Immune/NK cells pred thread #31

@VenusStarr I'm thinking I am going to do the same as you. Are you not going to try intralipids at all and if you do get a positive (hopefully you will) will you go on to have your 4 weekly intralipids?

The reason I am so confused and down these past few days is because when I did my 11dpo test last week it was negative so I gave it a few days before I stopped my medication. I hadn't started my period yet but I thought it was because of the progesterone.

I called my early pregnancy unit and when I got there they decided to do a urine and HCG test. My urine showed a slight positive and my HCG showed up at 25 which meant positive for pregnancy. I did my second GCSF injection that same day and it was exactly 3 days after my 11dpo test. I was shocked but didn't call CRP because I knew it was going to be short lived. I didn't book my 4 week intralipids either because I wasn't prepared to waste the money because 25 was kind of low for being the DPO that I was.

At this point medication was stopped but I still hadn't started to bleed. They did repeat bloods on me yesterday evening to see if it had increased and they called me this morning and said it had dropped to 21 which means it's not a viable 'pregnancy'.

They asked me all the generic questions about shoulder pain in case it was an ectopic etc... and I don't have any cramping or bleeding or pain anywhere apart from bone pain from the injections. I don't know what to do now.

I have emailed the clinic but obviously as it's a long weekend I won't be hearing back from them any time soon.

Early pregnancy unit has asked me to another pregnancy test again on 2nd May to see if my test is still positive then contact them. They said they won't be doing another blood test as if it was a viable pregnancy my levels would have double within the 48 hours and mine obviously haven't.

So to sum up. Apparently I was pregnant this month but will have another miscarriage. 6th overall, 2nd with CRP. This one is with intralipids, HCQ, omeprazole, Pred, aspirin, GCSF. The one in January also with Dr S was the same meds but without GCSF. Don't know what to do and what's next for me.

Have never been this confused in my life. Oh and on top I got in contact with RMC for my heparin injections as well (even though I wasn't going to take them) to let them know I needed my prescription and they still haven't gotten back to me!

This sums everything up. Shit situation. Don't know what to do next. My last 2 miscarriages I started my miscarriage bleed even though I was on progesterone so don't know why it won't start now. According to my period I am 4+5 today.

I feel like I can't take anymore medication and I simply don't know what Dr S can offer me now. I was so hopeful he would have been able to help me but clearly not. I'm really pissed off and I don't know why this keeps happening. I just can't seem to get passed a certain point. I know the medication is working because this is the 3rd time I have been since since being on it since last November one of those times being Covid.

This is why I'm thinking to try an unmedicated cycle with maybe just HCQ.

Any advice would be highly appreciated and please don't be shy to give me your opinion and feedback 💜🧡. I really need it at this point. I have broken down too many times now and it's made me so numb where even this heart shattering news doesn't even allow me to shed a tear.

@comingsoon786110 sorry to hear you have had such a bad experience with your RMC. I haven't had a great experience at mine either all in all. Can't say they have helped me in anyway besides getting free cyclogest!

I haven't quite got time to respond and catch up with all the posts from everyone but I just saw your post come in and I think some of the things I've been looking at recently might be helpful/relevant - so thought I'd mention.

So I've been following the fertilitydetective on Instagram and she is about to start a MSOM course in May which might be something you might want to look into. Looks like she might be able to help you consider and think of other potential reasons and ways to help.

And then alternatively, I've also been following a lady who is a conception doula - Helendavenportpeace. Quite alternative and I think the service is very much a support service whilst you are going through this really shitty ttc journey. Someone else to turn to. She also does yoga and I think a lot of it is focused on healing the nervous system too, which makes sense to me - as I know mine is well and truly messed up now by all the trauma etc.

Both of these may not be what you were thinking at all and they are very different from each other. The fertility detective is very much about trying to find real answers and leaving no stone unturned and she seems to have a wealth of knowledge. The other lady I think is more about trying to let go a little and tackle things from a different angle.

I've been pondering about the latter one because at this point I feel so exhausted carrying the weight of ttc and losses and it might actually really help to have someone in your corner spurring you on somewhat.

