Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

Hi JustLa,

I think you've made a sensible and brave decision there! The scans are so hard to deal with in the run up that if you can limit the ordeal to fewer appointments it has to help! Six weeks is also the bear minimum for a heartbeat so you'd very likely have to keep waiting for your reassurance. Good news is that when you do see it, your chances of going full term ar over 95% which is super encouraging!

I'm not sure when I will get to try again, possibly at the end of the month if I can get out to meet DP while he's away for work, or it might have to be Aug-Sept. We will get there.

Love to all x

Hi all, thanks for checking in with me. justla you're a brave woman. I think you made the right decision, but I definitely wouldn't have been able to resist! Fx for next week - what day is your scan?

poppy I'm so sorry you're out. Can totally understand the frustration of not being able to try for a while!!!

I'm on day 4 of 5 on letrozole. No side effects whatsoever. Hoping my little eggs are getting their skates on! I've got a scan on Monday to check for follicle size. That will be day 11 of my cycle, but I don't normally ovulate until day 20 so not expecting to see anything conclusive.

Everything I've read suggests that letrozole may bring ovulation forward by a few days, but it doesn't for some people. DH goes away on CD14. Assuming FW is 5/6 days, if I can ovulate even 1 or 2 days earlier than usual we might have a chance if we have sex on the day he leaves. It's really clutching at straws though! At least I'm hoping the scan will be useful for Mr S to check that everything looks in order in there.

Hope holiday is good starshine!

Thanks for your support Harriet and Poppy! 😊

Really hoping you get to try again soon Poppy, those long periods waiting to even try can be taxing plus always nice to go visit DP while he's away I'm guessing 😊 Is he working far away from you?

Harriet, it's exciting that you're trying to ovulate early. Great news that you could get a couple of goes in before he leaves! It took me 2 'boinks', one on day of ovu and 1 the day after and I'm 38 so wouldn't be at my fertility peak! Really hope it works for you 😊
My scan is next Monday, Sunday night is going to be an interesting one 😵

Xxx

Hi all.. Not sure I've meant anyone before on this thread but I used to be on it a lot. I had 3 missed miscarriages and finally after 9 months with Mr S and pred, levo, intrallipids and superovulation (2nd cycle) I had a pregnancy that went the whole way- had a beautiful, perfect boy who is now 20 months. I'm now 41 though and in Jan I had another miscarriage (took the pred late but found out it wasn't meant to be anyway as tested .. So many be I'm too old now). I just wanted to say hi and offer to share any of my experience of anyone thinks can help as I went through a lot but got lucky finally. I'd also love to know if anyone went through it all twice at 40 something .. I think I might be crazy to try all this again.. Not sure I have he strength for a 6th pregnancy at my age after all this ... But can't quite say that's it xxx

Hi Rosa,

Congrats on your success and thanks for sharing it ⭐️
Sorry to hear you had more bad luck after that.
It's absolutely exhausting to go through over and over, emotionally and physically.
I had a 5 day break from pred in very early pregnancy as tested too early and thought I was out for that month, I'm now around 6+4 and going for scan soon, praying that hasn't negatively impacted.

It's a tricky decision you have, as it depends on so many personal things- Are you feeling strong enough... How much does having a 2nd child mean to you...etc. Many women have successful pregnancies into their 40's. Have you spoken to Mr S about what he thinks your chances of the next being a good one are?

And can I ask what levo is?

xxx

Thanks JustLa... I was also a few days late starting pred with my successful pregnancy, so try not to worry. Mr S says over time it has an accumulative effect. I was on the complex prog and also had hydroxy until the month before I conceived for 5 months.
Levo is Levothyroxine - for thyroid. Mr S discovered it was slightly underactive.
I'm shattered from it all in every way but would do it all again if knew it would end with another happy healthy baba. If I'm really honest, it's more for the son I have so he would have a sibling, but of course I would instantly love him/ her just as much if we were lucky enough. If I became a bit 'broken' from the process though I don't know it's fair on my son, DH or myself! Such a gamble. I think the odds after 4 miscarriages and at my age are 50:50... Literally like flipping a coin .. Just can't decide .. Meanwhile I'm not getting any younger ..
I will keep everything crossed for you... Really hope this is it :) xxx

Hi all,

Back from holiday now- had a lovely time! But really wish I'd just thought not to take the steroids this month and not really try as taking all the meds and still thinking about DPO kind of took the edge off the relaxation! Currently 10 days DPO and really can't even be bothered to do a FRER tomorrow as am certain I am not pregnant. Back to feeling rubbish about it all- now been two years of ttc and 4 cycles on meds.

