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.

@Everhopeful35 it’s good it’s stopped! And if you haven’t also passed any tissue etc then a really good sign. But I know it is still so worrying.

Mine also seems to have stopped thank goodness (but I’ve been reading scary things online about the tissue/clots I passed earlier this week and what it might mean for the future - I need to stop Googling!!).

I’m actually envious of your sickness - I have never had it in any pregnancy so have never had that “comfort”. I’m so glad it’s returned a bit for you! My understanding is it can come and go (like other symptoms) so maybe don’t read too much into it? I can’t talk though, I still check my boobs daily for any sign of them getting less big etc! ;)

I have everything crossed for Monday for you, I really really hope it’s good news xx

@Everhopeful35 and @Rebecca9876 pleased to hear the bleeding has stopped for you both. I hope you’re both managing to get some rest and look after yourselves. It’s so unfair that you have to the anxiety of the bleeding on top of already anxiety provoking pregnancies.

I got my BFN today at 10DPO. So gutted as this was my last month trying before Dr S said I have to have a break for 1 cycle due to being on steroids during the pandemic which I completely understand but it’s so frustrating being forced to wait when I feel like my life has already been on hold for so long.

I want to do superovulation which Dr S said we could discuss in the new year. I’m due to next ovulate next towards the end of Jan. I have looked into it and understand that I think I need to be put in meds and then scanned to see when to do the trigger shot. Those that have been through this, do you think it would be doable for me to do this in time for end of Jan ovulation? I wasn’t sure if the timescale of things and I know they are closing over Christmas.

I’m also considering my husband perhaps doing a sperm DNA fragmentation test beforehand to check all OK his end. He has one done before we saw Dr S for the first time as part of research but we never got the full results back despite lots of testing. He has 0% morphology so Dr S put him on Impryl which he has been taking for about 9 months. We have had 2 of the 6 babies we’ve lost tested and both came back normal. His sperm count was OK but has been very low in the past so wonder if it would be sensible to do this first before putting my body through more. Going to message the clinic on Monday but wondered what others thought?

Hi @NICK7nick7 sorry to hear. It’s worth testing for the next couple of days just in case?

I don’t think there’s anything stopping you towards end of January. I also had a break from meds in August before starting again in Sept when I did SO (and when we added in pred), but it was all fine as the loading dose of hydroxy means you are good to go very quickly. The intralipids and cyclogest work straight away and, I believe, so does pred - my husband was concerned the pred wouldn’t have been in my system long enough but I fell and stayed pregnant then so I don’t think it mattered.

We paid for the dna fragmentation test with Dr S and although it came back with no issues, it did give peace of mind. I always think it’s good to investigate all avenues, but of course it does cost so there’s that to weigh up.

Why not use the opportunity to really have a mental rest over Christmas and enjoy yourself (I’m thinking some wine!)? I found my break incredibly useful (despite having found it hard stepping off the “trying” train) and really think I went back into things with a much better mindset, so am sure that helped then getting pregnant. Hopefully you will find the same? Xx

I'm sorry about the bfn @NICK7nick7 it horrible. How long is your luteal phase usually? I'm going to test at 11/12 dpo this cycle, feel 10dpo is a bit early for me. I'm hoping to do superovulation in the new year. Dr S gave me letrozole that you take from cd2 for a few days, then as I ovulate early, I'd need a scan about cd8-10 to check follicles and hopefully trigger and have lovely scheduled sex (my dh's fave!! 😂) so I would think you'd be OK for doing it in January. Unless you need meds in preparation too?

Glad the bleeding has stopped @Everhopeful35 and @Rebecca9876 lots of love to you both

Hi @Finleysmom84 I'm also under Tommy's in Birmingham but we've not been offered any trials. I've had 2 losses under them and they didn't offer progesterone in either (I've had 4 losses in total).

After my 3rd I did go to Coventry and saw Professor Brosens. The biopsy didn't show I have high uterine nk cells, but he did prescribe me the progesterone that I took for my 4th pregnancy but I had my 3rd MMC. He did say that we could try steroids next time, but that we'd need to get pregnant first and then discuss, which felt too risky as my pregnancies go wrong before 6 weeks but I usually miscarry around 9 weeks, so it would be too late for me. Plus, like you say with covid, he wasn't committing to prescribing it for me.

So we're under Dr Shehata now. I have a normal amount of nk cells but they're very aggressive, so I'm on his complex plan now. Not sure if you live in Birmingham, but it takes me about 3 hours to travel to Epsom, so it is a day out, but this is the first time I feel hope. He's the first specialist that's agreed with us that 4 miscarriages isn't normal and now we have the reason why. We've just been told by the nhs to keep going. Dr S told me that I'd likely keep miscarrying if I had no treatment. Xx

@Rebecca9876 Will test again tomorrow to be sure but not really having any symptoms except some occasional nausea but I think that’s a side effect to the meds as I’ve getting that every month whilst being on them.

