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

@Gizmo1983 I can't believe you nearly got sepsis the 1st time round. Thats insane and so scary. I did a test yesterday - 3 weeks post D &C and still a faint line - i called up and have a scan and bloods tomorrow to check. I'm three weeks on - and fed up - can't imagine how you're feeling 3+ months on.

@Newbeginnings22023 that does sound rough - sounds like you have a good plan going forward and give you some rest in between before trying again.

@v60 good to hear from you. Remind me are you are the CRP? so two intralipids within the same week? wow that does sound a lot - 3 hours aswell. Keeping things crossed in this TWW for you.
The 7 week announcement - i have also heard people say to me - she said well if i have a miscarriage - i have a miscarriage - i thought what a priviledged to say that for someone who has never had one and also diminishes what we all had to go through - as if its nothing.

@Meg310532 thanks for asking, i am just all over the place, but had a good day at work yesterday and was quite productive. Also met up with some friends on sunday for the first time - which felt like we are getting back to some normality. Got a couple of holidays booked in for april and may too. How are you feeling? still getting the insane tiredness in the afternoon?

@Jecca88 no I’m not in the UK but I’m finding info about CRP, Dr S and this thread very helpful in figuring things out. Thankfully it’s one intralipid every two weeks.

@Jecca88 ahh glad you have some holidays to look forward to hun! You deserve to have some time away from everything and relax ! Glad that work is okay and you are getting back to some normality as hard as it must be.. how is your partner coping ? Im still really struggling with the tablets knocking me out, I asked Professor Shehata if i could take them at night instead but he said no so I’m just battling through it xxx

ahhh @v60 yes thats the same - one intralipid every two weeks, but once pregnant i think its every 4 weeks.

@Meg310532 my husband is ok, he throws himself into exercising as thats his way of coping, but he is struggling with this one. We just check in with each other every day and loads of talking and spending time together.

Thats so annoying about the pred - i thought they told you to take them in the morning because they prevent you from sleeping, so wonder why you can't take them at night if they make you sleepy. Not long now till your 8 week scan :) is it tomorrow?

@Meg310532 I wonder if the changing the time of the pred thing is not wanting to change anything in the middle of stuff? My consultant is like that, she says if everything is consistent then we can tweak the protocol but if we change stuff in the middle of a cycle or whatever then it’s hard to know what was working. Annoying for you though, especially when it’s sleep and energy related. When I’m tired it can really impact my emotions.

@Gizmo1983 just had my hospital appointment and scan and they can see 1cm of retained products. They said I can wait to see if it comes out with first period and have booked me in for a rescan in 6 weeks. Or I could have opted for another surgery. I have gone for the period option as just can’t face another surgery - and also just forces me to have a break. How big is your retained products? Did they ever offer surgery? X

Hi all, can I ask you a question please...
I have literally just started my fourth cycle after my last chemical. My consultant called me when I started the third one and told me to start the pred from ovulation as opposed to the previous request to start when I got a BFP. I think this was probably because of my allergy to intralipid ingredients (peanut) so having the pred earlier might help counteract that,
Anyway, I didn't conceive on cycle 3 (unassisted conception) but I got on okay with tge pred. My consultant is now talking about putting me on lletrozole and/or havi g a trigger shot.i am not sure why this has been suggested. I know I can ask but it just seems odd since I am fortunate to ovulate on my own and have conceived, I just dont stay pregnant. I am thinking that maybe you can only take pred for so many cycles? Currently I am around two weeks off it and two weeks on it, unless I conceive of course, when I will have to stay on it until it gets tappered if I'm lucky enough to get far!
Do you think the idea is that I fall pregnant asap to avoid too many pred cycles or is it something else? I'm not overly keen to keep having to have scans to check follicle sizes because I work in an area where it is very difficult to get time off for these things.

@Jecca88 i went for my 8 week scan today :) and omg I can’t believe it I have realised why I have been so out of it. I have been taking the progesterone in the morning with the steroids and Dr silva said it will be the progesterone that’s making me so tired and out of it not the steroids. So sure enough I tried just the steroids after the appointment and absolutely fine but then took the progesterone about a hour and half ago and I’m soooo woozy and tired! So deff going to take the progesterone in the evening now !!!!!

