Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

Thats great news @Cream123, the first step is positive..
And that seems to be a good alternative of taking gcsf in small dosage, Mr.S havent mentioned that..will check with him if i cant tolerate..
Good luck for ur transfer on thursday xx

@Cream123 - Sorry didnt refresh the page properly, so missed ur next post.. I m taking cyclogest 400 mg twice a day!!

Hello all, going to see Dr S for 1st time next week, any tips/advice?

Will he use some of test results I’ve had done elsewhere? ( recurrent miscarriage profile etc & husband sperm test) thinking keep the cost down

After miscarriage I struggle to get pregnant last time after 6 months got a hsg and that did the trick within the week... but ended in miscarriage a few months ago... does Dr S do anything re helping you get pregnant as well as the immune side of things?

Hi @summertimehere yes he will definitely consider your previous tests so make sure you take them with you, and/or email them over in advance so he has time to study them before your appointment.
I know he offers 'super ovulation' where you take something and go for a scan so you can control when you ovulate. I can't remember the full details as I didn't go for it, but I can dig them out if you are interested.
Also brace yourself as he has a reputation for not a great bedside manner! But I haven't found him any worse than anyone else I've seen, and in fact he is more sympathetic and cares more than the consultant at the RMC I went to.
And expect to lose a lot of blood! I think they took 12 vials from me.
Any other questions just fire away, and let us know how you get on 🍀

This afternoon I went back to the IVF clinic to talk about having another FET. Instead I'm now wondering whether to just to give up.

Usually DH comes with me but this time he couldn't, and it didn't seem a big deal to me. Perhaps that's the difference, but the doctor was so pushy - trying to push me into having two embryos transferred, trying to push me into having them all defrosted and genetic testing done, before they're refrozen. Trying to push me to think about having a new fresh cycle and the embryos collected then tested before being frozen.

Not once considering what I was trying to say. Whereas when DH is there he listens to him, and actually talks through the options rather than trying to push me into things.

I had to come back to work to make the time up, and now everyone has gone home and I'm on my own I've just dissolved into tears.

I'm at our offices in London until Wednesday, so I won't be seeing DH until Wednesday night. All I want to do is go home, pick up the cat and give her a big cuddle.

@ginandtonicformeplease I'm so sorry to hear that. That absolutely and totally sucks ass. This makes me so angry. Could you consider a different clinic? I went to see a few places to see who I got a good feel for and there were some where I got the feeling I'd be treated that way. Mine have been lovely; I can send you their name if you'd like.

I'm in London if you'd like to give a KittyKat a cuddle?! I'm not really very cuddly but I'll try to keep my claws in x

You poor thing. I really feel for you xx

Thanks @KittyKatSmile I think we're using the same clinic - Zita West. I'd considered them lovely until today, when I just felt that he'd had enough of me pulling his statistics down.

They were actually the only clinic I went to as we both got a really good feeling from them so went with them. I have absolutely no idea how to go about changing clinics when embryos are involved.

I don't even know if I want to change clinics or just give up.

So sorry to hear @ginandtonicformeplease, take your time in making your decisions, it’s ok not to know, you must be feeling so overwhelmed with that pushy info overload and lack of empathy. Can you FaceTime the puddy cat and DH later for a comfort call? You deserve some good rest and sleep tonight my lovely and give yourself a big hug. The answers will come once you’ve processed the information. So sorry you were not listened too, it really leaves you feeling quite out of control! But you are stronger than you feel right now lovely, it’s just a shitty bump in the road and whatever you decide all will be well. Sending hugs and flowers 💐 and @KittyKatSmile you’re so cute offering KittyKat cuddles 😍🤗😺 x

@ginandtonicformeplease shit, that is even more disappointing. Bloody hell. I didn't want to do any of that stuff, mainly because of time, my age and the NK cells and they didn't push it. I don't remember what your stats are or how many times you've tried. Can I ask why you don't want to do what they're suggesting? (I am not saying you should and I think the way they've treated you is horrible, just trying to understand the situation.)

Feeling so sorry for you x

@Sunshineblonde1 Thank god for FaceTime - what did we do before it?!

@KittyKatSmile I really don't want twins, hence being unwilling to transfer two back. If it happened naturally then I'd cope - I'd have to - but it's not something I want to actively risk. One of the doctor's reasons for trying to push transferring two was that it's cheaper than two separate transfers, which makes no sense as two of everything would be bloody expensive! He suggested two last time, but this time he just kept pushing it.

