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 am well thank you, celebrated my birthday yesterday. DH and I are thinking to book a holiday as we have run out of present ideas for each other. I still owe him his birthday present from March!

I am glad you have a plan though and hope your partner's surgery goes well. I am just waiting for a call from Prof Regan's team regarding my procedure. I think she is going to run my blood clotting tests again as RMC seem so sure this is what my issue is. I am slightly hoping it is as well as I dont know what will be next on Dr S's plan for me as I tried GSCF as well and it didn't work. I still havent decided if I will be returning to him yet though. My husband doesn't seem too convinced and says its probably doing me more harm than anything else.

Will maybe try in July's cycle- let's see but not with GCSF. Just pred, HCQ and intralipids. For now, I am off all medication including aspirin. Will start soon with HCQ if I want to try in July so its in my system for at least 5-6 weeks.

I hope everyone is doing well!

Hi @VenusStarr thanks so much for replying. I’m sorry everyone’s been through such a difficult journey as well. Having this lovely supportive community really helps. Thanks for sharing your experience with high DNA fragmentation. I do feel, like you, that supplements and lifestyle changes should improve this without the need for further testing. Sorry your DH is poorly, I hope he feels better real soon and his operation goes smoothly.

I needed a break from IVF as well because it pretty much took over my life all of last year, physically and emotionally. I’m leaning towards superovulation as we haven’t done this before and my cycles are regular, will see what Dr S says. If he suggests IVF then it might be something I’ll look into doing in the autumn I think. I hope I can get started on superovulation before that though! IVF just didn’t work for us at all (2 didn’t stick and 2 chemicals, all untested) and we’re getting conflicting information/advice on embryo testing. My doctor at King’s says it’s not needed whereas the doctor at CRGH said it’s a must at my age. But I also have seen women go through failed transfers of tested embryos so it’s really difficult.

I‘m so sorry about your losses. I understand the pessimism after so many attempts, but as naive as it sounds I believe that perseverance and determination wins in the end. I’m always seeing success stories either after years of infertility or multiple losses so there’s always reason to hope xx

@Newbeginnings22023 ❤️ I think that's why I keep going. The hope that one day it will work out in the end. You're right, it does seem to happen. It's just such a slog to go through.

Dr S was clear for us on not pgta testing embryos and said to save our money. That's not to say he wouldn't support if people want to do it, but in my case he didn't see the need. Which is nice I guess as I'm nearly 40 and constantly hearing that over 35 it's game over. We didn't pgta test and my last ivf cycle on full immunes was another mmc of a healthy girl, which feels really unfair but there's clearly more to it than transferring a healthy embryo.

He suggested superovulation for us. I had 2 disaster rounds where my ovulation was delayed and had lining issues. Think we cracked it last time we tried. Everything was textbook but no bfp but it gave me a bit of hope that it could work out.

Thanks for the well wishes for dh 🙂

@comingsoon786110 a holiday sounds lovely. You've just reminded me I still owe dh too! I'd booked a night away and a Michelin restaurant but he didn't feel up to it.

I hope Prof Regan can help give you some direction. Me and dh have a joke now about wasting more money at the clinic 🙃 but if we don't try I'd always wonder what if? X

@VenusStarr that's interesting, and also reassuring, that he said pgta testing isn't necessary. I suspect (and hope) he'll say the same to us - I always worry about testing especially when not producing a large number of embryos, the risk is just too high. A colleague of mine did IVF at age 44 (untested embryos) and had a child, and was successful around 2 years after from that same cycle. This gives me hope that age isn't the only factor at play, which I guess is why we're all doing all these tests and procedures to try to eliminate anything else.

So sorry that you've learnt that it was a healthy girl. This just further proves that testing adds more costs and isn't entirely necessary. It is really unfair but I feel we get closer each time we try.

Hope you can get back to superovulation asap once your DH has recovered from his op. Dr S has an excellent track record so it's always reassuring to know that we're under his care. My consultant at the CRGH was terrible after my last natural chemical, she basically said 'don't try again! Your husband should wear a condom! Your only solution is IVF', just terrible. Needless to say I'm never seeing her again.

Hey everyone, hope you are all enjoying some sunshine this weekend.

I'm freaking out a little as I've had some blood results back that show my kidney function has gone from 79 (November 2022 test done at CRP) to 63 (May 2023 test done at GPs). My GP called me and basically said I'm nearing numbers that would indicate kidney disease and have advised I reconsider all the drugs I am taking. My GP was quite insensitive and told me maybe I should take a break anyway and things might happen for us when I'm more relaxed... which really upset me!

