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

Hey ladies hmmm. So I keep getting pretty intense cramps, have had pink discharge last few days and I have no symptoms not even sore boobs which I always have was 99% it’s all over but tests are getting stronger so I have no idea what it means. I had symptoms last time even when on the steroids. I can handle whichever way it goes just the not knowing xxx
@Objectiontime you’re so right it literally could be the tip of an iceberg that hasn’t been totally explored yet. When I was speaking to the dr the other day she said they’ve started trials with semiglutide I think it was more the getting pregnant rather than staying pregnant but who would have thought xxx

@Gizmo1983 So hard to know what's going on with the pink discharge and the cramping I know. I could quote the many who I have read have these things and go on to have successful pregnancies but...
I did have quite a bit of cramping with my second chemical and I do think it was all related to deeper implantation rather than the end of the pregnancy to be honest. Then along came the barrage of negative antibodies or whatever one should call them and out pay to the positive almost overnight.

I only ever had light pink discharge with all my pregnancies once or twice around the likely time of implantatiin but I know this can be ongoing for some.. I am praying that your darkening tests are a really good sign. I completely get what you say about not knowing. It's the worst nightmare!!

Interesting what you mention about the semiglutide. I think it treats diabetes. Something to do with reducing sugars in tge blood stream I believe. I do feel more research coming on now so I am just going to have to look that up and see if i can find any research or info in general on how it might relate to pregnancy.

Sending very positive vibes your way xxx

@Objectiontime thanks sweet. I know it is just a wait and see game I just hate the just not knowing I’ve always taken it easy when I’ve found out but this time I’m just keeping busy so I can’t think. I am expecting the worst as that’s my gut feeling but what will be will be. I’m on all the meds now so got the best chance.
interestingly my hubby had started mounjaro the equivalent to semiglutide which does make u think actually as literally nothing else was different could this be the reason for a positive test for 1st time in over 2 years ( minus ivf) I was drinking and eating crap no supplements only thing I did was increased from 5000 to 10 000 steps . Hmmmmmmmmm???

This is so interesting, thanks for sharing. I also listened to a podcast the other day where a woman from Australia had had 10 miscarriages, gave up gluten and then had a successful pregnancy. I know I shouldn’t self-disgnose, but definitely want to look into it further.

@Gizmo1983 have been thinking about you a lot, hoping those cramps were normal pregnancy cramps and that this is the one that sticks.

Hi all, just catching up after a mad week!

@Fletchasketch my husband is celiac so we eat GF pretty often, it definitely helps me be less bloated but I still eat regular bread. Will read the article @Objectiontime shared. Natalie Crawford MD also credits her success with IVF after recurrent loss to going gluten free.

@Gizmo1983 I'm so glad you managed to get the meds - that's great that they could help you out. I can't believe they suggested moving to Epsom as if its that easy!! And yes soo expensive in Surrey.

Sorry you've had some cramping and discharge. Honestly I think I've read everything on the internet at this point and I really think it can go either way, especially if you're tests are getting stronger. What DPO are you now? It is THE most horrible thing just knowing you have to wait it out. Sending you strength and love.

@Newbeginnings22023 that is so frustrating, I'm so sorry :( did they say why it hasn't been working? Will the gonal produce a different effect?

Update on me: I've had SUCH a weird cycle (lol) - ovulated normally but had a red bleed on 5DPO (very short lived) and 7DPO and had brown discharge in between since 5DPO. 5DPO!! What the heck. Too early for implantation but of course there's the little sick bit of hope in the of my mind whispering that it could be that.

We also went to our first IVF appointment today and I forgot to bring the paperwork (stupidly, they made it very clear what we had to bring but my brain just wasn't working) so we might have f'd up our chances for starting if this natural cycle is unsuccessful. I embarrassingly burst into tears when they told us we couldn't have the appointment. They were so lovely and managed to squeeze us in early next week and we will hope to proceed with it if needed but who knows. I then went for the baseline bloods and the phlebotomist needed 4 attempts of different locations to get bloods and at this point I just felt like giving up! It wasn't her fault, my veins are all crappy and collapsed but at this point I just felt like everything was failing. Anyway! Onwards and upwards hopefully - sorry for the pity party!!

