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

@peperethecat I just wanted to say I’m sorry things are so stressful, hopefully you can get the next results ASAP.

I’ve been a bit quiet as just trying to manage my anxiety but don’t want to be insensitive to others on here as I know I’m so lucky to be pregnant. It’s just so hard to shake the anxiety that something will go wrong and to add to the usual level of worry We had our 12 week scan at Mr S’s office & they found baby has tricuspid regurgitation which is a leaky valve in the heart. They think it will either go away by itself, or it’s a heart defect or it’s a sign of a chromosomal abnormality (a’s it’s a soft market). The professor thinks it’s the former as I’ve had the harmony & lie risk plus heart is formed perfectly. It’s still playing on my mind though. Sorry to go on, just needed to vent! I have my nhs 12 weeks scan (although I’m 14 weeks now) on Monday so my plan is to ask them to look. I’m finding the days just go so slowly!

Sending love to everyone else at this tricky time! Xx

My HCG has risen from 383 to 600 in slightly less than 48 hours. I really don't know what to make of that. Seems like not enough to indicate a viable pregnancy but is it low enough to indicate ectopic? I'm so stressed.

@mesgaski I met some lovely ladies on here in my first pregnancy and we’re still in touch. I think one of them had exactly the same thing, found at exactly the same point, and it had healed itself by the time he was born. I will ask her about it for you. It wasn’t even picked up on her NHS scan - it’s just the prof is so thorough. Sorry you’ve had this extra stress.

@peperethecat that’s pretty good for less than 48hrs! Really hard to say what is going on - I guess you have to wait for the next one on Monday? Fingers crossed for you.

@HarrietM87 thanks so much I’d really appreciate you asking if you don’t mind. Rationally I know that it should be ok but I’m not rational anymore that’s the issue!!

@peperethecat I’m sorry there still aren’t answers - I hope Monday comes really quickly for you xx

@peperethecat I agree sounds a little bit more encouraging, I really feel for you the waiting is really hard, am keeping everything crossed for you for Monday.

@mezgaski hope you're ok, it's good that they've said they think it's the former hopefully that gives you a bit of hope and comfort. Keeping everything crossed for you too. Completely empathize with the days going slowly... days just feel like weeks!!!

Hope everyone else is well x

I don't know, I have a very bad feeling about this. 600 is far too low for what should be nearly 6 weeks by my ovulation date. I have a feeling it's either ectopic or a very sick embryo in my uterus that is not going to make it.

I've already mentally resigned myself to this being my fourth loss. I just need to get through the next however long until it is resolved and then I think we will stop trying naturally and focus on preparing for IVF in the autumn hopefully.

@mezgaski I asked my friend for you and her little one had exactly the same thing. She said like you she was also worried about Downs even though harmony came out low risk. The prof thought it would heal before birth, but when it hadn’t done by a certain point in her pregnancy she had a specialist scan. Then it did heal later, before he was born. He’s absolutely perfect and gorgeous - no issues at birth or since. She was told that it’s really common, it’s just picked up more these days because scans are so thorough. I hope that gives you some comfort though I know it must be hard not to worry. Did you like the prof? I loved my scan with him last time - he’s so soothing!

@peperethecat thinking of you - roll on tomorrow xx

@opalescentblue how are you doing?

@peperethecat I really do feel for you, it' so unbearable. I hope you've got some things that can keep you busy today, even though it's bound to occupy your every thought. Sending you a virtual hug x

@HarrietM87 thank you so much that’s so reassuring. I’m glad everything was ok with your friend & her son. Thank you, I really appreciate it x I have a scan tomorrow with nhs so I’m going to ask them to have a look too.

I really liked him too, he was really nice. I’m seeing him again in a few weeks for a 16 week scan to keep an eye on things.

Hope you’re doing ok? X

I just found out that PGS testing is illegal here (France). So we either do IVF which is no more likely to work than TTC normally if the issue is that my eggs are crap, or we spend tens of thousands of euros to do IVF abroad with no guarantee of it working. I feel so deflated.

Oh I'm sorry @peperethecat. I totally get that looking for solutions can help with some of the disquiet in our minds. I really hope you get some positive news tomorrow.