I'm very worried now that I've messed myself up with all these meds. Plus I've also been taking supplements based on ISWTE.

Has anyone else on the complex plan found their kidney function has deteriorated? And so fast? I haven't heard from CRP so they clearly haven't looked at my latest results, or even my last results jn Feb, as I think if they had it would have been flagged then!

I'm in such a tIzz now on what I should do. I don't want to end up destroying my health in the quest for having another baby when I have a little boy who needs me. But equally I really don't know how I'd move on from this hellish chapter in my life without some kind of positive outcome. It's hard to know when to give up.

So yes, anyone else have their kidney levels mess up? X

I've never heard anything about effects on kidneys, sorry @HopefulH. How long have you been on the complex plan?

I had a great mtg with Kings after 4th failed FET. A lovely, thorough doctor who seemed genuinely baffled and had been back through 2 yrs of scans to take a second look. She said they'd expect 90% of ppl to be pregnant by this point (I've 4 x FET with euploids, plus Dr S's pred + intralipids).

Alas the solutions were tentative:

• take vaginal probiotics to improve endometrial biome (cheap/easy so a no-brainer)
• switch to a non-medicated FET (but not sure the difference between medicated and non-medicated is significant?)
• potentially I have a very mild adenomyosis so could do a "long cycle"
• have a thrombophilia scan (but I think Dr S would have done that)

So no real breakthroughs here though i'll see Dr S on Weds to plan the 5th and final cycle. I'd like to spend summer sorting my head and trying to draw that final line in the sand, so normal life can resume!

How is everyone else getting on?

I finally had my hysterscopy and biopsy today at St Marys. It wasn't Prof Regan performing it though, it was someone from her team.

No adhesions, scarring, polyps etc found at all. No sign of Ashermans either. She said the biopsy results will come back in about 6 weeks so I have to wait for that. That's to see if i have any inflammation or anything like that. She also said there was no issues with the shape of my uterus as they suspected there was so nothing had to be done in that sense.

I am grateful all was normal but at the same time I am gutted nothing cause for concern was found because now it just means its the NK cells causing the miscarriages and I am already on the complex plan and still miscarried 2 more times so not sure what else can be done. I don't want to keep doing the same treatment month after month because clearly it doesn't work for me. So lost as to what to do now! Months keep flying by and I still have no baby news. Started the year pregnant in Jan and thought I would have my baby in 2023. At this rate dont even think I will have one in 2024 neither 😞😞

Hi all , I've been lurking on here whilst waiting for my results. Still got 2 weeks till my apppintment however I have had results via email. Can anyone advise me if you have ANA positive, high NK killer cells (I think) whether you had to wait to take meds for so long before trying or if you can just start straight away with meds. We've slipped a few times on holiday and had unprotected sex and forgot we were meant to not be trying. I don't think I'm near ovulation but now I've had my results im worried! I guess if I do fall pregnant at least they can try and help from then now they have my results.

Best wishes!

Glad to hear @comingsoon786110 that you have had clear results but yea I can appreciate it’s also frustrating.
Would you ever consider getting a second opinion from a different fertility consultant? Not sure if it will help but they might suggest something else.
It’s hard when you tally up the time, I was thinking the other day about my losses and when they would have arrived. It’s sucks. Especially when surrounded my friends sending their kids to school and I’m still trying to get pregnant! The only thing that I find helps ground me is that I do hope one day I will have a family and so I try to encourage myself to get out there and do things that I can without kids, make the most of my time etc.
Having said that my friends are talking about a girls weekend away in Europe this summer and I start my next medicated round of FET this coming weekend, and I’m worried about committing to travelling if i feel rough or just generally anxious about miscarriages. Has anyone travelled during a first trimester whilst going through treatment? It’s annoying how much it can interrupt your life.

@HopefulH sorry to hear about the kidney news. I’ve never heard of this before. It’s good your GP flagged it but yea sounds like they were a bit insensitive. Also how do they know it’s definitely those meds that caused it. Do you have a follow up with them? Or is there anyone else you can see?

@Privatemedical246 welcome and sorry to hear about your results - I have exactly the same. I am not on a Dr shehata protocol. I am doing IVF and immunes at a different clinic however I would think you wouldn’t have to worry and as you say you can contact your clinic if you did get pregnant naturally to get the immune support you might need.

@Ems123456789 i know the feeling!! My first loss would have been turning 1 this September. I am considering going to a different specialist and maybe getting more extensive testing. It never hurts. I did have them run all my TEG blood tests again yesterday as I have been off aspirin for a few months now. Let's see what happens with that.

