Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

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 immune issues, 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.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

@KtAgs

Thanks everyone for your lovely messages. It still doesn't feel very real yet. Off for intralipids today. *@Chickjen* lovely to hear about you and your boy. You give great advice too!

Sorry about your response @venusStarr, it must be gutting. If you do track ovulation, I was using temping and sticks together for the first time this month and the temping really helped me pin point ovulation much better. I use a femometer. I really hope it works out for you Xx

Sorry - I meant to tag you @Wishing5tar instead of @VenusStarr. Xx

@Chickjen thank you so much for sharing your story & welcome to the world George 💙💙 What you say is so so so true. I know my sister was adamant she would breastfeed and it just didn’t work out with her two children. If nothing else this journey has taught me that nothing is guaranteed. Just because we want/wish for something doesn’t mean it’ll happen and to just to keep an open mind and see where it takes us ❤️

Dr S did mention he thinks there is an an element of PCOS on one side which is when I don’t have a very good reaction. But I just checked back through my scan notes and I’m confused:
1st cycle (2.5mg) - 2 dominant follicles on the right
2nd cycle (2.5mg) - 2 medium follicles on the left
3rd cycle (5mg) - no dominant follicles on either side
4th cycle (10mg) - follicles on the left which he hoped would increase by trigger date
5th cycle (10mg) - no dominant follicles but could maybe ovulate later from right side

He previously said that I had some smaller cysts around the outside of the left ovary which would indicate polycystic but it appears I’m having more trouble from my right side? 🤦🏻‍♀️ This is all such a minefield. I’m pleased I’ve kept all my paperwork though as I can hopefully take it with me to any future IVF appointments so they have an idea of what’s gone on.

Good luck for Intralipids today @KtAgs ☺️ I use Ovusense to track my temps and it’s bloody typical I had decided I wouldn’t bother using it this month so missed a few days after AF finished. My temp this morning was still low so indicative that I haven’t ovulated yet. I picked up some clear blue ovulation sticks in Epsom yesterday too as thought I’ll try both xx

Thank you all for your kind words and messages - I will come back and read them again to digest them, feeling a bit overwhelmed at the moment.

Sadly, it is miscarriage number 4 - exactly the same as my 2 last year, although the baby is bigger this time, measuring 5mm with no heartbeat 💔 they're still saying that it's a 5 week gestation but my other two were 1.9 and 2.1mm and were put at 5.5 weeks. I don't really understand, but they've not officially confirmed it but the sonographer said she had no doubt that this pregnancy was not viable. I'm back on 2 weeks to confirm. I just think that (discounting the chemical in February), 3 pregnancies where the babies stop growing in the same week cannot be just bad luck. I will get this little one tested so that might give a bit more of an insight.
The epu nurse asked why I wasn't on aspirin but we've been told not to do that. Feel very overwhelmed and sad, but also determined to give this little one all the love ❤️
I am going to come back and read all your messages again to think about next steps for us xx

I'm truly sorry to hear that @VenusStarr. It's really not fair and I'm thinking of you and your partner. Give yourself time, gather yourselves and when you're ready, come back here and we'll be waiting.❤ Xx

@VenusStarr I’m so so sorry you’ve had this news. It’s a shitty thing to happen, let alone repeatedly. Be kind to yourself over the next few days/couple of weeks. Sending lots of love ❤️

I’ve been chasing my genetic report again all week, finally got through to someone helpful and been told it’ll be ready around mid November 😱 which will be 16 weeks from my delivery date. Has anyone else ever had to wait this long? I understand increased pressure on NHS due to Covid but 16 weeks seems extreme, and I’m a little furious about it if I’m honest.

@VenusStarr I'm so sorry to hear of your news. My heart sank when I read your message. I really hoped it was all going to work out well for you. But please come back here to talk when you're feeling up to it - it's a community of amazingly strong women who will be a lifeline as you start to move forward again. Take care of yourself x

@Jellystar23 That's outrageous to have to wait so long for your genetic report. Did you get through to the genetics department itself? That's where I had the most success - finding out their number and then ringing once a week, so I knew exactly when my report had been completed and sent to the doctor.

