Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

@MyEasterEggs do you mind me asking which clinic your with? Is it Dr Gorgy or have I totally made that up? My epu have been brilliant through all of mine so I know scans won't be an issue in a future pregnancy x

@FfayeN I had IVF with The Evewell and went to Dr Gorgy for advice on immunes. I’ve subsequently moved my treatment to him as he’s more knowledgeable and been way more supportive.

@MyEasterEggs thank you: I think I need a few more days researching what route to take. It's so hard when you want answers ASAP but there's such conflicting information xx

@FfayeN when I was deciding on a clinic I had a few consultations. Decided to go with The Evewell for everything then later went to Dr Gorgy when their immune protocol didn’t match my expectations. Clinically I can’t fault The Evewell - I had a successful ICSI IVF round and FET went smoothly - but I’ve found Dr Gorgy to be the best choice for me for recurrent miscarriage care because he’s responsive, flexible and understanding.

@MyEasterEggs that's really helpful thank you. So presumably the Evewell were happy to work alongside what Dr Gorgy recommended? Did the Evewell then prescribe based on his plan or was the immune protocol seperate to your IVF as such?
I know the IVF clinic we would use (if we needed that down the line) do intralipids and prednisolone but not sure how they decide who needs it as they don't actually do immunology testing! It's all such a minefield xx

@FfayeN some clinics will offer treatment without testing based on history. I’d personally prefer the testing.

The Evewell will work alongside Gorgy or Shehata but I didn’t plan on taking this approach. I’ve just found the care post FET to be poor. So I got in touch with Gorgy for a follow up and asked him to review my treatment plan and we adjusted. I didn’t involve the clinic in that conversation at all.

If there’s a clinic you would prefer to use for IVF then I’d personally consult with Dr S or Dr G and do the immune testing with one of them. Then you could potentially have all treatment with your clinic based on results?

@MyEasterEggs oh wow, that's really good of him! Had you seen him prior to your treatment at the Evewell?
Yes I think we may go down that route and hope our clinic would support their proposals, if there was the need for any. To be honest I've not heard of anyone coming away with zero treatment though anyway! Thanks so much for taking the time to reply 🥰

@FfayeN my ivf clinic, care fertility, were happy for me to follow Dr S treatment plan while doing ivf.

@Sophi81 how did the scan go?

I did my letrazole round trigger last Tuesday and test day is officially Friday (which is early I know), but CRP go early). Just did a test (nice dark wee) and it is negative. I know I'm not out yet, but I'm feeling quite down. Just had enough really as had three follicles again.

So they found a heartbeat on the scan but just like every scan I got another BUT 😩

Dr edge said I should be 6 weeks 5 days according to what their systems calculate but baby is measuring only 6 weeks. She said could mean 2 things! One - the system calculates for person on 28 day cycle so if u ovulate on day 15 which I don't! I believe I ovulated between day 19-20! Two - could be a problem with the baby not developing properly. So we have been called to be scanned again next week instead of 2 weeks to see if there's any growth. Hopefully it will be the the ovulation dates are inaccurate fingers crossed 🤞🏼

@Sophi81 if you ovulate later then it all sounds on track. I'd cling onto that. I really don't think you need to be worrying, although of course we all would too! When I saw her with an ivf pregnancy that was measuring behind (and eventually ended) she said something about how for a natural pregnancy it wouldn't be a big worry due to the whole ovulation not being set thing. I'm glad you only have to wait a week. There's always a wait though isn't there!

@seven201 aww thank you x. I'm sorry to hear yours did not progress in the end 😞. It's so hard what we all are going through and the lengths we have to go through makes it so stressful.
That's all I can hold on to for now. Yes lol this one week is going to take forever to arrive. I already felt like that about this scan! I thought this day was never going to come.

@seven201 thank you 😊. Don't be disheartened, you've tested 2 days early and not FMU, you still have time, at best you're 7 dpo so plenty of time for it to become positive!

@Sophi81 they work out dates based on the first day of your last period so if you ovulate late that puts you bang on for dates, I hope your scan next week measures another 7 days to what you are now 🙏🏼. Xx

@FfayeN aww thank you x

Hello.

I've been stalking this thread for some time. I'm under the care of Dr. Shehata after three early miscarriages. Two natural, one MMC. I've never seen a heartbeat on the scan.

After a year off to recover from 3 miscarriages in 6 months (I was quite traumatised), I've just started trying again and have (unbelievably) fallen pregnant the first month of trying.

I am on the complex plan, plus I took Humira before trying for high TNF-alpha.

My first scan is on 6th December and I am struggling to get through each day. I don't know whether to be positive, or realistic.

@Sophi81 I have been reading your recent posts and I completely relate - It feels like time is slowing down waiting for the scan.

Thank you for reading...

@Welshlady89 so sorry to hear about your previous losses, but also congrats on this new pregnancy! Your journey sounds quite similar to mine, I’ve had 3 losses in 7 months. And just about to commence the complex plan after the Humira dose is done.

Totally can imagine that each day would be a struggle to be positive, but at least you know today you are pregnant and this time you’re on treatment to hopefully support. All the best for your first scan!

@Maxime34 - I’ve now also had my first Intralipid which I found fine! No side effects at all! Hope yours goes well too

How are you feeling now @Sophi81 ? The wait between scans can feel torturously long. Hopefully there's been some good growth by your next scan. Scans can be really inaccurate so early, even a mm can make such a difference in the gestation they estimate, so please try not to worry too much, although I know it's easier said than done.