I travelled in the first trimester with my first pregnancy, I was 11ish weeks. I would not recommend it at all. I had not a spot or morning sickness here but abroad was a different story. I was throwing up, nauseous, diarrhoea (tmi sorry). When i came back, I miscarried 3 days later at 14 weeks. Endless people told me it was due to flying and was too risky but obviously they didn't know about the NK cells. It makes me wonder how did i get so far with this condition in my first pregnancy but I cant even get past 5 weeks in my subsequent ones?

I had just started HCQ just before i went off to Thailand last November but stopped it immediately after taking 3 days worth. I had such a bad stomach and even had a few accidents which I am not proud of! I decided i was not going to let it ruin my mood and holiday as I would have been island hopping and not always near a loo so i restarted the treatment after i got back. Moral of the story- I don't think its a good idea in my opinion. Hope you can figure out what to do though xx

@comingsoon786110 that sounds like a good idea. I recently got a second opinion with a much better doctor and it just really helped get another perspective.

thanks for sharing your travelling stories, you are so right. I’ve only ever got as far as 7.5 weeks and I also had an ectopic once which I found out about 5 days before my honeymoon! Thank god I hadn’t got on a plane because I ended up in hospital throwing up.

my friend said to me the other day not to worry about travelling because she didn’t feel that bad in her first trimester but that’s someone who has got pregnant easily and carried 2 pregnancies with no problems. I think when you have experienced complications and have immune protocols too it adds an extra layer of anxiety and feeling rough.

I think I just needed to speak to some like minded women about this because I don’t think my other friends understand just how gruelling this first stage can be when you are going through infertility. Appreciate your response 😊

@comingsoon786110I'm so sorry. Your experience sounds a bit like mine, my first loss would also be turning 1 this September and since then (discovered at 12 wk scan) I've only got to 5 weeks (3 more times). I have only just started on Dr S's plan though and yet to have steroids and intralipid treatment. I follow someone on instagram called wildridefertility who went to Dr Gorgy for further tests after having a loss on Dr S's plan (with PGT embryo) and it turned out she had other issues like low NK uterine cells (though high peripheral NK cells) and low LADs. Obviously that is just one person and it's hugely expensive to have more tests, but in her case it worked out as she had a baby.
Sending love to everyone x

Does anybody what Dr S advised to do next if the complex plan and GCSF doesn't work?

I am trying to explore my options now that the hysterscopy was clear and I don't want to return to the same plan as I know it doesn't work for me. I definitely know I cannot afford IVIG so will not be going forward with that but is there any other medication he adds that anyone is aware of?

I am considering getting another opinion but I literally feel so lost and have never felt like this my whole journey. I feel as though a part of me has lost hope of ever becoming a mum. I have had all tests and treatments apart from karotyping which I will be looking into but i think its a lost cause as well.

What would you all recommend?

Hi everyone.its been a weird couple weeks and my plans with fertility steps may have changed so not sure if I'm coming or going right now. Will explain bit first will try to respond to a few of the messages above. Sorry if I miss anything. I'm skimming quickly.

@VenusStarr I hope you're okay after all those pregnancy announcements and feeling all the negative feelings. Glad your tubes are clear and hopefully it's had a therapeutic effect on your body.
Why does Dr S not promote PGTA???

@Lily1990 jessy (wildridefertility) is a friend of mine. We met on baby centre years ago because of this journey amd became friends. Dr Gorgy is one of the more thorough RIs in the UK. He was trained by Alan Beer. I like him. I saw Dr S on the NHS so far less rigorous testing but even his private clinic doesn't do what Dr Gorgy's does so it may be worth exploring. Obviously doesn't work for everyone. I have a similar profile. Low LADs, low unk cells and high peripheral nk cells and high cytokines. Check out the RI group on fb if you can. Really helpful.

@HopefulH sorry to hear about your kidneys. Is this totally new or has it ever been off before? I had ohss at the end of 2020 after my last egg collection amd for the whole of 2021, my kidney function was off. Could it be ivf related? I basically started drinking 2 or more litres water daily and I think its helped. My kidney func is normal now.

@Newbeginnings22023 sorry to hear about your experience. I'm at crgh too..can't believe your consultant said that. So unhelpful!!! Who was it!? I would provide feedback and say u weren't happy with that comment so she doesn't do it to anyone else.