@Everhopeful35 the genetics department won’t speak to me, they told me to contact my consultant. His secretary rang and they told her mid November - she herself thought it was dreadful and told me to contact her again in two weeks and we will try again.
There is a clinical side to the lab with duty genetic counsellor last but I tried all day Friday but they don’t answer the phone, they ask urgent medical queries to leave a message and they’ll get back to them. So frustrating. For them it’s just a test, for me its a whole lot more. I’ve emailed the lab back asking there is any way of paying private and getting it quicker.
I love the NHS but we shouldn’t have to keep paying private fees because there is no systems set up for us. Well there isn’t in wales, not sure how it is in England. So frustrating 🤯

@Everhopeful35
I started my hydroxy 3 months ago now but I also started with a loading dose that I wasn’t sure about as everyone seemed be be taking it for 6-8wks before TTC obviously now it will be fully in my system I’m due to test next week on my 3rd cycle since starting,
I normal fall very quickly but haven’t so far but I have been moving ect so I don’t think the additional stress has helped, hopeful for this cycle,

@KtAgs have you had intralipids from ovulation?

Also not sure who asked sorry had a lot to catch up on but I also take daily mini aspirin and a few other vitamins that Dr S recommended and also my acupuncturist also use Fermometer to track ovulation and test.

@VenusStarr So sorry to hear your news take care of yourself ❤️

@VenusStarr I'm really sorry to hear this. Please look after yourself and take as much time as you need. It's a tough journey and I think this group is amazing in supporting each other. We are in this together xx

Congrats @KtAgs really happy to hear your lovely news.

@VenusStarr sorry to hear, its just miserable isn't it.

@KtAgs, hope all goes well for you. What meda are you on?

I'm currently going thru my 3rd mc, have been bleeding for 4 weeks and scan today showed a small amount is still there.. Sent home for natural management. I was 6 weeks pregnant.

I have my 1st appointment with Mr S next week and I guess I may still be having positive pg test by then. Does anyone know if they can still do all the NK tests if you are technically pregnant?? I have had to wait 5 wks for the app, so don't want to miss it, nor delay treatment.

Does any one also know if they are prescribing pred, if you sign waiver/agree to self isolate? I feel like time is ticking and don't want to go through this again!

I'm really sorry to hear you're going through it too @Whyisthistakingsolong ❤️

I'm still waiting to start bleeding - I stopped cyclogest on Friday after the scan but nothing yet. Its just awful waiting in limbo to start to miscarry, I don't want to go out in case it starts while I'm out.

I've got an appointment with professor Brosens from the implantation clinic tonight (the uterine nk cells biopsy clinic), he prescribed the cyclogest so we wanted to talk things through with him. This is my 3rd missed miscarriage, this one is the biggest the babies have ever got, just no heartbeat, but that's a pattern now. The epu aren't bothered about helping us get this little one tested, so I'm determined to pass them on my own and take them to Tommy's myself - it's giving me a lot of anxiety not knowing when it will happen and worrying I'll not be able to do it.

We're looking into sperm dna fragmentation and I do think I'll book in with Dr S too. Despite being under a Tommy's recurrent mc clinic, we're getting no help. Apparently they're discussing our case tomorrow. But they just don't seem concerned at all - this is my second loss under their care. So I think we need to take it on ourselves.

I'd be interested to know the answer about having tests whilst still having hcg @Whyisthistakingsolong.

I can’t remember the timing of the nk cells tests but he’ll want a full picture of you therefore many tests won’t be carried about until your periods have returned - I seem to remember day 3 of cycle.

@VenusStarr and @Whyisthistakingsolong - thought I'd chip in here to say that I had a different experience from @Naticle. I miscarried (medical management) three weeks before seeing Dr S for my tests. I was still bleeding and my HCG was still high enough to be getting a positive pregnancy test (I didn't get a negative test until about four weeks after those tests!). I asked about this at the clinic and they said it wasn't an issue, so I'm sure you'll be fine. I'm so so sorry to hear that you're both going through this. My heart breaks for you. My last miscarriage really floored me and I didn't think I'd ever be able to press forward again and start feeling positive, but more than two months on and I'm doing a lot better. Just look after yourselves and know that we're all here when you want to chat. x

@VenusStarr I'm really sorry you're going through this :(
I was under Tommy's and tbh they were a total waste of time:m. No help whatsoever and didn't do a single test. My GP was more helpful. When you feel the time is right I would go with a private clinic, most of us are with Dr S but I have seen Prof Qenby too. Prof Brosnens works at the same clinic as Prof Q so I hope he has some answers for you. I wouldn't waste your time with Tommy's unless they give you some direction after discussing your case. I wish someone has told me this and I wouldn't have waited around last year xx

Thank you @HoldingOn2Hope, I'm thinking the same about Tommy's - they just don't seem concerned at all. Prof B forgot about my appointment, trying again tonight.

