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

Afternoon ladies,

What's everyone's thoughts about caffeine during ttc? I have a cuppa every morning and in the afternoon but should I be giving it up all together?
I did in my first preg which didn't continue anyway and each time I'm in the 2ww I feel guilty for consuming caffeine. Am I going nuts? 🙈

@HoldingOn2Hope even in pregnancy you can have 2 cups of tea a day so I think you are a bit nuts! I stopped drinking when ttc but other than that continued my (high!) caffeine consumption and kept diet the same (though to be fair I eat quite healthily anyway).

I drink decaf tea because I can't taste the difference but lately I have been drinking one caffeinated Nespresso coffee most days.

@HarrietM87 thank you I just needed that clarification lol!
I've stopped drinking a few months ago and I don't miss it but wouldn't be able to survive without a cuppa.
@peperethecat I was told by my nhs consultant that decaf is worse so maybe as well have caffeinated drinks! Although I do love my Nespresso's flat whites and stick to decaf only because I don't actually need the coffee I just like to enjoy the drink when I'm having some me time.

What? Why is it worse?

I've also been told to avoid decaf but purely because of the chemicals used to actually decaffeinate the coffee and tea. Clipper organic decaf tea and coffee use a water method and are meant to be pretty inert.

I drink the same tea as @Ultra26 for the same reasons. I’m used to it now. When I was ttc I would have 1 caffeinated tea or coffee a day x

@peperethecat yep simply because of the chemicals used to decaffeinate it. I've only had 1 tea today :)
I might order some clipper tea thanks @Ultra26

@HoldingOn2Hope I was having this same convo with my oh just the other day - I have 2 cups of normal tea a day but if I have anything else it's peppermint or fruit tea but recently during lock down I have really battled to stick to the 'fertility' diet and chocolate, biscuits, crisps and a bit of alcohol have crept back in and I'm annoyed at myself so am going to get back to it. Has anyone else had this?

I think the main thing is that you feel like you're happy with the amount you drink - ie you don't feel guilty for having 'too much' caffeine but you are still allowing yourself certain things that you like so as not to feel like you're too restricted or 'stressed' about it? X

Hi everyone, sorry I've missed so much and apologies in advance if I miss anyone off...

@hrtbrk2 With regards to caffeine and diet, I used to follow the fertility advice to the t. But this pregnancy I couldn't stomach anything beyond frazzles?!?! and fizzy water. But that little baby thrived, despite being poorly. I'm not going to be anywhere near as hard on myself going forward. Get your greens in but if you want a biscuit, you have one and enjoy it. The doctors told me it's about what you do most of the time, not all of the time.

But I did change a few things before falling pregnant. I don't know how many of you saw the study by Lesley regan about a diabetes drug that helps stem cells grow in the uterus? Apparently a lack of those cells is a major and largely unexplored cause of miscarriage. I couldn't get the drugs so researched a diet to mimic the effects - lots of pomegranate juice, grapes and citrus fruits. Who knows if it actually helped but I wanted to try something new.

I've been on decaf for about a year now. I never quit drinking but did limit it to a couple of days a month straight after a BFN. Because why the eff not, life is hard enough. And after all the crap we've been though - and the endless timed shagging - it does my husband and I good to have a few wines together.

@Eeviee sorry to hear about your results. I'm totally with you on the ruined egg worry front. But apparently us recurrent miscarriers all too often allow crappy embryos to implant. According to the guy at St Marys, women should expect to fall pregnant a maximum of twice a year. For me it was double that and he said I have 'hyper fertility' whereby my womb isn't picky enough. It's not that our eggs are fried, it's just that our womb is a bit eager.

@HarrietM87 I hope the anxiety has abated. But you are in such a good place now. Your odds of bad things are minimal. I know it's hard because we've all got PTSD but I hope you get some peace soon.

@HoldingOn2Hope so pleased you got some good news.

@Crystal2020 and @KtAgs and @Jorun thank you for holding me in your thoughts. I'm doing okay but got news of a friend's pregnancy today which has really set me back. I hate feeling like this so much. I try so hard to stay happy and positive because I refuse to let this horror ruin my life. But whenever someone close to me falls pregnant it plunges me into a really dark despair and I don't know how to handle it. I need a coping mechanism- does anyone have any tips? Xxx

@hrtbrk2 I stopped all caffeine after my second miscarriage, not that I had that much before. I had to odd decaf coffee or tea. but I've started drinking up to 1-2 cups of normal tea again now because I feel like it and when fertility problems go on for a long time, it’s hard to constantly feel deprived. I’d always go for the clipper organic unbleached teabags. For coffee, swiss water decaf is much better as it doesn’t have the chemicals usually used in decaffeination process. Coffee is a very heavily sprayed crop so always buy organic if possible. Look up Grumpy Mule Coffee, they do an Organic Swiss Water decaf.

@HoldingOn2Hope I'm with you. I've been off gluten and dairy free over a year now with very occasional alcohol but after my last loss I ate cheese and ice cream and some wine. We spend so long depriving ourselves, it's not fair. Things in moderation makes it easier to stick to.

