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.

@venusstarr i usually am not sure until dpo12, I have had very faint lines earlier but never trust them for sure :)

Girls, random question, its my second month since our last MC and my first cycle was fine usual length 3-4 days but this month its 9 days since my period started and I am still spotting, that has never happened to me before usually mine are quite short. It might just be my body hating me but I feel like maybe the aspirin isnt helping and might stop for a day or two. Just wondered has anyone had this - a really really long period / spotting? The funny thing is I was absolutely terrified of a short period cause they were light last time...kinda ironic 😂😂😂😆

Hi everyone, it's been a while for me, but I'm back TTC. Been following your journeys here and so happy for all the pregnancies, they give me hope. For the ones who don't know me, I've had 3 chemical pregnancies in the last 3 years, and 2 mmc around 8 weeks this year. I'm trying to take the positives from the fact that Mr S' treatment seems to have stopped my chemical pregnancies. I had a very large hematoma with one of my mmc and the latest one was chromosomal. I wanted to comment on the Clearblue weeks indicator tests and warn you that they may actually cause unnecessary worry. I had had a positive experience with them previously when the weeks changed as expected (though miscarried later anyway), but my latest experience really wasn't good. The weeks never went to 3+ and I kept testing like a crazy person. I eventually ended up having a few private hcg blood tests as I was so worried and my hcg had risen nicely. Even if my levels were above 9000, the test still showed 2-3 weeks, and on one occasion it went back to 1-2 weeks. It caused me so much worry and anxiety whilst there was nothing wrong as far as hcg was concerned. I miscarried a few weeks later, but this was the chromosomal one and there was nothing anyone could have done. I then did some research about these Clearblue tests and they really can cause worry, I wasn't the only one with a similar experience. Keeping my fingers crossed for all of you!

@LookingforAnswers86, I had this with my latest miscarriage. I kept spotting pretty much until ovulation following my first post-miscarriage period. It was better with the 2nd one, but still had some light spotting on day 9. Apparently normal and my body sorting itself out (so I was told). My periods are usually 5-6 days.
@VenusStarr, my lines on day 10 have always been incredibly light. Sometimes almost invisible in the morning, tested later in the day to be sure. It's been a clear line by day 12. Day 10 is very early to test considering implantation happens most commonly on day 9.

Hi again @Wireless77 I agree with the clearblue weeks indicator tests. I used them in my first pregnancy and it reassured me but my first scan at 6+6 initially looked like a blighted ovum but a follow up did find the pregnancy, but too small. It just felt like false reassurance. I've never used them since.
Thank you both about the testing, this is my first month and it says to test at 10dpo which is Friday but just thinking its very early as I'm not due on until next Tuesday or Wednesday. I don't know whether to stop cyclogest if I get a bfn or wait it out a bit longer.... Can you tell this tww is driving me 🤪

@VenusStarr, I know what you mean! My testing day will be the coming Monday... I've always tested on day 10, 11 and 12. Just to be sure. If it's still negative with Frer on day 12, I drop Cyclogest. I once brought it up with Nurses and they said to stop Cyclogest on day 10 (if negative) as instructed as otherwise it may make the cycle longer etc. They said it's fine to retest on day 12 and that if the pregnancy is viable, stopping progesterone for a couple of days will not affect it. But I'm too scared to stop Cyclogest on day 10 if there could still be a chance. Cannot advise you as I'm not a medical professional, just sharing my story.

@Wireless77 thanks it reassures me a bit :) I think I remember seeing your name from reading old threads a while back! Are you taking hydroxy and pred or what is your plan? Hopefully we will see some BFPs this month 🙂🙂🤞🤞

@LookingforAnswers86, I'm on hydroxy, GCSF injection on day 6 post ovulation and every 3 days from a positive test (up to 10 weeks). Intralipids from the positive test, cyclogest and all the supplements/vitamins. No steroids for me.

I took cyclogest in my last pregnancy from 7dpo and was supposed to test at 14dpo and then stop it, but I strongly felt I was pregnant so tested early but if I'd got a negative at 12dpo I'd have stopped the cyclogest. I'd done one cycle before and stopped th cyclogest at 13dpo and it didn't affect my period starting.

I think I will test on Friday and 🤞 but stay on the cyclogest until sunday just in case @Wireless77. I think it's the needing to book the intralipids ASAP that's making me overthink as it falls over the weekend.