@Objectiontime did they tell you why they were suggesting the superovulation?? I know that the trigger shot makes sure that the follicles are fully mature and big enough before ovulating ? Maybe they don’t think the follicles are maturing enough so want to help you with the trigger shot ??? Xxx

Hi and no, they didnt give any reason at all.i am having unassisted conception and according to my temp charts and OPKs I ovulate every month. Just a case if waiting until I actually conceive. It just seems a bit odd because my issue is with maintaining pregnancy not actually achieving pregnancy. I think I am going to have to have a chat with doc about it. I cant see much point in having drugs I dont need, if I do conceive and then miscarry on the pred alone they may want to add something to the mix (no idea what but I'm hoping there will be something).

Hi @Jecca88 oh no you’re kidding I’m so sorry retained products are just the biggest bloody pain. At 1st my retained products were 1.8cm after I had my period they went down to 1mm. I’m now on progesterone for 3 weeks to try and give me a heavy bleed to try and flush that last bit out. But I’ve been bleeding the last week through the progesterone so no idea what that means. t the level of retained products I/we/you have they said they used to go in and remove them but now they have decided that does more damage. Not sure if that’s true or it’s just cheaper that way. I’ve had the cold from hell for the last week the last thing I can be bothered with. Only 10 days till my appt at create woohoo I can’t wait to find out our next plan. Maybe tmi but when I had my period I could tell which were the bits of retained product I was so sure it was all out but nope that bloody 1mm stayed in there ffs 1mm 🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️. You’re right about the break though I’ve pretty much forgotten about ttc it’s been actually rather nice, doesn’t help reach my end goal and with my time limits but we’ve built a walk in wardrobe which has really cheered me up it’s not like we need the rooms atm 🤦‍♀️🤦‍♀️🤦‍♀️. Mich love to all xxx

Hi @Gizmo1983 have you only had one period since the retained products were found? What did they do when you had sepsis? did they give you antibiotics? I just honestly don't want to have another procedure but also just want my cycles to return, they said they would do a hysteroscopy for this one - i think if no sign of period in a couple of weeks - i will just book the hyseroscopy. Did they offer that at all for you? Oh no - what can i expect? i know TMI - but i have read it kinda looks greyish or very dark? I feel so sad reading that about not needing your rooms in your house :( but also amazing you have a walk in wardrobe - i would love that. We have 4 bedrooms and 3 empty (well full of stuff tbf) and were hoping two of them would be filled by now. My Farther in law said to us the other day why don't you downsize - i don't think he realised how incredibly hurtful that was :( he also said why don't we just go travelling for a year - its so easy for people to think that a year out of ttc is nothing to us, and i just think people do not realise how all consuming this is. This is all from people who would have never had fertility issues.

@Meg310532 glad the scan went well. did you have your intralipids too? how funny - are you taking progesterone pessaries? I always did mine in the night so didn't notice a difference, hope the fatigue is better now.

@Objectiontime CRP always say come back after three cycles if the drugs aren't working to try something else. Maybe give it another couple of months?

@Gizmo1983 hope you get that decent bleed as soon as possible, crazy that 1mm can have such an impact.

@Jecca88 so sorry about your FIL twatish comments. People just don’t think. As if going travelling is a magic wand.

Period due today - no sign and BFN. Have stopped the drugs as per plan from consultant. Didn’t exactly have the most active fertile week for a variety of reasons. Anyone on Intralipids - when do you have them in your cycle? My consultant wasn’t very clear, I’ve got to have another appointment just to get the prescription - it’s all so time consuming and tedious here.

Hey @v60 ugh bfn and no
period I always wanted my period to just start if it was a bfn so at least I knew for definite it’s just a pain isn’t it.
hey @Jecca88 im so sorry for what your FiL said as u say it probably was t meant to hurt but bet it cut like a knife. My 1st retained products there was white/grey pieces the size of golf balls and my ensuite was about 1cm of blood, I had a whole kitchen role in my knickers to get me to hospital I was put straight in resus as the blood was just running out of me and my organs had started to be affected it had actually managed to get all the retained products out so I didn’t need more surgery to remove anything I was admitted for a couple of days on intravenous antibiotics. This was the time I was going to the drs repeatedly and they told me nothing was wrong.
this one the tiny bits of tissue were like bits of skin you know when u pull a bit off the side of your finger nail. I had a hysterectomy 6 weeks after my retained tissue was found they didn’t remove it even though they said they would they just took a biopsy after the biopsy came back this was when they gave me the provera, my 2nd period was due just as I started it and I’ve just finished it so 2nd period has just started, I’ve lost a huge piece of tissue over an inch squared it like a thin film it was clear and had clots attached but way bigger than 1mm so no idea what that has been. I have a scan on 25th with my ivf clinic as nhs wouldn’t give me an appt to see if the 1mm has gone which I strongly argued but got no where, I’ve had to fight for all my scans its crazy and so unfair xxx

