Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

Yes, I was high for everything but guess not too far over, just getting it all to come down enough x

just started a new cycle and pretty sure this is going to be our final attempt before starting IVF if it doesn’t work this time. Not 100% sure but we’re finding it hard to draw up a timeline / decide when enough is enough and to just go for IVF. Fingers crossed for this cycle so we don’t have to make that decision 🥲 🤞🏻

NHS wouldn’t test my second MMC because my first one had karyotyping and came back normal. Apparently that’s their protocol..?!

OH @Meg310532 that's wonderful news and a girl :) so glad you can relax a bit more and have a month off of travelling down to epsom and coming off the steroids. How are you feeling?
Yes this is my first hysteroscopy, they said they will remove what they can see, but they aren't fertility specialists, it will be in the EPU where they usually remove fibroids and retained products, so if it looks bad will have to refer me again and to have another one under general. Hoping this is not the case and will just get it resolved tomorrow. Thinking once thats confirmed I will start the Hydroxy again (as need to have it for 6 weeks prior to TTC) and then have my holiday in April and start trying again in May/June. Glad I have a plan, but can't even bare to think about being pregnant again and the anxiety that comes with it, esp now that i will be convinced we will have another genetic issue.

@Hopeandfaith1990 i can't believe after 5 miscarriages they didn't test that for you. :(

I have had 6 miscarriages and they have tested three of mine, with only the last one showing genetic issues. Keeping my fingers crossed for this cycle for you :)

Hi guys wow it’s been busy on here. So much to catch up on so I sorry if I miss someone please do t be offended x
@Meg310532 meg that is just a wonderful and to get past that 12 week mark is fantastic you just keep going and doing what you are doing xxx
@Jecca88 I’ve had 3 hysteroscopys just took painkillers before having them the way one where they took a biopsy was uncomfortable but I never even got a LA, we are hard core up north 😂😂😂. I wish you every luck.
@v60 @Hopeandfaith1990 hey guys ❤️. Just looked at my results my total no was 230.9 activation marker 0.51 and cytoxicity 27%.
im doing my consult about donor eggs/own eggs in just over 10 mins am so nervous. Sorry whoever was taking about starting ivf i pretty much always got pregnant within 3 months of trying then after my last loss nothing for a year so thats when we went to ivf , we did pgta and worked on our 1st transfer but lost it at 10 weeks. I’ve lost 4 pregnancies now, no pattern 1st a blighted ovum 2nd cystic hygroma that resolved but lost at 15 weeks, 3rd ivf shehatas protocol lost 10 weeks and I had a chemical at some point in the middle. Xxx ugh I’m nervous lots of love to all xxx

I know - I was really upset in hindsight but they told me initially literally as the MVA was beginning so I was just not in the right headspace to argue. They said once one comes back genetically 'normal' they don't test again. So annoying.

Wishing you lots of luck for your hysteroscopy - I hope it isn't painful and may lead to a little bit of closure if such a thing exists.

I am going to contact CRP today re super ovulation. I don't know if they'll allow me to do it as I'm still under NHS but I'd like to try. I think its a good idea to try before starting IVF. Thank you for the idea. x

@Gizmo1983 hope your consult went ok. You’ve been through the wringer, haven't you!

@hopeandfaith1990 so sorry they won’t test each time. It’s so frustrating. And it’s such a vulnerable time to be making any decisions or pushing a direction. Fingers crossed for you this cycle. I tried acupuncture once and wasn’t a fan, I feel like everything is expensive enough already and it’s needles…which is ironic given clexane is on my protocol but I really hate them

@Jecca88 everything crossed for things to be straightforward tomorrow and some magical clarity. Thanks for the good luck. I know I said I was in my TWW but I couldn’t resist testing this morning. I can’t tell if it’s too early or an evap. I was reading something about hyper fertility which seemed applicable in my situation and will have to discuss with my consultant. Everything in me is just like “here we go again” and not in a good way. There’s a billion women pregnant at my work at the moment. Obviously not a billion but it feels like it.

@Meg310532 another milestone down! Lovely news. And hurrah to coming off the steroids!

@Objectiontime sorry for your losses. I hate the waiting, I am not very patient at all and it just seems so endless - waiting for results, waiting in the TWW, waiting for test dates, waiting for appointments, waiting for a period come after a miscarriage so I can work out ovulation... I find it hard to plan properly but I can’t just put everything on hold either yet I’m living in limbo.

