Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

@Lalaifa so sorry about your BFN. It’s so crap. I’m also interested in knowing more about superovulation especially cost as already struggling with the cost of everything but also want to speed things up as being on the medication every month from ovulation to 10DPO makes me feel awful.

I posted lots of info about superovulation a couple of weeks or so ago. Not going to repeat it all now as trying to have some down time while dealing with my twin miscarriage (which is following my own first go at superovulation in sept...) but people keep asking so hopefully it should be fairly helpful.

I never like to post on costs as think it’s not for me to do publicly (just my view!) but the clinic can tell you if you ask. It’s not really much in the big scheme of things as just the drugs and the scan, which from memory is the normal scan price x

Thank you @Rebecca9876 ❤️

Remember when I said was worried about retained products so my GP prescribed some antibiotics? I've been tracking my cycle and not getting any lines, my temps gave been erratic (I got a negative hpt after 2 weeks). But I'm on cd19 now from what I thought was a strange light period and felt crampy and sore last night and this morning I've passed some grey tissue which definitely looks like pregnancy tissue and I am bleeding more heavily now. I'm just waiting for the epu to call me back. I knew I didn't feel right.

@VenusStarr I hope you get some closure soon. It's awful when things drag out for weeks..Let us know how you get on....

Thank you @LookingforAnswers86 GP is sending me for an urgent scan (not sure how long the wait will be though) glad I'm being checked.

@VenusStarr I hope you're okay and all goes well at the EPU. Please let us know how you get on.

I've just had a less-than-ideal scan with Mr S. Only one follicle grew with the 5mg Letrozole so he's increasing the dosage to 7.5mg if I'm not pregnant this month. Two other issues were highlighted (one of these days, I'd like to have a positive scan 🙄) - my lining was only at 6.5mm, which was considered thin for this stage, and he's identified some 'fluid in the fundus'. He can't tell what it is without a hysteroscopy- it could be cm, it could be a polp or it could be my scar tissue regrowing (I had to have some removed from the womb last year, following two D&Cs). He says it could hamper implantation and if I'm not pregnant next month and it's still there, I'll need a hysteroscopy. Feeling pretty down and like there's no bloody point trying.. 😔 xx

@Everhopeful35 I’m so sorry you’re feeling down. And I completely sympathise - I have been feeling like I want to give up now, as I’m convinced my remaining baby is also gone (loss of symptoms points to it but I have to wait for my next scan to know). But in your case, look at the huge positives - he has found issues you didn’t know about before which can be investigated and, I’m sure, treated. That is a big step! I know what it is like to be desperate each month and see it as a “lost” month (not that it is yet necessarily), but in the big scheme of things, it’s not that long to wait if you need to just adjust the dose a bit and learn a few more things via the hysteroscopy that will help you in the end. Don’t lose faith - you have the hope now of some more answers. You are very strong - remember everything you’ve already been through - I have everything crossed for you! X

@VenusStarr I hope your scan goes well. Xx

@Everhopeful35 so sorry to hear you are feeling down about the scan. I also had lining issues, which were corrected by taking progynova. You still had one follicle so there is still hope for this cycle. Xx
@Rebecca9876 thanks for the info about superovulation. Might suggest it if the next cycle doesnt work.

@Everhopeful35 uck that's all you needed :(. Would he do the hysteroscopy for you if you need it? If you do need one hopefully you can have it quickly and if there is a small issue they can fix it on the day. Also could scar tissue cause fluid out of interest ? It must be very small whatever it is if he cant tell although I know normal scans are harder...

@Rebecca9876 Thank you for your lovely message. Yes, you're so right that it's good to know the issues and face them head on. Let's just hope it's cm... I must say, I've had literally zilch so far this month, so maybe it's all got stuck up there and that's what's showing on the scan (she says hopefully 🤣). I just sometimes feel like I have SO many problems - 100% shit embryos with IVF, scar tissue, immune issues. I mean, it does feel now like I'm in some teeny percentage of unlucky people! I'm so sorry to hear you're worried and the pregnancy symptoms have disappeared. I can't tell you not to worry, as I know you will, but for what it's worth the symptoms have never been an indicator of something wrong for me. I had strong morning sickness the day before my D&C with the first pregnancy, even though I knew it was gone, and in the last pregnancy I had zero symptoms during the time when the baby still had a heartbeat and was growing. Are you taking steroids? The IVF clinic told me that steroids can sometimes mask symptoms.

@Lalaifa I'm really encouraged to hear progynova helped you, as Mr S has prescribed it for me next month if this month doesn't work out. Do you mind me asking how much it boosted your lining by?

@LookingforAnswers86 Dr S said he had a colleague who does the hysteroscopys, so I think it's at the Epsom clinic but just with someone else. As you say, it would be nice if it's a small issue that can be fixed quickly but if my scar tissue is back it could be a long process. I had to go under GA to have it removed last time and have copper coils fitted in the womb to help it heal, as well as hormone treatment. Dr S said it could be fluid or it could be scar tissue - he just couldn't tell. Praying it goes and I'm not on another long road... xx

@Everhopeful35 I started taking the progynova in September. Three tablets a day. My lining was 6.5 previously and after taking it it had increased to 8 mm, which is perfectly fine for implantation.

