Immune/NK cells pred thread #31

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!

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 😞😞

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?

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

@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.

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

@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!

Hello everyone,
I hope you don’t mind me joining this thread. I’ve read the past threads with interest, and they’ve been so helpful.
I have a 7 year old daughter and ever since everything’s been going downhill. An MMC (natural) followed by 2 IVF chemical pregnancies and another chemical in March. Tests showed I have APS (a blood clotting disorder) and the Clexane and aspirin didn’t help in the last 3 cases. I’m due a follow up with Dr S on Monday to see if these are immune related, have already done all the bloods so will see the results.
My husband has poor DNA frag but we haven’t retested since he’s taken supplements so I don’t know if it’s worth doing that, I know he has a varicocele but I don’t want to ask him to do surgery (he’s also a doctor and current NICE guidelines state it’s unnecessary for fertility). The reality is it could be a combo of suboptimal sperm (although his count and other parameters are fine) and maybe immune issues. We’ll see. I should also say I’m 40 going on 41, and my husband is 50.
Thank you for sharing your experiences so openly, they’ve really helped me cope thus far.

@RJayne ahh sorry, wasn’t sure if I understood properly! I don’t have experience of that but if it is a genetic issue, might be worth asking whether IVF with PGT would be recommended? Wishing you the best of luck x

Thank you @Lily1990, it‘s our review appointment following the baby being tested. Sorry I wasn’t sure how to word it! So hopefully tomorrow will tell us if it was genetic or my body again…

Not too sure how I feel about it and want to make sure I get the best out of our time with Dr S! x

@VenusStarr sending you a big hug. I’m sorry things are so tough atm, pregnancy announcements are the worst. Maybe delete your social media for a while or at least unfollow those who announced (if you haven’t already). I hope things get easier between you and your DH and you don’t miss your window, as I know how incredibly frustrating that can be. Your cycles are nice and short compared to mine, I’m on CD 21 and only just noticed ewcm today! (Although not TTC this month.) Thank you for your message about my Dr S appointment last week too, really appreciate your support xx

@RJayne love that quote! I’m so sorry about your fourth miscarriage. Is this appointment about management of the miscarriage, ie whether MVA, pills or waiting? For me I wanted to know when the soonest date I could have the procedure was, as that impacted my decision for what option to go for (as wanted it sorted asap). I also asked about pain and infection likelihood of various options. In the end decided to have the procedure under general anaesthetic as I could have that sooner than MVA with local. Sending love and strength to you xx

Hi all,

I saw this quote earlier this week and thought it was worth sharing… “You were only born with 2 arms. Stop trying to hold it altogether. Drop some shit. Have a cry. Use both hands to give people the middle finger!”

I’m looking for some advice, I have my MVA review appointment on Wednesday following our fourth miscarriage and wondered if anybody’s had a similar experience, could suggest any questions we should ask? This will be our second MVA review but remember the first being quite overwhelming and leaving without really taking things in / asking anything before agreeing to a new medication.

Thank you! x

@VenusStarr I'm so glad it all went well! And I'm glad its given you a boost to try that little bit longer! This journey is so crazy isn't it, one day you just feel like giving up but then you randomly have days where you feel hopeful again. Ah thats cute about your nan, I'm sure she is looking after them all ♥️

@HopefulH I'm sorry your cycle didn't work again and that you're not in a good place mentally. Are your follicles not growing with the letrozole? Is there not something else they can try you on? I definitely can relate to the looking old part, I feel sad when I look in the mirror because all I see is dry brittle hair that falls out ( I used to have such lovely thick glossy hair!) and now also have bags under my eyes, spotty face and just look and feel older in general. Also have added weight because of the hormones too even though I really try and stay active. It's just so rubbish as you just want to go back to your usual self before all this :( and like you said you don't mind going through it all if you know it will work 😒

No updates from me, just on my last day of letrozole today, I have my scan booked in for friday CD10. I usually have it on day 9 but the clinic is closed for some reason? And then I asked for a scan on wednesday day 8, but that was fully booked! So i've had to risk it and just do day 10 - really hope I don't ovulate by then. Its also with Mr Jan for some reason - anyone had him before for a scan? He did my hysteroscopy so wasn't expecting him to be doing my scans too as I usually have Dr Edge.

Hi everyone, sorry for my radio silence. I got myself in a not very good place mentally and had to take a break from everything.

I've just had a disastrous cycle where my body did not respond at all to high dose letrozole - so I've been forced to take a break - which I don't think is a bad thing now I've gotten over the disappointment of it all but it was a real blow...

