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

Hi @FrannyAnny82,

Sorry you're having such a crappy time.

I had my first general in Feb. It wasn't as bad as I thought it would be but I was very scared before then. People were super nice to me. Having had a late loss with delivery, and two medical ones, I definitely think its the less emotionally traumatic of the options but still horrid you have to face it.

Congrats @Chickjen. Love hearing stories like this so thanks for sharing.

So great hearing from you all as well. I think of you warrior women often. Xx

@FrannyAnny82 I’m so sorry to read your updates. I have been thinking of you and I’m so glad the clinic have been supportive x good luck for tomorrow xx

@Chickjen congratulations lovely on your news, it’s so great to hear. Hope you & baby are doing ok in these strange times xx

Hi to everyone else xx

@Wishing5tar @Gooe thanks, were you both prescribed the hydroxy by Dr Shehata?

@Chickjen congratulations on your news, that's wonderful and your story fills me with hope.

@FrannyAnny82 how are you doing lovely? I've been thinking of you, so sorry you're going through such horrible horrible times 😞

@FrannyAnny82 I hope it all goes well today. I think of all the options this is by far the best. I’m so sorry you’ve had a such a tough time and I’m glad the clinic really stepped up. You will come through this xxx

@FrannyAnny82 I'm sorry to hear you are having such a tough time.

I hope it all goes ok today; I had my first general in October and was pretty anxious, but it was perfectly fine and the nurses / doctors were so lovely.

xx

@Eeviee yes Dr S prescribed me it after I had another early miscarriage on the Pred. Are you currently on it or hoping Dr S will prescribe it to you? Xx

Thinking of you today @FrannyAnny82

@Wishing5tar had an early loss on his protocol so thinking he'll prescribe it next. I know it's worked for some. x

Just wondering, do any of you ladies on here have high anti-phospholipids?

@Eeviee I don’t though I’ve been tested a couple of times as one of my tests showed raised lupus anticoagulant- turned out to be a false positive as the next one was negative.

Do you have APS? A couple of the ladies I met on the pred thread when I was having my son have this.

I started bleeding today after a couple of days of spotting. I'm really hoping this is CD1 of a normal cycle for once.

@Eeviee yes I was prescribed the hydroxy by Dr S. The tests showed I had very high natural killer cell activity so was prescribed it straight away. Also I've had 2 late miscarriages so maybe that's why too?

@HarrietM87 thanks, I've been diagnosed with anti-phospholipid syndrome as markers have been consistently elevated. Most other people on here seem to have NK issues. Although it is all immune related. We're the ladies you know successful do you know? X

@Gooe were your NK levels high? Or was it just their activity? Did he put you on hydroxy as well as steroids? Hope you are doing ok xx

@Eeviee do you have NK issues too or just APS? Two of the ladies that I know had it. One had a baby on the standard pred plan plus blood thinners (not sure which ones), she wasn’t on hydroxy. The other hasn’t been yet but I’m not sure why - I think she struggled to conceive rather than having mcs so there may have been other issues. I think she’s looking into IVF but haven’t heard from her in a while.

@Eeviee I don't have APS but was treated as though I did by the NHS. Asprin and clexane. I won't be on clexane now though. Like @Gooe because of my late miscarriage, Mr S said he would likely put me on hydroxy from the get go. And my NK cells result matched that plan too.

@peperethecat I hope its CD1 for you. I've just come on and it feels like my first proper period since my miscarriage in Jan. And whilst it's a beast, it feels more 'me' if that makes sense? I had a cold ball diathermy in April so that's messed things up a bit so also hoping I get back to normal-ish from now.

@KtAgs Looks like it is indeed a new cycle for me. Fingers crossed it's a normal one and that the lab that analyses the endometrial biopsies is open in three weeks' time so I might be able to have it done this cycle. Booked in for an HSG on Wednesday.

Glad you're having a proper period too. It's so frustrating when your cycles are messed up after a MC, isn't it ?

@HarrietM87 my NK weren't high, they were borderline agressive and high cytotoxicity (which I thinking's how your cells they react to the state of pregnancy, the expensive test)
Asprin and heparin is meant to improve live birth rates in those with APS from 15%to normal 85%ish but Dr S thinks there's an immune component to it too. It's just I've read studies and apparently hydroxy reduces anti phospholipids in the blood so wondering why he didn't try me on that seeing as my markers were so high?. Anyway, will see what's next. Hope you are getting on ok?

@KtAgs cold ball diathermy, what's that? Doesn't sounds nice. I know what you mean, it's reassuring to to your first proper period after a miscarriage, how are you getting on?

@peperethecat that's good your cycle had returned, I've just started getting proper period pains today so I'm expecting AF which will be just over 4 weeks since my D&C, I hope it is. x

@Eeviee that’s interesting. I definitely think you should ask him about hydroxy. As I said, my friend with APS wasn’t on it, but two of the other ladies I know (who didn’t have APS but weren’t having success on the pred - one mc’d and the other wasn’t conceiving) had successful pregnancies on it.

I also have borderline high NK cells but they are extremely aggressive. Which I know because they take my pregnancies out really early. Some of the people I met on the thread before had much higher levels of NK cells but would lose their pregnancies later - at 7/8 weeks rather than 4/5 like me. It’s interesting. Mr S must have such a wealth of knowledge.

@peperethecat glad you’re starting a new cycle and hopefully feeling a bit more positive. What is the HSG for - to check your tubes?

And @KtAgs - never heard of that cold ball thing either but glad you’re feeling more like yourself.

@Eeviee I had a dodgy smear with precancerous cells so they had to essentially burn some of my cervix affected. Brought on my period early which brought on an infection because my cervix didn't have long enough to heal. Fingers crossed it all goes away with monitoring. I wish my bits would chill out a bit tbh. They cause me nothing but bother 😂! I yearn for a less complicated womb and fanny. But yes, v frustrating when periods are all messed up @peperethecat. Just compounds your distress doesn't it? I'm just glad some semblance of normality is returning down there. I hope AF is on her way for you eevie. Xx

@HarrietM87 I'm not sure what it's for to be honest. I saw a new gynaecologist (two, actually) and they both seemed to think it was one of the things about my testing that is incomplete. So I guess it's a standard procedure for recurrent miscarriage testing here and I'm having it done because I haven't had one before. To be honest I would quite like to check there isn't any scarring after my MVA.

@FrannyAnny82 How are you doing today? Did everything go OK yesterday? Thinking of you.

@Eeviee I hope you get your period soon!

@KtAgs Yes I thought I was having a nice normal cycle last time and then found out I was pregnant again and the whole thing just totally threw me. But in a way some good has come out of it because it gave me the push I needed to seek a second opinion and now hopefully my NK testing will happen a couple of months quicker than it would have done if I'd just waited for my next appointment in July.