Immune /natural killer cell treatment when ttc or pregnant (aka the 18th 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

Hey Drttc - i would have thought you d be fine for an abdominal scan and i would def ask them to try that first (i had one at just under 8wks with ds and they could see eveything fine).

Time must feel like its going so slowly. Hoping you re managing to keep yourself distracted. Everything crossed for a reassuring scan on fri.

Thanks Hula! Time is in slow motion :( Life is completely on hold. I feel absolutely rubbish and I have no idea if this will leave me right where I started (and more broken than ever). Having a really tough time right now.

Drttc that's good that you've a scan on Friday hopefully it'll put your mind at rest. It sounds like you're still having symptoms so that must be a good sign. It always feels like such a long wait but Im hoping this week goes quick for you.

(My attempt to make you laugh... I always think the 'probe' for the internal scan looks like it's been modeled on Peter Crouch's penis!!!!)

Drttc, Drs scanned me internally at 8 weeks and then at the fateful 10wk scan tried abdominally first.
I'm sure at 9 weeks they'll be able to see everything fine. I wouldn't want 'Peter crouch' penis probe in me in your position. (Billy)
Hope it all goes well though, I'm sure all will be fine.

Thanks ladies- Hahaha oh okay the Peter Crouch penis thing is making me laugh!

Hi ladies,

You seem to have a lovely group here. I've been reading your posts and sounds like you are going through different emotional roller coasters because of the same annoying problem.

I wanted to ask, how quickly did you fall pregnant under Dr shehata's treatment? The reason I'm asking is because I think the treatment is messing up with my fertility (could be paranoid or just looking someone to blame other than myself for a change)....
Also any tips for what worked for you when trying... Other than the obvious?
It's been 6 month now and I'm getting impatient, especially after conceiving in months 1 fist time and 3rd months second time. Getting paranoid 😔

Hi tina, welcome but sorry you find yourself here.

It took me two cycles. My first cycle was some horrendous 50 day nightmare. I think the steroids interfered with my ovulating because I took them as soon as I had a positive opk. On the successful cycle I waited 72 hours after a positive opk, because I had heard it can take that long to ovulate after a positive surge, so the steroids didn't interfere and it worked!

What are your cycles like?

Hello Tina! Welcome! I think almost every woman on this thread has had the same worry. I fell pregnant 1st time three times... Since joining Dr S it took me 3 months to conceive the 1st time (6 week miscarriage), and 6 months to conceive the second time. Like you, I was very concerned. Because of that, I turned to Super Ovulation which ended up working first try for me. I also like feeling more in control as I could see my follicles prior to ovulation and keep track on how my body was reacting. Definitely be careful not to start the steroids until you know you've ovulated.

My sickness just crossed over from nausea to actually throwing up for the first time tonight. Happy yet slightly traumatized at the same time!

Oh also- preseed is a winner!

Hi Tina,
Snap - I'm also on cycle 6 and no joy. This is the longest for between pregnancies and I'm getting anxious about it too.
Seeing DrS at the end of the month so will ask then. Think SO is my next step. Oh and I'm going to ask about an AMH test. My NHS consultant refused!

Seeking- when I asked my GP about an AMH test they had someone take me aside and say 'In the UK things are different from how things are in the America. We don't do this 'AMH' test you're talking about.' It felt so patronizing

Thank you all for your responses.

Snoopysimaginaryfriend, that's a useful tip. I've actually started taking pred 3-4 days after ovulation, because that way don't have to take 10 before I can do the test. It's probably naughty and I need to check with Dr Shehata, but I'm not keen on taking steroids just for the sake of it. My cycles were usually like clockwork 28 days, but now shortened 26/27 and really heavy, which is another reason for concern.

Drttc, congratulations and fingers crossed for you and all the ladies on this thread ( including myself 😉). I'm an absolute control freak, probably part of the reason it's taking longer this time is because I'm getting stressed out and impatient. I'll take a look at the super ovulation kit, sounds like this might be better then boots ovulation sticks I'm using. Got Preseed already, thank you.