@Hopeandfaith1990 aw sweet I’m so sorry everything just went a bit wrong. It’s insane the amount of stuff they need from you. The amount of times I’ve almost forgot stuff and then.they took my pulse and it was high so they wanted a letter from a cardiologist to say I was ok then they wanted letters from all my cytogenetic tests it’s just bloody never ending. For most of us by the time we get to the ivf clinic we are getting to the end of our tether. The one thing I will say is once you start it moves very quickly I couldn’t believe how quickly we got to egg collection. don’t be sorry please vent here that’s what we are here for xxx
@Fletchasketch thank you so much you lovely ladies are the only people bar my hubby who will know anything about my situation for the much forseeable future I’m so glad to have you.
im 18 days past ovulation I think from my ovulation tests I know my period was a few days later than usual last month and I didn’t note when it started how typical is that.
cramping and bleeding has settled ( for now I’m not holding my breath)
we got our zika results back they are clear- phew.
im on all the meds now and going for 1st intralipids tomorrow, we maybe don’t have the best chance as the hydroxy and intralipids are way later than they would be but after 2 and a half years I just never thought this could happen. I was stupid today and looked up a due date when I’ve swore I’m not doing that stuff this time.
im just trying to hold my shit together if I’m honest, I really don’t want to do a 7 hours round trip for intralipids but it’s better than 14 I wasn’t going to but then realised I have to give this my best shot so I can’t blame myself and know I’ve done my best.
lots of love to you all thinking about you, I’m still looking at kittens that is occupying my mind a bit lol has anyone got a cat ( ignore have 5 dogs 🤦‍♀️🤦‍♀️🤦‍♀️) 😂😂😂

Hello @Gizmo1983 @Hopeandfaith1990 thanks so much for your thoughtful messages. You really don’t think about superovulation not going ahead! I know I ovulate each month oand my periods are regular, so this is just shocking. If the next cycle doesn’t work with gonal f then I won’t attempt any more rounds.

The gonal f is meant to stimulate more follicles and is more aggressive than the letrozole. I will report back!

@Gizmo1983 I hope everything continues as it should, we all deserve our happy ending ❤️xx

@Hopeandfaith1990 I hope your ivf plans aren’t delayed (unless you have positive news of course!) and that everything goes smoothly for you xx

hope everyone else is ok xx

@Gizmo1983 Its so crazy isn't it, I do get it but also I was just like 'please can we just do it today'. So many things need to align for it to work and so many seem out of your control. I'm going to keep taking (and maybe upping) my Cyclogest beyond 10DPO (probs to 14DPO) to try and prolong AF as much as possible so we can start ASAP. Not sure if it'll work but hey ho its probably one of the less crazy TTC things I've done! Glad to hear its a speedy process once it gets going, I think my consideration is also because we're doing PGT-A testing there will be a delay from collection to transfer anyway.

Great that the Zika was clear and that the cramping and bleeding has eased, still crossing everything for you. Good luck with the intralipids today. Its so annoying how far you need to go for it, but you will give yourself slightly more peace of mind knowing you've done absolutely everything you can. I have the opposite! 1 dog and 4 cats. Poor dog is always at the end of the pecking order.

@Newbeginnings22023 I agree, its so crazy that when you ovulate on your own that a process that is meant to supercharge it actually prohibits it! i would never have thought that. Here's hoping that the Gonal F is the one.

Thank you!! At the moment I'm just hoping I can keep AF at bay with extra cyclogest. I can't see how it would be positive news re a BFP with the bleeding and brown CM I've had, also been cramping lightly on and off since 5DPO. Seriously, weirdest cycle ever!

