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Conception

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Immune / natural killer cell treatment when ttc or pregnant (aka the 15th pred thread)

991 replies

sunnyday01 · 06/02/2015 20:10

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

OP posts:
Lilliesandchocolate · 12/03/2015 20:58

Good to hear from you trying, fingers crossed for this next cycle. Thanks to you all for your wishes.
Ok news I guess. I thought we'd walk away with either good news or bad and we seem to have the middle road. The scan showed the sac with something inside but not as much detail as the doc would've liked. This, he said, could be due to my dates being out - I struggle with this - and the fact ive got a tilted uterus and it was difficult to see anyways. So, all I can take is that today it's ok. I've an appt for a weeks time to measure progress. They didn't say anything was wrong but they didn't leave me with any confidence either. Just want this week over please!
X

Tryingno1 · 12/03/2015 21:06

Oh lillies I'm sorry. I've had so many limbo scans and the anxiety is so high. Have u got an appt with mr s soon? Was it too early for a heartbeat to be seen?
I hope ur ok, keep strong I have my fingers crossed for u xx

Determined123 · 13/03/2015 08:20

Sorry to hear you are in limbo at the moment Lillies! Praying all is good and sending positivity your way! Like you said everything is ok right now so that's good! Hope you can keep busy this week to distract yourself xx

Lilliesandchocolate · 13/03/2015 10:03

Thanks to you both. It was really weird, I left feeling really confused. I feel really blindsided by this, thought it would be good or bad, never thought I'd be left in limbo.
No mention of heartbeat, no mention of actual measurements. Just that they couldn't see all and that my dates could be out. I know maybe by 24/36hrs but not a week. They didn't explain themselves and I left not knowing how to feel. My husband says it's all ok today, it's there, it's in the right place and we will see/know more next week.
I've always had miscarriages, never mmc so this could be a new thing for me.
Yep, roll on next week. I've got a very fractious toddler to distract me today!

Drttc · 13/03/2015 10:51

Lillies I'm so sorry you're in the position! I know my most torturous miscarriage was when I just bled until 5.5 weeks, with stronger & stronger positive pregnancy tests because I just felt confused. I just wanted to know one way or another so I could carry on accordingly. I hope you find a definitive answer as soon as possible. Maybe get some hcg testing done?

Drttc · 13/03/2015 10:52

As for me, tested today and got bfn (10dpo) and I'm hoping it's right so I can start proper treatment with Dr S on Monday. Still had a tiny bit of spotting today which is unusual but I just don't know what to think anymore!

Tryingno1 · 13/03/2015 13:50

Hi drtcc. It's prob the only time u felt
Happy to see a bfn! Let us know what mr s says hope he has answers for u!
Determined are you getting your retested results then too?

Determined123 · 14/03/2015 08:28

Hi trying, no specific date for me just a phone call with suggested course of action. 2 weeks would have been this week so results will be in. I haven't chased as I have my head in the sand...not ttc and no results make for a lot less stressful life Wink as soon as I get them it will probably mean getting back on it, more expectation, disappointment, upset blah blah blah. It's such a negative way of looking at it but I think i still need time. If I don't get preg I can't lose anything. It's a way of protecting myself I guess!

Rosa27 · 14/03/2015 09:22

Hi everyone.. Sorry I'm so busy right now it seems I'm falling into a weekly pop in habit. Lots been going on ..Lillies, my heart goes out to you- I had 3 weeks of limbo last time where I was told to expect the worst but not to give up hope, and my accu lady kept telling me my pulse was still good and to talk to the baby .. It was the hardest thing ever. Of course staying positive helps you, but it's important not to forget there's very little you can do - except distract yourself with box sets. I hope you know for sure very soon and everything crossed for you.
I've just got af so back on SO drugs from tomorrow and upping dose to 75mg as only had one follicle first time. Need to order ovitrelle and arrange scan and figure out all the timings .. Feels hard to go through all knowing it's usually 5th cycle it can work and this is only 2nd. You never know though I suppose.
Sorry for everyone who is out this month but drtcc, you'll feel better knowing you're on the recommended treatment.
Determined- absolutely understand your need to stay in the bubble as long as possible - make the most of it.
Hope - looking forward to your update :) Trying - hope you're doing ok? X

