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Immune /natural killer cell treatment when ttc or pregnant (aka the 16th pred thread!)

992 replies

sunnyday01 · 05/06/2015 19:22

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

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5
Snoopysimaginaryfriend · 10/07/2015 19:46

Evening everyone.

trying hope you are feeling as well as possible in these circumstances. Argc does seem to produce some amazing results but I have no idea how couples find the time to do it.

sunny and rosa sorry to hear you're both anxious. It's completely natural and I can only hope it does eventually get better. You're both inspirational to me whatever happens.

determined when will you get the results of your tests? Fingers crossed they all go well.

So I'm cd 17 of what's usually a 33 day cycle and the last few days I've been getting a couple of really tiny (smaller than a pinhead) specks of brown blood. What on earth could be causing this?
I've already told DH I'm not optimistic about our chances this cycle. Knowing my luck it'll happen next cycle and then I'll miscarry on holiday in sept.

Seekingmiracles · 10/07/2015 20:29

I feel so bad for going AWOL again. Only just got internet today!!
Trying - I can't put into words how sad I am for you. I really thought that this was going to be a success for you. My heart breaks for you. I never thought for a second I'd log in and see what I did. I'm so sorry hun. I'm glad that you didn't need to got through another D&C. Sounds like you have a plan laid out that is sensible. ARGC are phenomenal. I'm on a local FB group for ladies struggling to concieve and there's a lady on there with all kinds of immune and blood issues and she's now in 2nd trimester after thinking she would never get there. It's a big commitment but they are experts.

Sunny - you're so close. I hope next weeks scan brings you some relief from your worry and you can start to believe that you're finally on the path to motherhood.

Snoopy - no idea what the smear could be. Ovulation bleed?? Don't think that far ahead yet, one day, one cycle at a time. It's hard though. Also CANNOT believe how awful your work is being!! Arses!!

Drttc - you seem to be in a positive place despite your recent nightmare. It's good to have things to look forward to & a plan in place. I'm taking CO Q10 and DHEA. Hopefully they'll work some magic. Trying not to think about how long i'm on them. I'm taking things daily. I know they work best after 3 months but if I fall again next cycle i'll at least have a slight improvement I guess. And if its another 6 months then my eggs should be pretty decent.

Rosa - hope your 20 week scan gives you peace of mind. I know it must be so hard when everyone around you is getting excited and you're nervous. But hopefully you'll be able to share their excitement soon.

I'm glad we've had the house to focus on. Not spending every waking moment thinking about RMC. Think I may have ovulated over the weekend so with a it of luck I'll get AF late next week. Then I can focus on moving forward. Seeing DrS on 23rd, will get the karotype results then and hopefully a plan.

Also I've started writing a blog. As a way to clear my head of my thoughts but also because I want people to know that there is this other world out there where having a quick shag does not result in a baby. Where its actually very complicated and very painful. Once i'm ready I'll post the link.

Sorry for the long post..... I won't go missing for as long again! Massive hugs to all who need them. You ladies are inspiration. To have such strength and determination when everything is against you and life is blue is amazing. You're all amazing, i hope you know that. You've all helped me find my own strength without even knowing.

Tryingno1 · 10/07/2015 22:30

Hey guys.

Sunny that's wonderful. I really have everything crossed for u and I'm sure u have made it on the the side.
Sadly the fear will never go, but I hope u get to enjoy some of ur pregnancy after ur next scan.

Rosa-wow 20 weeks. So glad for u. Of course keep posting here, we all want noting but to hear ur good news and help u when ur struggling that's what this board it for. And we all know when we get there we will be anxious on a minute by minute basis! Really happy for u :) Before u know it u will be in labour and telling us all the good news!

Snoopy- me and DH are resigning from our jobs and Moving to London. It's shit and our lives are about to change in ways we never thought. But I feel that I need to do that now. I wouldn't if it wasn't for his sperm though but I don't think we have time to play around with. I have no idea What im Going to do when and if it doesn't work there :(. Am petrified. I feel like if they can't help im ruined. But dH says we just try again there?! Have a follow up wirh my current ivf consultant too see what he has to say.

Seeking-am so glad you have the house. Times like these u need major distraction. I Bascially spent all day in the pub! Not Done that in a years! Haven't drunk in month and months! I'm Looking fwd to ur blog. I might do one too....

I'm basically ok, gone into denial. Pretending it never happened l I'm just waiting for my first ivf. I've told myself this one was chromosomal too?! Seems to help my mind?! Also feels shitter when u fail on treatment? I sure sunny, seeking and drttc and determined can associate with that? But then u sunny started tx later this time and now look!!! Makes u wonder how much there is in this immunology!