Also - I looked into PGS in the UK and it takes a really long time on the NHS, plus the stats on success are not guaranteed. Similar to IVF eg 30%. I was put off as I don't just struggle to make euploid babies but had a 2nd trimester loss too.

Thinking of you though lovely. Keep us posted on how you get on.

And FWIW to everyone else, especially those pregnant, I really like hearing from you and about your progress. It helps me feel hopeful and was what drew me to the thread in the first place. Take care lovely ladies xxx

I think we might continue trying naturally for a few more months while we decide what to do about the IVF. I will get a second opinion (or two) from some different doctors in France to see whether they can work out what the actual problem is, and then if it looks like IVF is the best solution we can decide whether to try it in France first without the PGS testing or find the money to have it done abroad.

In other news, my HCG has now fallen from 600 to 380, so it's back to the same level it was on Thursday. I need to do another blood test on Wednesday to check it continues to go down rather than going up again, but if it falls again I can probably file this one under "weirdest miscarriage ever". I don't think I am likely to bleed much (if at all) because I don't think I have any uterine lining to shed after my "period" two weeks ago. So what... my HCG gradually goes back to zero and my cycle restarts eventually?

Who knows? Watch this space. Whole thing is utterly bizarre.

At least I can stop taking the progesterone and pred now.

@peperethecat So sorry to hear what you are going through! If it’s any comfort, my first two miscarriages were exactly as you describe. The first time, I only found out I was pregnant when I began doing ovulation test strips for my next cycle and they kept coming up positive immediately and for a few days in a row. My friend persuaded me to take a pregnancy test but I was convinced it would be negative given I‘d just had my normal period and bled for 5/6 days. To my surprise it was a blazing positive and I was almost 6 weeks then. My HCG levels continued to rise for a couple of days but then started to decrease. I started to miscarry a couple of days after that. Unfortunately it took over 6 weeks for my levels to return back to zero even after the bleeding had stopped.

After that, even when my period arrived, I would always take a pregnancy test a couple of days in just in case. With my second miscarriage I didn’t get a positive pregnancy test until after I started bleeding. Maybe my ‘period’ was implantation bleeding but that would’ve meant it took almost 2 weeks to implant following ovulation? Again it hung on for a little while before miscarrying 2-3 weeks later.

When I mentioned this to Dr S he believed that my heavy bleed around the time of my period was probably the first indication that I’d miscarry. He wasn’t able to shed any more light unfortunately on what was happening but I suspect I may have a problem with implantation - maybe that’s the NK cells causing trouble?

Sending hugs! I know first hand how confusing/frustrating the “weirdest miscarriage ever” can be xxx

Hi @Wishing5tar, thank you so much for sharing your experience. I'm not "glad" it happened to you as well but it's reassuring to know that this isn't completely unheard of, if that makes sense. It's really thrown me that I thought I was gearing up to ovulate this week and now I am back to tracking my HCG back down to zero and wondering when I will ovulate next. I don't know if I will even bleed, because I lost so much blood during my "period" that I don't think I can possibly have any uterine lining to shed.

I'm not sure whether to try and avoid pregnancy until my cycle returns to normal or just keep having unprotected sex and hope that at some point I figure out where I am in my cycle.

@peperethecat I know what you mean, I was reading your post thinking I can’t believe this has happened to someone else too!

You might be surprised re the bleeding - with your level rising to 600 I suspect your lining may have been thickening to help support the pregnancy.

I was advised by the early pregnancy unit to wait until I got a negative test before trying again. That way you knew that any subsequent positive tests were ‘new’ and not still just hanging around from the miscarriage. Xx

I AM SO F**KING SICK OF TESTING MY HCG BACK DOWN TO ZERO!

(Sorry, just had to get that out of my system. Phew!)

You're right, I need to make sure it goes all the way down. I hope it doesn't take too long this time. This is so frustrating.