Have tried to catch up on the threads. Hope the super ovulation is going ok still harriet? Hope it brings ovulation forward for you for the right time, can I ask what u do about work and going for the scan? Do your work just give u the time off? I really need to have a scan this months with dr s to check ovulation, but for me, with travel, it's a whole day out of work and for my work it's really difficult to cancel things last minute etc.

How are you doing poppy? Sorry you e been through a rough period- it's so hard all this pressure!!! Hope you can get to visit DH when he is away at the right time!

Justla! You're doing fab!!! Scan must be this week? Well done you for holding out until the seven week. Hope you're feeling ok as you can be.

Bala- really hope af has now arrived!

Hi rosa! Completely get where you're coming from. I have a 3 year old DS- who is my world, I worry about having further miscarriages and not being able to keep it together for him, but would really love him to have a brother or sister. I already find by about day 7 on steroids I get really ratty and fell terrible for snapping- luckily it then seems to improve again. Right now I feel I have to keep trying, but I really think there will be a point when I just have to call it quits.

Sorry for the essay ladies! Hope you all have a good evening x

Thanks Rosa and Star!

Rosa, I wonder whether a couple of months break from it could help? Maybe a getaway if possible and just forget about it for a little while? Easier said than done I know, but it's difficult to make decisions when you feel pressure (if you're feeling it?) You don't want to break yourself, I agree!

Star, I'm so sorry to hear your holiday wasn't as relaxing as you were hoping :( Make sure you treat yourself to whatever floats your boat to keep your spirits up.
Had a little pale brown spotting earlier this week- was small, pale and dissapered quickly but sent me into a panic spiral. Scan this week so will see 😵

How are you all doing Poppy, Harriet, Bala and everyone?

Xxx

Hi ladies,
It's been a while since I've posted, there are a lot of new faces since I was last here.
Sorry to see so many of you struggling and having to go through the hell that we do.
For those of you who don't know me, I had 4 mcs (one chromosomal on pred). I finally had a successful pregnancy and my little girl arrived in October

Anyway, I found out on Wednesday that I'm pregnant again (absolutely shocked as I don't normally fall pregnant on the first attempt, but here we are. Anyway, I haven't been on the right dose of pred - I had some tablets left from the last pregnancy so took 20mg for 8 days after ov, then have been taking 10mg since as I was running so low. Seeing DrS tomorrow (already had appt booked to discuss ttc) so will see what he says. I feel strangely calm about this pregnancy, only time will tell if it's mean to be... in the mean time I'll hope and pray that it is.
I hope my story brings some hope to some of you ladies, it really is a shit storm going through all this. X

Hi everyone. Welcome back seeking and rosa. Great to hear hopeful stories! And congrats seeking on your pregnancy - justla and I are also seeing Mr S tomorrow!

I'm having a follicle scan as I took 2.5mg letrozole this cycle in an effort to bring forward ovulation. Just had 4 days away which was total bliss. Not really feeling hopeful that ovulation will be early enough for DH but we will see!

starshine sorry youre not feeling positive about this cycle but glad you had a good holiday. I'm lucky in that I can usually arrange to work from home on days I have appointments, and just make up the time before or after. I'm a lawyer so work round the clock anyway.

Hi rosa, good to see you back!

Omg seeking congratulations! Such brilliant news.

I'm afraid I've been awol from the thread for a while. I've been working full time, have a building site instead of a home so staying with mum and edie is still only 14 months. I'm 38 weeks on Thursday so if I say I'm feeling overwhelmed it's an understatement

What was your appointment Harriet?

Wow Snoopy, you're so close to number 2!!! No wonder you're feeling overwhelmed with all that going on! Are you on mat leave now??

I've just got back from my appointment - got to say I'm a little disappointed. The prices have gone up a lot! And he's changed all the treatment plans. I was on high with Tallulah, which was one intralipids. Now it's 2. When I questioned him, he just said well you should have had 2.
He said I should have been re-tested for tnf-alpha and wants a thyroid check done. He also alluded to me moving onto the complex plan because we don't know if my tnf-alpha has changed. Which is 4 intralipids at £300 a pop!
His consultation fee has also gone up from £220 to £300! I feel a bit like it's turned into a money making machine

Hi everyone,

Hope you're all doing as ok as can be expected, amid all the anxiety and stress!