Seekingmiricles, good luck! I'm seeing dr Shehata next week, so will ask him why it might be taking so long this time and whether he thinks I should try something in addition to what I'm already doing. I will report back. Haven't heard about Amh test, but will ask him about it too.

Thank you ladies, will keep you posted on the progress.

drttc silly me, just read about super ovulation, it's not a kit, sounds more serious, will defiantly ask dr Shehata about that.

The thing is they do the AMH test when you go down the I've route.... My consultant just said 'but you're not infertile'..... Well I'm not bloody pregnant either am I!!!

Hope your appointment goes well Tina, let me know what he says.

seekingmiracles I'm with you, feeling frustrated, but getting little support.. Will definitely let you know how the appointment goes.

Hi Tina I'm so sorry for your losses, we all understand what you're going through. Welcome to the group, I'm sure you'll find it brings some support and comfort.
I also worry about the treatment sometimes! My first 2 pregnancies were 1st times too (was having Chinese herbs and acupuncture, and had stopped eating gluten, sugar and dairy) and got to 8.1 weeks - they were both missed miscarriages so happened at 14 weeks and 10 weeks. I had no bleeding in those pregnancies.
It then took me 6 cycles with the third which was after having the biopsy with Dr Quenby (My test was normal-but I started worrying that the test had had a negative effect, it was pretty intrusive and painful) - that pg ended in a chemical.
Then I started the DrS treatment (complex NK cells and thyroid antibodies) and when wasn't pg by the 5th cycle i did Super Ovulation, and the next cycle did SO and got bfp- chemical at 7 weeks.
But then didn't try for 1 cycle, my treatment then changed to Hydroxy because I found the Prednisolone was making me very moody. We had to not try for 6 weeks to let Hydroxy into system. But we kinda didn't try but didn't protect (and didn't think we bd at the right time) but I got bfp - which also ended in chemical.
I worry that mine are now chemicals! I'm a bit skeptical about taking asprin everyday and have stopped taking this last cycle (mainly cause i dont think ive ovulated).
But it's also interesting that all or most of us got pregnant very easily the first few times - much quicker than the average couple. and there is that theory about being super-fertile and the uterus not being selective enough. So maybe the treatment corrects that?? I guess DrS would say it's the stress etc which Im sure must play some part.
Sometimes I wonder if it's best just to go back to Chinese Herbs and stop the Dr S treatment! But lots of ladies have had success so gawd knows!!!!
I had the AMH test done with Dr S - mine wasn't that great - 3.9 - but he said normal for my age (42), but I've also heard that the part it plays is debatable (like everything!). He said he had a patient who had amh of 1.00 and got bfp.
It's all very confusing!
Good luck with app and yeah let us know if you get any interesting info xx

Hi all!

Welcome Tina, hope you find this group a good place for support and advice. I got oregnant first month of trying, and then again 6 months later, that was october 13. Saw Dr s in July 14, started SO and got pregnant on the fifth month (jan 15) so was a long time between 2nd and 3rd time. Sadly that ended in mc at 6 weeks. Added hydroxy to my treatment plan and got pregnant naturally last May - I'm now 38 weeks and waiting to pop over the ne t week or so. I'll never know if the treatment made a difference but I followed his plan to the letter and didn't mess about with taking stuff at different times/ not taking stuff - my opinion was he has been doing it a long time with lots of different ladies - he knows better than me.

Drttc - a worrying time with the bleed - the last thing you need on top of the general anxiousness of early pregnancy but the only thing you can do us remain positive and I'll be keeping everything crossed for you.

Snoopy - I didn't have a baby shower at all. I was so scared of jinxing it I just couldn't face having one! Even now I'm still scared if accepting presents for the baby.

Hope everyone else is doing ok !

AFM - 38 weeks tomorrow, have last scan on Friday where I think they will give me a date for induction (probably next week) - getting very nervous but also excited. I really can't believe I've made it this far, just a little bit more to go. I said to DH last night, when he arrives I think I'll just bawl my eyes out not believing we actually did it.

