Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

@HoldingOn2Hope that is so annoying re your appointment time! On the plus side - did you like Dr Jan? He’s a bit of a hottie I thought 🤣

I haven’t been on gonal F etc as letrozole worked for me, but it sounds like your follicles just need a little more time to grow? 15mm isn’t far off mature and day 12 is fairly early. I ovulate on day 20 normally (though superovulation did bring it forward). Hopefully they’ll have some suggestions for next time, I’m sure Mr S has seen it before.

@Eeviee, thank you. Doing well so far and starting to enjoy it finally! @FrannyAnny82 I would be quite happy with the line progression you have, I stopped once the line was as dark as the control. I would echo what everyone else is saying as it will only cause you more anxiety. The time of day and concentration of urine can affect the levels of hcg so line progression can sometimes be missleading. Congratulations @mezgaski, thats great news! Just take it one day at a time. I am sending lots of positive thoughts out to everyone 🍀🤰xxxx

@HoldingOn2Hope sorry to hear your appointment was messed up, that sounds really annoying! I've not had experience with follicle tracking but it sounds like Dr S tends to have an answer for all eventualities so hopefully they will have something for you xxx

@HoldingOn2Hope that’s so annoying a bout your appointment, I’m afraid I don’t know much about letrozole or the Gonal F, really hope that they can figure something out for you, is anyone can then I’m sure Dr S and his colleagues will, I can only imagine how stressful it is for you, big hugs 🤗

@williteverhappen glad to hear you’re relaxing a bit, that must be a really wonderful feeling.

@HarrietM87 @FrannyAnny82 hope
you are both doing ok
X

How is everyone doing? I finally plucked up the courage to phone my EPU (sooo many bad memories) and have a scan booked for next Wednesday when I’ll be 6 weeks on the dot. I know it’s early but with my son we saw the heartbeat at 5+4 and it’s usually all over by 6 weeks for me otherwise so hopefully will give an indication. Don’t know how I’m going to get through the next 9 days.

Hi @HarrietM87. Well done on making an appointment at your EPU. Those places can be so traumatic! When I have tried to bide the time between scans, I learnt how to knit and bought lots of puzzle books! I was still massively stressed though.

My period is here! Finally - 5.5 weeks later after the loss. I'm still getting positive tests so my consultant is monitoring my bhcg levels. We found out the last baby had triploidy so makes sense the hcg is taking a while to go down.

Hope you're all doing ok.

Xx

Thanks @KtAgs. I’m hoping to bury myself in work but don’t think will be successful! and good news that your period is back (though in sad circumstances). Are you going to try again straight away?

@HarrietM87 that’s great you got an appointment booked in, I’m booked in for next Tuesday and 6 weeks is always been by hurdle too so keeping fingers crossed for us this time! Hope you are managing to keep on top of the anxiety, I find walking helps so am doing that as much as possible.

@KtAgs glad to hear your period has arrived, its a relief to know your body and menstrual cycle is working; mine took over 10 weeks to come back after my last loss. Hope you’re doing ok x

Yes @Eevie I'm pretty pleased things are getting back to normal (ish). Its taken much longer than my other losses though.

@HarrietM87 we have our appointment with Mr S on Monday so we'll probably wait until the outcome of that at our follow up. The whole idea of trying again is horrible though. Hard to hold onto hope for myself.

But I'm thinking of you both at this super scary time. To me, making the days pass quicker felt like wading through treacle! Everything is crossed for you.

How is everyone else getting on? xx

Hello ladies! I hope everyone is well! Apologies I have not been on here much the last few weeks

Everything is going well this end. I will be 20 weeks this Friday. I cannot say I have relaxed but I thank my lucky stars I have found a fairly cheap scan place to go see the baby in between appointments. 😊 I think I drive my husband mad. The bloody virus scare does not help either.

I have to catch-up with all your news but I am hoping everyone is well! 😘😘😘😘

@HarrietM87 good luck for next Wednesday, I hope the time goes by really quickly for you. I’m finding every day seems to feel like an eternity!

@HoldingOn2Hope I’m sorry I’m not any help on that super o - when do you see Mr S to discuss it?

@KtAgs I’m glad your period has returned but it’s mixed feelings isn’t it as it’s rubbish you be wishing it back. When are you seeing Mr S?

@Eeviee how are you?

Nothing much to update on from me, I have another scan locally on Thursday & then we are on holiday in Cornwall on Saturday so I’m praying all is well & that I can try to enjoy our holiday. I’m not feeling too great so I think a break from work is a good plan!

Xx

@KtAgs I totally understand the fear of trying again, I was actually relieved when Dr S said we had to stop trying until we got results, gave us a break. You need time to recover too, be kind to yourself and I really hope that your appointment with Dr S gets you some answers.

@mezgaski I’m ok, just trying not to think about it too much, 6 weeks is my first big hurdle so will see how next weeks scan goes. Hope you have a great time in Cornwall

@MrsMargot lovely to hear from you, can’t believe you are already 20 weeks! Glad things are going on. How did you find it weaning off the pred? Are you still taking the heparin? X

@Eeviee Congratulations!!! I am so happy for you!! ❤️🤗😍 I am very slowly catching up with the everything and I saw your news!!

I had no problems weaning the pred. I did not even notice a difference which was odd. I had very strong headaches when I started it. I stopped heparin quite early on. I had my second lupus anticoagulant test results and it was negative. Dr S asked me to stop and I did. I am still on aspirin though. I have been deemed High Risk and I have been advised by the NHS SPC to continue aspirin until the 37th week.

How are you doing???