@Lalaifa Ah thanks - and well done, that's a great result. How long did it take? Will the results of taking it show on the same cycle? The weird thing is that I've never had lining issues before. For my IVF embryo transfer in June, it was 9mm. Hoping it's not linked to this fluid patch, and praying it thickens in the coming days.

@Everhopeful35 try not to stress, it definitely doesn't sound like the end of the road. IKWYM though, it would be nice for just one thing to go smoothly wouldn't it. Remember Mr S is an expert so I'm sure he knows what to do and you will get there!

@rebecca9876 so sorry about your twin. So hard to be positive but you don't know anything yet without a scan. Crossing fingers for you!

@VenusStarr good luck at the EPU.. the place we all dread. My last mc dragged on for ages, its awful bc u just want to move on. Sending hugs x

@Everhopeful35 It’s Dr Jan at Epsom who does the hysteroscopys, xx

@Everhopeful35 yes I’m on the normal full dose of steroids on the complex plan and still had strong symptoms before but not now.

I have a scan later today (9 weeks) - purely an extra one as I’m going crazy and can’t wait another week for the 10 week scan. But I’ve just started bleeding this morning :( Maybe it could be a delay from losing the first twin two weeks ago but from what I’ve read about vanishing twin it seems unlikely.

I feel so numb. If I have lost the other twin as well, it will be my fifth miscarriage in less than a year. That must be some kind of grim record? :(

Hey,

I am losing my 6th pregnancy.... yesterday scan showed a 4-5 weeks sac, but i am 6w+4. Today CB still indicates 2-3. I hope it will come out naturally and i wont need a D&C... i am so scared

Has anyone been seen at "The Centre for Reproductive & Genetic Health" in London? My NHS consultant is also working there, and they offer some tests that NHS does not (NK, immunotherapy, DNA frag).
I have very high anti-thyroperoxidases and anti-phospholipid syndrome, why should i not received steroids? I am confused.

My Dr will have to further investigate, because I can't start IVF (january), it will fail again as i know there is something else wrong.

Take care

Hi @Rebecca9876, I'm really sorry you're bleeding. That must be very scary and I have everything crossed for you. That's good you have a scan booked already. Keep us updated and I'll be thinking of you.

Sorry to hear your news @Sophfr17. That's really upsetting. I think if you know something else is up then you should definitely pursue investigation outside the NHS for that. That is what I had to do because I knew in my gut something was wrong. I don't know the clinic you mention but perhaps someone else knows it? It's a good sign your NHS doctor works there too. Good luck and I hope things progress how you want them too. XX

Thank you. I am so tired.

@Rebecca9876 🤞🤞 it's awful when you bleed though and with past history we always think the worst but it's not always the case :) thinking of you today and I hope you get some good news!

@Sophfr17 I agreed with @KtAgs if you are able to definitely go privately, the public system doesn't seem to offer all these tests which is crap :( do you take clexane / aspirin for APS? If you test positive for immune / NK cells they should offer you steroids or something similar ...sorry you are going through another loss it's awful...mind yourself xx

@Rebecca9876 I'm so sorry to hear you're bleeding. You're doing the right thing by having an early scan - I agree that the next week would just be unbearable otherwise. I'm keeping everything crossed for your little one xx

@Sophfr17 It's so heartbreaking to hear you're going through this for a sixth time. I don't have any experience of this clinic - is it private? Most of us here are under Mr Shehata, who also runs the immune and DNA frag tests. Could you get referred to him? I'm a private patient but I know he sees NHS patients too.

Thank you ladies for your support.

I feel like I am drowning... i feel like a shadow of myself, and more and more convinced that this will never happen.

I have to start another type of mourning, that of motherhood.

to answer @LookingforAnswers86, yes I am under aspirin and heparin, plus other things, but no steroids. Looks like it is not enough.

I can't possibly start the IVF process, without making sure we have checked everything. Simply cause i feel the IVF process is not the solution for me, although he is convinced that like that, he will be able to select the best embryos....

Which clinic is Mr Shehata?

Thank you all xxx

@Sophfr17
This is Dr Shehata clinic

www.crpclinic.co.uk

This is the video I watched that made up my mind to go to see him

open.spotify.com/episode/4mal15BCZzSn8DVqLVxng4

Hope this helps xx

Thank you @LaurenAB94
I really appreciate.
x

Oh ladies it’s good news - the remaining baby is alive and well (for now) :)

They think the bleeding has been my hematoma, which is still there. The lost twin is also still very visible/ hasn’t degraded or reduced in size at all and looks really sad just sitting in its sac. But for now we have one healthy baby and that’s all I could have hoped for. I cried a lot.

@Sophfr17 welcome and so sorry you find yourself here. As others have said, I think most of us on here are with Shehata’s CRP clinic. I hope you find some answers soon wherever you decide to go and wish you much success x