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Immune/NK Issues - aka Pred Thread no 24!

999 replies

KittyKatSmile · 29/01/2020 21:53

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

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16
Eeviee · 03/03/2020 14:12

@FrannyAnny82 haha yeah only slightly! Car bus plane bus train plane and bus!! I’ve now left, sorry to have missed you, hope it goes well 😊
@Crystal2020 absolutely fine, didn’t feel a thing, I’m tired but then I got up at 4am so think it’s more likely that!
@HarrietM87 it’s so difficult, I feel absolutely nothing and felt so sick with my last pregnancy (not that it ended well). I asked the nurse today and she said totally normal to feel nothing at all while on the pred. X

HarrietM87 · 03/03/2020 15:08

Yes @Eeviee I had my son on the pred and had no symptoms at all, not even sore boobs, so it’s definitely right. I found out incidentally at the 12 week bloods that I also had very low levels of HCG (which has no impact on anything, just a normal variation), which may also explain it. As I understand it it’s HCG that causes nausea.

Glad it all went well today!

HarrietM87 · 03/03/2020 15:08

@LockThatFridge congrats! Yes get your bloods done asap! Fingers crossed for you this time.

FrannyAnny82 · 03/03/2020 19:03

@HarrietM87, I know exactly what you mean. I was sat on the train poking my boobs like a mad woman to see if they were still slightly sore. It's the only symptom I've got to cling to, that and roid rage!

@Crystal2020 The intralipids were fine thanks but the needle wasn't nice. And I could taste egg! Just hoping it works it's magic🤞

Congrats @LockThatFridge what a lovely line! Hope you got home okay @Eeviee after that marathon! Xx

Crystal2020 · 03/03/2020 19:22

Glad all went well @FrannyAnny82 (despite the eggy vibes!). And you @Eeviee - you must be beyond shattered. Hope you’re having a nice early night.

Day 10 of cycle 1 for me tomorrow so will test first thing. Definitely not expecting anything as been feeling fine apart from my big fat head and HORRENDOUS wind which I’m assuming is just Cyclogest side effects! X

KtAgs · 03/03/2020 20:12

Those line progressions look great @HarrietM87 and @FrannyAnny82. Gentle congrats @LockThatFridge. Well impressed with your epic journey @Eeviee.

@crystal2020 the progesterone is the worst (although I appreciate i havent started any roids yet). Gave me constipation and the runs last time (sorry TMI). I'd take the Fragmin stings anyday. Good luck for tomorrow. Let us know how you get on. Xx

williteverhappen · 04/03/2020 04:38

So many messages and new ladies on here, welcome all and so sorry to hear your stories 😘 and how you have arrived here. We are all here to listen and answer questions that you may have. Congratulations @weddinghelp, @pickledsausage, @mezgaski, @HarrietM87, @FrannyAnny82, @Eeviee and @LockThatFridge I really wish you all the best and hope it all works out for you. @KittyKatSmile I can't believe you will see your precious one very soon! I bet you are so excited! All the best for a smooth delivery. I had fluctuating symptoms in early pregnancy, I believe, due to the masking from the pred.I am now 24weeks and all good so far and finally starting to relax but won't be happy until I have my baby here. I've found that the anxiety of pregnancy after loss can be so overwhelming but gets easier although I found myself panicking on days in which I have reduced movement. I bought a fetal doppler to help me. All the best ladies!xxx

Eeviee · 04/03/2020 06:58

Thanks ladies, had an early night and a good sleep! 😴

Congratulations @LockThatFridge, are you seeing Dr S? Have everything crossed for you this time xx

@williteverhappen wow 24 weeks? Hope you’re doing well? Glad to hear another with no early symptoms, puts my mind at ease a little - it’s worrying to feel nothing.

I was wondering if anyone here has been referred to see Prof Quenby, or Lesley Regan on the NHS? I have a friend, she has just had her 7th loss, I’ve spoken to her about the likelihood of immune stuff but she can’t afford to see Dr S, I really want to help but I’m not sure if she’d be refered from
Scotland? Thanks x

VenusStarr · 04/03/2020 07:49

Hi @Eeviee she can self refer to the implantation clinic which is what I've done. You pay £540 for 2 biopsies and a consultation. I'm not sure if I'll see Professor Quenby but she oversees the clinic. The other lead is Professor Brosens.

She can ask her GP to refer her to Professor Quenby. When I called her secretary a few weeks ago, they were booking appointments for May. If she calls her secretary, she's really kind and helpful. If she looks on the Coventry and Warwickshire NHS website the contact details are there :)

Eeviee · 04/03/2020 08:07

Thankyou @VenusStarr, I have given her this info. Is your appointment in May? Have heard good things about Prof Quenby/ Bronsens x

VenusStarr · 04/03/2020 09:00

Hi @Eeviee, I've only done the self referral part at the moment, so had the first biopsy last week. As I booked late I haven't had my consultation yet so will get that next time. I don't think we'll ask for a GP referral yet as we're already under a Tommy's clinic.

LockThatFridge · 04/03/2020 20:15

Thanks everyone. I’m obsessively knicker checking now and keeping everything crossed that this sticks. It’s far too early to get excited.
@Eeviee I’m not under dr S. Just an endocrinologist who I have only seen once. He told me to hold off ttc but as it had been months with nothing happening, I assumed I wouldn’t get pregnant anyway. I’m dreading telling him!