@MrsMargot thankyou! ❤️
Glad to hear you had no issues coming off the pred. I’ve had consistently high anti-phospholipids so am on daily heparin, aspirin plus I’ll have to double aspirin at 12 weeks for entire pregnancy if it goes well. The diagnosis of APS makes me very scared as it is known to cause second / third trimester issues as well. I’m hoping the steroids & intralipds will dampen down my immune response but only time will tell. Are you still consulting with Jo Gamble? X

Guys I don’t know how this happened but I completely forgot to take my cyclogest last night. I remembered on the train to work so it was too late to take it this morning. Absolutely kicking myself and feeling terrible...too scared to email the clinic as I feel like an absolute failure. Have I ruined my chances with this pregnancy? Should I be going home early to get it? Should I double up later?

@HarrietM87 personally I wouldn't worry about missing one cyclogest, it is just a general pregnancy help and not to do with the immune side of things. I had bleeding around week 6, and convinced it was another MC I stopped the cyclogest for around 3-4 days until I had a scan and found baby was still there. I also stopped again for around 10 days at week 12 thinking it was time to stop, only to find at the next appt it was supposed to be until week 16. But maybe set yourself a reminder for tonight ❤️

@Eeviee I know exactly how you feel... however, think that everything will go well. I am saying this and I know full well how difficult it is. I had a nervous breakdown twice in Dr S office before scans. I thought I was having a stroke. 🙄

Yes I do still consult with Jo!

@HarrietM87 don’t best yourself up, take it tonight and I’m sure you’ll be fine. Your body should be producing progesterone anyway, why don’t you call the nurses and maybe they can put your mind at ease?

Thanks @Eeviee and @Chickjen. I really hope it’s ok. Also got my thyroid results back this morning and my TSH has shot up even though I’d already increased my dose pre-emptively. It was 1.12 a few weeks ago and is now 3.4 (meant to be under 2.5), so I have a whole new thing to panic about now. Am on my way home to wfh now and take more thyroxine!

Hello guys, can I join?
I (think) I'm having my 5th miscarriage in the last 12 months. I'm 39, no children and have seen Dr S and been diagnosed with high NK cells, low ovarian reserve and my other half's fragmentation test wasn't that great either.
I saw Dr S after my 3rd miscarriage and had all the tests but we were a little bit intimidated by his manner (or I was, my other half described him as a money making machine) and I was also a little bit frightened about taking the pred from ovulation because it would stop us getting pregnant. So we continued to see our private gyno who prescribed pred, aspirin, progesterone, clexane from BFP which we've now done twice. I found myself pregnant again a few of weeks ago started the protocol and on monday went for an early scan. LMP said I was 5w6d but I know I didn't ovulate until nearly a week later. Sadly there was no gestational sac so he diagnosed; a) too early b) early miscarriage c) ectopic. Two days later I had bleeding; clots but only when I go to the loo and it's pretty much tailed off now. I've got another scan on Monday, but I'm just a little bit numb now I know I'm miscarrying although it seems so slow. And I'm worried it's ectopic. 5 miscarriages in 12 months and I'm a shadow of my former self, a naturally happy and optimistic person.
I think I just wanted to join, in part to cathartically write it down amongst people who understand, but also because I've been stalking this thread for a little while and it's given me much information from people who I think intuitively know their bodies, as well as a little hope and sometimes little laugh as well. A x

@Countrygirl220 welcome and sorry that you find yourself here. I know exactly what you mean about Dr S's manner, I was never really a fan. Also went through the same thing around the pred from ovulation thing. I don't really have any answers as I stopped the pred for a while to give myself a chance to recover, got pregnant and miscarried again.
It may not be over yet. A lot of people have bleeding early on and go on to have successful pregnancies. The week between scans is the worst time ever. You have my sympathy. I'm sure lots of people will have other suggestions/advice.
Take care and be kind to yourself x

@Countrygirl220 if you know when you ovulated and were actually under 5 weeks then you wouldn’t expect to see anything on the scan anyway? So every reason to hope!

I know exactly what you mean about Mr S. I can only tell you that his plan worked for me and I had my son after 3 miscarriages. Then I didn’t follow the plan (accidental pregnancy so started the meds after bfp, not from ovulation) and I miscarried again. I’m pregnant again now and waiting for a scan this week when I’ll be 6 weeks and just hoping it’s worked again. I have a couple of friends who didn’t start the pred until after bfp on their second pregnancies with Mr S and they were fine, but their losses all tended to be around the 7-8 week mark. Mine were always pre 6 weeks so I guess my immune response is more aggressive early on hence the need for pred from ovulation.

Really hope all works out for you this time - let us know how tomorrow goes x

Hi all,
Just wondering if I could join your thread, not sure if I qualify lol. Been ttc for over a year now, but just before that started missing periods, now I am having them but they're very irregular, totally impossible to predict, in fact I'm bleeding in some form most days atm. Gp had been fab, but there's not an obvious diagnosis, she is currently relatively sure it's a thyroid issue. Sending best wishes to you all. X

@Countrygirl220 welcome to the thread. Sorry to hear of your losses, and I can identify with your feelings of becoming a shadow of your former self, it’s so tough. I really hope that your scan goes well tomorrow x

@HarrietM87 @FrannyAnny82 how are you both feeling? I’m finding the current virus situation is not really helping the anxiety 🙄 Hope everyone is keeping safe and well
X

@Countrygirl220 how did it go today?

@Eeviee thanks for asking - how are you? I’ve started to get awful nausea which I’m hoping is a good sign - didn’t have any morning sickness at all with my son. My scan is on Wednesday - hoping it isn’t cancelled.

How are you @FrannyAnny82?