Immune /natural killer cell treatment when ttc or pregnant (aka the 17th pred thread!)

[Hula2]

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

I didn't know it makes your lining more selective.. Learn something new everyday!! I'm so relieved my cycle appears to be behaving. One less thing to worry about.

I'm sure by next christmas you will either be happily holding your little miracle or at least be fat, happy and pregnant!! But i know how it can make what is supposed to be a happy time very sad. I had my first mc at new year 2 years ago... DH and I will be in Vegas this year so should take my mind off it.

Could you and DH have karotype tests done? At least then you'll know if your at higher risk. Could also make decision re pgd a little easier??

Oh yes ur off to Vegas great! We r going to plan a trip once I know wot the hell is going on! It's so hard being in limbo. Will my tnf be ok so I can get going. Will I have a day 5 pgd test meaning embryo needs freezing and then I cycle 1/2 Months later? It's just so much uncertainty mixed in with me having to move and stop work. I think my head is going to explode! I'll chat to the embryologists on Monday and let them guide me what I should do. I find making the descions now v stressful I just want to be told when to hop skip and jump. My brain is frazzled. So I hope they don't leave it up to me! At my appt the ARGC consultant wasnt like u must have it. But he didn't think it was OTT either. He said it would help remove one variable so to go chat to them.

Had our karotype all normal thanks. I think coz I failed on the immune drugs and knowing there's always a chance of chromosomal I feel like I should do pgd? ESP as I need ivf anyways, if I didn't have to do ivf I wouldn't bother I don't tbink and hope I get lucky one time. But as im going through it all might as well?

Yep I read it on the miscarriahe board as Quenby uses it. In a hope ur linig rejects the chromosonal wrong embryos. maybe that's why Mr s did that? Saying that I ivf u take progrsterone immediately after collection so I had it.

Feel much less alone with u guys on here! Thanks for letting me ramble :)

I'm really looking forward to Vegas now....Bit of fun is just what we need.
Give it another couple of weeks and you'll have more of an idea I guess. I really hope your TNF comes back ok so you can crack on. Glad your karotypes are both ok. Can def see the appeal in PGD... taking out another risk. ARGC will guide you I guess.

It was Louise who mentioned taking progesterone after ovulation as my LP was shorter than normal. But also read in Prof Regans book that there's not much point in starting it at bfp when its more effective from OV.

You ramble as much as you need lovely. Sometimes you need to vent and moan to people who are in a similar position. We all have those moments.

Hi everyone, I'm back! , big waves to everyone.

Sorry to see people have been struggling whilst I'm away.

trying sounds like Argc really know their stuff, but I know the feeling when your head's buzzing with so much information and what-ifs. When it happens they're really going to look after you, keep strong.

seeking Las Vegas at Christmas?! It'll be like a tinsel volcano erupted haha Interesting about the progesterone isn't it. Prof quenby seems to have good results using it that way.

You've all put me to shame with the gluten and bpa free efforts. I've eaten so much crap the last two weeks, I'm a balloon!

Oh and whilst I was away I was told I got the role I applied for! I start in November. I was so relieved I almost cried.

You know how I said I felt 'decidedly un-pregnant'? Well I did ten days of pred starting 72 hours after my positive opk and did the test like the instructions say to. I sat in our hotel bathroom and after a minute looked at the test and said 'shit, there's a second line'. So DH came in and looked and said 'yep, not even a squinter. It's a line'. Then we went for breakfast. We haven't even said the 'p' word yet and it's been 12 days since the test . I just kept thinking 'please don't miscarry on your birthday, please don't miscarry on holiday'. But now I feel guilty, I'm not having my first intralipids until tomorrow. And I'm petrified now of that 'super fertility' theory. This is the fourth time in less than a year! I'm scared of ectopic and blighted ovum and do I have any symptoms and what if I go to a scan and there's nothing there. Sorry I realise I'm rambling. I'm so scared. No one gets everything they want and I got my new job and the puppy coming soon. I just keep thinking at least it will all be over by the time my new job starts.

Hi Ladies,

Sorry been awol, work and life just a bit hectic at mo, 5dpo so just plodding along the tww...

Drttc what a pain re the ILs, did they give any explanation as to why its changed ? I m sorry this has happened. When something like this comes up it can really feel like its just more hurdles to get over and can be very deflating. I hope you can find a better solution.

Trying - sounds like a lot to consider and decide on, no wonder you feel like you re head is going to explode. I hope they can give a good amount of sensible guidance as to what they think would be best as after all they are the experts. I think nowadays it can almost be too much choice put onto the patient and less of the doctors honest opionion as to what they think should be done.

Hey Seeking glad you re cycle is behaving, fingers crossed you get a lovely bfp this cycle.

Waves to everyone else.

