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Miscarriage/pregnancy loss

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Immune/NK Issues - aka Pred Thread no 26

998 replies

KtAgs · 11/10/2020 19:00

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.

OP posts:
Everhopeful35 · 17/11/2020 17:50

@Rebecca9876 That's SUCH good news!! I've been thinking about you this afternoon. So so happy to hear baby two is alive and well. Has the harmatoma shrunk down a bit now or are you still being advised to rest?

VenusStarr · 17/11/2020 17:58

I am so sorry to hear this @Sophfr17 ❤️ it's absolutely heartbreaking. I know exactly what you mean about not doing ivf until you have answers. We have our nhs round waiting but they've said they wouldn't change the protocol even though I've had 4 losses now because I don't have anything clinically wrong, so they'd just use progesterone, which I had this time and it failed. Sending love x

@Rebecca9876 lovely news about your scan today ❤️ ik glad you got checked.

I've got an nhs scan in Saturday to check the potential of retained tissue. My results appointment with Dr S is tomorrow and my car broke down today 😭 I'm so stressed. Luckily I can take dh's car, but it means I have to take him to work at 5am and then it's a 6 hour round trip in a car that I'm not confident in. Feeling so overwhelmed, but trying to focus on the fact that this time tomorrow I should have some answers 🤞

Rebecca9876 · 17/11/2020 17:59

Thank you @Everhopeful35!! No it’s actually a bit bigger which isn’t ideal but I’m trying to rest a lot as you say.

Are you still going to use the trigger shot this month? I was just wondering if Dr S thought the follicle is going to grow enough to try - I really really hope so!! x

Rebecca9876 · 17/11/2020 18:09

Thank you @VenusStarr. Urgh that is so stressful! Just try to take the driving as easy as possible/ maybe listen to calm music and as you say, tomorrow you will get some answers which is great. Do let us all know how it goes x

Everhopeful35 · 17/11/2020 18:47

@Rebecca9876 Take it easy and let's hope the haematoma reduces before your next scan. Keeping everything crossed for you. If it makes you feel any better, I was chatting to Dr S in my consultation a couple of weeks ago about Clexane, as my former specialist at St Mary's was adamant I take it in pregnancy and Dr S doesn't believe in it, because it can worsen haematomas if they form. Anyway, during that discussion he said 'every one of my pregnant patients this afternoon has a haematoma and they're doing fine'. Thought it might make you feel better to know how many people suffer from it.

Oh and re the trigger shot, I did it last night! I may have only produced one follicle, but it was 20mm and ready to go, so we've been getting busy... 🤣

@VenusStarr Good luck tomorrow. I hope it goes okay with Dr S tomorrow. Will be thinking about you x

Lalaifa · 17/11/2020 18:49

@Rebecca9876 amazing news about the scan!! So glad it went well. X
@VenusStarr sorry you have a bit of a stressful situation tomorrow, but I really hope you get some answers. Let us know how it goes. X

Rebecca9876 · 17/11/2020 18:52

@Everhopeful35 thank you that does make me feel better. Oh 20mm is an absolutely brilliant size, completely spot on in fact!! I’m excited for you - it does only take one after all. Have absolutely everything crossed. And enjoy getting busy... ;) x

LookingforAnswers86 · 17/11/2020 19:30

@Rebecca9876 what a lovely update x I wonder does taking aspirin increase your chances of getting a hematoma, guessing it does if loads of his patients have it. @Everhopeful35 he said the same to me when I asked re taking clexane as I have some leftover.

@VenusStarr hope your appointment goes well. The journey will be worth it 💪

@everhopeful35 good results, I hope this is your month!:)

Whyisthistakingsolong · 17/11/2020 19:31

@rebecca9876 that's fantastic news, I was thinking of you today. I hope all continues well.
@VenusStarr good luck for tomorrow. If you're going to Epsom, Organix coffee shop a few doors down from the clinic does a good coffee and lovely food which you will need after all that driving. Let us know how it goes.

@Everhopeful35 I meant to tell you that your pharmacist was amazing and helped me get a new humira shot! I'm on 2nd injection. Had to take a longer break between the injections than planned (three weeks instead of 2),hope it doesn't make tooo much difference.

LRL12 · 17/11/2020 19:42

That’s amazing news @Rebecca9876 so pleased,

Good luck tomorrow @VenusStarr hope you get some answers,

I’m there tomorrow with the professor not met him before 😬

@Everhopeful35 good luck this month fingers crossed for you.

So sorry to hear your news @Sophfr17 take care of yourself ❤️

Rebecca9876 · 17/11/2020 19:46

Thank you everyone!

Good point @LookingforAnswers86 - yes I’ve read it does and I had to immediately stop taking aspirin when he found it (I’ve since been on nifedipine instead, which apparently helps with blood circulation and stops cramping but I suppose doesn’t thin the blood in the same way?)

Rebecca9876 · 17/11/2020 20:08

@LRL12 does that mean it’s your 12 week scan tomorrow?? That is so exciting if so!

