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Conception

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Immune/NK issues - aka Pred Thread no.20!

960 replies

harrietm87 · 18/07/2017 11:42

Hi all, thought I'd get the ball rolling on the new thread.

Welcome all with immune/natural killer cell issues.

It's been a while since a new thread so thought it might be helpful if we all added our stats:

I'm harriet, age 30, TTC#1.
3 mcs (2 at 5 weeks, 1 mmc at 9 weeks).
Hypothyroid and high NK cells.
Cycle 2 on pred!

OP posts:
Thread gallery
14
Tee4me · 31/08/2017 07:49

Morning girls!

Glad all went well at the clinic Just/Seeking! Lovely you met.
Amy do you feel like Dr S would be supportive if you said you've considered his advice but would like to start the plan anyway? My sister had 4 consecutive miscarriages, her next pregnancy was successful after starting baby aspirin. The Heparin might be all you need to see you through, but I can totally understand how unnerving it must be just to 'wait and see'.
Harriet what is it you do for work?? Hope you have a better day today.
Poppy so glad you're feeling less anxious, the whole Zika thing is a minefield, but the general advice out there seems very over cautious to me. Happy bonking!!
Sheepy we will be cycle buddies this month, I'm currently CD6!
Luna sorry for the BFN, how may dpo are you? You haven't been on the Pred for 10 days yet have you?! FX you're just too early.

I'm starting a castor oil routine today. Sorry for TMI but I had a very clotting AF again this month. Was YouTubing self fertility massage and came across loads of tutorials about a castor oil ritual you can do between finishing AF and ovulation. Supposed to help your uterus prepare for pregnancy, and involves relaxing for half an hour with an oiled cloth and hot water bottle on your lower tum. If nothing else it will be nice to just have that time set aside to relax/practice some mindfulness. Also have acupuncture this afternoon. Throwing everything including the kitchen sink at this cycle!! x

LunaB · 31/08/2017 07:24

Oh harriet, that's a very late night! You must be very important!! Glad DH is back!!

Amy, ouch indeed ££! So how did you wake up this morning? Decided to go with the advice, or start the protocol anyway?

I'm feeling very grumpy this morning, had a massive Pred mania surge and insomnia all night, and woke up to a startling white BFN and have convinced myself now that I'm out this month (low mood means I'm unable to think of any other result appearing over the weekend, and that I'll ever be pregnant ever again, and that we will never find world peace, and that I'll never grow my hair as long as I'd like... etc.) 😭😪

Anyway... test again tomorrow, chin up etc.

harrietm87 · 30/08/2017 23:37

Wow amy I'm really surprised by that but guess mr S knows best. Fingers crossed for you - yet another agonising tww. Glad he was nice to you at least!

seeking you're so far along now! So happy you met just in real life!

just the scan sounds extremely thorough and I'm sure the heart thing is nothing to worry about. Did he say whether there's any chance it could
correct itself before birth? I think that happens sometimes. Hope you're ok - sounds like everything else was totally perfect.

And poppy I'm delighted for you too - sounds like the dr you saw was really sensible. Such great news - go forth and get bonking! (Not blinking, thanks autocorrect...)

I'm really pissed off cos I'm still in work right now and the end is not in sight. I'm so knackered and I had to miss my NHS scan, and they couldn't reschedule it until next Wednesday - a whole week! I so wanted the reassurance. My last one was last Monday so over a week ago. Realistically there is no reason to think it won't be fine (other than I've never got this far ever, and I've got no symptoms apart from tiredness and orange cravings...) but I'm still worried. Might book a private one but also know it's a waste of money as it won't change anything really anyway. Really hate my job sometimes. At least DH is back from his travels tomorrow.

OP posts:
PoppyJ1 · 30/08/2017 23:27

Hi Amy, sorry I missed your post cos I must have pressed send around the same time! I can imagine you are very upset by the advice as it does indeed sound like it was delivered "scientifically" which just doesn't really cut it when it's YOUR baby. But he will have his reasons, as the others said. I believe Drttc was concerned for the same reason, hadn't taken Pred before BFP, but all is well now. You're in good hands so have faith.

Amy2017 · 30/08/2017 22:30

Sorry, yes, Fragmin is a blood thinner injection... five quid a pop, per day for 9 months! Youch on all levels!

Amy2017 · 30/08/2017 22:28

Thanks Luna, what a freakin' mess I am!!

I'm 4+1 today, and booked in for a scan in 2 weeks with Mr S at which point I'll be 6 ish and hoping for a heartbeat. What a nail biting, excruciating wait this going to be.

Amy2017 · 30/08/2017 22:26

Seeking - I told him I had ttc this month thinking I would try just the blood thinners, but that I had chickened out and was here to get all the drugs. I was certain of my decision.

