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

I've emailed my doctor and not had a response yet, but I think if I don't get a decent temp rise tomorrow I'll use last week's prescription and go and get a blood test to check my progesterone levels.

@hrtbrk2 thank you I feel like I need all the luck in the world right now!
The letrezole didn't work for me. I tried 3 rounds of it first at 5mg, 7.5mg and 10mg. The response wasn't good enough so then Dr S suggested a combination of gonal-f and letrezole for 2 more cycles and again not a good response. So this cycle was gonal-f only at a high dose on its one. Xx

@HoldingOn2Hope hope you're managing to keep calm, it's always so anxious when you're spotting, just to compound the general underlying anxiousness. I've always had implantation bleeding too, which has lasted between anywhere between 2-3 days so hopefully this is what it is for you too, a big fingers crossed

@Eeviee sorry you're feeling like this, this journey is so utterly all consuming that similarly to @FrannyAnny82 when it really get's tough I've tried to just take myself out of it for a bit, hang out with friends/family, enjoy all the nice things that we're having to limit i.e. have a few glasses of wine, some nice food and just try and forget about it for a while. I'm also a bit of a planner and like to have a plan of action of the steps we're taking next, appreciate that's not for everyone but I just like to feel like I'm moving forward.

@Wishing5tar sorry to hear about your bfn but good news on your apt, something to move onto next

@peperethecat I'm no temping expert either, it stresses me a bit, so I tend to do it a few days before ovulation and maybe two/three days after, but quite often my temps have been a bit all over the show too. Sounds like a good idea re. the progesterone test to let you know what's happening for sure!

@Ultra26 how are you doing? Did you manage to speak to the clinic?

Morning ladies,

The spotting stopped yesterday afternoon. I thought I'd take another test today as it's been 48 hours, still a positive but line isn't any darker.
The top test is today's.
I don't know what to think 😑

@HoldingOn2Hope I think the line looks good, I'm not the best person to comment as I usually just test once and leave it but I'm not sure FRER necessarily get darker and darker? I'd still go for the intralipids though. You could go to GP and see if they'll test your HCG over a few days to see if it's going up? I did that last time.

Thanks for your support and suggestions ladies, I have been allowing myself a couple of glasses of wine, it's tough not being able to see friends and family. @Countrygirl220 I'm the same , I want a plan of action and I have it in my head but I just haven't run it past my OH yet 🤦🏼‍♀️
@Wishing5tar I like the idea of thinking when it happens not if, but I'm so scared to believe that. Maybe that's my problem.

@peperethecat that's really frustrating, is it just because your temp hasn't increased that you don't think you've ovulated? I use an Ava bracelet to track temp and my temp didn't go up at all in Feb so though I hadn't ovulated but I has because I fell pregnant. So temp doesn't always go up.

@HoldingOn2Hope I’ve tried to find my own pics but must have deleted them - my early ones looked just like that this time I promise. They dry darker - you can see that the bottom one is much dryer as the back has gone a bit yellow - so you can’t compare the lines now. Hcg doubles every 48hrs but the normal range at 4 weeks pregnant is 5-426. So if you were say 10 2 days ago you’d only be 20 now (still normal) whereas someone else could be 800+ and that would obvs show a darker line.

Basically, I think it’s fine and you should definitely go for intralipids. Great news spotting has stopped!

@Eeviee @HarrietM87 thank you ladies!
Tbh I took the test waited 3 mins and got bk into bed to sulk! I've looked at them again and today's is definitely darker. I showed the DHwithout telling him which test was which and he said the one is definitely darker.
I'm going to take that as a positive and not testing again tomorrow before my appt. just hope the spotting doesn't return!
Like my DH said to me be positive as thinking negative attracts negativity.

@HoldingOn2Hope today’s test is definitely darker! 💜 good luck for Intralipids tomorrow, sending positive vibes to you xx

@HoldingOn2Hope that definitely still looks like a great line to me. And I’m delighted that the spotting has stopped. I’m the same as @Eeviee, I only test once when it’s positive as I can’t handle the anxiety of it! Did you say your intralipids are tomorrow?

@Wishing5tar thank you so much!
@Crystal2020 yes tomorrow. It really sure what to expect, my husband is driving me but as he has quite bad asthma I may leave him in the car.
@HarrietM87 how long do the intralipids take? And are they monthly? Xx

@HoldingOn2Hope I think that looks like a great progression! Glad to hear the spotting has stopped, it sounds like that was defo implantation bleeding and would tie up with dates! Good luck with your intralipids!