@v60 I’m pretty sure here you have your intralipids before ovulation but I may be wrong. I’ll be honest as I only had them before ivf. I’m not a huge believer in intralipids the 2 ivf clinics I went to would do all the other treatments but wouldn’t do the intralipids xxx

Hey @Jecca88 how are you hun?? So sorry to hear that to you still have retained products it must feel like the longest hardest process. You want to be able to try and draw a line but you’re still so stuck in the process :( I really feel for you ! Dr Silva mentioned the harmony test, not sure if I should do it or not. I take utrogestan the tablet form of progesterone I didn’t get any side effects with the pessaries when I was with my previous clinic.

@v60 pre ovulation you have a infusion then from positive test then every four weeks

@Gizmo1983 how are you doing ?? Hope you are okay ❤️❤️

@v60 I know how is going travelling a magic wand :( i wish it was.

@Gizmo1983 this all just sounds so traumatic - i am so sorry you went through that - all from trying to have a baby :( Hoping it has come out now.

@Meg310532 i know the waiting for it to come out and then also will it still come out anyway, will i just end up needing the surgery anyway.
I opted out for the Harmony test as it was over £400 and they do the test with the Nuchal scan anyway two weeks later. Since all my miscarriages had no abnormalities i thought no point.

However - I got a call from the hospital yesterday and my results are back from the genetic testing on this one - I can't believe it - but they found an abnormality and it was Trisomy 21. My little boy had Downs Syndrome :(
I was shaking as she told me, in some ways i am relieved knowing a concrete reason why this miscarriage happened. My husband and i have been asked to go to the hospital this morning to get blood tests to see if we have chromosome rebalancing. It may just be a random thing that happened and maybe all the immune stuff was working. Also got my appointment with the GP today to discuss IVF. its all going on. Still haven't seen any of my friends and keeping myself in my bubble with my husband and dog.

@Meg310532 i don't know if i got the harmony test results two weeks before finding out about the miscarriage i would feel any different. But it is totally up to you.

@Jecca88 oh my goodness !! I can’t believe it hun, honestly. Yes I completely get that it’s always worse not understanding the reasons for the cruel things that are happening, I’m so glad that you have got some answers as to why this happened. If they come back and say that yoy don’t have any issues with chromosomes imbalance will you still go ahead with IVF or try again naturally ??
I think I’m going to go ahead with the harmony test. I just think this whole pregnancy has had so much anxiety and uncertainty around it I feel like this will help ease a bit of the worry maybe. Xxxx

@Meg310532 I know i am in shock. In such a strange way - i feel like it takes the blame away from me as there is nothing i could have done :(. It does make it seem so much more real and feel so sad that he didn't have a chance.
Just had the blood tests - but it can take 8 weeks and it will only tests for trisomy 21. I have a feeling we won't have a disposition for it and this was random bad luck. So could try naturally again on the same protocol - see what the CRP suggest. But thinking about it more - i should have gone for harmony test and i defo would next time round, so sounds like a good idea. Will put your mind at rest. Also i might have had some prior warning - instead going into that scan room and having that trauma all over again.

I haven't mentioned but the 12 week scan was supposed to be a doppler check ahead of intralipids and was supposed to be free as was only supposed to be 5-10 mins. We had paid ahead for the nuchal scan which was supposed to be the week later. After the trauma and finding out the baby had died - my husband and i were left in the room to grieve and then they had a conversation with us about next steps - i think we were in the room for about 20 mins. I wasn't in my right mind and my husband couldn't even speak. However two weeks after the receptionist called said they weren't to refund my money for the nuchal scan we had booked in and never went to - but instead was going to use that money for the 'consultation' we had on the day of that doppler check where we found out the baby had died. It leaves such a bad taste in my mouth. Like we didn't consent to that and just becuase our baby died we have to pay. I don't really know what to do - the receptionist said she felt bad and didn't agree to it, but someone must have at the CRP. So i have lost a bit of love for the CRP. In the Grand scheme of things - it was £290 - but still.