@VenusStarr, if you see any sort of line on Friday, book Intralipids for Monday. Option to cancel is always there, but this way you secure Intralipids within 4 days. If you get a positive on the weekend, they should be able too see you for Intralipids on Tuesday. They're pretty good with this. Fingers crossed!! x

Thank you @Wireless77 🤞 I see that line on Friday! X

How's everyone doing? I have had a lot of period like cramps today, trying to hope it could be implantation but it feels quite periody / heavy. Ugh. I've not missed this! Only 2 days until I'm out of my misery... Xx

@VenusStarr I have everything crossed for a BFP on Friday

If you don't mind me asking everyone where do you buy your cyclogest from Dr S or online ?
My GP won't prescribe it and just looking at it it's about £100 a month from Dr S just wondered if anyone else had managed to get it from GP or online cheaper
Thanks in advance

Thank you @LaurenAB94 🤞

Can you show your GP the Tommy's Prism trial research? Mine will prescribe it for me now (took a bit of pushing), but only from bfp. I could get the 200mg pessaries while ttc. I've not looked into buying online to be honest. Have you found anywhere to get it? X

@VenusStarr 🤞🏻 And toes crossed for you.

Ovulation seems to be a little delayed for me this month 😤 it’s like watching a kettle boil when your waiting isn’t it!

@LaurenAB94 I get it from my GP. I just told them that I’d been advised to use it by my consultant but unable to obtain it from that avenue at the moment due to COVID restrictions. But I agree with the last reply, Tommy’s have something you can print off to show your GP. Good luck!

@Jellystar23 @VenusStarr thanks Dr S has written to my GP but they won't do it.
I understand not doing it until BFP but he won't prescribe it at all I will try and send him the study from Tommy's. I haven't found it cheaper online and I don't mind paying for it until I'm pregnant but its quite pricy with everything else .
Thanks guys

It's so frustrating @LaurenAB94 the evidence says after 3 you should be offered it. Can you try a different doctor in your practice? I cried to mine and emailed him the study, then he called me back and said he'd spoken to the other GP and he said agreed they should prescribe it for me - he's slightly more clued up on fertility things and willing to support where he can. The first one is just a bit do the basics type GP.
Alternatively could your recurrent mc clinic prescribe it? X

Sorry ovulation is delayed @Jellystar23 🤞 that it happens soon - are you doing anything in particular? We usually try every other day until my positive opk and then a couple of days together. Didn't work this time but we were definitely in the window and on ovulation day. X

@Jellystar23 hopefully ovulation happens soon if not you could try inofolic that's made a huge difference even though I've only been on it a month. Dr S recommended it for me as I don't ovulate every month that's meant to regulate cycles.

@VenusStarr I've sent him the Tommy study and the NICE guidelines by email. My GP is being funny about it because I had several scans on the NHS and they said I didn't have PCOS and Dr S says I do and the bloods confirm it so now he has to agree with the diagnosis 🙈 I can't help it if the NHS missed it on their scans. Hopefully he will prescribe it now if not I'll try the miscarriage clinic but don't think they will do it until I'm pregnant but just want to have a plan on if I can get it from hospital or
GP so I know if I can't I'll need to order more from DR S

I know I sound like I'm being tight with money I don't mind paying for the steroids and things from DR S just thought if the NHS could help out that would be good too x

I completely get it about the money @LaurenAB94, especially when it is something we should be able to get on the nhs. We don't have endless pots of money and it is at the back of my mind how many months we can follow the plan. If there's ways we can save money, all the better :) xx

@VenusStarr thank you I have everything crossed for Friday for you xx

Thanks both. Normally my cycles are pretty regular but every now and again they are a little extended, when it is my period always comes 14 days after I’ve ovulated so I’ve never really thought about using a supplement but definitely something to think about if this becomes more regular.
We are doing the same as you @VenusStarr, every other day incase ive missed the surge.
I’m really bloated today, but I don’t even know if it’s normal or not for me anymore 😂

I completely agree with you @LaurenAB94. It quickly adds up to a small fortune. May be also worth checking if and of your GPs has a special interest in family planning and trying them instead?
It may be worth pricing with your local pharmacy and comparing the prices with MrS. Factor in the cost of the prescription too but even if it’s a small saving, it’s better than nothing especially as you’ll be on them for 16 weeks at a minimum.

@Jellystar23 thanks I might try ringing up boots and seeing if I can get it cheaper from them 😊 hopefully 🤞🏻
I'll keep my fingers crossed for you that this is your month 🤞🏻 xx

@LaurenAB94 I know a lot of people use Asda for ivf meds as it's cheaper, so might be worth trying them too?

Having an emotional day. Stupidly tested today at 9dpo and it's negative 😔 I know it's early but just feel it hasn't worked for us this time x

@VenusStarr thank you . It is early even 10DPO seems early hopefully this month is your month If not you can do the SO program in Dec xx

@VenusStarr It's so early, so don't count yourself out just yet. Mr S makes you test before you might get a positive - I think one of the girls mentioned the other day that 9dpo is the most common day of implantation, so if that's the case then you wouldn't get a positive until probably 11dpo. He must just advise this so that he can start treatment at the earliest possible point. Good luck and keep us updated!

I have to say, I'm a nervous wreck at the moment. I'm analysing every twinge and symptom and already dreading every toilet trip. I felt so sick yesterday that I barely got off the sofa but today I feel absolutely fine, which is very disconcerting. Trying to keep busy but not sure how I'm going to get through to scan day 😔