@Eeviee well having the plan is a good first step, hopefully you'll be able to have a chat about it soon x

Yes @HoldingOn2Hope they are 4, 8, 12 and 16 weeks. Takes about 1-1.5hrs depending how quickly it runs.

@HarrietM87 Ok great, I'm not good with needles I faint at blood tests 😬 I know it's so silly but I do. Also can the pred mask symptoms as I don't have any? Apart from I'm feeling more tired than usual.

@Countrygirl220 I hope it was IB I've just never had it before so anything nee is scary isn't it? I just want today to go really fast!

@HoldingOn2Hope like @HarrietM87 said the Intralipids can take a couple of hours. Your husband can’t come in the room with you anyway so if he’d just be getting out the car to walk you to the clinic, I would personally say it’d be safer to stay in the car ☺️ The nurses will be popping in and out whilst you’ve got the drip in to check how you’re doing but I’d take something to keep you entertained. I had my phone with me, but they joked that I could’ve brought my slippers and a blanket and had a nap 😂 Maybe headphones so you can listen to music or a book to help you relax?

Fabulous line @Holdingon2hope - good luck for tomorrow!

Very quick message to say we will be kicked off this thread in 8 messages time. Does anyone know how to make a new thread and tag everyone back in?

Wonderful news @HoldingOn2Hope, line progression looks good. I ended up going for intralipids yesterday as my line was also darker. The whole thing took about 2 hours and my husband sat in the park. They offered to switch me to hydroxy but I declined and they also did more liver function tests and the covid antibody test. Best of luck tomorrow x

@Ultra26 Awww brill! They managed to get you in quick. Wow 2 hours, as long as it's worth it I'll be fine. Why did they want to switch you to hydroxy? What dose of the pred are you on?
They've told me I need to have the liver and kidney blood test and thyroid but my gp will arrange my thyroid test anyway but DH is telling me to just pay the £80 and get it over and done with at the clinic so I may just do that.
I'm not sure I want the antibody test done, I'll be mega stressed if it comes back that I'm not immune to covid. Did you have it done?

We will be thron ff this thread short, I figured out how to set up a new thread and have tagged as many as possile but I've forgotten anyone please add. www.mumsnet.com/Talk/miscarriage/3914106-Immune-NK-Issues-aka-Pred-Thread-no-25?watched=1

Well the intralipids took an hour in total but we did spend some time talking through the treatment plan and had to wait for Dr S to come back from lunch to ask about the hydroxy which dragged it out to 2 hour. They wanted to switch me just because of the covid issue but since I'm working from home indefinitely I didn't think switching was worth the risk. This is actually the reason for the covid antibody test (which I did) as if you've had covid then it is possibly safer to be on the pred. I heard back from them today that I don't have the antibodies so I've never had covid which means I just need to be super careful with going out. In terms of dose, am meant to be on 25mg but whilst trying I only took15mg from a risk benefit point if view then upped it to 20mg when I got the positive. They did say they would prefer if I went down to 15mg but don't think I will. Overall, I found it very comforting going in and speaking with someone and just trying to stay positive that this works out. All the best for tomorrow.

How many cycles of superovulation with Dr S is it taking ladies to get pregnant?

Hi @CATALYST2019 I'm just starting my first cycle so I'm not sure but there has been chat on one of the other feeds that the nurses have advised their best results are between 4-6 cycles of SO - something to do with tweaking doses etc and the build up over time x hope that helps!

Thanks @hrtbrk2 appreciate your response. I'm on cycle 2, having a good response in terms of follicles just not had a BFP yet :(

Hi Catalyst, thanks for your posts.

There is also a new thread over here if you wanted to join this: www.mumsnet.com/Talk/miscarriage/3914106-Immune-NK-Issues-aka-Pred-Thread-no-25?noti=1&utm_source=watchedthreads&utm_medium=email&utm_campaign=2020-02-27&utm_term=Mumsnet%3A+New+message+on+thread+Immune%2FNK+Issues+-+aka+Pred+Thread+no+24%21&rei=1139246#97291197

I have not got any experience with SO I'm afraid but other ladies do! Katy