I had another anomaly/growth scan yesterday. Baby was measuring small but a slightly higher centile than my last scan, so they still want to continue regular growth scans. The anatomy looks normal except for an echogenic bowel, which can be caused by a number of things including bleeding during pregnancy (the baby swallows some of the blood which shows up brightly on the ultrasound) which is not serious, up to more serious conditions. They've run blood tests to rule out cystic fibrosis and also done a TORCH screen. I did have bleeding earlier in the pregnancy so hopefully that's all it is 🙏

@Sezmarelda1 That’s a good sign that the baby is in a higher centile. What week are you in now? How long of a gap do you have until the next scan?

I'm 22 weeks along now @Ifitistobesaid . I've got a doppler scan at 23 weeks to check blood flow (as I have a history of pre-eclampsia) and then another growth scan at 25 weeks.

Glad things are looking more positive for you @Sezmarelda1 and that you haven’t had to go through amnio 💛

@FfayeN Sorry for my delay to reply to you. I’ve not been in a great place.

Endometritis - I sent a period blood sample off to a fertility clinic called Serum in Athens. The test is supposed to be as accurate as having a biopsy, to determine microbiome of the uterus. My first result came back as having very high gardnerella, which doxy doesn’t work for apparently, so I was prescribed a cocktail of antibiotics and advised to take some good probiotics. I then had a second sample tested via biopsy in the summer when I had a hysteroscopy with them, and my results came back 97% good bacteria and all was clear. At the time I thought this would solve our problems, and I fell pregnant shortly afterwards on a letrozole cycle but another mmc at 9 weeks 😞.

I saw Dr Shehata for the first time this week. I thought it would help me feel a little better, and that there might be hope, but instead I just panicked and have completely fallen apart! Did anyone else feel hopeless in this journey, but are now pregnant on an immune protocol? Or did everyone else always have hope?

Dr Shehata also questioned if my AMH was ‘really that low’? Which has sent my mind into turmoil again about running out of time. I get all my results back in 3 weeks and I’m just dreading it!

Thanks for listening.

It’s so encouraging to hear how everyone is getting on. My thoughts go out to everyone that is is still trying to get pregnant, but also to those who are pregnant, because none of this is easy! Xx

@HopefulH I'm so sorry to hear you've not been feeling great. I totally get where you're coming from. Thanks for taking the time to reply too, it's really useful.
I took the Doxy for mine, hoping that would solve the issue and obviously it isn't just that, as I too MC again.
I have a consult with Prof Brosens to what he suggests as whilst I could afford the initial tests I just couldn't afford the onward care with Dr S. The whole thing is completely overwhelming, just know you are not alone in feeling that. It's hard to pick yourself up and have hope in the next thing you choose to do because there's just no guidance for those of us navigating repeated miscarriages. I have however read amazing things about Dr S.
Don't worry too much about AMH, if you're still falling pregnant you're still producing eggs! A follicle count would be more accurate and AMH can change month to month. (Mine was 0.36 a year ago...if that makes you feel any better!). Did he jus treat your immune or everything else aswell?
I feel sure once you get your results and have a plan you will feel more secure in your decision and have something to work towards 🥰 xx

@HopefulH I also struggle to have hope. I think for me it’s easier to have few expectations rather than get my hopes up and be even more devastated when it doesn’t work out. I’ve been told that if I don’t have a successful pregnancy with the PGS embryos we have then there is something else wrong. I feel like I should have more hope because of this but I can’t help thinking I may never get to the bottom of any immune issues that I may have and it just won’t work. Hopefully you can get some answers from the tests that may be helpful.

So glad they went well @Annie808 I'm going to be going in for my first lot in a couple weeks so that makes me feel a lot better.

Thanks @FfayeN and @InvisibleDreamer Hope is a difficult one. I clearly have some hope to be bothering with immune tests but I think I struggle to imagine my luck changing now and things working out. It’s been three years of hell and it’s taking it’s toll on me now.

Thats good you have some tested embryos to try with @InvisibleDreamer - as with immune treatment you have lots of hope of having success! I’m worried with my low AMH that my eggs are all such poor quality that that is the real reason we are having recurrent losses (even though Shehata said no to this). We can’t afford ivf as well as immunes. And I’m not even sure with my AMH ivf would work.

@FfayeN My AMH is 1pmol… I know there are different measuring units but I’ve been told this is equivalent to a 43-45 year old and I was 34 when I did the test 😫Last time I fell pregnant it was from my first Letrozole cycle as I’m not sure I’m actually ovulating on my own anymore. Dr Shehata has requested an up to date FSH, LH, E2 and AMH results so I imagine he will probably suggest super ovulation - but I’ll have to do this on NHS as I can’t afford that with him. And I have no idea how we will afford treatment depending what it is. We are just getting credit cards and hoping we can pull something out of our mortgage in March!! I’ve heard good things about Brosens too and we considered trying with him first - but they said all the tests would cost us over 1k and I decided in the end I’d rather spend that straight on Shehata. It’s all very very overwhelming you are right. When do you see Brosens? Xx

@HopefulH I think we may have to go the IVF route so ended up in a bit of a mess last night trawling the IVF threads here looking at what others considered 'low' AMH. However I've just looked and mine was in a different unit. I think it's equivalent 2.57pmol/L. It's a tricky old journey and it's hard to know what to focus on to get our baby. I'm hopefully having a consultation in the next two weeks 🤞🏼.
Will you stay with Dr S for your treatment? Xx