicine and took DHEA supplements beforehand and suddenly the left one came alive. I also got my best egg collection of that round. 6 compared to the 2 I’d had previously.

I wondered if someone could explain the medicated frozen embryo transfer timeline to me? It’s my first one as I’ve never been lucky enough to have anything to freeze. I should get the details next week but does the transfer happen around day 23 of the cycle? I’m assuming that if you aren’t doing stims and egg collection that you only have acouple of scans like the baseline one during your period and then again to check the lining?

Loads to catch up on. Sorry if I miss anyone

@star2022 hope your scan goes well today 🤞 let us know how you get on. Hope you've had a good response. What was your letrozole dose again?

Sorry you're not feeling great @HopefulH I also measure bbt but not sure how helpful it is really. Especially once ovulation is confirmed and in a medicated cycle. Mine looked fab last month and it meant nothing. Have you any other signs of low progesterone? Sending a hug, it's hard doing medicated cycles.

@Ems123456789 that's interesting about immunes and low amh. Mine was 5 back in 2020 and I did mild ivf and only got a few eggs. My afc is about 8 too. There must be something in it. I'm too scared to test it now.

@comingsoon786110 I've added my results (thanks @star2022 for the explanation). Mine look good on paper for the treatment but we lost a healthy baby on pred, hydroxy, fragmin, intralipids, cyclogest and lubion so there must be other factors (God knows what) at play. As everything pointed to it should have worked.
Good idea for the hysteroscopy before you see Dr S. Any news on when that might be?

@nottsgdns welcome. Are you doing a medicated FET? I found the clinic pretty good in helping me schedule intralipids. My first FET was textbook. So I had a scan on day 12, cleared for transfer, intralipids were on day 13. I did start fragmin on cd9 after a scan was looking good. But the nurses are pretty good at working it out.

@Ems123456789 my medicated FETs were, start progynova on cd2. Scan on cd5 to check ovaries were quiet. I ended up transferring on cd19. I was with Create though and had 3 scans- think it was day 5, day 9 and day 12. Not sure if other clinic works differently.

@Danni8 how are you?

I got a message on Instagram yesterday pf someone who I chat with on and off. She'd done donor egg ivf and all was going well but she'd found out the baby had died 💔 she'd been advised not to do any immunes (not under Dr S or Gorgy but has seen the implantation clinic). It just makes me really sad that there's absolutely no guarantees with any of this. Like we're all trying our hardest to do the right thing and make the right decision and its out of our control really. I just hope that for all of us it works out ❤️❤️

Think the pics are added now...

@Ems123456789 I've had 3 x FET. Usually have a scan to check lining thickness around day 7-10, and then cleared for the transfer on day 17 (seems to be on same day as your usual ovulation). Then 10 day wait for pregnancy test.

@Ems123456789 sorry HCQ is hydroxychloroquine. I have stopped it for now though because I am in a strop a put off everything at the moment.

@VenusStarr I called St Mary's RMC yesterday and she said I will have to have another consultation with Dr Raj Rai and then he will decided. I disputed that and said how will his decision be different if I am in the same position if not worse than when Prof Lesley Regan advised me to do it. Anyway, waiting to hear back from them. Will follow up tomorrow.

@Ems123456789 I think I am leaning towards Dr Thum. But just conscious I feel like i have seen every immunologist. Is Dr thum the first RI you've seen? Also, I have high tnf-A and tried humira this time last year but it spiked my cytokines so switched to tacro which brought them down. I haven't tested them recently though.

@VenusStarr it's like we almost have to overanalyse everything to figure out what's been going so wrong. Re how I am. Not great, defo in survival mode. Hubby has planned a long weekend away as my bday is on Monday so hopefully we'll have a good time.

@star2022 I know, I can't believe we're in May already. Time passing has really been freaking me out since this all started tbh.