FrannyAnny82 · 06/03/2020 07:24

Hi everyone, hope you're all getting on okay. I was just wondering if anyone has any experience with Frer profession please? My test line got as dark as the control line on Wednesday but it's stayed pretty much the same since then. I'm about 15dpo. Is this a bad sign or do Frer's just level out until you get a dye stealer? I've got a clear blue digi but I'm trying really hard not to go down that rabbit hole! I'm a ball of anxiety as it is! I've never got past the 7 week mark so the beginning is such a frightening time Xx

Immune/NK Issues - aka Pred Thread no 24!
FrannyAnny82 · 06/03/2020 07:36

Better pic! Turned the light on 😂

Immune/NK Issues - aka Pred Thread no 24!
Eeviee · 06/03/2020 07:38

@FrannyAnny82 I’m afraid I don’t have experience, but your link at dpo 15 looks nice and dark and I’d be happy with that. Since I got a positive test, I’ve stopped testing as I think it just makes the worrying worse. I totally understand your anxiety, I seem to have zero symptoms and I’ve never got past 6.5 weeks either so the the next couple of weeks are crucial. Just have to hope the intralipids and steroids will be enough to make a difference xx

HarrietM87 · 06/03/2020 07:47

@FrannyAnny82 I think your lines look great. I understand the anxiety but I think you need to stop testing! I actually just did a test as I had one left over and am heading for intralipids this morning - didn’t want to do the journey for no reason! It’s from the same box as the one I did on Monday but I can only assume there isn’t as much dye in the test as the control line is much lighter than Monday’s...so you can’t always assume the tests will be equal either!

When is your first scan?

FrannyAnny82 · 06/03/2020 08:11

Thanks @Eeviee and @HarrietM87 you are right, I'm going to step away from the tests before I lose my mind!!

Having a symptom or two would make it so much easier to stay calm. With my previous non-pred ones I've been exhausted but I feel right as rain this time.

Good luck with the intralipids today Harriet. Exciting times! Let us know how you go.

My first scan is on the 18th so I'm going to batten down the hatches until then - no mingling with sick people and no more testing! Praying the power of pred can get us all through! Xx

mezgaski · 06/03/2020 08:16

@FrannyAnny82 I think your tests look great & there’s really good line progression. I think stop testing now as otherwise it’ll cause more anxiety. I’d be happy with that progression.

@LockThatFridge congrats on your bfp. How are you doing?

How’s everyone else? I had my first scan with Mr S yesterday & am so relieved & shocked I think to say I’m measuring on my dates of 7+2 with a strong heartbeat. He was really good - v direct & quick.

HarrietM87 · 06/03/2020 08:27

Brilliant news @mezgaski! It will be plain sailing now!

@FrannyAnny82 that sounds like a plan. I know what you mean about symptoms - I felt really quite nauseous last week but not so much this week. I’m hoping it’s the pred kicking in. Haven’t booked any scans yet - need to do that but feel superstitious still.

Eeviee · 06/03/2020 08:33

@FrannyAnny82 sounds like a plan, I’m getting more nervous about this virus now - want to hide myself away and I’m quite scared of having to fly to London for treatment, maybe I’ll drive...

@mezgaski congratulations, that’s great news you must be very happy. X

FrannyAnny82 · 06/03/2020 11:55

Congratulations @mezgaski! That is the best news!! You must be so relieved.

Me too @Eeviee I'm sponsored by dettol at the moment. Thankfully I work from home and decontaminate my husband at the front door 😂 But seriously, if driving doesn't stress you out then it's probably a good idea to avoid public transport if you can. Especially down here, it's so busy! X

FrannyAnny82 · 06/03/2020 12:34

Not to freak everyone out mind! It's not even that bad a virus, I'm just scared of complications while I'm on the pred x

HarrietM87 · 06/03/2020 14:35

Had my intralipids and scan booked in for 3 weeks today when I’ll be 7+1. Was torn between leaving it as long as possible to make sure it’s a conclusive result and just wanting to know! I’ve been feeling really well today which is making me sad ☹️. It’s going to be a hard few weeks.

HoldingOn2Hope · 06/03/2020 17:11

So I had an appt for follicle tracking this morning (day 12) and the nurse booked it in for the wrong date! Had to wait 3.5 hours for Dr Jan to see me this afternoon and it wasn't a positive scan anyway :(
Haven't responded well to gonal-f injections. I was put on these as wasn't responding well to letrezole either. Had a few follicles but not as big as they would have liked. Largest was 15mm and the others were 12-13mm
Dr Jan said he would have a meeting with Dr S on Monday to decide what to do next for me. He said it wasn't a bad result but not great either.
Anyone had this happen?

FrannyAnny82 · 06/03/2020 18:35

@HarrietM87 Aw, try not to worry if you can. Just try to remember they use steroids to make sick people feel better which is why we feel glorious! And the longer we're on them, the better we'll feel annoyingly! I hope the next few weeks get easier.

Sorry @HoldingOn2Hope I've not had super O but that sounds like a huge faff! So annoying, especially when you're stressed x

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