@Jecca88 it definitely does take the blame
off yourself for sure hun as there was absolutely nothing anyone in the world could have done to save your poor boy! Just such a sad cruel situation isn’t it ! Does it take you long to fall
normally ? If your test results come
back normal then IVF seems
a bit of an expensive option? But then again I suppose they can PGTA test cant they? But what would the chances be it happening again if your results come back negative ?! God its such a hard decision but I guess you can listen to what CRP have to say!
WHAT !!!!! Are you serious ?! They charged you to listen to you grieve ????? That’s awful!
so have they still not refunded the amount ? Yeh the amount of money they make off us all surely things like that should not be even a second thought !!!!! X

@Jecca88 I’m so sorry about your news, but that sounds like such a clear reason for your loss. I hope that gives you a bit of peace. Is the chromosomal rebalancing karyotyping? And you’ve got to be kidding me about that £290. That’s a kick in the teeth. Surely that’s just basic care after bad news?! What would they have done if you hadn’t prepaid, asked you for it?! And a “consultation” at that moment in time?!! Seems unethical. Where’s the compassion?!

My period arrived this morning. I had a weird bit of grey tissue which has got me a bit worried. My app is telling me that my fertile window might be this weekend - I’ve no idea when I should have my Intralipids and my consultant only has the recurrent loss clinic on a Monday so I can’t clarify what I should do. Feeling rather frustrated.

Hi @Jecca88 omg you’ve had a lot to deal with, dr silva told me you are always better getting a reason for losses as then at least you know, at the same time it’s still like a kick in the stomach isn’t and just brings everything right back. I think getting my results floored me as much as when I found out we had lost the heartbeat it really really knocked me. Sounds very likely you’re bloods will be fine and that one was just bad luck ❤️.
omg I can not believe they bloody charged you for that and I thought what he did to us was bad I know it’s a business but bloody hell they’ve had enough money off you already I’m so so sorry I feel sick and it’s not even me it’s happened to I’m so sorry.
hey @Meg310532 i always did the harmony test I did it with our 15 week loss it was at that they found out cystic hygroma but the test itself was fine I also had the nhs version, I was also going to have it for this one but we didn’t make it 🤦‍♀️🤦‍♀️🤦‍♀️. It was just to give me peace of mind you can also find out the sex if you want to x

@Meg310532 I do think/hope that we don't have a pre-deposition for Trisomy 21. If it does come back clear - i think i will try again naturally and push for the same protocol as don't want to add too many other drugs. It usually takes me 2-3 months for fall pregnant. I have asked for NHS referral for IVF which they said they will fight my case for funding, but i would pay extra for the PGTA testing. This is of course if the next pregnancy doesn't work too. I have come off all the drugs and on a diet now, i think the steroids really made me put on weight, plus it really has spiked my cholesterol, so just want to be in good health. I have just booked a holiday to spain in April and really need it. So think once i am back - can then look at speaking with CRP again and hope retained products will have gone.

Yes @v60 i think it it karotyping - but it will only look at one chromosome abnormality in relation to my and my husbands blood and they are focusing on trisomy 21. Have you ever had any parental karotyping?

@Gizmo1983 yes it does feel better to have a reason, i do still wonder if the crp are going to see if i need a protocol/drug change. Ahh yeh i have cried a lot in the past few days and feel like i am grieving the baby all over again, esp now i can imagine it was a boy and he would have the down syndrome features :( I keep watching the video of them wiggling about and shaking his bum :(

Thanks Ladies - yes so they took the money and won't refund me. Not sure if i should write a complaint, i did ask the receptionist what was the reason and she said because of the timings. Can you imagine if they told us once the baby had died and then said ok you need to leave the room or we will have to charge you £290, instead they don't let you consent to it and charge you anyway. I don't want to fall out with them as obviously having treatment with them but yeh you would think that after spending nearly £15K with them and losing now 3 pregnancies, they would have let me off that 'consultation' fee as a gesture of goodwill.

@Jecca88 Glad you got your results back, really hard to know there was an issue but also a hope that it may be a one off situation.
Like others, I am shocked by the payment situation. That is pretty dreadful! I know private clinics have to make a profit but that is bordering inhumane in my view.
I'm not with CRP and I am sure they do some fantastic stuff and havexsone huge successes but they do seem to be very heavy on charges generally.