Hi to everyone else, good luck sunny xxxx

Tryingno1 · 10/07/2015 22:32

Oh some good news! DH gave another sample and they have frozen enough now for 4 cycles and there was a lot more there. Sup it can vary weekly, but we went from 8 soerm To a few million! Still not the 20-40 million which is normal. But glad here's still got some production and feels bit more hopeful we can get another bFp via ivf.

Rosa27 · 11/07/2015 09:26

Wow Trying - bug move literally and metaphorically but you've come so far I absolutely get why you'd go all in now. And though I don't think you should be hearing the clock ticking with your age and frozen sperm and embies, I also totally get why you don't want to lose the psychological momentum. You'll probably never quite know what the magic formulae is - ie what bit of tx, timing etc came together to make it successful, but I really do think you will be successful. As ever, we're all 100% behind you.
I'm not 20 weeks yet.. Just 18 today .. But yes, I'm wishing the next 2 weeks away for that scan.
Seeking - great idea to do a blog.. Therapeutic as well as helping others .. Sure you'll have some of us chip in :)
Determined - everything crossed your results are positive - best of luck.
Snoopy - any insight into the spotting? I never had that until I was on tx and then I remember 3 months or so getting similar and it would have been about the time I might have ov or a bit later perhaps. I remember wondering of if was ov or early failed attempts at implantation. I don't think my googling gave me anything conclusive. If you're worried though you should get checked out.
Hi everyone x

Snoopysimaginaryfriend · 11/07/2015 09:41

Thanks for all the replies. I'm not particularly worried. It's so tiny that there's no way I would have spotted it without really examining like the madwoman I am.

trying as you can probably guess from my job I'm a Londoner born and bred so if you need anything to help with the move let me know. I'll be happy to help.

Tryingno1 · 11/07/2015 12:29

Thanks snoopy. I've Moved from London to Come North to have a family?! And now im Moving back?! So I know it pretty well, have friends and a place to stay with my sister luckily. I'm trying to not make the move but I can't see anyway around it currently. DH can easily relocate his job luckily.
How's ur job Being by the way? Did the rm Board help out with the law of mc leave? Hope ur feeling better?
Rosa, thanks. Today I feel
Hopeful. But some days I worry I'll be the one who has 20 miscarriages and then has to stop. And in the meantime will have wasted my life away. But then I'm sure we have all thought that at times. Just need to
Keep busy until the Move, and I'm sure I'll change my Mind about it daily! I think my consult with the argc will be enlightening and help me with dwscion
happy weekend everyone. Hula u must be testing soon x

Determined123 · 11/07/2015 12:43

Wow I can't believe how quickly your pregs are progressing...am sure it feels like forever but it's crazy...I saw my new nephew last night! He was so tiny and gorgeous (5.14) but did feel a little odd that my 3rd mc would have been due around now! When DH picked him up I had to do everything I could to stay rock solid and not ruin the moment...I was so happy but i just felt light years away from that image/happiness being ours!! (Even though we are very happy!)

Trying you sound like you are doing so well and being positive re sperm issues. I know what you mean about failing on treatment...I tell myself the third was chromosomal all the time!

Seeking blog sounds great...ive often thought of a blog...I think rmc awareness needs to be raised significantly...So many people close to me have been great but so many have also said stupid things or made me feel uncomfortable through ignorance! I often think I'd love to set up a charity or something one day to help...

Snoopy get my results weds afternoon...I feel weirdly ok with it all and also oddly not that bothered! (Sure when I can't sleep Tuesday night will be a diff story) I think ive resigned myself to it being a game changer and have slim chances anyway (which I know sounds negative) but I don't see how the lab/my body can be the different!

Also my cycles are a compete mess...gone from short lp of 3 days to pretty sure not ovulated and now on day 35! Wtf!!

I hope you all can enjoy the lovely weather this wknd!

Tryingno1 · 11/07/2015 14:27

Well done for being strong determined. Must have been really hard. I'm sorry ur cycles r being stupid. SO seemed to set them right though so maybe it's something you could look into again? I'll be thinking of u on wed, and whatever the results bring u will have sucess one day it's just when. I've been Google mad(im stopping after this weekend) and read of so many women with ommunology issues who just decide they not gona bother with tx and then they have sucess?! It's just a random process partly filled with luck. I just can't imagine getting to a place where I "forget it" and throw the towel in though.
I'm worrying that I'm physic/intutive. When I first started ttc I was worried we would have problems. Then we did. Then I was worried I would need ivf about 7 months ago and everyone told me I was being silly. And then turns out dH devolps this random problem and we do! Then i was worried that I would have a chemical preg this time, don't know where the thought came from as not had one before - and I have? Now I'm Worried argc won't be able to help and I'll miscarry there too. And then if I give them 2 chances and then it still doesn't work I literally won't know wot to do?! Plus I'll be skint and in Debt?! I'm half thinking of delaying argc just so I don't loose that option of hope!
How do I stop these thoughts!!!!! I feel like I tempt fate?! Or do we all have them?! I Prob sound bonkers...