Glad to see some returning characters; thanks for your updates Seeking, Snoopy and Rosa! Glad to hear your success stories albeit after difficult journeys. Seeking - congrats on your BFP and well done for feeling calm.

Rosa, keep your chin up, early 40s isn't so unusual, really is it? You have a good chance and you know you're fertile.

JustLa, sorry to hear about the spotting, it's just the worst feeling. But it's gone now and that's important. I read a study on the relationship between spotting, bleeding and miscarriages and it only made links when the MCs came within 3-4 days of spotting. It also showed that most women who had spotting were perfectly fine.

Welcome back Starshine, sorry to hear you're having a rubbish 2ww.

Harriet, I don't know how you deal with this on a lawyer's schedule. I'm a freelance writer and I think if I had to do the office and commuting saga on top I would go nuts.

All, I spoke to my endocrinologist about the early spotting and he said he wants me to have a luteal phase progesterone measurements taken to see why my luteal phase is shorter since my last MC. He also told me to split my dosage so I take half in the morning and half at night, to help with the weight gain and mood swings.

Meanwhile, I am feeling ok this week and really working on my mindset. I can't keep freaking out every time I see blood. I'm going back to my therapist who I saw after my MCs because my anxiety about TTC is turning into OCD and I need to nip it in the bud. Being aware of it is a large part of the battle though, I think.

Friends of mine found religion helps them focus. I am agnostic, but I have found thinking about the Law of Attraction is quite helpful for me; keeping my thoughts positive and focusing on a happy outcome. Very difficult, but I do find it calming and it cheers me up.

Might get to see DP in time for next O day, but not setting my heart on anything.

How did the scans go Harriet and justla?

Congratulations seeking ! That's wonderful news! What are you going to do about the treatment options? That does all sound like a lot of money! I didn't need the intralipids so haven't had to think about that.

Wow snoopy! So close for you now and it sounds like you have so much on! Hope the building work is finished soon and little one arrives safe and well

Poppy, what a lovely message- I love your outlook- well done you and I definitely agree that changing (mine- not yours) mindset is very important! So easy to get consumed by this! I have just gone back to acupuncture to try and help with this and am not focusing on a 10km run in September. Is DP away now? Is it the steroids that you're splitting? Good they aren't looking into what's happening and why you've had the spotting.

I really struggle with the appts - takes me 2 1/2 hours to get to the clinic and I work in clinics myself so can't cancel / change things unless they're planned in six weeks in advance- which doesn't work well with all this. Feels like an additional stress trying to juggle it all. Hope work has become a bit less stressful for you Harriet?

How are you getting on Bala?

Thanks Starshine, it actually dawned on me when I read an article about the after effects of miscarriage and a significant number of women develop anxiety, OCD, depression and even PTSD. For about 15%, this can go on for three years or more. I think I'm at the mild end but I've definitely become very anxious and emotional since my second one.

Yes, DP is a five hour flight away for work :( However, as we are not going to see each other for several weeks we are trying to break it up by getting me out there for a bit and it looks like it may coincide with O day. Fingers crossed!

Poppy my literal phase has been 9 days every cycle that I've monitored since having Tallulah. But this cycle i decided to use left over cyclogest from 2dpo- 10dpo, then stopped to enable AF to come....well it seemed to have worked a treat! Hopefully it will help you out too.
Sounds like your making positive steps to help with maintaining a certain level of positivity. It's so bloody hard though.

Star I'm going to just have two lots of intralipids, as per the new high treatment protocol. I typically miscarry early so providing I get to 10 weeks I think that treatment plan will be enough.
Chromosomal loss always sits at the back of my mind, because I know I can have all this treatment and it wouldn't make a blind bit of difference if there was an issue. And we've gone through that before.

Hi everyone. justla hope it went well today. I was looking round at people in the waiting room and wondering if you were there!

seeking I was having a follicle scan. Interesting results - turns out I have multicystic or multifollicular ovaries. Apparently different from polycystic and linked to hypothyroidism. Mr S said they have no impact on ability to conceive/likelihood of mcs. Anyway, I had 20 follicles on one ovary and 10 on the other! Most were around 6-9mm but one was 18mm. This was day 11 for me and I don't usually ovulate until day 20, so looks like the letrozole has done its job. I wasn't expecting Mr S to offer a trigger shot but he did so will ovulate in the next 36 hours, 7 days early.