Lilliesandchocolate · 14/03/2015 19:54

Exactly rosa, you could be the exception! Fingers crossed.
Hey everyone, how's your weekend going?
No news Here, just constantly going to the look to wipe and check! Also occurred to me, that I've brought this worry on myself really, asking for the early scan. I could just be doing the usual worrying waiting to see mr s, instead I've given myself extra! Just got to wait til Thursday. If all is well then then the local midwife wants to see me the next morning and I'll have to arrange for intriplalids on the following week. I've already got an appt to see mr s arranged, in fact maybe I should organise the infusion ASAP to ensure I've an appt the same day. They refund the cost if it's not needed. I'm 4 hrs or so away so really need it all done together? Thoughts? I can't jinx it, can I? Whatever's going to happen will happen regardless.
Xx

dildoos · 15/03/2015 07:33

Just popping in to say happy Mother's Day to the most amazing mummies I know! Just because we are not all holding bundles of joy we are all mothers!
Take care and pamper yourselves today!
Love to all x

Lilliesandchocolate · 15/03/2015 10:47

And today, just as an extra kick in the head, I wipe more colour. Frick.

Lilliesandchocolate · 15/03/2015 10:57

I hate all this limbo, and that with limbo you get false hope. Nothing's happened for a almost a week and then it's appearing to start again.
I'm not very well either this weekend, first time in ages I've not been well, thought it was because of the steroids.

Hula2 · 15/03/2015 20:06

Oh Lillies i m sorry, the limbo is the cruelest part of it all. Just hang in there till your next appt, it could still all be fine but i know that sometimes allowing that hope just seems to give yourself further to fall from. Keeping everything crossed for you and sending a big hug. x

Tryingno1 · 16/03/2015 08:58

Hi girls

Drtcc good luck for this evening. I hope mr s has a plan ready for u and u feel confident with it when u leave.

Lillies I'm so sorry you had some more blood. I hope ur keeping busy and the next few days don't feel like a total Eternity. I have everything crossed for u

Determined let us know wot mr s says, hope ur levels haven't changed too much. I totally understand re burying head! It's a coping mechanism we have to do from time to time. I hope ur keeping busy...

Af just finished here. Cycle 9 here we come ugh! Had a great weekend at hen although shattered! Felt guilty yest as I drank a bit too much, but then thought whatever-no drinking hasn't help me! So maybe drinking will?!

Drttc · 16/03/2015 22:42

Thanks trying and Rosa!

Lillies hope you're okay and know you're in our thoughts!

What a busy weekend and monday!

Well I've seen Dr S today and he's put me in the very high NKC category and also complex. Said my response to the treatments (in the blood test) were disappointing, but he's treated people like me before and is positive about it. I asked him what statitistic he's put me at in terms of his patients success rate and he said 70%... So not 85%, but I guess 70 is a number I can work with. I figure at 28 I've still got some time to figure this all out and seeing him now is a good start :)

Waiting on af (was due today) and then we'll be TTC this month! Bit scary but I'm excited to start treatment. I'll be on 25 prednisolone from ovulation and continue with that at bfp in addition to cyclogest & Intralipids every 4 weeks until 16 weeks...

sunnyday01 · 17/03/2015 07:53

Sorry to hear your in limbo Lillie's, thinking of you.

How do you feel about your results drttc, after it sunk in I felt a bit relieved that there was something I could do rather than nothing? You are in the same treatment as me (but I now have an additional medication, hydroxy, after my mc on the treatment).

I'm just holding out to Thursday to test, not expecting anything, have no idea either way this month. Bit fed up the last few days, a few people on facebook have either posted scan pictures, updates in their pregancy or pictures of their babies - I just wish it was me :( hopefully that bfp is just around the corner for us all x

OP posts:
Drttc · 17/03/2015 08:19

Hi sunny,

I'm a bit disappointed but hopeful at the same time. I'm worried this means I'll miscarry again... As in, I know I'll be successful, but it may be a tough road there :(

What was the reasoning behind the hydroxy? From what point do you start that? How easily do you conceive?