He said from a scientific point of view, he'd suggest I don't take the immune therapy now because apparently they have the most effect when they're taken right from conception. If I have another MC, we won't know for sure whether the pred helped or not. And if I take pred next time and lose that, then the root cause of my MC might be something else entirely. Trial and error.

I initially found the idea of doing fair tests and good science on my future potential baby absolutely intolerable, sobbing in Nero. I'm not thinking rationally though, I'm highly emotional right now. I really lean on my partner for his help here.

They said I could go for it anyway, they advised against it, but I can always ring them tomorrow and get a drip asap... but the effectiveness at this point is questionable. Mr S said I should save my money!

He was absolutely lovely today btw! Like a completely different dude.

LunaB · 30/08/2017 22:11

Oh Amy... that is most unsettling and I totally feel for you. How many weeks are you, literally BFP the day you told us? That's early for him to say not worth it; but he will have his reasons... remind me what the Fragmin is (sticky blood, or is that the Heparin?)

How do you feel now? What's your safe date; the date by if you see a heartbeat you'll feel better? And when is your first scan?

Seekingmiracles · 30/08/2017 22:07

Gosh Amy that seems like weird advice to me. Plenty of us have had success having started taking pred at bfp. No wonder you had a little cry, I bet you feel like you're on a crazy roller coaster!! Was his advice based on your own concerns about the plan & worry about the drugs? It kind of sounds a bit flippant to me, I'm really surprised he suggested it to be honest. Of course it doesn't mean that this pregnancy will fail, I really hope that the fragmin is enough to keep it going and that baby grows nice and strong.
Are you going back for a scan??

PoppyJ1 · 30/08/2017 21:50

Thanks Luna and Lara. Yeah, feeling a lot less like an irresponsible idiot now!

Yes, Lara, my DH definitely seems weirded out by MN too! I also told him I only use the one thread that's specific to the meds I'm on; he seemed relieved Grin

Amy2017 · 30/08/2017 21:49

Thanks for checking in on me, ladies!

Just - sounds like nothing to worry about with the heart, just an amazingly thorough scan. Good to know.

I looked around the waiting room, but I didn't see any ladies matching your description Seeking and Just. Sad! Maybe I missed you because I left early...

So yeah, I left early because I didn't get any intralipids today. After speaking with Mr S, he convinced me to ditch the pred, pessaries (no front or back choice for me!) and intralipids... but he did say I should start on the Fragmin injections daily. (I've just taken my first stab. Surprisingly easy, but burny afterwards.)

I was a bit shocked actually, because after being skeptical on Monday, I'd got myself psyched up to go on the plan and get me an awesome Moonface. He told me since I hadn't started the pred since conception, we should just see how this pregnancy goes and if it doesn't stick, try the full plan next time.

My OH and I sat in the Nero downstairs and I had a little cry, wondering whether I should have started the pred sooner, really frightened about what's to come.

Argh. I'm trying to keep positive and put some faith in the Fragmin. It's never straightforward, is it.

Seekingmiracles · 30/08/2017 20:26

The nuchal with the professor does sound awesome!! So glad he was so thorough and reassuring!
I don't feel tiny... I've put on loads of weight!! But thank you! You should have seen my stomach last night, it was huge!!
My DH Find the whole Mumsnet thing a bit weird especially that so many of us see MrS - had to explain it was a specific thread! Lol!

Poppy that's great news regarding the drs thoughts on risk factor! You must feel reassured!

LunaB · 30/08/2017 18:21

WOOHoo poppy! Boinkfest for you soon! God bless the blooming doctors.... even if they can be annoying sometimes - most are true gems and keep us informed and able to make good decisions 🙌

PoppyJ1 · 30/08/2017 18:16

Haha, I'm so excited that Just and Lara (Seeking) met! Brilliant! Is this the St Helier/Epsom clinic? If so I live a few mins away by car.

Just, what a thing to be told and simultaneously told it's ok! Are you fretting about it? Sounds like Mr S is confident and I get the impression hes one for over caution if anything, so his attitude must have been reassuring.

Glad your scan went fine, Lara and you can come off the Pred soon!

Had a consultation today and got tested for Zika antibodies. If it comes back positive it means I've had it at some point and I'm immune, which will be good, but it won't show when I got it so I should technically wait 8 weeks from last possible exposure, which is around fertile window, depending on the actual O day. There's apparently little point testing DP if he's back and forth so much cos he could technically get it any time. However, Doc said risk of getting it at all is tiny and not one person has tested positive for it at their clinic despite loads of people coming in for testing. He said I'm not being irresponsible because I'm weighing up the risks. He seemed to think we can't run our lives in fear and he'd be more worried about other risks of Africa travel, like malaria. Feeling much less anxious now!

LunaB · 30/08/2017 18:08

Oh dear; what poor soul upset Lorna I wonder? Hope tears of happiness, and not someone losing a baby...