Part of me thinks maybe we should try testing the ones we have, but they don't know how the stress of thawing, being tested, refrozen, then thawing again actually affects the embryos, and it didn't sound like they do it a lot - if they want testing done they usually do it straight after egg collection. Every time they thaw one there's a risk it won't survive.

Starting again with a fresh cycle isn't an option as we just don't have the money for even a cycle let alone a cycle plus genetic testing.

He also went through the various treatment options if it turns out that I'm one of the 10% whose NK cells are resistant to the intralipids. When I tried to ask questions about the options he was so dismissive, but then at the end said there was no one way to proceed and I'd have to decide. I don't know if I have enough information to make that decision though.

I'm aware I'm waffling quite a bit, sorry

@ginandtonicformeplease god, what a massive dilemma...

I would probably do a flow chart. I know what you mean about twins. I was ok about having them if they'd recommended putting two back in but only by asking 'would I prefer twins or no babies' which I realise isn't really the decision!

It would depend for me on how many I had in the freezer and how many FETs I could afford. Could you try once more and then look to do the testing afterwards if it didn't work?

Also, have you looked into Create Fertility? They offer funding packages where you get your money back if you're not successful and you can stay with your clinic (sorry if you know all of this).

I don't know what to suggest about switching clinics. Somewhere like ARGC might get good results but they will be far more prescriptive than ZW I'd imagine. The Lister are meant to be a good balance of successful and nice....

Sorry for my waffle

@ginandtonicformeplease that sounds horribly overwhelming to face on your own, please waffle as much as you like, that is what we are here for ❤️
Can you write a list of questions for the clinic and email them? Maybe with DH on Wednesday when you've had time to sleep on it. Is carrying on with your original plan still an option?
I will give my cat an extra squeeze for you 😽

Thanks @chickjen, all cat squeezes are appreciated! My old girl is on her last legs - I hate working away, although I know she's in good hands with DH.

@KittyKatSmile your waffle is appreciated! Do you mean Access Fertility for the funding packages? Create Fertility are the natural IVF people. I wish we'd known about Access Fertility when we set out on IVF, but we wouldn't qualify now - they're quite picky about who they take, and after three FET and no live birth I doubt I'd make the grade.

We have 9 embryos in the freezer - I know we're really lucky with that.

Apparently intralipids don't work for 10% of women with elevated NK cells, so after having the intralipids he wants to run the NK cells test again before proceeding with the transfer. If the NK cells are still elevated, that's when he uses humaira(sp?), or IVIG as a last resort. While we may be able to stretch to the genetic testing, if we did that we wouldn't be able to afford the actual FET, so would have to pause to save up for that. There's just no easy answers.

@ginandtonicformeplease yes that was who I meant. Thank you for correcting my homework for me (I'm such an unhelpful goon!) You should contact them anyway I think, because there might be something they can offer. Otherwise you could take out a credit card to cover it (see what money supermarket might suggest?)

Eurgh, such a horrid process. Thinking of you x

@ginandtonicformeplease - so sorry to hear what u re going through! its really very horrible to have been treated in a different way when u re alone and not with DH. this happened to me in a different clinic earlier too, i jus stopped going there!!

If u re still thinking of transferring ur embryos, let me know i ve done that..as we had to go for PGS (genetic) testing and the clinic that we were at that time didnt offer that..can give u more details if u want.

And about PGS, i dont fully trust in it now as i miscarried a normal PGS embryo too..But many ladies had success after having a PGS embryo, so it depends on the individual.

As KittyKatSmile says, i m willing to hav put 2 embryos back but my clinic s against it and gives me the same answer as might end up with no babies :-( Nothing s straightforward in this journey..

Anyways a new day today and hope u re feeling far better. Take Care xx

Hi ginandtonic I don’t check this thread v often but sorry ur having to re conisder so many things. Just to mention I had my 4 frozen blasts from age 28 defrosted and tested. They all survived the process but all were chromosonally abnormal. For me I was so glad I did that as otherwise would have to go through 4 potential mc with all the exp and exhausting immune treatment. Instead they all got thrown in the bin and I did another fresh cycle, age 32 and weirdly got 3 normal blasts. My first pgs normal transfer gave me my son after 6 mc and lots of immune tx. Saying that I know of many pgs transfers which fail and I’m about to do my second and I’m pretty sure it won’t work but watch this space.

For me I just couldn’t hack another mc my body was broken and I was emotionally done with it all. Pgs just made sure for me the seed was good (I know there are cons with it but for me the pros weighed up at that time) and then I used immunes for the soil! I did also use ivig just to add ...but this time Im not (prob a mistake!) but I’m taking R chance without this time.

