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 thanks so much hun. It still doesn't really feel real. Still definitely protecting myself. Hopefully from Monday i can relax a bit more and start to enjoy things.
Ahh okay thats good then that you can get everything else through them. yeh i dont know if the intrapalids make too much of a diff. If you wanted to do them still is there a private place close by that would do them maybe! xxx

@Meg310532 i think after Monday you can definitely relax more and start to have those lovely little thoughts about the future.
@Jecca88 how are you doing sweet?
not much to report here, got a positive on a ovulation test was thinking maybe shouldn’t try with going to Florida but haven’t fallen naturally pregnant in almost 2 years so don’t think I need to worry too much lol.
am still feeling resentful towards mummy pig 😂😂😂.
lots of love to you all ❤️

Hey @Gizmo1983 i honestly can't understand why they took a biopsy rather than removing it in your hysteroscopy. My 'period' was literally so light and just brown blood tbh. I called the hospital yesterday and they are bringing me in tomorrow for another scan and then we will decide the next steps. Yesterday was a bad day and just felt so annoyed at everything and why me! just one of those days. Feeling bit better today and have a social event tonight where i have been invited to try this fancy sushi meal - so feeling excited about eating raw fish lols. I totally understand your reluctance to try naturally again just with all the issues post miscarriage. I saw on the TWGGE facebook group last night - a few people like me who have had 6 miscarriages and then one of them was with CRP and had two miscarriages out of the 6 with CRP but then tried the GCSF injections and had her child. i think this is the thing Shahata mentioned to you with close monitoring. Honestly i just goggled pepper pig scan and even i am annoyed lols, it is ridiculous, but i totally get it.

@Meg310532 thats amazing about the harmony test results, can't believe you have your 12 week scan next week - i feel like that has gone quickly, however i know when you're in it feels like it drags. Also you can wean off the pred soon :)
did you find out the gender?

xx

Hey @Jecca88 and @Meg310532 , @Jecca88 I am exactly the same with good days/bad days I find I’m going through a more bad than good at the minute I’m hardly sleeping which is new for me.
it’s really good they are giving you a scan so soon they seem to do everything to not scan me lol I must have had my quota lol.
i suspect and I may be wrong that the camera wasn’t working well enough in my hysteroscopy she was reluctant to do it and kept complaining the camera wasnt working property I was so pissed off as I would have been ready and back on stuff early January and I am just able to ttc start ivf and I have to wait for another period which will co inside with my hols so I won’t be able to start till mid/April May which is rubbish. I used to take so many supplements but I literally just take the basics now I can’t get them down it’s like I now have an aversion to them. I make sure I take the basics though. I’ve got everything crossed you get some answers/ and more importantly a plan to get you back on track, it’s mentally been so hard for me harder than the actual MC.
oooh enjoy you’re sushi night I revel in the stuff I couldn’t do I’m going to get Botox on Monday sod it why not. My diet is terrible so I need to clean it up really before I start ivf but I have to be totally honest I’m just so tired and broken from all this I really struggle as I was taking every supplement and eating so healthy for so long and it got me no where I just can’t do it anymore I’m cross with myself but I just can’t.
yea I believe gcsf was the one mentioned, I’m a 6 hour journey from Epsom have to have my appt then 6 hours back, after what you’ve said I’ve decided I will have a consult from shehata and go from there. I imagine even a donor egg will be affected in the same way with killer cells. My instinct is to go donor and go the same protocol as before maybe plus or minus the hydroxy but if I loose it we won’t know if it would have made it and I guess that Is where the problem lies, is it the treatment or is it just luck or a bit of both and what drug worked the magic or was it all of them or none. I did defo feel much better in myself pregnant with the protocol xxx

@Gizmo1983 please don't be hard on yourself, you have been through an awful lot and you just need to give your body what it wants and if that is crap food - so be it. I have been dieting - but mainly because my cholesterol was so high post- pregnancy. they did say it can be spiked due to steroids, stress and pregnancy, so hoping its that - just trying to get back on track. I find it so hard to exercise - also just knowing that my cycle is not gonna return as normal - just feel off kilter.
I go to Kings hospital in London and the EPU is soo good there, they really have taken care of me, its sad as all the nurses and doctors know me now, consider its such a busy hospital supporting a lot of south london. I am sorry you had such rubbish care - it really makes me mad for you.
6 hours is just so much :( i couldn't do that. Yes i always thought if i went with IVF - i would need the immune protocol alongisde it.