So happy for you Sunny!!! It's all just so exciting !

Billy- you've really been through it :( Did you say both the MMC ended at 8 weeks? I do remember thinking/feeling as though perhaps the treatment makes you take longer to get pregnant BUT it's also getting your body ready for a 'normal' pregnancy by being more selective.

I've only had my FSH done and it was terrible for my (9 point something)! Which is why I wanted my AMH done too. It added fuel to my wondering if my eggs weren't of the best quality... But once again, with AMH/FSH it seems they're more concerned about whether you're getting BFP's.

I've not had any bleeding or spotting (knock on wood) since the 5th (and that was brown spotting) so I'm hoping that's a good sign... I also got Dr S report from Saturday this morning and the bleed is a bit smaller than I thought. I thought it was close to 4cm and apparently it says it was 2.5cm... Of course I don't want there to be any bleed, but at least it's a smaller starting point.

Trying- are you lurking? How are you?

Yes Sunny that's very exciting indeed! Thinking of you and look forward to hearing your happy news xx

Drttc I'm really glad to hear you've not had any bleeding for a week, that's very good news! And that the bleed isn't as large as you thought. How are you feeling today? Have you been resting? Not long to go now before your scan.
Yes both my first MMC ended at 8 weeks and 1 day so I was always suspicious it was more than just chromosome! Second pregnancy was 2 cycles after m/c and first time again. I couldn't believe my luck - then couldn't believe how unlucky!!! Then after that bfp taking longer and chemicals

Im not sure I trust FSH as mine was 17.9 in June 2013, also my LH was 22 and I got preg first try in the Aug! Also both have now gone down to normal levels, maybe due to acupuncture. Who knows in this game eh!!

I'm after a bit of advice ladies...
Im not sure if I should SO this next cycle or not. I had thought I'd wait a cycle to let my cycles settle and see if things get back to normal. And dont want a repeat of last SO where I didn;t have any mature follis and thin lining so wanted to check Im stil ov round cd 12-14 (I seem to ovulate around cd 19-22 the 2 cycles after a m/c). But I emailed Louise today and she advised to SO next cycle. Of course Im keen to speed things up and impatient and keen to follow their advise but still wonder if it' best to have a natural cycle so I can see whats going on. Ive asked my acupuncturist so will see what she says but if anyone has any advise I'd be very grateful.

Hoping everyone is doing OK, and hi to anyone lurking xx

Hey guys!

Sorry not been on for a bit. Been feeling really down and anxious re upcoming cycle. I feel like I am all doom and gloom and haven't had much to say except stress and worry which isn't very great for u guys to hear! I'm terrified this isn't ever goin to work for us and I'm petrified where this will leave us after Argc cycle. I can't seem to shift it. I need some hypnotherapy or something! I don't feel like myself and all I can think about is what I'm going to do if this fails again. I'm usually a positive person and for some reason the 5th just sucked it all out of me. My hope seems to have gone :(

I had my intralipids on Monday and on 25th have a tnf retest. Regardless of levels they will now start me on 5th Feb (may need one more intralipid if still high but still have that date as a start). So the first 2 weeks I just take a spray to switch me "off" and then I move down to London to start the daily scans and bloods. Let's see how it pans out...when I used to "only" rm I thought I could keep going forever until one worked out esp as I got preg so easily...but now with Ivf too I feel like it's a loosing battle and I don't know if I'm wasting my years trying for something that will never be mine :(..everyone else seems to have happy endings which makes me think it works out but also makes me wonder if there is something really wrong with my womb!!! .if Argc doesn't work but I have some frozen blastocysts in going to see mr s again as I've not had hydroxy which is the only thing extra he does. I did have hydroxy with my first ivf but only started when ivf (not 6 weeks before) as it was for another reason the ivf clinic found (a pa1 mutation with mr s and Argc don't do)