Finally - I'm thinking more and more that I need to have a laparoscopy for endo with a specialist... I just feel in my bones that there is a reason why my body has gone haywire immunes wise - and whilst Dr Shehata has assured me that endo would not cause recurrent losses I've read so much information on the subject now and it seems it is a hidden cause for so many ladies fertility problems, for lots of reasons, in different ways and to varying levels.

I'm not sure I'd feel safe coming off the hydroxy completely but I'm tempted to give all the other meds a rest for a couple of months this summer.

It would be interesting to hear if any ladies have found success off the meds after everything...

Morning all,

Hope everyone is good and sorry to keep turning to you all over and over again but no one knows of my struggles apart from my husband obviously and my parents.

Has anyone ever gotten to a point where they have stopped trying with all the medication and just tried naturally and had success? I feel like I'm at this point and all this medication is having the opposite effect on me. I'm thinking to try my next cycle completely unmediated, not even HCQ and see how that works out.

The reason I say this is that how many more medications can I add until I see success or at what point is it the limit?

I am also going to be asking my GP for a referral to a different RMC, anyone have any in mind better than St Mary's? I did think this was one of the best but clearly not- I've had such an awful experience with them.

I'm just looking for a solution really.

Thanks for the welcome.
@VenusStarr i am doing a medicated frozen transfer yes, likely in June.
@Danni8 thanks, I’m so sorry to hear of your recent loss and also of the journey so far. I am currently under an ivf clinic in Brighton which do not particularly believe in immune issues but have been willing to consider them for my final transfer there. I seeked a second opinion from the Lister in London, Dr Thum who was very knowledgable. It appears that cytokines and natural killer cells are both issues for me on top of the low ovarian reserve.
I ended up down on a Google rabbit hole last night to find out what causes these immune issues. Some people (doctors, accupuncturist) have told me stress and lifestyle but I am very healthy and yes have been stressed with a number of things but I just don’t buy it! I also found some papers about how these immune issues can be genetically passed on and also how low progesterone can cause immune inflammation. Not sure if anyone else’s doctors have ever given them some sound reasoning behind it.

Aah I knew I missed some
@Ems123456789 I'm sorry you find yourself here too. Are you under a reproductive immunologist or is your ivf clinic doing everything.

@VenusStarr I often wonder what those dreams mean. If anything. Some of them are so nice I don't want to wake up from them! Always hoping it's a good sign though.
Also I totally get you with adoption. I used to think if I had to, I would. But like you said it's a complex system but also the children going into care these days are not like a teenage pregnancy or something. These children are often from abusive/neglected homes. If they're babies, they're often taken at birth because of parents history with their sibling and are often born addicted to drugs. Very sad. So for the people thay adopt, I think its better if they have a passion for that and it isn't because its their only option. Because these children are traumatised and will likely have emotional needs and possibly other needs as a result. Which, if someone goes into it, not being ready to support thay child with their trauma especially if they're traumatised from ttc ...then 🤯.
Would you ever consider surrogacy instead if you had to look at other options (hopefully you wont)? Not an easy route either but obviously different to adoption. Xx

@VenusStarr @Lily1990 @SReyn @star2022 thank you lovelies 💗. My hubby and I went to see Kevin Hart at the o2 yday and so we at least had a few hours of laughter.
@comingsoon786110 yes bone pain is a side effect. I think it works by stimulating the bone marrow to produce more white blood cells.

@Lily1990 that doctor sounds horrible. What a cow. I find nhs RMCs so shit. They literally give you some progesterone and aspirin and maybe clexane and tell you to be on your merry way. Have they prescribed you anything? If they have, use them for the meds and ignore anything else they say as you're under Shehata. If they haven't and you feel strong enough, i would complain and/or ask to be referred to a different rmc or different doctor for a 2nd opinion. Xx

@SReyn glad to hear your success story 💗 and ugh re the timing of those announcements. It feels personal honestly. Not on the sender of the announcement but like the universe is having a laugh 🙃

Question for those of you whose partners have high dna frag..how far along did you get in your pregnancies.? Just asking as the main reason we are doing ivf is to put back pgs tested embryos. But obviously f all has made a difference so far. Which makes me think my immune system has been the cause for each of them.