Right. My update. Basically I've been involved in the UK surrogacy community since last year, making connections etc..anyone a surrogate I became friends with (but who lives too far away) recommended me to her friend who is another experienced surrogate looking to do another journey. So I've just been chatting to her and building a friendship but she seems keen.... So my initial plan was to do another fet on the next cycle with the tweaks Dr Gorgy suggested a d adding in oestrogen. I even did LIT again as my LADS had dropped. But now I think I'm going to move over to lister to do an egg collection instead of FET to make more embryos because if we actually go down the surrogacy route, we'd use one of our existing embryos but we only have 2 tested and 1 thay didn't give a result so id rather have some more. It's literally all up in the air right now. No idea where this is going to go! I've started the process with lister so going amh testing tomo there and hubby did his semen analysis there today. Consultation next week with current clinic and another with new clinic. Whewww. Xx

Hi @Danni8 thanks for your message. I was with Dr Seshadri at the CRGH who I really liked initially and she had agreed to do timed intercourse/superovulation for us first before doing IVF. She completely changed her tone after my last natural chemical, I really felt horrible afterwards. Never has a fertility doctor ever advised me to stop trying or use protection, and in an aggressive way too! You’re right though, I should pass on that feedback. I’m still really hurt by her reaction although it’s been a few months now.

My update with Dr S is that my NK cells were fine but the TNF Alpha was high so he’s putting me on humira injections initially, see how it goes.

Good luck with your next steps, looks like you have a solid plan ahead xx

Omg @Newbeginnings22023 that's my consultant!!! Hahaha. Gosh I'm sorry you had that experience.
I absolutely love her and think she is so kind and sweet but I actually think the only downside is that she gets very emotionally involved. Which is so sweet on one hand because I feel like she will do a lot to help her patients BUT she can be quick to suggest alternative options. I had a similar experience.
So I came to crgh after so many miscarriages to do pgta testing because of my hubby's dna fragmentation and the miscarriages. First cycle was poor. Got loads of eggs but after day 3, the embryos reduced a lot in number amd we only got 1 pgs normal embryo (our 2nd cycle went so much better as she tweaked a few things) which we transferred in September 2020 WITH NO IMMUNE MEDS cos of covid amd ended in a chemical. So at our WTF appointment, she was like, if the next transfer doesn't go well, you need to consider surrogacy. Which was NOT okay at the time because it was way too soon and there were so many things we hadn't tried yet. It was a little traumatic tbh.

I feel like for big decisions like moving on to the next stage of Fertility treatment needs to come from the patient. I only looked into surrogacy at the start of 2022 when I felt like I had been doing a lot and was still miscarrying and even though we might do it now, I still haven't given up on my body. I'm just switching my focus for now.
Anyway that's lots of rambling but you're not alone there. Also glad to hear that she didn't just jump the gun with me! Defo feedback and just say how that made u feel. I probably should've done the same tbh. And maybe still will. Xx

@Danni8 wow indeed, what are the odds? Lol. I also went to CRGH after several miscarriages.
Completely agree with you that big decisions like these should a) come from the patient but also b) should be delivered in a very sensitive manner. Patients in our position are in such a delicate, vulnerable state so those comments are really unhelpful.

To suggest surrogacy to you is surprising after your initial attempts but also because you mentioned poor fragmentation on your husband’s side. I’m in the same boat and the advice was always PIMSI or the like if we decide to do IVF again.

I’m so sick of doctors saying things like this and then end up being wrong. For example a friend of mine was told she would only find success using donor eggs, then she conceived naturally a few months later! Dr Seshadri suggests something absurd such as using condoms, but on what basis? IVF isn’t the only solution and it doesn’t work for every single patient/couple so I didn’t like the pushiness.

Sorry for the silly question because you’ve already tried lots of things, but are you undergoing immune treatment now for your next attempt? I have a friend who’s with Lister but because she’s single she did a donor embryo cycle and so far it’s successful.

Really sorry for your experience with her too! The things we have to go through! Xx

Hi everyone. Sorry for being quiet. Dh had his operation last week and was quite poorly so had to stay in. He's on the mend now but it's slow progress. We've also been dealing with a rat problem in the garden 😫 we've had pest control out and seen some little bodies. Just keep thinking about the parents losing their babies 😭 so that's been emotional.

We were due to do superovulation as my period was due on Thursday but its arrived today 😕 meaning my cycle was only 22 days. Its come on very suddenly and very heavily. So no superovulation this cycle now. Dh isn't supposed to have sex for 2 weeks and it would be cutting it fine to squeeze it all in. Hopefully another month will help. So no news from me.

Going to try and catch up with everyone's updates.

@Newbeginnings22023 I'm so sorry the consultant said that 😡 have you done your first humira injection? Will you have any other meds / a protocol to follow as well?

