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

@hrtbrk2 My HCG was down to 182 yesterday so it's falling fast. Weirdest miscarriage I've ever had, for sure. I must have just caught this pregnancy at its peak. But at least it doesn't look like an ectopic. I think I'll get another beta done on Monday or Tuesday and see where it's got to by then. I'm hoping it won't take weeks and weeks for the last little bit to clear out of my system like the last two times.

Anyway, this horrible little episode has spurred me on to make an appointment next week with a new gynaecologist. I'm going to ask him to go back to the beginning and look at everything and see whether there's anything my regular gynaecologist has overlooked.

I am really starting to appreciate this aspect of the healthcare system where you can just choose which doctor you want to see and book an appointment.

Hello again ladies,

Had some horrible cramping not long ago and guess what AF arrived! I didn't take pred last cycle as decided to stop ttc until we know more about this virus. However I'm going to continue with it. Clinic said that's fine, they will send me and email to sign and resend. This virus doesn't seem to be going anywhere and I feel as if I can't put life on hold.
Xx

@peperethecat I really feel for you having to go through all of this. There is no hell quite like having to go back and forth all the time for bloods all the time when you just want it to be over. That’s good that you are seeing a new gynaecologist who might have some new suggestions or revisit things that haven’t been picked up on previously. X

@Wishing5tar no I didn't take the pred last month and this month when I do start ur again ive been told to take 15mg.
I'm not getting my hopes up as so far SO hasn't really worked for me - as in I've haven't had a good response to letrezole or gonal-f so giving it another try ok a higher dose and If nothing then I know I'll have to discuss other options with Dr S.

@Crystal2020 I usually have my period on day 26-28 so it could be because I'd stopped the pred and had a break from meds for a month that my body was getting back to normal! God knows hey!
What SO plan are you on? Xx

@HoldingOn2Hope so I took the letrozole for the first time this month. I was ready for the injection on day 9 which surprised me! But only one mature egg unfortunately so Dr S has upped my dose for next time. How many rounds of SO have you done? X

@HoldingOn2Hope I’m pleased that AF has arrived so can you start a new cycle & TTC again ☺️ We have decided we will keep trying too! It’s good to know that Dr S is on board with issuing prescriptions etc. Will you still have to go and be scanned to know when to trigger? We want to start SO ASAP as this will be 8 months since adding hydroxy to the Pred & just nothing is happening. If AF arrives in the next couple of days I guess it’ll be too late to email now as you start the meds from early into you period don’t you? Xx

@Crystal2020 I felt awful over the weekend but now I feel like I'm taking steps to try and find out what is wrong and I feel more positive about things. I joined a French miscarriage support group on Facebook and I found out that the auto-immune specialist I've been referred to in July is interested in NK cells like Mr Shehata so hopefully he will properly investigate that side of things. (My regular gynaecologist has prescribed the prednisone but without really explaining what it is for, and I haven't had an endometrial biopsy.)

The only thing is, I don't know whether I should take the prednisone in my next couple of cycles before I see him, because if he does want to test me for NK cells, would already being on prednisone interfere with the test results?

I’m the same @peperethecat - always feel better when I’m doing something to try and help the situation.

If your new gynaecologist operates in a similar way to Dr S, then he would likely do lots of blood tests at your first appointment. If you start prednisone now, it would definitely impact on your NK results. I know this because I was on pred from positive pregnancy test in January (before I saw Dr S) and when I saw him in Feb after my miscarriage he wouldn’t do my blood tests right away...he wanted to wait until the pred had left my system. X

@wishing5star and @HoldingOn2Hope and @crystal2020 thanks for the tips - especially about what the acupuncturist said, how strange! Any further news on that evap line?

@Crystal2020 good luck in the 2ww too! Fingers crossed for us both!

@peperethecat hopefully it will all get out of your system and get back to normal quickly - I know what you mean though, through my various mc's they've been different each time and I remember thinking I've had every different kind now can there be any more!

So ladies I need your amazing help again - I tested opk positive all day yesterday too after my first positive on Wednesday night so we bd'd again yesterday - however, I am in a mild state of panic (and a bad mood!) this morning because I fully expected to wake up this morning with a raised temp to confirm ovulation so I could take my pred from today but there is no temp rise at all - surely the first indication of a rise should be the next day? Opk's are getting fainter now too so it's not a prolonged surge - Is it possible I'm not ovulating do you think or could it rise tomorrow still tomorrow or is that too late? I honestly don't know how I don't know every single detail of this ridiculousness after nearly 6yrs but yet still these odd things stump me!

Xx

@hrtbrk2 I don't always get my temp rise on the same day following a positive OPK. The most usual pattern is for me to ovulate the day after the positive OPK and then get the temp rise the day after that, but each cycle is slightly different and it doesn't always happen the same way. Once I didn't get my temp rise until four days after the OPK. So if I were you I would just keep having sex and taking your temperature. You'll confirm ovulation eventually.