Hey guys ugh nothing ever goes straight forward does it? My womb lining was thicker than they’d expect they think from the provera so have to have another period and a scan straight after grrrrr so that’s me another 3 weeks of nothingness till another scan and another consult this dr doesn’t think there’s anything wrong with my eggs it’s my system but other 2 drs say it’s coz my eggs are old so who is right. My amh is down to 3.4 so I’ll be lucky to get 1 egg per cycle she didn’t mention donor eggs I did but she says she does t think my chances with donor eggs will improve. Where as the other 2 drs do. Hubby isn’t bothered if we have a baby anymore he says he’s perfectly happy with it without which I guess takes the pressure off me and I really want one but it just feels like I’m getting more and more questions rather than any answers xxxx.
@jecca I just want to wish you the absolute best of luck I have everything I can cross crossed for you xxx
@v60 thanks sweet I need some good news soon lol
@Hopeandfaith1990 thats rubbish my last 2 were tested by the bhs granted the 2nd nearly didn’t happen as they fdid the wrong paperwork. You can get the products tested through CRP just good to know for the future xxx

@Jecca88 honestly i am so happy to not have to keep going back to Epsom, I really need a break from the travelling to and from there. I didnt realise that I wouldn't have to go back till 16 weeks. It feels a long time to not have any reassurance scans though, but hopefully that means they are happy with everything. The anatomy scan I had yesterday was all normal too so thats good.

It definitely feels a lot more manageable in your head when you have a plan doesnt it, I really struggle without a plan of action. so i am glad you have a plan moving forward and I really really hope that everything goes ok with hysteroscopy please let us know ! will be thinking of you !

@v60 thanks so much hun ! i cant wait to be off these steroids totally. feels such a long time i have been taking them x

@Gizmo1983 i honestly never thought i would get to this point. I actually was in the infusion room at CRP yesterday and a girl I have also been chatting to on mumsnet was in there too - it was so emotional and lovely to meet eachother!!! x

Hey @v60 have you tested again today? I know how you feel - honestly every single person i saw last week in the street or my friends was pregnant. and also totally know what you mean by hear we go again :(

@Hopeandfaith1990 let us know what CRP say, you might have to have a consultation to start - which is pricey at £350 for a 30 min conversation. But if you take all your results or send them forward they could come up with a good plan. it might be less costly than IVF.

@Gizmo1983 - yes they did actually say they can do it without Local - not sure what the risks are of having it, but i will take all the pain meds. I am sorry your appointment wasn't straight forward - its so hard to know which consultant to go with, you really feel like you have to do all your research yourself. Could they count your follicles? Last time you said there were a lot. I can imagine your hubby sayin that really takes the pressure off, but its so hard to come to that decision and agree. i feel like this isn't an option for me right now, i am just so not at peace with not being able to have a child.

@Meg310532 - i can totally imagine, its amazing and so happy for you and that this has happened :) I have such a good feeling and hopefully one day we can meet at the CRP room :) was it someone from this thread you met?

@Jecca88 I tested again this morning and it’s a much clearer positive. I’m feeling pretty numb - all three times I’ve seen heartbeats and then MMC so I’m dubious about the outcome, time will tell. Hope things went/go ok for you today.

@Gizmo1983 what a rollercoaster, and you’re right, it’s so hard to know what doctor to trust. Makes me realise how little is known about fertility at the end of the day

hey @Jecca88 how did today go hun?? .. what did they find/do? have been thinking about you.

It was someone on a different thread that i met ...! it feels emotional when you meet people walking in a similar journey that you have connected with and been routing for!! xxx

@Jecca88 hey sweet how did it go today so sorry I haven’t messaged sooner I’ve been in bed with an evil migraine, if I’d been offered some drugs before they hysto I’d definitely have taken them lol I’m scared of pain. Im defo not ready to stop trying yet.
@v60 so sorry i missed your post yesterday got everything crossed I know all too well the feeling g you describe, I believe there are meds etc we can do to help but also there’s a lot of luck involved. Xxx

@Jecca88 also hun how did you feel coming off steriods ? Not sure if it’s coincidence but I have taken 4 the last two days instead of 5 and woke up with the worse headache and feel a bit sicky today ! Xxx

Tentative congratulations @v60 I really hope this is the one. Is this your first pregnancy on the protocol?

Thanks for checking in @Meg310532 and @Gizmo1983 - yesterday went aswell as it could and just relieved its over. They did a local anesthetic and the procedure was over in about 30 mins. It was quite painful at first and actually last night felt so sick with pain. They confirmed there was pregnancy tissue, i couldn't look at the screen at the time so my husband filmed it and man it looks strange in there, like a scraggy cave haha. she said she couldn't see any adhesions or scars and no signs of ashermans at all which is a relief. She showed me the tissue after it was removed which was about the size of two grapes and surprisingly like orangey/yellow in colour. Lets bring on the period :)

@Meg310532 - tbh I was feeling so low when weaning off the steroids as it was post miscarriage and had headaches from crying and also the general so really don't know what is normal. I have heard that feeling sick is common, as it masks a lot of pregnancy symptoms. Maybe call CRP and see what they say - they will prob advise paracetemol for the headaches - do you feel comfortable taking that?