@comingsoon786110 glad your hysteroscopy was clear, but I understand the frustration of not finding a cause or something that could explain things. Did you see Dr S for a review after your recent loss? I think he also uses Tacrolimus but I don't know much about it. Hope you're OK.

Hi @Lily1990 how are you getting on?

@HopefulH I'm sorry you've got kidney issues. What have the clinic said? I've not had anything show on my bloods but I know kidney and liver issues need to be identified quickly. Sending a hug, it's so crap.

@nottsgdns how did you get on with Dr S last week? Hope you're feeling positive about your next steps.

@Privatemedical246 I have positive ana and overactive nk cells. I initially started on hydroxy and I was able to ttc straight away, just needed a loading dose. I've been on ovulation intralipids from the start too but added pred now but we've been able to ttc without delay. When is your appointment? I found results overwhelming and was a bit upset after but also relieved there is actually a problem and a possibility of a fix.

@Danni8 big update, lots going on for you. How do you feel about another collection? Will you pgta test? Dr S just said because my amh is so low and we dont get many (well, no blasts last cycle! 3 in the first one), plus 2 tested healthy losses, he didnt think it would be a good use of our money. I said to dh today after my period started, im resigned now to one more round of ivf and then we'll likely stop trying and live childfree. Its great that you have a potential surrogate and are exploring your options.

@star2022 how are you getting on, been thinking if you this cycle.

This is an epic message. Love to all ❤️❤️

@VenusStarr sorry to hear about your husband and also the fact you've got to wait for your next superovulaton attempt. I'm frustrated just waiting for my apppintment which is next weds. I recieved some results via email and from what I understand I have postive ANA, raised NK cells and then also raised TH1/TH2 cykotones but obviously not an expert just based on the ranges provided and scrolling through these convos. Thanks for letting me know younwere able to start straight away. I'm finding it frustrating that we've missed 2 cycles but I know it's best to wait and know what I'm dealing with to be treated. Wishing you all the best Xx

Hi @VenusStarr sorry your DH was poorly after the op, hope he’s feeling better now. I know what you mean about natural cycles and the timings not working out, it’s hard when the timings aren’t within your control. Hopefully next month will be ok.

I haven’t had the first injection yet because I need to rule out TB first - I tested positive for TB when doing his blood tests but that’s almost certainly because I had the BCG vaccine when I was little, as I lived abroad as a child. But as a precaution I need to get a chest exam to make sure things are ok then I’m good to take the injection. An annoying added hurdle! I’m seeing the doctor next Friday (23rd) then I can proceed afterwards.

So all being well it’s the first injection, then a second injection 2 weeks later, then seeing Dr S after the blood results to ensure the levels have gone down. He suggested IVF with ICSI due to DH’s poor fragmentation, but said I can do superovulation first if I prefer. So he’s put me on the complex programme which includes predisolone, cyclogest and intralipids. Haven’t digested the full plan yet as I’ve got a few steps to digest beforehand 🤦🏻‍♀️

Really sorry about the rat problem :( glad it’s been sorted albeit being emotional xx

Just a little update from me, chest exam all clear but the doctor is advising against humira as a precaution, so I’ll have to contact Dr S and see if he’s got an alternative plan. To be honest I’m put off humira already because of all this!

@Newbeginnings22023 glad your chest is clear, may I ask why the doctor advised against it. Because of the risks? I am weighing up if its short term use it should be okay!

Hi @Privatemedical246 thank you, relieved doesn’t begin to cut it!

The reason is very unique to me because I’ve had the BCG vaccine which is causing my TB blood test to be positive. One of the side effects of humira is that it can reactivate TB, and although I don’t have TB I worry that the vaccine, which is causing a positive test, may mean that I’ll react badly to the injections. To be fair Dr S wanted me to get checked out for this reason, before taking the injections because he obviously had concerns too. I’ll need to go back to him and see what he says now that I’ve been seen. If you don’t have any risk factors then I’d say be well informed on the possible side effects, ask those who have been on it for their experiences, and make up your own mind about it xx

@Newbeginnings22023 many thanks. That's interesting as I had the bcg when I was a young teen but the blood test to check for TB was okay I believe. I'll find out more next week hopefully. I hope Dr S has another plan for you. All the best x

That is interesting! Both doctors have now said it’s likely the vaccine, how odd! I’ve repeated the test though and waiting for the results next week as the NHS doctor said it could be a lab error, let’s see! He did say I’m a peculiar case because I have no symptoms and chest is fine thankfully. If your blood test is ok then Dr S would likely offer it to you. Thank you for your wishes xx