It’s a really hard descion. For me I think pgs was the answer but I’ll never know. Loads of doctors including shehata discouraged me and so I kept going and going without it until I finally got one mc tested (trisomy 13) and then myblasts rested. And then I knew that’s wot I had to do

Ps I’ve also been to argc if you need to ask.

@ginandtonicformeplease argh! What a headache. I have to admit I don’t fully understand all you are talking about but it sounds way too complicated. I just wanted to send me best wishes to you anyway. Are you on any other threads or support groups specifically for this kind of dilemma?

I’m still plodding along. 16 weeks now and having my own mini dramas every other day. Spending a fortune on private scans just to reassure myself the baby is still alive. I feel on the verge of craziness but am obviously still v grateful to be where I am.
Have now weaned off the steroids and Hydroxy so that feels good. Last scan and intralipids with Mr S on Monday although I will probably pay for extra scans with the professor too.

Love to you all xx

Hello @summertimehere. Just wanted to wish you good luck with Dr. S and to tell you to go for it even if his manner is difficult. I'd had 4 miscarriages before seeing him (and a further 1 whilst under his treatment).
I'd had lots of tests for miscarriage approx. 9 months before seeing him and he refused to accept them when I said they weren't needed 'this isn't pick n mix you know'!!! 'I've got a reputation to maintain' Pretty shocking. I nearly didn't proceed due to his manner but Im so so glad I did (I now have a 10 month old daughter).
I did feel like a cash cow during the treatment and after the miscarriage but now feel incredibly guilty.
I was 41 when I first saw him. Had a miscarriage under his treatment at 42 and then daughter age 43.
Go for it. I nearly didn't and can't bare to think of how close I was. If you have any questions, please email directly xx

Hey @DaniMERL I hear you. I'm just over a week away from my first scan, which was when I discovered I'd lost the last baby. Thursday is the day the last one died. I'm just feeling so anxious. And I've just got my thyroid tests results back, which had gone back to normal after I'd been taking the drugs and I was only retested because of an administrative error but it's just come back abnormal so I'm obviously terrified that will cause me to miscarry. Eurgh.

Hey ladies

I’ve just been catching up on all the messages from the last couple of weeks. To say things have been crazy lately would be an understatement 🙈 We’ve been getting work done in the house (which hasn’t gone to plan 🙄) and then brought home our amazing puppy, Chip, who is 9 weeks old tomorrow. I honestly didn’t know I had a puppy shaped hole in my heart but he’s definitely filled it 😍

Oh and then yesterday I got my BFP 😮 Drove down to Epsom after work and have had Intralipids this morning and now on the loooong 6 hour drive home. It all feels like a dream and we’re trying to just stay realistic about things - just need to make it to the 6/7 week scan now and then focus on the next step.

Thinking of you all, loves xx

@Wishing5tar amazing news! Congratulations! The time between BFP and scan is just so long; I don't think anyone who hasn't had a loss can understand it really. I am 2 weeks past BFP and one week to scan.

Congratulations again xx

@wishing5tar that is amazing news! Congratulations! I’m so pleased for you. Did you see Mr S when you went for the intralipids? Good that you got them in so quick.

@kittykatsmile Got everything crossed for you - must feel like such a long 3 weeks. Sending positive vibes.

I’ve been on the pred and progesterone for a few days now and don’t seem to have any major side effects.

Thinking of you all xx

@Wishing5tar - congratulations, that s wonderful news!! Great they had a quick turnaround for the intralipids..Fingers crossed for ur 6/7 week scan..
@KittyKatSmile - i know what u mean..i always feel i have another 2ww continuing after bfp..its never easy to relax in this journey..Good luck for ur scan xx

@KittyKatSmile thank you 😘 it really feels soo long already. I still don’t quite believe it and have been testing everyday 🙈 (does anyone else do this?!) What date is your scan? Mine is the 1st August.

@Anatrina thanks lovely! No I didn’t see Mr S yesterday just the midwives who were lovely 😊 I’ll see Mr S at my next appointment when he does the scan 🤞🏽 I’m soo pleased your not having any side effects from the meds.

@Hopeful07 thanks hun xxxx

@Wishing5tar mine is on Thursday. Last week now... I am on so many drugs and am so huge and bloated. I'm also still injecting blood thinners which are painful and have left me looking like I've had a fight with a jungle full of mosquitoes....