Drttc · 11/07/2015 16:03

Hi all! Wow so much to read!

Seeking, glad to hear you're doing well and you're enjoying the house. I see Dr S on the 20th so not long before you! I'm hoping he suggests something different for me this time as I feel this treatment made little difference. I really hope we catch quickly & it's the magical egg/sperm combo we've been waiting for!

Rosa- So inspiring to see you where you are now! Thank you for sticking around and reminding us that there is hope... NO WAY does it bother us hearing your updates! From the bottom of my heart thank you for continuing to share. It's so exciting & encouraging.

Snoopy- Sorry work is still so rubbish! I'm over work atm as well... I understand feeling pessimistic about ttc. These ups & downs are normal but obviously there is something driving us to keep fighting. Must be a reason!

Trying- lots of big decisions! I respect you saying that this is important enough to move mountains for. Whatever you decide, you'll get there. Don't psych yourself out though thinking you can anticipate things... Fact is we've had bad luck repeatedly & expecting more is natural. I was petrified I wouldn't be able to conceive when I was trying for this last one... And was wrong. Maybe focus more on the confidence that you will get there, you just don't know when. I'm currently on all the standard Dr S meds, plus N-Acetyl-Cysteine, folate, ubiquinol CoQ10, and vitamin b6.

I'm fixated on finding a house & doing it up for bambinos. Couldn't care less about things outside my husband & our happiness now... Does that sound terrible? Oh well! I'm genuinely so happy now & it's lovely. I think being a part of this forum really helps us stay positive. Knowing that I'm not alone in this is such a comfort. Feeling isolated or like you're somehow broken is one of the worse parts of RMC (second to longing for your baby of course). I would have been so lost without you ladies!

Snoopysimaginaryfriend · 11/07/2015 20:26

Oooh drttc I just received my NAC too. Did you read the same study as me with the 240% better chance of live birth?
And I completely understand prioritising yourself and DH. I was invited to dinner with mum, bro and sil but after bro deliberately ignored my mother telling him not to to call me at work and tell me sil was 12 weeks pregnant and there was no point in sugar coating it two days before last mc he can go fuck himself right now frankly and I don't care if people think I'm being a bitch, if it upsets me I'm not going to do it anymore.

seeking great idea to write a blog, must be very therapeutic and I do think people should be more aware of the many couples who have different fertility problems.

trying I admire your perseverance, and I definitely think you have the right attitude. It would be worse to look back and think 'what if' or 'if only'.

rosa I love hearing your updates, they're inspirational and DH often uses you as an example when I'm having a bad day.

Tryingno1 · 11/07/2015 21:21

What dose of coenzyme did you take?

Snoopy, do whatever makes u happy/comfortable. After my third miscarriage I started caring a lot less about others and a lot more about me and dh. Like drttc said-I feel the same-me and dh are most imp and everyone else can do one!

The number of babyshowers I was invited to over the years. I felt so bad not going. But dh would be like "u will go and smile and come home and cry, why do u want to do that urself, ur friend will be happy u went but u will be hurt and sad". And so I stopped going to them. And I figured if they were close enough one day I might tell them and they will understand. But at Least it stopped a night of tears? When my friends have babies I see them I send them cards and gifts and I'm happy for them. But going to baby showers/other baby related functions is not good for my
Mental health! So I've started saying no to things which are not good for me. People who haven't been through RM just don't get it.

Drtcc def look for a house! And yes u and dh most imp. My attitude totally shifted to that too. It's self preservation. Good luck for ur appt with shehatata

Out of intrest- ive been reading
Lots about pgd. And the number of women aged 30-35 (falling in a lot of our ages) who do ivf and have 20/30 percent nornal emnryos when tested is shocking. I'm not saying at all ivf is the answer-Infact I don't think IT is (it doesn't seem
To Help if you have other issues) But it makes me wonder if we have all had one/two or more chromomsoal losses along the way too? Seeing as I need ivf anyways I might just throw pgd in too. Saying that ive read of normal embryos gping in and people still Miscarrying!! So it's def not a guarntee and shows immunology issues need covering too! Confusing Confused

Tryingno1 · 11/07/2015 22:20

Seeking how did u wean off ur pred? My ivf clinic were shit on this and told me stop all meds. Couldn't be bothered with questioning them but know I need to wean as been on equiv 20mg for a month now since egg collection and was on 10mg for 2 weeks before that.

Rosa27 · 12/07/2015 09:15

Trying - I weaned by dropping by 5 every 4 days .. And started weaning at 10 weeks .. So would have taken for 2 months. Louise said that's their new guidance. If you followed that it would take you 12 days to stop. X

sunnyday01 · 12/07/2015 15:03

With my previous miscarruage I'd been on it for 4 weeks and they said I could just stop it, no harm in weaning off it though to be on the safe side.