Thank you @Everhopeful35, I hate being in this waiting for it all to start bit. I know what's coming so I can't do anything to distract myself. I know it will take take and I will start to feel hope again - it took a really long time after my second loss. I just feel really angry 😢💔

Interesting talk on woman’s hour today on radio 4. The crux of the talk was autoimmune conditions and their effect on Multiple Sclerosis but an interesting side talk was the effect of pregnancy on MS suffers -those with auto immune conditions and how auto immune conditions are (normally) relaxed in pregnancy.

When I was treated by Dr S I repeatedly felt I was seeing a quack -especially after seeing Robert Winston’s comments but this talk really backed up why his treatment works.

Interesting if you have a spare 10 mins.

That's interesting @Naticle, will check it out.

I had a telephone appointment with professor Brosens last night. He agrees with us that there is a definite pattern in our losses now. He has suggested we try steroids next time as he thinks it's my lining causing a nourishment problem - I'm assuming pred? But he was saying that it's not recommended during covid, but I said I know lots of people are able to use it. He reassured us that there is definitely hope there for us. We both came away feeling a bit brighter knowing he's willing to support us with this. They're reopening the nk cells biopsy clinic soon, so once this miscarriage has passed, I think I'll go back for the second biopsy just for reassurance.
I'm still pregnant, no signs of the miscarriage starting any time soon. I'm struggling with that, it feels like I can't really process it or grieve until it's over.

Hi all hope your all well and looking after yourselves,
I had my bfp yesterday which is exciting and terrifying at the same time.
I started the Cyclogest last night is anyone else using them? Anyone found best time of day to do them? I had an awful night sleep up and down to the loo every 5 minutes.

Congratulations @LRL12 ❤️ I used to do them morning and early evening, 12 hours apart and I used the back door and didn't really get any leakage etc.

I'm still waiting to miscarry. I actually feel very pregnant, if I hadn't had the scan I'd be convinced that things were OK. It's cruel how your body tricks you - I had hoped that me stopping the progesterone might speed things up.

Hope everyone is OK x

It's a bfn for me too this time! After a really good response to the meds and lots of dominant follies I was really hopeful 🙄 so was Dr S he was convinced I'd be pregnant this month that he didn't even give me a prescription for ovulation meds!
Hope you're all doing ok.
@VenusStarr I really understand, all mine have been mmc and unless I had scans I wouldn't have known. Could they not give you the medical management (pessaries) to start it off? Xx

Thank you @VenusStarr
I’ll try that Dr S said I could do both together if I wanted to do you think that causes more leakage 😷
I’m so sorry it’s a horrible waiting for things to happen, hope your as ok as you can be ❤️

Sorry it’s not better news for you this month @HoldingOn2Hope xxx

@LRL12 Congratulations on your BFP. I'm crossing everything that this is your 🌈

@HoldingOn2Hope I'm so sorry about your BFN. That's rubbish. But it's good that you responded well to the meds and had lots of follicles. Hopefully the same will happen again next month 🤞

@VenusStarr Missed miscarriages are the worst. Your body thinks it's still pregnant and you're just waiting for it to pass. I would definitely ask for the medical management if you can. My local hospital don't offer it, so I went to a different one with the last miscarriage who gave me the tablets.

Quick update from me: I started a new round of IVF last weekend. I'm halfway through now (on short protocol) and had a scan this morning. I have 13 follicles all of the same size, growing at the same rate, with some other smaller ones coming through. Praying we get a good amount, as we're doing PGS testing this time. After egg collection, I'm starting Humira and, again, praying my TNF alpha goes down and I don't have to do two lots of it. That way, I reckon I could transfer this side of Christmas... only if we get normal embryos. It feels like there are so many moving parts and I'm waiting for something to go wrong!

@LRL12 gentle congrats! Our situation sound very similar - I have also been on the hydroxy for about three months and just got my bfp this morning!
I have managed not to freak out so far, but only because I'm trying not to think too far ahead. I wonder how long it will last! I've been on cyclogest from ovulation and use it just before I go to sleep. X

@LRL12 @Hippo20 gentle congratulations to you both 💕