Immune/NK cells pred thread #31

@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.

@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?

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 😘

@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!

@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.

@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?

@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 preseed is supposed to be a good lube for ttc.

I've had the Emma, Alice, 4 hysteroscopies and a laparoscopy. 🙃

Why are you considering a hycosy and a hsg? What do those look at?

Thanks ❤️. Yeah they do usually go back to normal quickly. I'll see what they say. If they want me to wait I might to an egg collection at another clinic because I'm done wasting months!

Hi ladies.
Just catching up. Been a really emotional weekend. I was alone most of it which didn't help.
Bleeding started yesterday and passed sac today. Out of all the losses I've had, I've only seen that clearly twice. I've sent it off to be tested just incase but as it was pgs tested I'm expecting it to be normal.
I cannot believe I've been miscarrying pregnancy after pregnancy for nearly 6 years. What a nightmare.

@VenusStarr I've tried testing the tissue twice before but it hasn't produced results. Let's see what happens this time. I hear you re surrogacy. It's only immersing myself in that world that's helped me to kind of come around to the idea, but yeah you have to do what's best for you.

@comingsoon786110 sorry to hear about your loss. And gosh, the timing of these pregnancy announcements is just so cruel.
@Zest11 thank you 💗 I hope you're starting to feel better after EC. Hope you get a good number of embryos.
@Lily1990 defo. The NHS owe you at least cyclogest. I'm sure some NICE guidelines came out last year saying that if you've had 2 or 3 miscarriages your gp should provide progesterone. Can't remember thw exact wording of the policy but maybe look it up then book am appointment and wave it in their face.
@RJayne I'm sorry to hear about your miscarriage. It's really hard when you believe in a plan and it flops. Hopefully we're all just a tweak or two away from success. I'd also reccomend the reproductive immunology group on fb too. The ladies there have a lot of knowledge too.

P.s. does anyone know if ivf clinics will let you transfer again the cycle after a miscarriage. So the next time cd1 rolls around again?

Also does anyone know if an ERA is worth it for ladies with recurrent miscarriage or is it just for recurrent implantation failure?

Oh and I'm considering the AIP diet. Anyone here given it a go?
Xx

@VenusStarr Brilliant, thank you! Just requested to join the group.

I was just reading back on a couple of posts too, definitely agree with the puffy cheeks / face. Literally noticed this the other day.

Once I’m ready, I plan to take control over what I eat / exercise etc because the likelihood is we’ll take a long break between cycles x

@comingsoon786110 I’m so sorry to read about what you’re going through. I’m very much in the same situation as you. I miscarried on 18/04 for the fourth time, second with CRP. We were told during what should have been our 9+3 week scan at the EPU that our baby’s heart had stopped. We were sure this was our time and with the support of Dr S, we trusted his protocol in helping us bring a baby home.

I’m well and truly lost and just don’t know how much more we can take, physically, emotionally or financially!!

In terms of medication, I’m on everything you are on, minus the GCSF, which I’m assuming Dr S will suggest next. We opted for MVA surgery with CRP so just waiting on the results. Tbh, I’m losing hope with Dr S but can’t help but feel we could be so close.

Sorry, I don’t have advice as such but just wanted to give reassurance that we’re in this together 🧡

@VenusStarr I saw that you mentioned a Facebook group, do you know what it is called? I’m always interested in reading about / connecting with more people who are under Dr S’s care.

Hey @Lily1990 I've only taken 10mg before for my 4th ivf transfer and was on it for about 12 days and I'm sure I noticed my face becoming rounder (not sure if it was me overthinking it though as hubby said I was fine) but i also had ravenous hunger with them, like crazy hungry so 25mg really scares me.

Also wanted add if anyone knows- how soon after you stop them does your face return back to normal? And do you have to wean off them at 10dpo or do you just stop them completely?

Apart from the round face, I genuinely felt so good on them, my body just felt stronger, no aches and pains and I had SO much energy so i'm looking forward to that part lol xx

Hi everyone, thank you @VenusStarr @star2022 @Danni8 and @Zest11 for your kind replies on my message about the shitty doctor, I really appreciate it xx
@Danni8 I haven't been prescribed anything from the RMC, but have now asked to be referred to a different one and after your advice I'll push to at least get cyclogest and aspirin, as have spent a bomb on private cyclogest prescriptions so far!
@comingsoon786110 I'm so sorry to hear about your miscarriage and the news your sister in law is pregnant, that sucks. I think it sounds a good plan to call St Mary's and ask for the hysteroscopy, so you don't leave any stones unturned. Even if there is nothing wrong, it's a piece of the puzzle you'll be able to rule out.
@Zest11 keeping everything crossed for you, hope you're able to rest and relax now - well done for getting through this.

I have the same question as @star2022 about the moon face side effect of steroids - I've never taken them before and nervous about it (although I don't even have my results or treatment plan yet!). TTC is hard enough without your face getting fat and people wondering what's wrong. Has anyone who's taken the steroids noticed a moon face or has it not been so bad?