Also does anyone else on here experience night sweats as a symptom in early pregnancy before it goes wrong? Someone on Facebook said it could be a sign of oestrogen dropping and I know our immune system can attack our hormones... I'm wondering if I need to ask for extra oestrogen next time. I wasn't on any this time as it was a modified natural FET. Xx

Thank you @SReyn for sharing and all the best in your pregnancy 🧡🧡🧡

For those of you who take GCSF injections do you get random bone pain in your arms or legs etc... I will be sitting and something will randomly start and then go away on it's own.

I've also come down with a cold today and dreading to take a test. I work in social care so wouldn't be surprised if it was covid. All the meds I'm on are really making me weak, I keep getting a cold almost every month.

How is everyone doing 🙂🙂🙂

Hi all sorry to hear everyones having a rough time lately @Danni8 @Lily1990 @comingsoon786110 sending you all love, lets hope brighter days are coming xx

I also picked a massive fight with dh last night and was bawling my eyes out. Not sure if it was the letrozole making me feeling super low and ratty, and maybe a combination of starting a new cycle again, trying to stay hopeful but then feeling so fearful at the same time of it not working and just feeling like shit again riddled with anxiety. I'm also feeling super deflated and not sure how much longer I can go on being on meds and not being able to feel like myself while everyone else around us seems to be getting on with their lives so easily popping kids out. I've also had that insensitivity of an announcement during a chemical. It really is such a cruel and lonely process but i'm so thankful for this group ❤️

Thanks for sharing your success story @SReyn and congrats! Anyone else got any more to share?

@VenusStarr I think you have a good plan in place. I genuinely don't know how people do these cycles back to back and how you did it, part of me thinks doing a cycle on and off would be better for me too because the longer i'm on this process, the more i feel my health and mind deteriorating each day. Dh and I were also discussing the travel to epsom too today and how much it takes it out of us, not to mention the cost racking up too. I hope your period gets better, mine has come back with a vengeance today too, I think I spoke too soon! xx

@Danni8 a friend saying they're pregnant as you're going through a miscarriage is horrible. I've been there - walking out of hospital and getting a scan photo. To be fair the feiend had no idea but I remember feeling like I couldn't breathe.

@comingsoon786110 I didn't want to be insensitive before to everyone going through a tough time but hopefully my story will give everyone some hope.

• Had a son in 2017 with no issues
• Conceived again in Dec 21 but had a miscarriage at around 6 weeks
• Conceived again in March 22 - saw a heatbeat at 7+3 days and had a miscarriage a few days later
• Was referred to Dr Shehata via my GP and had an appointment in Oct 22. Confirmed I had v high NK cells and put on Hydroxy, Progesterone and the other standard vitamins Dr S recommended
• Conceived again in Dec 22 which turned into a chemical pregnant

It's not been so completely straightforward as I've had bleeding throughout but by some miracle the baby was fine. The only thing I did differently was that I started accupuncture. Injust felt mentally I needed something more holistic.

I hope this gives others hope xx

hi all,
reading your thread and so sorry to read of some of the stories here and hoping everyone gets the outcome they are dreaming of.
I have joined as just looking to find out more about people’s stories with immune issues.
My story:
TTC for 3 years
diagnosed with low ovarian reserve AMH 1.5 at age 33.
first ivf abandoned due to poor response
second ivf one embryo, ectopic pregnancy
found to have positive antibodies for immune issue and given steroids
third ivf, two embryos, one resulted in miscarriage at 7 weeks
now found to have high cytokines and Nk cells
got one frozen embryo
going to do steroids and intralipids in June hopefully.

it’s a journey!!

@VenusStarr what is Tacrolimus and what is it used for? apologies if its been mentioned before.

I received my letter from St Mary's RMC letting my GP know that they have discharged me because I refused the hysteroscopy. Does anyone know on what grounds NHS offer IVF and if it will work if I have high NK cells. Don't think it will really as my immune system would also attack that embryo.