Snoopy congrats. About time for another BFP and hope this is ur sticky one! I do buy into this hyper fertile thing.....so many women seem to fall into that..,but it's good it means eventually everything will align and eventually fall into place. And I hope this is Urs. When is ur first scan? Also congrats on ur job-good things come in 3?? Job? Puppy? Sticky bFp? I know ur prob shitting urself but stay postive and strong!

Thanks for ur words hula seeking and snoopy. Feeling better had a melt down this am with tears on way to work. Have gained some perspective calmed down and have decided I just have to take eah day at a time. I don't know wots around the corner. Never in a million years would i think after 3 quid conceptions I would be having ivf and my DH would have hardly any sperm. So god knows what else is around the corner and planning won't help. So for now-I have an appt on Monday for a scan and to discuss pgd and that's all I know and that's ok!

Snoopy, thats marvellous news! Congrats . Just take it one day at a time, thats all you can do. Like Trying said - things come in 3's!! I hope this is it for you!! Will keep you in my thoughts.

Glad you're feeling better Trying, we all have those moments when thigs just get the better of us. Stay strong. x

Hi Hula! I'm 4 dpo so lets hope we both add to Snoopys Bfp! Fingers crossed.

Yay congrats snoopy, really hope this is your one, so understandable to be petrified, as seeking said just take it a day at a time. Keeping everything crossed for you.

Thanks everyone. Isn't it weird how it's easier to be positive for other people but not yourself?

First intralipid out of the way. Lying on my mum's sofa now, the pred has messed up my sleeping and I'm exhausted.

drttc according to my mum healthcare at home are having financial problems, she gets her injections delivered by them and they've cut down on deliveries. Maybe there is another company who could deliver the intralipid, Dr s could still write the prescription?

Aww trying, have a cry if you need to. You are the priority and if you need to get it all out then do it, it's healthier than holding it in. I think we're very similar you and I, I like a plan and to know what I'm doing and when. i don't like to feel like I'm just treading water. In a few weeks you will have your plan in place and it will probably be all systems go. Make sure you look after yourself in the meantime.

seeking, hula, when will you be testing? So excited for you!

Have we had any updates from sw when I was away?

I'm going to test on Tuesday I think...... Not really sure. I don't like to think about it as I feel I then get my hopes up and over analyse everything. I'm already obsessing over the pregnancy charts on Fertility Friend!

Quickly popping in!

Congratulations snoopy - exciting and scary times ahead, just take One day at a time. In the early days I was even doing it as I got through my work day, I got through the night etc. DH and I hardly spoke about the baby or oregnancy until the 12 week scan and only increasingly more recently.

Hoping this us the start if the baby dust for everyone else too!

As for intralipids when I had one earlier this year I had to go to a practice in wimbledon they wouldn't let me do healthcare at home but I think the gp surgery couldn't keep up and as Dr s had nowhere to give them they used healthcare at home, but louise dud tell me that once they were set up in the new office all intralipids would be given there. Luckily I had all mine with healthcare at home which was so much easier not just in terms of being able to watch tv etc but I was able to work at home before snd after minimising the amount if time iff work I needed. I think they are young yo try and combine appointments with the drip though to minimise the need to travel. Still annoying though, I don't live a long way away but the journey is bad enough!

Tnf his up at 33.6 :( waiting a call re the plan but likely humira. Another delay, while in the background we are panicking of Dh sperm going to zero.

Oh no trying, I'm so sorry. But remember you have a plan and there is treatment. Am I right in thinking that level is the higher end of normal rather than catastrophic? You are going to get there.

Hi sunny, bet you feel amazing after your scan. It must all suddenly feel so real.

Everyone keeps talking about scans and telling GP to get the NHS ball rolling but I'm too scared. What if I go for a scan and there's nothing there?!
Oh and you know I was supposed to be having my NHS recurrent miscarriage appointment tomorrow? Well I called them today to confirm and give them a heads up and they said they're nothing to do with miscarriage and only deal with ivf, so I've been waiting since May for an appt at the wrong clinic. Good thing we're lucky enough to have gone private but now I'm kind of at square one. I'll have to bite the bullet and tell my GP.

Oh how crap! Sorry u were sent to wrong clinic. I think scans r the worst! But it on tx, Mr s has a great success rate and just stay strong for ur bean.
Yeah 30.6 is normal mine is 33.6. Waiting for their call to see wot they say...have to accept the month or 2 delay it will cause. Was hoping to have some good news for this xmas but I think I'll stil be waiting ! As u can't cycle in xmas as the immune lab in chiacgo closes for a while AGHHHhHHhH. To be honest I'll feeling ok, just pissed off. Told dh over text and he's not taken it v well.

It's hard trying to manage other people's hopes and expectations as well. DH got upset when I said tomorrow is cancelled even though he had been telling me 'forget the NHS, we have our treatment'.

Maybe they'll say the levels ok.

they rang. humira for me. need tb checked first then can start
hula did urs come via health care at home?