Just caught up with everyone's posts-

Drttc that's great u were sick!!! And even better bleed smaller. Good luck for Friday I'm sure all will be well

Billy sorry ur cycles r being silly! I'm similar to u in that I also had my 3mc be 6 and then 9 and then 6.5 weeks and the last 2 have been 5 then 4.5. it's a sign of worsening immune system....Shorter and shorter pregnancies. My tnf was never an issue before but recently has become one...me and dh have also had endless rows about alcohol pre Ivf cycle and part of the stress is us knowing when we start. We been waiting since October but my tnf is being stupid!!! him abstaining on holiday in October was a waste of time as sperm is affected for 3
Months-so a wasted row! He had stopped now as our cycle is so imminent so he will be totally clean for 2 months pre ivf. Thank god! But I have had to bit my lip and not say much as he's so close to giving up and I think the more I nag the more likely he will just say he's stopping as he's close to the edge already.

Tina welcome: sorry it's taken u longer to get ur bfp. I also have 2 bfp in 1 month trying, and then one in 5 months and then nothing. Turned out dh has v v v serverly low sperm and it's a wonder I ever managed those 3 preg! I think getting dh sperm tested is def worth while as I thought it couldn't be possible after 3 quick preg and wish I hadn't left it for 10 months like I did. No doctor thought it was worth doing and it was a LeAD ballon when we were told he had only a handful of sperm floating around. Magically we managed another bfp in Nov with a count of 30000(up from usual counts) which makes me think I'm hyper fertile too! It's not normal to get preg with that count!!!! (Although miracles can happen). I hope u get ur bfp soon, super ovulation seems it helped some ladies on here.

Ugh seeking, I know again how frustrating waiting for bfp is. And then it's just anxiety after it! I'm sure it will come soon u have no reason for it. When r u testing this month? Maybe cyclogest made u too selective and stopping it will help? I hope it's sooner rather than later and yes have a baby shower and a really extravagant one at that!!!

Sunny that's wonderful news! All the best and can't wait to hear little one here

Snoopy - glad things t going swimmingly for u :) sounds like ur a bit more accepting of it all. Enjoy it :) and maybe have a baby shower!

Hula glad ur cycle is behaving now! How r u about trying etc now? Hope the anxiety and worry is calmer and ur enjoying dtd without too much timing!!

Sorry for mammoth post!
Xxx

Ps re amh they do test it for Ivf as they base how much meds to give you so they don't overstimulate u. Mine is actually above average - thank god for one thing in my favour!

trying don't worry about venting here! This is our safe place to say things that maybe even our other halves wouldn't understand. I think it's only natural to be apprehensive about next month after everything you've been through and I completely understand your thinking ahead to what happens after this cycle because you have a logical mind that needs a back up plan. All you can do is take really good care of yourself and we're here when you need us.

I agree Trying! I've felt so guilty moping on here but that's what it's for. We pick each other up! It's completely natural to feel the way you have. Just remember- it will happen! You can get pregnant, you're getting the best help, you're in this! Remember that ARGC lady you mentioned who said her friend had 5 miscarriages then got her rainbow? And I always remember the 42 year old who I've followed on Instagram - she had SIX chemicals this year! And now she's hit the 12 week mark with her rainbow. It sounds amazing but it does happen! I actually follow another girl who did IVF with intralipids and immune treatment (she's about our age with 6 chemicals as well) and she now is about 13 weeks!

Actually the IVF one had 7 losses! She has a YouTube channel if you fancy having a look:

Www.YouTube.com/toribabychannel

Aw thanks guys both ur posts already made me feel better....literally feeling like it can happen u guys r proof of it. Love ur stories drttc I'm forever searching for them!

Maybe I will be moaning on here

These 2 weeks post intralipids are being soooooooooo slow! Wish time would hurry the hell up!! Ideally tnf needs to be below 30, I was 33 when started the humira and now at 37?! Bloody stupid! Let's hope the intralipids have lowered it somewhat. I'm back to no coffee no alcohol no gluten but can't shift the no sugar!!!!

X