I wonder how much the hydroxy has helped this time - and why he doesn't prescribe it for everyone I stead of pred as there seems to be a lot less side effects on it.

Dreading early part of this week, got to have a hard meeting with someone I line manager about their performance which I'm dreading as I hate doing things like that and then got SCSI on weds which I'm feeling very nervous about. Roll on 4pm weds afternoon when both things will be done andhopefullycan take a sigh of relief and have a little bit of hope!

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Rosa27 · 12/07/2015 15:42

Sunny- agree, though I lost a lot of hair with hydroxy and made my skin very dry.
I've also got a big week with work..find out if redundant or not tomorrow and then have to tell my team tues.
What's SCSI- is that 12 week scan?
Good luck with it all anyway x

sunnyday01 · 12/07/2015 15:44

Yes I meant scan - stupid auto correct!

Fingers crossed that the work thing works out ok, awful time not knowing if going to be made redundant or not.

I haven't suffered too much from the hair loss after the first few weeks if taking it, plus I have had really dry hands for a couple of months but now I have no signs of taking it.

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Rosa27 · 12/07/2015 16:18

I know- everything happens at once! Puts things in perspective though.
Will be thinking of you on Wed - lots of positive vibes.
I was also ok for 4 months on hydroxy and was losing handfuls daily at 5 months.. Conceived the week after I stopped and then Louise says the intralipids should take over. I started them a bit later as Mr S was on hols so on the end didn't need my last infusion. It's a pity we don't all have the same the immune profile so can have the same answers!

sunnyday01 · 12/07/2015 17:02

Yes it is a shame we are not all the same - may make things easier! My next intralipid will be at 13 weeks 2 days, which means my last would be at 17 weeks - do you reckon they will say don't have it as it's late on?

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Drttc · 12/07/2015 17:16

Well it's finally happened... My husband's best friends wife is 3 months pregnant! She doesn't like me (has told people) and now I have to go on a hen do with her next weekend & pretend I'm not affected. Feel like I've fallen into a pit of hopelessness. I feel like my time has run out & it's finally going to happen... I have to watch everyone around me have families. I'm so sad & don't know how I'm going to keep it together in public.

sunnyday01 · 12/07/2015 17:25

Oh drttc - it is do hard and I have been where you have been - both my best friends have had babies in the time we have been trying and they are now both expecting their second babies. I don't think there is any tried and texted formula on how to get through it - I found the hardest bit was them telling me they were pregnant - once I got used to the idea I was ok and happy for thrm but appreciate these are my friebds and not someone I don't like/doesn't like me! Do you have to go? Can you not fake a sickness bug to get out if it?

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Tryingno1 · 12/07/2015 17:29

Oh what shitty Timing drtcc. I'm
Sorry :( . When ur trying so hard to keep ur chin up and be brave the news of someone getting preg sucks (sorry it just does) then if it's someone u have to see and don't like its def worse! Can u get really drunk at the hen and have fun!?

There's no way to deal with it, except that her pregnancy has nothing to do with your chances and sucess in the futre. It has no bearing. Stay away from Her and do what's right for ur mental health. That's most Imp now.
I've left facebook! Every single person I know is preg or has a baby. I was the first to get married too.My 2 besties got Married this year and I'm Waiting for their accouncements too (I'll be so happy but can't Help feel sad for Me and dh-our meets ups will change from
Dinner and Shopping to talks of babies :(.....For some reason everyone Else can pop them Out around me except me ;(

It's just shit drttc! Try keep ur spirits up u have been so postive despite ur last mc being so Recent. It will work out for u, its just when. I find all u girls wonderful strong and it def makes it less isolating knowing we are in this together. Although I wish all ur lovely Ladies were not having this heartache xxx

Thanks for the pred advice rosa and sunny. And good luck for wed sunny x

Drttc · 12/07/2015 18:16

Thanks Sunny & Trying! It's just so hard hearing it. Of course I want people to have babies, but I wanted to be able to 'fix' this first. I don't want to be left behind when it's something we want so badly :( I feel bad saying it but I don't feel that way towards people that I know have struggled... They give me hope! But the thought of now being surrounded by expecting couples who were like us, except not 'broken' is devastating :( Arghhhhh I guess I'm broken in more ways than one.

Tryingno1 · 12/07/2015 19:00

I think we all feel the same way...it really is so hard. Just have to get through one day at a time. Accept news like this will upset us and then move on when we are ready.
hugs Flowers

Tryingno1 · 12/07/2015 19:02

So glad I had my hcg levels done. I would be having my scan tmrw. Nothing worse than bad scan news. I don't know why the empty uss screen is just so heartbreaking. I'm off from work tmrw and home alone. Seriously need to think how to keep busy and not break down! I'm thinking gym spring clean and cook?!