@hrtbrk2 I was tracking my temps before I got pregnant in February, and I got absolutely no temp rise so didn't know if I'd even ovulated, but then I got a BFP. You don't always get a temp rise. It's so difficult knowing when to start the meds. x

@Crystal2020 I had 3 rounds of letrezole but unfortunately it didn't really work for me. My follicles weren't as big as Dr S was hoping they would be. He then put me on gonal-f with letrezole but again not a good response.
He then suggested just the Gonal-f on it down. I started on 75units day 2-6 and again not a great response, doubled dose and okay response but still not great. So this month I'll be on 225 units.
I don't have much hope tbh.
Weirdly another private consultant prescribed me clomid 18 months ago and I responded well to that but unfortunately all 3 pregnancies ended in mc.
Dr S isn't a fan of clomid and isn't happy to prescribe it. Not sure why.
I hope it works well for you, I think letrezole does for most ppl I've just been unfortunate.
Xx

@Wishing5tar

If you phone the clinic they will send out a prescription once Dr S approves it. Mine came with a couple of days.
I am meant to be having a scan for the follicle tracking and I know it's important however I don't know if I want to go all that way for a scan. If I don't it means I can't have the trigger but the way I see it is the trigger hasn't worked for me so far and can still ttc without it I'll have to just do ovulation tests.
I know it's not what the clinic recommends at all, but when I was on SO with my nhs consultant there was no follow up appts ans no tracking. I know the pregnancies ended in mc but I still ended up pg. If I don't end up with a bfp this cycle of ttc then clearly the meds I'm on aren't working. I said all this to the nurse at the clinic and she said it's true what I'm saying however she can't tell me not to have the scan as thats goes against their protocols.

@hrtbrk2 It was definitely an evap line as I got a stark negative on a FRER this morning & I feel like AF is on her way.

@HoldingOn2Hope Thanks for the info on SO. It is a long way for a scan. It would take us 6 hours to drive each way 😨

Well as of this morning I am ready to take a break. I feel like almost 3 years of disappointment has just wore me down to a point where I just expect disappointment and TTC controls a huge part of our life. We have a holiday booked for my husbands 30th in November and I just want to focus on loosing weight & being healthy and looking forward to it. None of this limbo of will I pregnant, will I be able to travel etc. I’d hate for such a special birthday to just pass us by in a haze ‘because we were trying (& failing) to get pregnant.’ But ever since agreeing a pause with my husband this morning, all I’ve done is cry & feel like I’m giving up. I guess I just need some time to re-adjust to live before TTC.

I don’t think it’s helped that I’ve been supporting my brother through a difficult breakup and then his ex-girlfriend told him she was pregnant. She had some complications a few weeks ago whereby it was 50:50 whether she’d miscarry but she ultimately decided to terminate the pregnancy which she did yesterday.

Sorry for the vent ladies, you’re the only people who I can share with who’d understand how I feel xx

Hi everyone, sorry I've been quiet, we got the results of the harmony test yesterday and the baby has a 99% chance of downs. We're absolutely heartbroken. All the drugs, money and stress for nothing and now really frightened about having to go to hospital and risk getting sick for more tests.

I just feel so angry at the world and want to stop taking everything but Dr S wants me to continue until the nuchal next week just in case. Not holding out any hope. The only time I'm in the 1% is if it's something bad.

I hope you're all doing okay, sorry to hear what you've been going through @peperethecat and crossing my fingers for everyone's BFPs x

@FrannyAnny82 I’m so sorry to read your update. Things are really not fair. When is your nuchal scan? I can understand why you’d just want to stop all the meds. What is the next step? Do they advise an amnio or cvs?

I’m so sorry, sending love your way & wish I could say something to help x

I'm so sorry ❤ especially as you're in that limbo @FrannyAnny82. I hear you on that 1% thing only being bad news. But I'll keep everything crossed for you for news you want. As megzaski said, wish i could do something else. Lots of love to you and your partner. X

@FrannyAnny82 I'm so sorry you're going through this :( life can be so unfair at times. We're all here to support you and if you need to rant that's understandable. Sending you lots of virtual hugs. Xx

So sorry you're in this situation, @FrannyAnny82. Take all the time you need to process things. I would do as Mr S said and wait for your next scan before you make any decisions.

@FrannyAnny82 am so sorry to read this, I can't imagine how you must be feeling. Will keep everything crossed for you. Sending you lots of virtual hugs x

@FrannyAnny82 I'm so so sorry to hear this, I hope more than anything that this time you're in the good 1%. It's so cruel for this to be thrown at you once you've got this far 😞 Wish I could say anything to make it better. Sending you love and strength ❤️

@FrannyAnny82 I was so so sorry to read your update. Life really isn’t fair is it. Can’t even imagine what you and your other half are going through. Thinking of you both & sending you lots of love ❤️

Thank you for your lovely messages, they really mean a lot. It's been so difficult, particularly as there's no real direction from the clinic other than to phone the local hospital- and they never answer the phone. It took us two days to get through. No genetic counselling, no pathway back to the NHS. It's been really confusing and scary.

And through my own research I see the chances of it happening again are 1 in 100 whereas my odds were 1 in 250 before. Great. That coupled with four losses suggest my husband and I are completely incapable of making chromosomally sound babies. And still no-one will do karyotyping for us 😡😡

I've been dismissed by St Mary's due to covid, Dr S doesn't do it and the IVF clinics are all shut. I've never felt more alone.

Sorry for moaning on. I'm usually really strong but this has destroyed me. Before i had people who were going through the same nasty thing as me but now i feel like I'm in some vile league of my own with no-one to ask for advice xx

@FrannyAnny82 can you speak to your midwife and get booked in asap for your nhs 12 week anomaly scan and get into the nhs that way?

You’re not alone we are here for you, but I appreciate there’s not much we can do save for say we are here. xx