Another sad thing today/this week - peoples posts of their kids on social media of world book day. Just another reminder :(

@Jecca88 thank you so much I think I really needed someone to say that to me a few more biscuits really isn’t going to do that much more harm. Thank you ☺️.
it’s so nice you’ve had good care there’s a smaller hospital closer to me with a lovely dr and we are considering moving there if we are lucky enough to have a next time.
totally feel you on the world book day, I have a little chihuahua and I’ve just carried him around today and I do that when I’m struggling we sat in the sun for a bit. I bet mummy pig had an amazing world book day 😂😂😂.
i wish you every look for tomorrow/today got everything crossed ❤️

ahhh totally @Gizmo1983 - your body is recovering and needs that fuel and that fuel is sugar :)
Yeh tbh - the nurses and doctors are all great tbh and its amazing i don't have to pay for it lols. I love that idea so much of you and your dog, whats his name? I have a Blue Staffy, called Archie, can't quite carry him around, but he doesn't leave my side and absolutely loves sunbathing. Ahh lets see what they say today! Feeling quite hungover after a few margaritas at sushi night and not sure how ready i am to be poked and prodded.

Happy Sunny Friday :)

Hey @Jecca88 how did you get on sweet x

Hey my love @Gizmo1983 thanks for checking in, so the products are still there and they weren’t even sure if it was a period I just had, they can see fluid build up in my uterus and there was such a clear line in the ultrasound - they said it could always be scarring forming so want to take a look. They have booked me in for a hysteroscopy on Wednesday and will see if they can remove it then. Feeling quite frustrated as Ashermans was mentioned today and just put another fear in me. How are you today? X

@Jecca88 hey sweet don’t even let ashermans enter your mind, chances are it isn’t. I had very similar symptoms and my period after was just gushes and gushes of red blood with no tissue at all no way was my period normal. It’s so good you’ve only got until Wednesday to get the hysterscopy done hopefully they can just get it out and you’re good to go. I think at this point we will both be happy to just be back at ground zero. Xxx

Hi all, me again, I was looking back a bit on this thread (I dont read as avidly as I should!). I noticed a point in Feb when people were talking about their results.
Mine are below, just wondering if anyone has similar or any thoughts generally on these. I have probably mentioned before that I cant have intralipids because of allergies so my protocol is pred from ovulation, low dose aspirin and cyclogest from a positive test...
Total NK cell number 251 (think they like it under 200?).
Activation number 1.01 (I think that is quite low but not sure what it actually is to be honest)
Cytotoxicity 21% (Think this is the bit that needs to be below 20?)
Best treatment for me appeared to be IVIG but there us no way I could afford it. Doc said pred and intralipids would work very nearly as well but obviously i cant have the intralipids. The pred alone should reduce to 11% so i am praying that will work.

thanks @Gizmo1983 its quite scary reading the risks of Ashmermans on google. its like up to 39% chance of it after D&C and i have had 4 of them :( i think if the scar tissue is forming - it would be from the most recent D&C as this last pregnancy implanted and the result of the loss was nothing to do with scarring. Fingers crossed for wednesday - glad i can have my husband in the room. @Gizmo1983 did you just have local anaesthetic? How was it? i am supposed to be in the office on thursday - do you think this is doable?

Hey @Objectiontime my total count is lower at 205.6 and my cytotoxicity is 22%. Anything about 1 is high for the Activation and then above 1.8 is very high.

My reduction with Cytotoxicity is reduced more with Pred than Intralipids. I only added Pred into my protocol for my third pregnancy with CRP and that was the one that they think the immune stuff worked for and the loss was confirmed to be related to genetic issue. how long have you been on the protocol and TTC?

@Meg310532 let us know how today goes, keeping you in my thoughts.xxx

Hey 😌 sorry to hijack the thread.

@Jecca88 @Objectiontime are your results from blood or from the uterine testing? My total at 389 seems so high comparatively 😩

I've just had another negative cycle and just feel so fed up of it all now. Equally, I want to be pregnant sooo much but I’m also SO terrified of the anxiety when I do fall again. It’s such a weird headspace to be in.

i think my husband and I have agreed to do one more natural cycle and then start IVF w PGT-A testing. We’re giving it one more cycle to see if we could bring home a baby in 2025 then I think going ahead with assisted conception as we’ve not conceived since august 2024 now.

So sorry we’re all here, I don’t know why it has to be so hard :(

Hey @Hopeandfaith1990 my results were from blood. 389 does seem high. My results says Totaly NK Cell Absolute Count (106/L) Remind me did you have this done with CRP or are you with NHS? What protocol are you on? that is frustrating - since Augs 2024. Have the doctors suggested anything else to add? How long does it usually take for you to fall pregnant?

Hey, thanks for the reply 💖

all my stuff so far has been with the NHS at St Helier. These were my results:

My protocol is

25mg Pred from ovulation
75mg aspirin every day
400mg cyclogest from ovulation (although I upped it myself to 3 pessaries a day this cycle and it did stop my brown bleeding/cm so I suspect my 2 pessaries wasn’t enough)
400mg hydroxy everyday

do you take the hydroxy every day, or from ovulation? It makes me feel so awful and my sleep has been terrible with the hydroxy every day and the Pred. Gah.

it usually takes between 3-6 cycles to fall again I guess? I think the cumulative effect of it being 2.5 years since we started trying and no success and 5 losses is just feeling like a lot atm. Xx

thanks @Hopeandfaith1990 yes mine look the same in terms of layout so maybe yours was blood, could you try and call the dcotor to see what this means?

my Protocol is the same as yours, but just less pred and the intralipids.