@FrannyAnny82 how are you getting on lovely? I hope you've been good to yourself. I've heard of the hyperfertility theory, and I don’t even think much can be done but supposedly progesterone helps the uterus be more fussy. Have you ever mentioned this to Dr S? I had a friend who did but he dismissed it. So difficult when doctors believe different things?? In which case I’d have thought IVF with PGS would help, but then I’ve also lost chromosomally normal embryo so don’t even know if that’d work. I totally get trying to stay positive but its so incredibly hard, I find it hard to be around my friends who I was pregnant at the same time as and they have their babies, it kills me inside. I don’t have a coping strategy as such but I often just avoid them unless I’m feeling strong. And I think we have to be kind to ourselves and allow ourselves to do that if necessary, a good friend will understand. I also started hypnotherapy in January, I think it’s helped get me out of my panicky desperate state a bit more. I’ve really been struggling the last couple of days too. I think I’d convinced myself my losses were due to these clotting issues but now I realise they may not be just that.

Ugh I had about 400 decaf teabags delivered here a couple of weeks ago and have been drinking as much decaf tea as I wanted thinking it was OK, and now I'm worried it's horribly toxic and undoing all the good in the expensive vitamins I've been taking!

@Eeviee I know exactly what you mean about deprivation and I feel the same way. Unfortunately I'm a bit of an all or nothing person, so for ages I was hardly drinking at all and then for the last couple of weeks I've been drinking most nights because I'm just like, fuck it, I'm on lockdown with my husband and I just want to have a nice dinner with some wine. I don't know how to strike the right balance. It would be so much easier if we could just get pregnant, stop having alcohol and caffeine for 9 months, then have a baby and go back to normal. People who don't have miscarriages know exactly how long they've got to stick to it for and what the end goal is. But when we deprive ourselves when we're not even pregnant, we don't know how long we have to do it for or whether it will even make any difference, which makes it really hard to stay motivated.

I'm going back to the gynaecologist tomorrow for an ultrasound, which will mean I've seen him three times in three weeks now. Hopefully we will decide on my protocol for this cycle and I'll soon be ovulating and in the TWW having tried something new. It's a bit of a strange feeling given that I had mentally resigned myself to not being able to try until the end of the summer, and now I could potentially be testing in three weeks.

Oh and last night I got into an argument with some people posting in a thread in AIBU about people who call their children rainbow babies and how inappropriate/damaging they think it is. Like, seriously, stop with your judgements. You haven't walked in that person's shoes. And take your faux concern for the rainbow babies and fuck off to the gender disappointment threads, because those are the parents who really do need to be told to appreciate what they've got.

Re hyper fertility, I read this article which made a lot of sense to me - it says that implantation is often easier for women with immune issues as there are more “holes” in the uterus, but then they ultimately collapse in on the embryo. I think this ties in with the stem cell research Prof Regan has done. Explains why for some women it can be really easy to conceive, and why sometimes you can still have a successful pregnancy with no treatment (Mr S told me I had a 20% chance of success if I did nothing).

www.newscientist.com/article/2121182-timing-when-you-get-pregnant-could-prevent-a-miscarriage/

@peperethecat totally with you on your frustrations my lovely! You can't do right for doing wrong ... ever! And also with regards to the drinking etc I literally could have written that - my thoughts exactly - after nearly 6 years of trying different diets and barely drinking etc it's difficult to maintain knowing there is no actual end in sight yet...we have been through stages of ultimate strictness which is fine short term but you can't do that realistically and live a normal (or lockdown) life long term and stay sane so it's just about doing what you can and not beating yourself up.

@frannyAnnie82 - good to hear from you, I hope you're doing ok. Really interesting to see what you said about the diet that mimics the stem cell drug. I think I was contacted about that trial with dr's quenby & brosens but had already moved on to dr S by then so am trying this first - it's so hard to know which to do for the best and with time running out I do find it I think about it too carefully I feel really overwhelmed like I'm going to have a panic attack... it's the not knowing what might be the right answer for you so having to choose blindly then panicking that by the time you find out it may be too late and worse you've had yet more miscarriages - I just try not to think about it and have faith in the option we've chosen. BUT will def be adding pomegranate juice and citrus etc to my diet just in case!!

Sorry also @frannyAnnie82 to hear about your friends pregnancy - it never gets any easier but dependant where you are in your journey there are always worse times to hear it than others and this must be a really tough one. Just do what you can to cope - even if that means distancing yourself a little if you need to x

One other question I had for you guys - did anyone find when they started their first couple of rounds of steroids that they had more painful periods? As you know I've just finished an unsuccessful round 2 but my period cramps this month were really bad - and for a while now I've had relatively pain free cycles - they felt like when you miscarry and you feel like you have horrific gas pain and cramping until something has come out (sorry tmi)? No heavier blood flow though- in fact id say it was less which is a little worrying. Most of me thinks this is the change in diet and allowing naughty things to creep in like sugar that have put my periods back to painful again but I did wonder if it could really have made THAT much of a difference in just a month or two - and the pain, although fleeting each time it came was really quite bad - like doubled over - I wondered if all these drugs might be having their own kind of impact. X