@HopefulH I stopped doing the bbt thing as it always freaked me out and I wondered if meds could affect the readings. I don't know if you do acupuncture. Sometimes they can look at your bbt and advise...

Hope everyone else is okay xx

@Danni8 yes he is so to be fair I cannot compare to others. Interesting you say that re the cykotines, I haven’t had either of these drugs mentioned to be by either doctor I have seen which makes me nervous as my cykotines levels are quite high.

For those who have had intralipids before an embryo transfer…. Can I ask how many days before the transfer the infusion was done?

Hi everyone thanks for the well wishes for the scan will update once i've replied to you all..

@HopefulH How are you feeling now are you still getting the palpitations? Sorry you haven't been feeling too great, where in your cycle are you now?

@comingsoon786110 they don't include the hydroxy on the tests because its doesn't surpress the immune system, its more of an immunomodulator. I think during covid times they found hydroxy worked just as well as the pred so they were offering that as an alternative and found people still had success from it from just regulating the immune system. I'm really really dreading the moon face - i did a healthy food shop today just to avoid any extra weight lol.

@Zest11 How are you? Have you had your transfer? If so wishing you all the best in your 2ww!! Got my fingers crossed for you x

@Ems123456789 when i had a medicated FET I was on the estrogen from day 2, had a scan around day 9 to check lining, started progesterone at day 12 while on estrogen, transfer was day 17 for me, hope that helps. I only had 1 scan as my lining was quite thick quickly.

@VenusStarr How are you feeling? are you glad you've had the break and are you still trying naturally? That's so sad about your friend, its all just so shit isnt it. I can't believe your nk reduces by 80% with the steroids and intralipids too. Have you ever asked dr s whether too much of a reduction can cause the opposite effect? It was just a theory as I'm sure I read we still need some sort of immune response to allow implantation to happen and if you are now struggling to get a positive, would that have anything to do with it? maybe you don't need intralipids as well as steroids. I'm no doc so please ignore me if it doesn't make sense, you may have already asked the question. Would it also be worth getting another nk cell test done to see if your numbers have reduced?

My scan went well thankfully! @VenusStarr i'm on 5mg letrozole. I had a small 5mm on the right ovary and i immediately panicked, but the left side had 2 dominant at around 16mm, lining was almost 7mm. I've been told to trigger on sunday which feels quite late for me, i'm wondering what happens if i ovulate naturally before that 🤔 dr edge also has stopped my hydroxy, and i'll be on the pred this month for the first time at 25mg. My polyp was nowhere to be seen after my hysteroscopy which was great news, and biopsy came back fine. She said it was quite a big collection of polyps/tissue approx 1.5cm x 1.5cm so i'm feeling hopeful this month with polyp gone and first month on the pred so trying to stay positive xx

@Ems123456789 this is my first time taking the intralipids on top of the IVF. The intralipids will be on day 12 and the FET on day 18. The clinic seem v flexible about fitting the intralipids in on the appropriate dates, saying that the FET is moveable because it's a medicated cycle.

Good to hear from you @star2022 and pleased to hear that you have 2 good follicles. I think they do like to trigger around 21mm now whereas the first time I did it, I triggered the day after my scan showed a 17mm follicle.
The intention was to loosely try but we've not had sex since Monday. Dh is quite stressed so not pushing it. I'm temping and done opks, today's is darker but not peak yet. I'm expecting ovulation over the weekend so might get one go in but we'll see.

I'm confused about my results. I just don't get why our baby died when she was healthy and the pred and intralipids should have worked well 😓 I think I'll ask next cycle if we do superovulation (we're literally on the way to the hospital to see about more surgery for dh so might put a spanner in the works).

@Danni8 thats seet that your partner has planned something for your birthday. I'm sorry you're going into your birthday off the back of this loss. I hope the break is what you need ❤️

@Ems123456789 I had intralipids on cd13, transfer was cd19.

Hope you're doing ok @Zest11

Xx