Obviously ive been googling and some say the follicle should ideally be 20-24mm for optimal results. This one might grow 1-2mm before it's released so could get to 20mm I guess. I asked mr s if it would be worth waiting another day before triggering but he said no. Does anyone know about this stuff?

Anyway, poppy therapy sounds like a great idea, and well done with the positive thinking. We could all do with that I'm sure. Good luck with scheduling a trip to see your DH! Wish I could do that with mine. What does he do?

starshine did you test today/will you tomorrow?

seeking I sympathise with the prices! So broke right now...

Harriet, I don't know much about follicle size but regarding quantity I heard anything above 15 is supposed to be excellent in terms of indicating good ovarian reserve and 10 is the upper end of normal. Sounds very encouraging! How clever that you can ovulate a whole week early, this is exactly what you needed, right? If I recall you were saying 4/5 days would be borderline.

DP works in operations for the resources sector so lots of weird and wonderful travelling for us!

Yes, updates please, JustLa and Starshine!

Hi all,

Hi Seeking, congrats on having a beautiful daughter and also, fab news that you're pregnant again!

Hello Snoopy too! Nice to hear from people in all different stages of the process :) Congrats, you're nearly there!

I couldn't believe it today, I went for the scan and felt so numb... kept going over the steps I would have to take if I got the same bad news that I've only ever had. However, after approx 3 seconds of probing, Mr S quickly and confidenty stated 'Baby's Fine' ... I cried like an idiot and without further ado he flicked on the heartbeat audio and let me know that everything looked perfect!
This is as much as I can hope for at this stage, good news :) But only the first hurdle. I am very aware that so much can still happen, especially this early on... I am thinking chromosomal in particular (Seeking you also mentioned this) so just happy to have made this checkpoint and hope the good news continues :)

Poppy, thanks for that lovely honest and open post. It makes total sense that you're a freelance writer as you're always so eloquent! If your fear of blood a direct result of the MC's you've been through? I think it's amazing how our minds find ways of processing things by using little phobias and obsessions instead of crumbling... so well done to your brain in a way? Unfortunatley it's effecting you so you're absolutely right, nip it. It's great that you see the problem there, as you said being aware is such a big part of the battle.
I think being on and off pred must really with anxiety, which doesn't help.
Thanks for the info on spotting, very comforting indeed! Hope you manage to make that date work with DP 💫

Star, I'm 3-3.5h away so know how you feel! Would love to try and get some less important things done closer to home but not sure it's worth it. Has acupuncture worked for you in the past? I could do with relaxing a little more lol

Harriet, I wonder if I saw you there?! It was sooooo busy in his waiting room this afternoon. I was the one looking incredibly nervous! It's so exciting that you'll be ovulating soon, great that you get that extra chance to try!

Hope everyone else is doing ok?

Xx

Justla that's great news!!! Sonpleasedd the scan has gone well. I know you'll continue to worry, but as you say, the first hurdle is done and all positive so far!

Harriet that's really interesting about the scan- glad the meds have done their job and hopefully ovulation will now be the right time for you this month- fx!!

Haven't bothered testing this month, my temp has dipped this morning and AF due today. So another month gone, but I feel a lot better about it this month. This month I can get my FSH, E2 and progesterone checked with the scan mr s wanted me to have as am not away when the tests need to be done. On to the next cycle!

Yay justla so happy for you!! I was there at 3.30ish, by myself in a pink tshirt!

starshine sorry about this month but glad you're feeling positive. Why are you having the extra tests?

poppy that's good to hear about reserve! Mr S seemed to think it was neutral rather than good or bad. I think it is linked to hypothyroidism so probs not really a good thing, but at least it's not going to cause me yet more problems. Your DHs job sounds cool! But I know I miss mine loads when he's away for work, and it's so frustrating when ttc.

Hi snoopy good to hear from you and congrats again!

Hello! Brand new to all of this! I'm with Dr S, starting treatment for Complex NK Cells on next cycle in August (scary!)

But also having an issue with newly diagnosed MTHFR Homo version of the gene defect that stops me absorbing Folic Acid and means it basically poisons me...

Anybody know where and what prenatals there are that contain Folate?

Welcome luna!