Terrific news that you feel so reassured and in such capable hands... I will probably go for the big nuchal too if the sums work out.

So the baby is ok - but the heart is something casual to keep an eye on - thousands of babies are probably in same boat, but NHS resources mean it's not picked up on

JustLa · 30/08/2017 17:52

Hi Luna and everyone So glad it went well Seeking!!! I've been so worried because I dropped back in to make another appointment after a late lunch and Lorna came out of Mr S's office with reddish watery eyes... so I'm soooo happy you're ok!
You look stunning and tiny and Tullulah is totally scrumptious ❤️ Was so pleased I bumped into you! DH carries the silver hair well btw lol

My scan went well for the most part. Everything looking great including cervix length and my corpus luteum (pregnancy ovary cyst) which I asked him to look at.
One issue, the NHS would almost certainly not pick up on this- there is a leak in the heart valve. But he looked so thoroughly at size, position, location of heart, heart rhythm etc, that he strongly feels it won't be a problem. Going back at 20 weeks to rescan with Prof. Measured back to 13+4 (NHS always measure me bigger)

I have to 100% recommend having the nuchal at the clinic with Prof Ranjit Akolekar. You have it instead of 12 week with Mr S and the Prof spent approx 1h15 with me, going through all of my questions, drawing diagrams, explaining things in detail, the man is amazing. The scan was so incredibly in depth, he looked at blood flow in and out of major organs and development of brain, heart, organs, etc. Also how placenta is attached to me and baby and gives risk assessments at the end. You see a 3D image of baby and it doesn't even compare to the NHS nuchal. Mr S works it out to be around £50 more than just his normal 12 week check up with himself.

Was looking out for you Amy!! That wasn't you having intralipids as I left was it? How did it all go? Good I hope x

Hubby found it very funny that I said hi to 3 other women in the clinic, he's confused as to how I know s many people there #ChattyCathy

How is everyone else doing?

Xxx

LunaB · 30/08/2017 17:27

Excellent news Seeking!! What terrific news!! And that you met Just - LOVE it 🤣😝💓

Amy, all ok I hope poppet xx

Hello everyone!

Seekingmiracles · 30/08/2017 17:07

Scan all good. Baby measuring exact to my dates now at 11+1. Not seeing Mr S until 4th October now which will be my last one and can finally start weaning off pred next week! No more crazy hunger!!

Lovely to bump into you just! You look blooming lovely!!
Amy how did you appointment go? Did Mr S answer all your questions?

JustLa · 30/08/2017 10:10

Morning all,
I may still be in the clinic at 2 Amy, so if you see a wobbler in jeans and a navy/white striped top, long wavy dark blond hair, say g'day
Xx

Amy2017 · 30/08/2017 09:16

"How do you wobble"
"By moonlight of course"

hahahaha Luna you crack me up! Love this thread to much Star

Might see you next time then Just, good luck today to you and Seeking/Lara! :)

PoppyJ1 · 29/08/2017 22:51

Sheepy, glad to hear your have started a new cycle, must be a huge relief. Great attitude too about focusing on the future. It's all we can do and I really believe attitude makes a massive difference in health situation, hard as it can be to channel our energy positively. Well done to you.

Seekingmiracles · 29/08/2017 22:50

I had my NHS and then my Shehata appointments on consecutive days Harriet! Shame you can't make the appointment though...bloody work!

Seekingmiracles · 29/08/2017 22:33

No, no extra monitoring, nothing at all mentioned about blood vessels. I had extra growth scans but that was because of it he steroids. No one batted an eyelid to the fragmin, all very straight forward. I had a planned section because Tallulah was breech. Had to do my last injection at 6pm the night before I went in, then I did the next one the evening Tallulah was born. Had to continue for 6 weeks but again, no extra care because of it. Midwife just checked i was ok doing th injections (err I've done the every day for the last 9months Hmm) when she came to visit at home.
If you're going for natural birth they just say that if you're due your next injection but feel like labour has started, don't do it. Very unlikely it'll progress that quick that you may have taken the last injection too close. IFYSWIM.

JustLa · 29/08/2017 21:48

How annoying Harriet! Hope you don't mind waiting too much x

JustLa · 29/08/2017 21:47

Good work Sheepy 💪🏼 Give yourself a hug

Seeking, I've got so much I want to ask you about heparin and C-sections. I sense I'm gonna need one! Also, whilst would love natural, I think when on heparin and at risk of clotting, I like the idea of having the birth as organised and timely as possible to minimise risks. Did you get induced early? I would iggy the NHS and push for whatever you want! You've been through enough, screw what they want 🙌🏼
Also, were your blood vessels monitored in later preg?
Should have gone back door... may have even helped with digestive troubles which reached a new low today!! Had to hit the prune juice harrrrrd, haha.

Yes exactly Luna, great way of thinking 🤜🏻🤛🏼

Xx

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