Hope everyone's okxx

@Newbeginnings22023 thanks so much sweet ☺️. I didn’t do super ovulation as I was too far away to do it but. My second ivf cycle was abandoned as I only had one follicle 🤦‍♀️ and it hits you like a smack in the face doesn’t it. It’s just like all that money ( as you still have to pay for the meds/appt) for absolutely nothing. Hopefully the gonal is the magic ingredient I have everything crossed it is xxx.
@Hopeandfaith1990 you made me giggle as I’m a tweaker to try and work my system. At the beginning of this journey I read they use viagra vaginally to thicken ur lining lol the blue bitty discharge was something else lol. With the ivf you just need to go with the flow we did pgta testing as well so it took longer then out of 4 eggs ended up with one useable, just get in place a back up so if say u only get one egg, is it worth sending that one egg off for testing or would u just pop it in and see what happens, what this meant was was I kept on with the drugs as if we were going to put the blast back in when we got the 4 eggs I just stopped so it was nothing lost or you could also pop one straight in and send the rest for testing. ( I’m sure you’ll get more than one it was just something we learned). My first cycle was textbook all went great second cycle a total car crash that got abandoned.
heehee im glad you have so many pets it makes me feel better my hubby thinks im mad 😂😂😂

Hi lovely ladies if anyone is ever struggling with getting intralipids i went to cherish in Birmingham it was absolutely fine, a private room and hubby was allowed in and they lady was lovely so if anyone is ever stuck. She was telling me she had a lady who had 19 miscarriages and came does and she got her baby. I’m still not convinced they do anything but happy I’ve had them 😂😂😂

Hey guys, sorry been MIA, been really struggling after the loss of my dog, can’t believe it’s nearly been 4 weeks. He was our only pet and for us our baby who we had for 10 year and has been through everything with us.

@Gizmo1983 congratulations my love, what a lovely surprise. I am honestly keeping every single thing crossed for you. I’m glad you have found something closer too that can provide you with the meds and intralipids. Is it also essential for the scans etc?

@Hopeandfaith1990 i have seen you’re going for IVF! Congrats on making that decision - where are you going to do it? I too have had my nhs referral come through. Had some really initial meetings etc - but first funding request came back rejected. Due to husbands GP being out of catchment area and also I was distraught but my BMI was 30.08. The NHS will do anything to reject funding. I couldn’t believe it as they weight me with me jeans on in the afternoon whilst I was on my period - i cried on the phone to the admin team and booked to go back in a week later and I was down half a stone in a week, so BMI is within the criteria. Mainly due to it being morning and not having lunch and not wearing heavy jeans. Still it felt like another blow. Waiting to hear back if we get funding.

in the meantime I am back at CRP this Friday for first TTC intralipids post miscarriage back in Jan 2025 after retained products were resolved end of March. I am going to try naturally on the immune protocol for two months and then see where ivf referral is. NHS will hopefully fund the IVf and we can pay for the additional PGTA testing.

hope everyone else is ok - sorry missed lots and sending love to everyone. Xx

Hey @Jecca88 it’s so so lovely to hear from you I’ve been thinking about you loads. I have my dogs ashes on our windowsill I like to think he’d want to be there so he can keep an eye on me. I just want to say I’m so sorry once again and it’s something you can’t just get over in a few weeks it’s like the loss of a family member as that’s what they are.
great that you’re getting back on the ttc wagon although again I know this carries with it good and bad emotions, i struggle to even look at prenatal vitamins and bloody ovulation tests. Just know im thinking of you just remember you have the ivf in the background as well so if it doesn’t happen naturally the ivf is there too xxx massive hugs to you sweet, I’ve missed you xxx

@Jecca88 lovely to hear from you, like Gizmo said I've been thinking of you and your lovely dog. I know the pain will never go away, but I hope its easing slightly 💘

Thanks re the IVF decision (not the process lol - but it did feel good to make the decision). We are doing it at the clinic of Epsom & St Helier hosp - based at St H. I've had a few procedures done there over the past few years and I've really liked all the Drs and consultants I've been with so we decided to go for that. Also, its the only clinic in Surrey (that I know of) where you don't have to go into London for the treatment which is a huge plus for us as its only a 35-40 min drive so much easier than getting the train etc. We applied for NHS but we're not in the right catchment area so are doing 100% private with them.