Hello all, tentatively joining as have my first appointment with Dr Edge next week following my 2nd missed miscarriage, diagnosed on Monday, with an ERPC the following day. Both miscarriages happened at around 8 weeks, which feels like too much of a coincidence, so hoping testing might give me some answers.

I had some basic blood tests following the first miscarriage which showed everything was normal, but obviously they didn’t test for killer cells etc. If anyone has any tips on what to expect or how to prepare for the first appointment I’d be very grateful.

Lastly, I just wanted to say what a lovely little community you’ve created here during the worst of times. I am so sorry so many of you have been through such a rough time of it, but encouraged to see some hope & positive results too. Best wishes to you all.

@Jecca88 oh I’m soo pleased that they managed to do everything yesterday and you don’t have to have further treatment and you don’t have ashermans what a relief. So will you now have a proper period that the retained products have been taken out?? Sounds horrible the pain and stuff though sorry to hear they you were in such pain !!! God it’s been a bloody journey hasn't it. Hope you are feeling a little more positive hun !
good idea hun I will message the clinic and ask them if they are happy for me to take paracetamol xxxx

@Meg310532 thanks hun, yes such a relief. Hoping that my period will return in a couple of weeks and then i will start taking Hydroxy again. I am trying to remain hopeful but just know the next pregnancy will feel even more anxious :(
Hope you feel a bit better soon :)

@Jecca88 I’m sure you’re glad it’s done. It sounds like a positive and clear outcome…and back to the waiting game…

Thanks, it’s the second with pretty much the same protocol. I was a bit annoyed because my consultant said Intralipids every cycle on a certain day, we’ll try naturally for 2 cycles and then review. But the clinic for the Intralipids is separate to my consultant and I had to get a prescription each time - contacted my consultant to get the prescription for the intralipids for this cycle and the nurses said no, I was “covered” by the last dose and don’t need another one each cycle…contradicting what was said in the actual appointment. Doesn’t make sense to me, I suspect they were gatekeeping her patient list…care is tricky here…I have to go through those nurses and only one day of the week. Slows everything down and definitely not patient centred.

@Gizmo1983 hope your migraine has passed. I get them too, hate them. The day after is nearly as bad as the day itself!

@Meg310532 I get HG every time and the steroids mask those symptoms sufficiently until the afternoon…so it could be a bit of weaning off but it could be just one of those things. Hope it passes either way.

@Fletchasketch sorry you’re here but glad you found us. When I go for appointments, I have a list of all the dates, outcomes and what protocol I was on printed on paper. I get flustered about what happened when and hate going back over it all. It’s one less thing to think about.

@Jecca88 thats all great news hopefully it’s onwards and upwards from here xxx sorry it’s a short msg migraine is back xxx love to all

@Fletchasketch hey hun ! Sorry you have found yourself here :( so the first appointment they will just discuss the possible reasons for miscarriages and then you will be asked what bloody tests you want to go ahead with. I basically went ahead with the majority of them, which was about £3,400 worth! Then the second appointment will be to discuss the results and then they will tell you what treatment plan to go on. All my NHS blood tests came back normal but it’s the specialist NK cells testing etc that NHS won’t offer. When is your first appointment: I love Dr edge I always requested to have her after I met her as I found her so kind and caring. I had my initial appointment with prof Shehata and one other appointment xxx

@v60 ohhh that’s so interesting to know that!!! I was thinking bloody hell I haven’t had any pregnancy symptoms apart from sore boobs but maybe the steriods just masked it all x

@Jecca88 i can only imagine hun! It’s such a bitter sweet feeling as you know that a positive just leads to weeks of anxiety !! I’m glad you will be able to start on the protocol again soon and not having to wait too much more. Just so bloody pleased for you that they managed to get the retainer products out and sorted !!!!! X

@v60 Very helpful, thank you. Already have a ton of notes/questions ready to go.

@Meg310532 my first appointment is next Wednesday. Good to know the costs, if that’s what it is I’ll pay it but eye-watering really! I only had my last set of blood tests in October which would have been a just couple of months before my second pregnancy, but sounds like I’ll need to pay for another set! Can I ask did you go for any tests on your partner or just you? Huge congratulations on your pregnancy, I have everything crossed for you,