LRL12 · 17/11/2020 20:19

@Rebecca9876 yes 12wk scan tomorrow 😬

LookingforAnswers86 · 17/11/2020 20:33

Ahhh @LRL12 ALL the luck for tomorrow x

KtAgs · 17/11/2020 21:04

I'm seeing the professor tomorrow too but I might be just over 14 weeks? I got bumped up 4 days on my dating scan. I'll see you there @LRL12.

Great news @Rebecca9876. Mr S said the risks drop dramatically when there's a baby with a hb measuring on for dates. Fabulous news. Xx

OP posts:
LRL12 · 17/11/2020 21:19

Thank you @LookingforAnswers86
Good luck tomorrow @KtAgs I’m in at 1pm I think I said 12pm before got my times muddled up but might still see you. X

VenusStarr · 18/11/2020 19:24

Thank you everyone for the lovely supportive messages yesterday ❤️ I made it in one piece and it was actually fine driving dh's car. I reflected this morning that I've lost a lot of confidence in myself.

Anyway, I'm home now, had my results appointment. I have very aggressive nk cells - very high is more than 1.8 and mine is 3.05 which I thought seemed a lot. So I am on the complex plan, need to take the loading dose of hydroxy, starting tomorrow and I had intralipids today as I am due to ovulate next weekend, all being well.

Feel so relieved that we finally have some answers and a plan to follow. We did discuss superovulation and due to Christmas and them being closed, we will ttc on our own and then if no luck try superovulation in the new year. My amh has halved since February 😔 so we may still use the nhs ivf cycle if things haven't happened by the Spring.

I asked him if we should have hope that we will get our baby and he said 100% I love that he's so confident in this, it helps me.

Hope everyone is doing OK xx

LookingforAnswers86 · 18/11/2020 19:47

@VenusStarr good news you have a plan of action :). Why did you get ovulation intralipids out of interest? Is it part of your plan?

Re AMH...I honestly wouldn't focus on that result...mine magically went up by 1.5 in the last 6 months so different labs clearly have slightly different test methods / results. I know it can be worrying but remember it is not a mark of quality... x

Jellystar23 · 18/11/2020 19:59

@VenusStarr so glad you have your plan in place. Totally agree with you on his confidence - In my last pregnancy at 13 weeks, a registrar told me that she wasn’t confident as miscarriage wouldn’t happen again. Considering reassurance is one of the recommended treatments on the NHS, she clearly didn’t have her prescribing pad with her that day 🙄

Regarding Christmas, did they say when they are open etc? I’m on a similar plan to yours but intralipids from a BFP instead of ovulation (My NK aggression levels were 1.78) so just making sure if this month is a success my treatments won’t clash with clinic closure. TIA

Lalaifa · 18/11/2020 20:05

@VenusStarr I am so happy that you now have a plan of action. I think my NK aggressiveness was about the same 3. Something. We can do this! 💪I hope you're not going to need IVF. Fingers crossed. Amh results are more scare mongering than science. It is not a reliable method to measure egg quantity and most importantly quality like LookingforAnswers86 said.

So I have a bit of a situation and I'm struggling atm. My period is late but I've have done two pg tests and they are both negative. My period doesnt tend to be late, I am spotting and I dont really know what to do. I feel crampy and emotional. Not sure whether to tell the GP yet or wait another week. This is very very unusual for me. What shall I do?

CATALYST2019 · 18/11/2020 21:33

Hi ladies,

I just wanted to ask if anyone if anyone is taking DHEA supplement with Dr S plan
It is recommended in the it starts with the egg book ?

Jellystar23 · 18/11/2020 21:34

@Lalaifa - apologies if you’ve said this before but are you using cyclogest? I have found in the past that this has delayed my period by a few days. Maybe wait a few days, especially if your already spotting.
Hope it comes soon for you, the wait in between cycles is frustrating and long enough without any added unwanted delays!

Lalaifa · 18/11/2020 21:43

@Jellystar23 thanks for your answer. I stopped the cyclogest at day 27 as directed by Mr S. It is now day 33, normally period arrives on day 30. Yes, I'll wait and see what happens. It is so frustrating tho, as got the intralipids booked for ovulation next month and prob have to postpone it.

VenusStarr · 18/11/2020 22:15

Yes @LookingforAnswers86 I need intralipids from ovulation and then every 4 weeks until 16. I think it's because my cells are so aggressive and something happen those early days. I'm not sure I fully understand the intralipids but I'm happy to try them.
That's good about amh - I know it's about how well you'll respond to ivf meds more so than egg quality, I'm trying not to focus on that.

@Jellystar23 there was a sign in the waiting area that said its closed from 24th December until 4th January. He said I'll be unlikely to get in for my scan if I did superovulation in December and I've missed it this cycle.

Good to have a 3+ buddy @Lalaifa, we can do this 🙏 sorry about the bfn and late period, when did you last test?

@CATALYST2019 I don't take dhea. There was a thread in infertilty and someone took it and it affected her testosterone levels (I think it was testosterone but basically it had the opposite effect), so it might be best to check that it's something you should take?

X

CATALYST2019 · 18/11/2020 22:42

@VenusStarr thanks that's helpful advice. I Took it for 3 weeks and don't think I ovulated this month so I'm going to stop taking it. thanks xx