I am SO furious about your NHS referral meetings - I cannot believe they would refuse you on .8 but also the whole thing is just infuriating. It should be a case-by-case basis and BMI is not a good yardstick. I've experienced this in the past last December and I said to the Dr that after 5 pregnancy losses, when I'm pregnant I'm genuinely terrified to move (and therefore exercise as I normally do) and weight gain with each loss and pregnancy is normal. Also, we're all on the Pred, Omeprazole etc and all of these have weight gain as a side effect. Factor in the mental health challenges that come with recurrent loss and you have a perfect storm for weight gain. But .8 is just a joke.

I've managed to get mine under 30 now and maintain it but I'm still fuming that its still got to be a consideration / or a deciding factor. Sorry, rant over!!

How are you feeling about being back at CRP? In a weird way, it might feel good to get 'back in the swing of things' so to speak, but obviously could be v triggering too. Hoping its the former for you xx

This is third attempt at writing here and I hope it doesn't delete again!! I won't write the whole thing out...just to say I'm going to have intralipids at CRP on Friday too!

So, I was hoping to reduce the pred a bit this month by starting it when my tests showed ovulation, as per usual and then testing for HCG from 10 dpo and stopping the pred if no positive/starting again if positive. Sadly my attempt was foiled by two very strong positive ovulation tests on Saturday but no temp rise. Then, yesterday, I got another huge surge and pain on one side so now awaiting temp rise as I am pretty sure ovulation has now happened. So instead of less pred this cycle I have ended up with 4 days extra!
Not sure if the pred is starting to affect my ovulation. Guess that's the advantage of letrozole and shots but never mind. I will now wait and see if a - I manage to actually conceive this month or whether it will be in to cycle 8, and, of course, whether I hold in to it if I do.
The fun we have ladies!

@Jecca88 for some reason it didn’t click yesterday what you said about your bmi. I think that is absolutely ridiculous how unfair and cruel is that. The nhs really scares me which is awful.
@Objectiontime at least you caught the actual ovulation and didn’t miss it, I’ve heard people say the steroids mess with their cycle but you just don’t know what’s right and wrong and what to do for the best sometimes.
little update on me, no symptoms at all which is a little worrying. I had an appt with my consultant this morning by my dates from my ovulation test I’m 5 weeks today she suggested doing a scan which I never even thought about and they saw a sac in the right place with a foetal pole which she said is great we just need to hope pray cross our legs and fingers and anything else we can. I got scared this morning as I started to feel a little hope and hubby was saying right I’m going to get excited now. I wish he bloody wouldn’t I am still just trying to keep in denial lol as all my mc s are pretty late so really this means nothing 🤦‍♀️

I think you can celebrate the small win of seeing a sac and foetal pole but also protect your heart still ❤ its so hard but I'm happy to hear you saw you should be there at the moment and all we can do is hope it continues in the right way - the waiting game of this whole fandango is almost the worst part (in my opinion) xx

IMG @Gizmo1983 so much finger and toe crossing going in here for you. Fantastic news that they could see positive things. I get you being dubious but if there is a God! ….
No symptoms isn’t a bad thing. I’ve met more people who had none than had any at all tbh.
@Jecca88 I agree with Gizmo re the BMI thing. It is pretty disgraceful that they just dismiss people who are just made differently in my view. I doubt my bmi would ever go below 30 unless I starved myself. I move around constantly at work so I get plenty of exercise and I don’t eat a lot of unhealthy food because if allergies but I am naturally larger than average. All this putting people in boxes is rubbish.

@SWMum9 Was just reading back through the thread and wondered how you were getting on? Did you recover from all your aches.

Thank you all for the lovely messages.