Snoopy - i didnt book midwife appointment until after my 8 week check. I know mine didnt end well (yours will!!) but you have your treatment from DrS so there's no rush regarding the NHS. Just take it at a pace you feel comfortable with. I dont think I'll arrange anything with midwife until after 10 week Drs scan next time. When's your first scan with him? Or have you had it?

trying - sorry your results haven't come back as you had hoped but aybe thats part of why last time wasn't successful? So hopefully now by getting that back to lower level it'll will give your next round a much better chance. And i know it's disappointing but in the grand scheme of all this, what is a few months really? Plan something for the next couple of months that you and DH can enjoy before it all kicks off again.

We've had a chaotic day - Loki got attacked by my friends dog so had to take him off to the vet and I got a tooth to the face in the chaos as I tried to break it up! Drama!!

oh and btw the tww SUCKS!!

Ur right snoopy! I just feel tired of it all! One issue after another. But then I'm in the right hands and I just have to be postive it will work out eventually. I still am in shock that my first 2 pregnancies were conceived in 1 month! And now I need ivf and that takes forever by time u have appts etc.....anyways! Gonna book a holiday and try keep busy and gives me more time to loose
More weight!

Fingers crossed for u seeking, it's so hard the 2ww I used to obsses every time! That's the one good thing about knowing its not going to happen naturally. I'm not counting days and looking at my cm!!!!

Pooh holidays. Must control my wanderlust, can't afford another holiday for the next decade or so haha

Oh god trying don't talk about weight. When I put on my uniform this morning I thought 'when I sit down trousers are going to split'. I'm pretty certain people have noticed

On no seeking poor little Loki! And poor you! Such a brave fur mum to dive in and save him though.

The only thing I worry about with the NHS is my thyroid. I take 50mcg of thyroxine a day but that's not much and it doesn't seem to affect conception (touch wood so far) so I'm sure it doesn't make too much of a difference.

That should oooooh holidays not 'pooh' holidays stupid phone

Seeking missed bit re Loki! Sounds like a right drama hope he's ok!

Trying - sorry to hear your tnf was up and you re gonna have a delay for the humira but at least its not too high and best to have all issues covered before you cycle. I had no issues with it (and i took 4). I got it from healthcare at home, about 800 for a course of two, came the next day. Def a good excuse to book a hol.

Snoopy - since you re have private scans etc i wouldn t worry about rushing to see the nhs, the midwife appt is only to get u in the system for the 12 wk scan and they ll prob only get over excited about you having immune tx like Rosa got so as Seeking said i d just stick to dr s till 10wks.

Seeking - poor Loki, hope he s ok, dog attacks can be pretty scary.

Afm had a dream i was pregnant last night (i was having a follicle tracking scan and there was little bean there already!), felt really happy and didn t want to wake up (managed to sleep for 10mins thru my alarm) ! Obviously just wishful thinking but crazy how real dreams can sometimes feel.

Sorry to hear your tnf is up trying but at least they are picking these things up before you go through the process even though the waiting is rubbish as I bet you just want to get on with it!

Snoopy, I didn't see my midwife until 10 weeks after I had 2 scans with Dr s and he was happy - I only booked it a few days before I went. Luckily my midwife was totally understanding and it didn't effect ne getting a 12 week scan appt. my nhs consultant ( who I was referred to due to history and raised bmi) was also very supportive and Interesred In What treatment I had had. In fact noone at the hospital I am attending has been negative in anyway about the treatment I've had.

I'm 22 weeks now - feel like tine has sped up a bit after those early weeks. Still worried - I don't think it will go away at all but starting to feel baby move now which U.S. nice but also freaky at the same time!

Wonder how rosa us getting on - she must be close to 30 weeks

Thanks girls. Ur right it's kinda good something else has been found as my last loss was so early and sip tnf is the cause for biochemicals so maybe ive deveolped this recently. Just feels like another delay and hurdle but I'll just keep plodding along!!

Hula--my mum told me about her neighbour who at 42 had 2 failed ivf and told her eggs were old and to stop trying. She decided to have a 6 month break and do one last ivf in that 6 months she fell preg! Mum told me thins in the hope it made me feel like I could get a miracle bfp but she doesn't know about DH sperm!! So I just sat and smiled but thought of u. Hula did u do 2 injections then a recheck at 3 weeks?

Sunny great all going well. So exciting for u :)

Snoopy hope ur feeling postive and ok

Seeking hope time passes quickly for u!

Both Loki and I are ok thanks ladies. Did worry that he may be a bit cautious of other dogs, but went to puppy school last night and he was fine. Probably more scary for me at the time!!

It's DH's 30th today so we've had a lovely breakfast out and have dinner with friends planned tonight.

Glad your NHS team have been supportive Sunny, must make you feel a lot better, knowing they're on board and actually interested in the treatment rather than dismissing it.