@VenusStarr that's great news that both tubes were clear! I hope all goes well timing wise so you can fit in a try around your husbands surgery.

@Ifitistobesaid congratulations on your little girl - that's wonderful news and sounds like you've been on such a difficult journey to get there.

@star2022 I don't think I'd dare ask a clairvoyant just incase it wasn't what I wanted to hear. My Mum is spiritual and she had this vision years ago when we were struggling to get pregnant - of two children - a more serious older boy and a lively wild little girl... I've since found it really difficult because we went on to have a little boy (in the end) but now I feel so upset we have lost our babies as it feels I've lost this little girl!

Does anyone else here feel they are looking very old very fast from taking all the drugs and messing with their hormones? I look at myself now and I just feel I look so old and I've even noticed my skin has changed and looks older on my body. Worried I'm peri-menopausal and that's why my body isn't responding well to the drugs and I'm aging more quickly! But Ms Edge assured me I'm still fertile and my body is still working. It's so hard to keep the hope!

Hoping everyone else is okay and are enjoying some of this sunshine! X

@VenusStarr I think it was a combination of things that made me high risk for preeclampsia. Age, IVF, and some markers that were seen on the 12 week scan.

Hi everyone, I hope people find this hopeful rather than upsetting but I wanted to share that I had my daughter last week after being on Dr Shehata’s protocol.

We started trying over 5 years ago and suffered both infertility and recurrent miscarriages. For a long time I thought it was my age as I was in my mid-thirties when I started trying but when we tested my second loss and it was chromosomally normal I knew something else was going on. My diagnosis from Dr S was PCOS, highly activated NK cells and high TNF alpha. For my successful pregnancy we did IVF with PGTA with Create St Paul’s and from Dr S I was on humira, prednisolone, metformin, hydroxychloriquin, fragmin, intralipids, inofolic alpha, aspirin, omega 3, progesterone. I also did acupuncture and took ubuiqional for the IVF cycles and my husband took impryl but I don’t think he took it very regularly. I also have adenomyosis but we didn’t do anything specific to treat it.

The embryo that became my daughter was made just before I turned 39 and I gave birth at 40.

The pregnancy was smooth until 36 weeks (aside from bleeding from a subchorionic haematoma in the 1st tri) when I started to develop preeclampsia and gave birth just before 38 weeks. Professor Aloekar at CRP had warned me at 12 weeks that I was at risk of PE and told me to stay on aspirin until 36 weeks. I am very grateful for that as has I not been on aspirin the PE could have occurred earlier in the pregnancy. Also a note for any IVF patients that a medicated FET carries a greater risk of PE - had I known that I would have pursued a natural FET.

Wishing everyone on this thread the very best.

Omg @VenusStarr sorry I thought yours was next Friday!! Good luck 🤞 hope it goes well and hope this is what works for you ♥️ so glad you can squeeze in a superovulation cycle this month!

@nottsgdns so sorry about the bfn! Sending you love x

it’s so interesting about the clairvoyants isn’t it? So the reason I ask is, I’ve had about 3 readings from 3 different people and they’ve all been so so accurate. One of them picked up on the fact that we are struggling to conceive and that we will get pregnant but need treatment to do so. The other lady told me March-May this year is significant for me and based on that will determine a success and the window of opportunity will be open (this one was weird as I did find the polyp in march and got it removed in April). And yesterday my husband did a reading, this lady was super accurate about everything (eg work, our marriage, family) and went on to say that we’re longing for a family and to just hold on a bit longer because she sees success very soon (and was 100% confident of this) and she knew we had a loss and that my nan is looking after our little soul 😢 (she passed away few years ago) I was in tears. I mean, I’m taking it all with a pinch of salt but it’s given me a bit of hope to hold on to when we were both at our lowest points last week 🤍 happy to pass on details if anyone wants to try it.

Not clairvoyants but I did rate acupuncture (are they in the same category of things?) and thought i could feel something going on, like an unblocking of blood/energy and some strange tweaking/pinging sensations. They said I had a "cold womb" which was charming but it did also feel therapeutic just to have someone look after my body for a bit and make some attempt to find the nub of the issue.

I'm on FET number 4 at 10dp5dt and coming out of a 5-day unhinged splurge of preg testing and sobs inbetween meetings. I think I have now internalised the BFN! Weighing up how to make the most of a final FET and how to ask for as much meds as possible as it's definitely the last one. Any advice on what to add in once you've tried the pred + intralipids?