@peperethecat hope you are ok am sorry for what you're going through, I hope that means they've now ruled out the ectopic now as well? Totally get your frustration, how utterly confusing!! But think it makes sense for you to keep trying and take the pred from ovulation as that may make a difference for you before you think about spending the money on IVF as there are so many positive stories on this thread where that has worked. We're just having a see what happens go with no expectations as the IVF clinics are currently shut, so feel like we might as well do something, but it's obviously different for everyone x

@Countrygirl220 Apparently quite a lot of ectopics resolve naturally, so I wonder whether some early miscarriages are actually ectopics that come out by themselves and we just don't know about it. I am still suspicious about the heavy bleeding and the slow rising HCG. But assuming it goes back down to zero by itself I will never know for sure.

I don't really know what to do about tracking ovulation now, as I have literally no idea what to expect.

@peperethecat oh right maybe, that would make sense! Hmmm I'm not sure but if the HCG is now zero then the ovulation sticks would potentially in theory work... or why don't you track your temperature for the next few weeks every day as it might be high now, but go down in a few days and then you might have a bit more of clue where you are in the cycle perhaps?

@Countrygirl220 My temperature was already low last week even though I was pregnant. I think it's because my progesterone was very low. I've been taking the progesterone supplements for the last few days so I expect it would be a little bit higher now, but hopefully it will be out of my system soon enough.

My HCG has gone down by 50% in the last two days so I'm hoping it'll clear out quickly, although that last little bit can sometimes take ages to go away completely.

I'm now wondering whether ectopics that resolve naturally might account for some of the unexplained early miscarriages. Nobody has ever looked at my tubes because I think they just assume they're clear if you manage to get pregnant. I'm going to try and find another doctor who is willing to do all the tests again and go through everything with a fine toothcomb so maybe I'll ask them to check my tubes as well. Can't hurt, right?

Hi all, I hope everyone is ok and keeping safe.

@peperethecat I can't imagine how frustrating and confusing this whole situation is for you - are there any further updates? How are you feeling now?

So I did a solid smiley positive opk last night bang on day 14 (must be the Inofolic) and as luck would have it, amongst all this lock down and sunshine hubs is like a humpy dog at the moment so we'd already had a bit of afternoon delight! Well timed sir - I say lucky as I had no build up on the opk just negative then boom, solid smiley no flash or build up on the cheapies either. Weird - anyway is it therefore today that I start the pred or tomorrow in case I don't ovulate for a day or so after the positive opk? Appreciate your advice.

I guess we enter another 2ww, anyone else there with me or approaching?

Enjoy the sunshine if you have it where you are today all xx

Hi ladies,

Had taking the prednisolane delayed periods for anyone?
I'm a few days late, defi can't be pregnant as stayed safe last cycle plus the OH was self isolating. I know I ovulated as tested. I've done a pg test anyway yday and was negative.
I'm on day 31 of my cycle and no period. I usually come on btw day 26-28.

@hrtbrk2 perfect timing I’d say 😜 Personally I would start it tomorrow that way you know you’ve definitely ovulated already. Don’t worry if you’ve already taken it today though, Dr S says it doesn’t have to be exact just around ovulation.

AF is due for me today. I did a test yesterday morning and it was negative but last night once it had completely dried out, my husband thought he could see a line 🤷🏻‍♀️ but it’s probably just an evap one. If AF doesn’t show today I’ll test again in the morning but I only finished the progesterone suppositories a few days ago (no Pred this month though as I’m on a 1 month break after being on it for 7 months) so AF might be slightly delayed.

Xx

@HoldingOn2Hope I’m not sure if it’s the Pred (did you take it this month?) but a few cycles ago I was 5 days late for no apparent reason. All my tests were BFNs and I had stopped the Pred/progesterone at 10dpo so who knows. Sometimes our bodies like to keep us on our toes 😂

Hi @HoldingOn2Hope - the pred definitely delayed my last period. It’s always 28 days and last month was 32 which is so unusual for me & made me feel seriously out of sorts!

@hrtbrk2 - I don’t know if there is anything in it but my acupuncturist always says he prefers when it goes straight to a solid smiley. No idea what the logic behind his thinking is! But one of my pregnancies was from a ‘straight to solid smiley’ month. Good luck! I’m in the 2WW with you. It’s my first round of superovulation so let’s see. Haven’t felt anything different this time apart from the fact that I really really felt ovulation happening! But maybe that is standard with SO. X