Hope you're all enjoying the bank holiday weekend xx

@Zest11 ahh i'm glad your lining plateaued and glad your EC went well, hope you're starting to feel a bit better! Hope your next few days aren't too stressful, I remember how anxious these days are after EC. I feel okay about this cycle, just always a bit of a headfuck going into a new cycle as on one hand I feel hopeful as this will be my first cycle after having the hysteroscopy done, and it will be my first cycle on 25mg prednisolone but then on the other hand my brain is saying 'who are you to get excited when its never worked for you in the past?!' and the fear and doubt creeps in. I feel exhausted already and it's not even properly begun. My scans in a few days when i'll find out about lining/follicles etc.

@comingsoon786110 I'm so sorry to read this. I really hope you're doing okay as can be. Can relate to the sis in law situation as the exact same thing happened to us last year when my sis in law announced their pregnancy after i had my 3rd failed transfer, 1 month into their wedding, weren't being careful and got pregnant at the drop of a hat. We're actually going to see the baby tomorrow and I just feel so bitter about it all but know that its completely normal to feel this way too so i'm not beating myself up too much. I really hope you get some answers.

@VenusStarr How are you doing? Is AF over? You restarted the steroids this month for SO after having a 6 month break was it? Did you notice the moon face appear even just from taking it for 10 days? I'm soo anxious about this side effect, I'm generally a slim person and I just don't want the round face so that people start to assume/ask that i'm pregnant. I know it sounds silly, but it's just going to irritate me in case i get triggered. My MIL in particular 🙄 Do you feel a bit better now knowing you've got a plan in place for this month?

@Ems123456789 sorry i forgot to say welcome and sorry to find you here! Have you had a medicated FET before? And are you doing it alongside dr s immune protocol?

I started bleeding today after some brown spotting yesterday. So I guess this is miscarriage number 6 confirmed at 4+6 days.

Just had the news yesterday that my 22 year old sister in law is pregnant a year into her marriage. Not planned at all, just careless with her contraception and boom. Was so hard to hear just as I knew I was expecting a miscarriage bleed. No one in the room knew what I was going through apart from my husband and him and I haven't spoken since yesterday. He deals with things so differently and has kept himself so busy these past few days that he doesn't even know I have started my bleed yet.

I am thinking to call St Mary's on Tuesday and tell them I would in fact like to go ahead and have my hysterscopy done. I knew Dr S is against but to be fair he has never scanned me and doesn't know the shape of my uterus or if there is any scarring or polyps there etc. I have done A LOT of research since yesterday and I am starting to suspect Asherman's syndrome. I am just so sure Dr S's treatment should have worked on me and I can't seem to think why it hasn't. I am not okay with just being discharged like that from RMC and will be raising a complaint.

Because I refused it in the passed and now want it does it mean my GP will have to refer me again or I can go back to them and just ask for another date?

Oh and also I am thinking to try a completely unmedicated cycle this month. Literally not even aspirin, just progesterone maybe. It's a long shot but I have tried everything else but this.

How is everyone else doing?

@Zest11 at the moment I believe it’s down to low amh and immune issues! Though there are other tests I have not done like Emma/Alice and Sperm DNA frag etc. if my next transfer doesn’t work I’d perhaps look into these.

I am sorry to hear how sore you are. Egg collection is a bitch. Hope you can rest and take it easy over Bank hols

Hi

Just catching up on all the posts

@Danni8 I'm sorry with what you're dealing with. It's so rubbish and it's even worse when you invest so much emotionally and financially to still not have answers! And pregnancy announcements are so so tough. I'm really sorry.

@Lily1990 oh ffs, it's such an awful thing to go through and then some staff just really don't understand how insensitive and invalidating they are.

@Ems123456789 hi and welcome. Sorry to find you here. Welcome to the low amh club. Do you know if there are any other causes for you not conceiving? I am lumbered in the 'unexplained' category although Dr S did find high nk activation but then said he couldn't be sure that was stopping me from getting pregnant in the first place.

@star2022 thank you for your reply re lining. Mine has seemed to plateau at around 12 for this cycle so I think that's fine. I hope your period is calming down now. How are you feeling about this cycle?

@comingsoon786110 oh I'm sorry you're unwell on top of everything! So annoying. The first time I tried prednisolone a few months ago (naturally) I was gifted with COVID. Brilliant. I hope the illness goes away quickly.

@VenusStarr well done on the fitness!!your Fitbit is looking great! I have never done Zumba...the dance moves look so complicated! I am a regular at combat though! I think your plan is a wise one...it's so tiring month after month ttc, remembering to take the different medicines at the right times and yes, the commitment to frequent trips to epsom can be exhausting. I sort of factored that in when I thought I would just do 1 last round of IVF and see what happens rather than month after month of SO. I sort of want all this to end and I was put off when Dr S said it takes on average 4-6 months of SO.

Yes EC was yesterday. I feel sore, bloated and uncomfortable. But I suppose that's to be expected being on the highest dose of drugs and the shock my ovaries must have had. I forgot what it was all like. I'm trying not to think about how things will pan out. I'm still contemplating on freezing everything (if I even get anything!) to let my body heal. I have had 5 transfers in total and 1 wonderful boy but he was from a frozen (EC in 2019) so I am unsure about a fresh transfer. I want to be in the position that if/when it fails I will have peace of mind knowing I tried everything in following the plan.