I think it’s frustrating to have the break as I’ve just started trying again for the last 4 cycles after having a forced break before that due to a suspected partial molar pregnancy, which then turned out to be OK so I’m not really ready to stop. It’s also just another example of coronavirus getting in the way which I think it linked to a traumatic pregnancy and loss during the first lockdown. But I don’t have a choice so have to go with it and I’m going to concentrate on all the things I haven’t been doing/been able to do to try to help me through it (such as drink some Malibu!! and I actually want to go to the gym and lift some weights and try to get a little in shape again as my weight gain has really got me down! Plus eat a little gluten as I went gluten free!). I’m trying to also think that it does give me more time to save some money so that will help take some stress off too.

I think you’re right about the DNA fragmentation that it will give us some peace of mind if all OK and make me happier going into the superovulation. Xx

@NICK7nick7 sorry realise I didn’t mention the SO process! No nothing affecting timing of that - you take the letrozole for a few days at start of cycle, then you are scanned around day 10 and take the ovidrel trigger shot after that (at a particular time depending on how the follicles were growing at your scan) x

Are you on intralipids? That’s what really puts me
Off as I live in west midlands and work shifts so I don’t know how I could manage the trips to go back down to get them.

How old are you if you don’t mind me asking ? X

Thank you . Congratulations on your pregnancy x

Does anyone know what dr s says about chemicals? I’ve had 3 now 😩x

@NICK7nick7 messages crossed - gym is a brilliant idea!! I have gained so much weight on pred (and am sure I have a bit of “moon face”) it’s awful. Sounds like a really good plan and I wish you so much luck for next year xx

@Finleysmom84 he will count your chemicals the same as your later miscarriages, they are all losses x

@VenusStarr usually around 29 days. I ovulated in day 19 this month which was a bit later than usual so will try tomorrow just to be sure.

@Rebecca9876 I definitely have a moon face!! I wish I could wear a label saying I’m not fat, I’m on steroids!!

Hi girls, sadly my bleeding restarted today, turned bright red and I'm pretty sure I have passed the sac. Completely devastated. I've kept the remains, so can someone tell me whether I can take this to Shehata's or go to EPU like normal? Thanks. x

@Everhopeful35 I can't offer any help on your question but I am so very sorry to read this

Oh @Everhopeful35 I’m so incredibly devastated for you to read this :( I’m not sure on your question - I showed a photo of what came out of me this week (which I thought was a sac at the time) to the Professor when he scanned me but didn’t take it in. I expect you could, but maybe contact them first thing tomorrow to check? I’m so sorry, please try to take it easy tonight and be kind to yourself xx

@Everhopeful35 I am so sorry. This happened to me before when I had medical management the hospital gave me a small container and said to try not to touch as much as possible. Also I think you need to keep in a fridge if you aren't bringing it in immediately....I've never done that but pretty sure that's what I was told. So sorry, it's sad we know these details:( I do think getting things tested if you can is important as it can help you decide what you need to do next...

@Everhopeful35 maybe give local maternity hospital a quick call now, they should be able to advise you on it...

@Everhopeful35 I’m so, so sorry. I don’t know the answer to your question but I just wanted to send you some love. Perhaps ring the EPU and see what they say and whether there is a certain way you should be storing.

Yes I was told to keep it in the fridge too. They also said a clean Tupperware container was ok

Oh @Everhopeful35 I'm heartbroken for you. Sending you a big hug ❤️ I kept mine in a pot in the fridge and took it to the epu the next morning. The nurse had a quick check that it was complete and that they had all my details. I'd probably say taking it to your local hospital is the best idea, I don't think the clinic has testing facilities.
Lots of love, thinking of you xxx

@Everhopeful35 I am so sorry your going through this just like the girls have said I kept mine in the fridge overnight and took it to the hospital the next morning. Sending you love x

@Everhopeful35 so sorry to hear this. Absolutely gutting. The clinic can test what you collect, I asked when I was going through my last miscarriage but wasn't a patient yet. Put it in a clean pot in the fridge and bring with you. Big hug x

@Everhopeful35 how are you doing? I have been thinking of you. Xx

Hi ladies, thank you so much for your messages. It's been a very long day! Managed to get scanned by Shehata this afternoon and discovered the pregnancy is still intact! He thinks that I had a twin that miscarried, because my HCG level on Friday, at 5 weeks 1 day, was 17,000, which is unusually high. I'm a bit confused as I don't think twins run in my family and I definitely only had one egg this month (saw it at the superovulation scan). The issue is that there’s still blood in the womb and it’s right next to the sac and the sac is a slightly irregular shape, which Mr S thinks is because the blood is putting pressure on it/distorting the shape slightly. So I’m still very nervous and have been told to rest. The sac seems to have grown, though, and there’s a yolk sac too, so that’s good. Really not sure what to think, but happy for now that it’s still in there and growing. xx

@Everhopeful35 that’s great that he was able to scan you and that baby is still there. Hopefully the blood passes soon for you so that the pressure is taken off of the sac.

I retested this morning before I was going to come off of the meds today, and it was positive! I was very shocked but also very relieved. I’ve been trying to get hold of the nurses all day to book intralipids over email and phone but not luck so they must be very busy at the moment. Does anyone know when I have to have them done by? I’m 11dpo.