@FrannyAnny82 I’ve just had a big cup of pomegranate juice after reading your post! It’s a very tough time for you to be hearing of your friend’s pregnancy (not that it’s ever easy news to hear). I struggle with it too and have noticed that I can feel only feel genuinely over the moon for those who I know have struggled to get there...and I’m not liking this about myself. Like @hrtbrk2 said, I now distance myself when I need to and only do things like seeing new babies when I’m feeling strong. If there is a way for me to get out of a baby shower, then I’ll take it! I don’t love this approach but I don’t have a better coping strategy and I’ve decided that protecting myself and focusing on my treatment is the best thing that I can do for now.

@hrtbrk2 that sounds really sore! I’ve done 3 rounds now and I‘ve noticed longer & heavier periods than before - but they’re not more painful. Nothing extreme but there’s definitely a difference. I was wondering if it could be related to the baby asprin, must ask Dr S. X

I hear you @peperethecat! 🙌🏽 I'm so all or nothing as well. I'm not prepared to not drink at all or restrict my caffeine too much. I just think if there was a link, we'd know by now. And my happiness and stress are totally linked to how I spend my time. So, not doing it.

@frannyAnny82 - no tips i'm afraid. A friend posted her scan and I just had to be sad for a bit. Grieved for my losses. And for the loss of innocence and hope in future pregnancies. It's so hard for us miscarriage mamas. I lean into the sadness a bit and by not fighting it, makes it a bit little easier to handle. But I honestly couldn't have got to that point without counselling.

Sorry about the change in your periods ladies. Mine have changed too and not been on meds. It's a bit worrying isn't it? But I hope they just work themselves out. 🤞🏼 xx

These extra follicles this cycle have definitely caused bloating and sharp twinges more so in my left side - there was more follicles on that side I just checked my report.
I guess the bloating is normal? Feels a bit like pins and needles are times.

@hrtbrk2 @Eeviee it's so true we deprive ourselves too much I think with me it's guilt but then again I was on my best fertility diet with my first pregnancy and it got me nowhere. Then I had friends who were pregnant at the same time eating whatever junk they wanted too and got through it fine.
I'm not as obsessed as I used to be. I just try and eat a balanced diet and my caffeine concern is only as ok late 30's so thought it damages egg quality. Take enough bloody vitamins to make up for it I guess!

It's never easy when friends announce pregnancies, 2 of my friends were pregnant while I was going through my 2nd mc and although I was happy for them I was sad for myself. I let them know that and did distance myself a little when I needed too. I think one of my good friends is preg now but she's not said, I just know she is. She's acting a little strange towards me.

It’s so so shit when everyone around you gets pregnant. My last mc was in September and the due date was 25th April. Just after I had my MVA we had brunch with our two best friend couples, and they both announced they were pregnant - due 20th and 27th April. It hit me so hard - feeling bad for myself and also feeling bad that I wasn’t just delighted for them. I still feel so awful about that mc as I blame myself for it. Every time I saw them it reminded me of what I’d lost.

I can see some positives now - like they have just had to give birth in the midst of a pandemic (thankfully all well) - which I couldn’t have foreseen. But it’s much easier with hindsight. At the time it was so raw and awful. I think that it’s better just to embrace these feelings and let yourself grieve rather than try to repress them and feel even worse for having them in the first place.

Double whammy with your two sets of friends announcing @HarrietM87 - nothing could prepare you for that. With my recent pregnancy, one of my best friends and I found out our due dates were just one day apart. Obviously my pregnancy hasn’t continued and I think I’m going to really struggle when the time comes to meet her little one. It’s very tough!

@Crystal2020 if it’s any consolation, weirdly when I’ve been upset by friends’ pregnancy announcements it’s always been fine seeing the actual babies. It’s like when I see them pregnant I think that could/should he me, but when the babies are here they are so obviously not “my” baby it’s been fine...if that makes any sense.

I also weirdly find it harder around pregnant people than those who've had their babies. With my first miscarriage, I got pregnant around the same time as somebody at work and as she announced her 12 weeks I had my MC. I literally had to sit a few desks away and watch as her bump got bigger for 9 months, it was torture. I really tried to be very enthusiastic, overly so probably but it was so hard, more than a few times I was crying in the loo. And I've definitely sat out a few baby showers etc. I think sometimes as well it's the initial shock of the announcement that's a bit like stabbing you in the heart and then once you've had chance to process a bit, it's a little bit better.

And re. the periods I thought that the baby aspirin made my periods different, it was like they were a brighter red with a bit more of a flow if that makes sense, but not more painful in fact less painful. But I also put that bit down to giving up sugar which I've done for about a year now, with the exception of a two week break at Xmas and the other day I ate a cupcake as I was feeling a bit weird and felt like I needed some sugar.

Good luck to everyone today with their appointments x

I just got a call from the hospital today and they want me to come in on Friday for a day of testing. No idea what tests they want to do, but yay!