We are all rooting for your bfp!!! Roll on Thursday :) Will that be 10 dpo? Personally I think 10dpo is too early for me to come up with a positive...

Oh my god I completely relate with Facebook! I've actually reduced my use of it massively as a New Years resolution. I only go on once a month unless there's a 'big' thing to share or I need to speak to someone I only contact on Facebook. It's been amazing and I really recommend it.

Lilliesandchocolate · 17/03/2015 08:52

Still here ladies, thanks for your thoughts.
Despite not getting any red blood so far, I just know it's not working out. I think it's the meds keeping it all going. Mostly because of the scan really, my dates just can't be that far out.
I've been reading a lot of the threads of the miscarriage bit on here, especially the coping with it thread. I'm going to ask for ERPC under GA. and ask for it to be tested after. I've been through too many 'natural' miscarriages, don't have the strength do it again esp whilst I was on the treatment. I'm hoping that if I stay on treatment til procedure that it'll stop it happening before then.
I'm just drifting in limbo til Thursday when it'll be confirmed and next steps put in place. Nothing's getting done at home, just bare minimum other than sorting the kids.
A lot of thoughts on wether we should carry on with ttc no 3 after all. This is a difficult journey for me.

Glad to hear you get your results drttc, I was elated to have a plan!
Apologies for being such a downer x

Drttc · 17/03/2015 09:19

Lillies, you're not a downer. I'm sorry you're feeling so low right now. But I recognize that this is the way we are... After what we've all been through, we arm ourselves with information and prepare for the worst. We never want to feel as crushed as we did the first few times we innocently expected things to turn out perfectly. It's terrible to feel so vulnerable, and at the mercy of what seems to be a game we always lose. But don't forget that it has worked for you before (your little ones), and it can again. Use the same logic that has got you down, and turn it around in your favour. You're the mother to two little ones because you didn't give up.

sunnyday01 · 17/03/2015 09:43

Its definitely a tough road for all of us, sometimes I feel like I have come such a long way, I must be nearly there, other times it all feels so far away!

I'm on hydroxy as i had a mc with my first pregnancy on the treatment - it could have been for numerous reasons but the hydroxy gives additional help to help suppress the nk cells - i have to take it everyday - not noticed any side effects at all. I am been sceptical about a day 10 test too.....but still do it (well actually I do it on day 11 as i always take my steroids for 10 days before doing the test!)

I haven't found it easy to get pregnant - i got pregnant in jan 13, and then oct 13, then no pregnancy until jan 15 -which was as a result of doing super ovulation. I have no idea if the NK cells have affected me getting pregnant but i am just following the plan given to me to the letter and hoping for the best.

OP posts:
Drttc · 17/03/2015 10:58

Hi Sunny,
Remind me again how long you were with Dr S before Jan 2015? At how many weeks were your mc? I had a Mc in Jan 2015 and Feb 2015 :( This is my first 'real' af this year (couldn't be pregnant for consultation). So officially CD1 now...

sunnyday01 · 17/03/2015 11:41

I got my results in July 2014, I was meant to start SO in August but for some reason I didn't have an AF in august (unexplained) but was back to normal in September so started it then, got pregnant on round 5 (which is the average for SO).

My mc on the treatment was at 5 1/2 weeks so very early (1st mc was a t 8 weeks, 2nd mc was at 5 1/2 weeks), fingers crossed next time is my lucky time!!

OP posts:
Drttc · 17/03/2015 13:18

Yes fingers crossed! Looking forward to hearing about Thursday!

Lillies also hoping you have positive news on Thursday as well xx

Tryingno1 · 17/03/2015 16:34

Hi drtcc. Glad u have a plan. And ur right u have age on ur side. U will will get there in end, but like all of us heartache on the way. Fingers crossed it happens soon for u :))
Sunny, u know so worked for u before so hopefully it will again!
I'm off on a weekend break soon, needed to get away again! Have become very bored of ttc and kinda given up! Still puzzled by it but it's obv not my time for a baby yet. Bit longer!
Lillies I'm so sorry u feel like this and have to wait another 2 days. I'm thinking of u and hoping u have good news. It's so so hard, but if u decide to keep going for no 3 u will get there. It's just how long and how many tears before u get there...