20mg Pred from ovulation
75mg aspirin every day
400mg cyclogest from ovulation
400mg hydroxy everyday ( i have stopped taking it post recent miscarriage at the end of Jan and will resume once retained products have gone) I actually never noticed a different on the hydroxy - since stopping it i have actually been more ill than i have on the nearly 2 years i have been on it. Are you taking the Pred in the morning? so it has been over 6 cycles?
Since you have been on the protocol - how many miscarriages have you had and have they given you any reasons other that immunes for your losses?

its such a horrible place to be in - so totally get how you want to make another plan if the current one isn't working.

Mine was blood - but I just know that you can also test the NK cells in your uterine lining which can sometimes reveal higher amounts than in blood. Did tons of research on this when first diagnosed last year as it seemed such a strange phenomenon.

ive had one MMC on the protocol at 9 weeks. It was the very first cycle of the protocol so recurrent MC line of argument was that we needed to give it another ‘proper’ go, which is where we’re at now (6 months post most recent MVA).

yes, taking the Pred and hydroxy at 6.30/7am. I’m a teacher so always up early 🥲

re other reasons for losses - bad luck seems to be the most common line!

Popping back in again and trying to catch up.

@Jecca88 sorry to hear Asherman’s was mentioned. It was also brought up with me after a HSG. The words web of adhesions stick in my mind. The doctor was so convinced that we nearly just booked the hysteroscopy under sedation. So obviously did the same as you and googled and worried myself silly. Turned out that there’s one adhesion close to my cervix so it wouldn’t make a difference. Fingers crossed for you that they don’t see what they think they saw. And if not, we’re here for you. The hysteroscopy wasn’t pleasant but equally wasn’t as bad as I thought. My doctor gave me an ibuprofen pessary to use rectally beforehand. And it was over reasonably quickly.

@Gizmo1983 how you holding up?

@Objectiontime I don’t even remember what my results were, it feels like so long ago, you’ve encouraged me to go back and have another look. I don’t even think I go info about which treatment is better over another, it’s all just a kitchen sink approach where I am.

Hopeandfaith1990 totally empathise with that headspace. I’m nearing the end of a TWW. There’s just so much waiting.

@v60 Yes, the waiting is the worst! I'm still so naively hopeful every cycle and then I get so angry with myself for getting my hopes up haha.

How long have you been on this journey? Are you TTC your first?

I'm constantly torn between feeling like I'm not doing enough to support TTC and feeling so frustrated that the majority of people do nowhere near the amount of stuff we do (like protocol etc) and it all works out well for them, so feeling like I just want to throw in the towel ha.

Does anyone go to acupuncture? I've been going weekly for a while and its so expensive. But my anxious brain tells me if I stop I'll never conceive lol.

@Hopeandfaith1990 you could speak to them about the super ovulation - not sure if NHS cover it or just CRP - but that might be best before considering IVF - think there is some info on their website about it and @Meg310532 just went through it. Did they test your 9 week miscarriage for genetic abnormalities?

hey @v60 how are you doing? thank you for the reassurance around ashermans and the hysteroscopy. good luck for your TWW. The waiting, speculation and hope is just the worst in this 'journey'.

I had accupunture for about a year, probably my 2nd year in TTC - it helped relieve tension and stress, but ultimately has not worked with a positive pregnancy and its so expensive on top of everything else.

Hi babe @Jecca88 how are you? Just been reading through all the posts, I hope Wednesday goes okay for you, is this the first hysteroscopy you have had ?? If they see scaring would they remove the scaring whilst you are in the chair ?? I read that ashermans scaring can be removed whilst having the hysteroscopy is that right?
Thank you for always thinking about me even through your hard times recently, your support and kindness has always been so appreciated, the 12 week scan went really well thanks hun! 12 weeks 1 day, so I don’t need to go back now till I’m 16 weeks and can start weaning off the steriods now!
yes I had the harmony scan which tests the chromosome of the baby at 10 weeks and then I had a nuchal scan today which was about 30 mins which just checks the anatomy of the baby. We found out we are having a little girl, I was SHOCKED I was convinced I was having a boy ! Xxxxx

Congrats @Meg310532 that is so wonderful - so nice to wean off the steroids too!! xxx

Hi Jecca88, thank you for sharing. I have only been on this protocol for two cycles, this will be my third so pretty early days I guess. Had an MMC in Autumn of 2023 and then two Chemicals about five months apart last year.

Hello there, my NKC result was from blood tests. I have just started a new cycle and I feel exactly the same. Fed up with waiting and terrified in case my protocol doesnt work so I hugely sympathise on that x

@Hopeandfaith1990 thanks so much hun! Where abouts are you in the process now ?? …xxx