@Gizmo1983 thank you for your lovely message, i have missed you too. How are you doing? so glad there is a sac and fetal pole - what a releif but i know this doesn't mean it is safe for you. Just remember this is a new pregnancy. We got Archies ashes back and i have made a mini shrine for him lols and give them a kiss everyday. I still talk to him. Yes the BMI is ridiculous and honestly i just was so distraught and totally blamed myself again, i felt so embarrassed.

@Hopeandfaith1990 the funny thing is if i was paying for it - they couldn't care less about BMI. not sure if that was a factor for you considering you are paying. I am going for the referral at Kings Fertility. I totally know what you mean about all the meds,throw in 6 miscarriages to tackle and process mentally, of course i am going to put on weight. I haven't been back since finding out we lost our boy in Jan - and the nurses were so lovely, lets see what tomorrow is like. Another huge bill with all the meds i need too :(

Ohh @Frasmac what time is your app - i am going in at 2pm?

Thanks @Objectiontime - its mad isn't it around BMI and infuriating and embarrassing. It really feels all on the woman too, so many factors to measure and test. All the men have to do it jizz in a cup lol. Annoying about the extra 4 days of pred, its so hard to know isn't it. do you always feel ovulation pain?

@Jecca88I've actually had an upset tummy today so they've said they can't do it tomorrow. I'm not sure if a side effect of metformin (started a few weeks ago) or a bug. I'm hoping not to receive an invoice though....how do you find it at the clinic? Are you local? I'm near Reigate so pretty lucky we don't need to travel far

Oh no @Frasmac how annoying. You poor thing. Gosh they better not invoice you - I don’t think so for intralipids just appointments if you cancel.

I live near Streatham - so not too far at all. generally I like the clinic, dr edge is so lovely and so are all nurses and midwives. I think epsom is nice and always get myself some flowers from Market when it is on 🥰

@Hopeandfaith1990 thank you so much yup totally agree the waiting game is the worst it just messes with your head. My next scan is 3 weeks today but I may get a private one, I would rather know than wonder if there’s a heartbeat or not. xxx
@Objectiontime thanks so much sweet I suppose I had symptoms for the others so maybe this is a good sign having none lol. Xxx
@Jecca88 im so glad you’ve got him back it just feels better them being home doesn’t it.
im suprised they still use BMI as our bodies are all different its an unfair measurement. My hubby should be 12 stone according to it but he would look horrific. I used to get ovulation pain exactly as I ovulated I used to find it very useful for timings but since this last mc I dont get it anymore i wonder why it disappeared. Xxx
@Frasmac ih im sorry it’s awful when there’s nothing you can do I really hope you don’t get charged xxx

@Jecca88that's such a nice idea! I have a rummage in tkmaxx :D

@Gizmo1983thanks. I hope they don't...would seem unfair but also I wonder if people sometimes use it as an excuse? Definitely not making it up in my case! congratulations to you as well. 3 weeks can feel like a long time to wait so if a private scan will help I would go for it.

While I'm here I'll try with my back story again
9 pregnancies, 1 DS who is 5
Jan 2019 blighted ovum 7w. D&c at 13 weeks as sac kept growing without any embryo so they wouldn't call it a MC for ages.
April 2020 DS, full term. Gestational diabetes and ITP
jan 2022 MMC at 12 week scan. Growth stopped at 9w, wouldn't test us.
Sept 2022 TFMR. GD and ITP again. My baby girl Ava and the most horrendous thing I've ever been through.
Jun 2023 6w MC
Oct 2023 MMC at 12 week scan.test showed baby girl had Turner Syndrome and stopped growing at 9w.
Apr 2024. MMC at 9w. Test came back with Cx 14 and 18 abnormal
Dec 2024 6w MC
April 2025 6w MC

I have Ulcerative Colitis and Dr S diagnosed PCOS too. My AMH is 60! All NHS testing otherwise normal. Slightly elevated NK cells but potentially higher as I'm already on immune suppressants for the UC.

I do usually feel ovulation pain nowadays. It didnt used to be the case but now it is, more often than not x