I've had a rough few days. Literally balling my eyes out to the point they are sore. I feel heartbroken and devastated. I picked a massive fight with my husband yesterday and ended up blocking him on whatsapp which I have never done since I've known him. Hubby and I have discussed adoption as well as I feel as though I'm done trying. I say that now but during my next fertility week I will be tracking like crazy again. I just don't think I can even get to that scan point to see a flickering heart beat let alone have a baby in my arms. I honestly don't know how you all do this and I admire you. I feel like my time at CRP has come to an end as I honestly cannot afford it anymore and even if I did continue with them, there is no guarantee any sort of treatment would work for me.

Okay rant over, back to work.

How is everyone else doing. It would be good for a few people to post some of their success stories on here. I feel like we could all use some positivity this Friday afternoon.

Sorry to all of you who are going through tough times right now and I pray we all see light at the end of the tunnel😙

Hi all, hope you're all doing well!

@VenusStarr I'm so sorry your period came :( I have done 3 letrozole cycles before (2 with trigger) and didn't conceive on any of them, despite scans showing everything was looking great. It is so disappointing because you have your hopes up, and have spent loads of money too. I think it's a great idea to have a cycle off the SO programme so there's less pressure and you can feel better mentally.

@Danni8 I'm so sorry about all of your losses, can't imagine how you are feeling. Hope you are holding up as ok as possible. Also can't believe how insensitive your friend was, that is absolutely awful. What a dick.

I had a horrible appointment with a doctor yesterday in a follow-up after my NHS RM appointment. She told me I haven't had recurrent miscarriages, because only one of them was seen on a scan and the other 3 are all chemicals which are very common. I understand the other 3 are classed as chemicals (happening around 5-6 weeks) but other doctors have agreed it's recurrent miscarriage, and I really felt she was undermining my experience.

She also said I have been testing too early and that's why I'm picking up these chemicals, which most people would miss. I told her that my period was 2 weeks late and I think most people would suspect they were pregnant if that happened!

She also said the NHS won't do any more tests on me, but then spent ages saying that NK cell testing is a complete waste of time and money. She said to just keep trying and it will work out at some point. I was crying my eyes out during the appointment due to feeling so invalidated and basically to be told I have to keep going through this experience. I've had so many doctors appointments for fertility/miscarriages and have never cried before but she really got to me. And still feeling angry today :(

Seriously hope Dr Shehata's plan can work for me and I can write to her telling her I did have high NK cells and benefit from his treatment!

@VenusStarr I used to LOVE Zumba! I didn't know they still do it. Felt like it was really popular pre 2014 but died out. Flad it's still going somewhere!

So as if it was possible, my week has gone from bad to laughably worse. I was meant to go out with 2 friends this evening that I met on a friend app back in 2019 when I was trying to pull myself out of miscarriage antisocial life. An hour before the booking friend 1 (who im closest to) cancels and says she has been napping nd struggling to get up. She thought she could cope but can and she's really sorry. So of course I ask in the group and 1-1 if she's okay. Then she says something like "I'll explain next time I see you whats up". Then about 30 mins later, puts in the group "I'm 🤰🏼and exhaustion is kicking my ass so yeah that sums it up" then deletes it from the group and messages me that message directly because (yes, she knows what I've been through). It's ridiculous just how one can be kicked while they're already down. Wtf am I supposed to do with that!? Also she got with her boyfriend a few months ago. So yeah. Extra cherry on top. Any other time I think I could handle it better bit 2 days after a shit scan while I'm waiting to miscarry is horrible timing

Anyway. For all more losses its been expectant management. Never had the meds or the surgery for it. The shit thing is that's its my bday in just over a week and so it would be great if it happens before but something tells me otherwise 😔 xx

@VenusStarr ahh that would have been a great idea as we're cycle buddies! Well if i'm back here again next month, and our cycles line up we can definitely do that <3 how are you feeling today? I love a good zumba although my coordination is terrible!

I'm just in shock at how different my period is this month. I've had hardly any pains and not heavy at all. It used to be so bad before the polyp was removed that I was genuinely worried if I had endo because I used to be bed ridden for the first two days and had so much pain. It makes me wonder whether my uterine environment was just that toxic that embryos weren't implanting so I feel a lot more hopeful that I'm heading in the right direction now after getting the hysteroscopy done so thanks to everyone who advised me to get it done. I've got my scan booked for next week, and start my letrozole tonight 🤞🏼🤞🏼🤞🏼

Thanks @SReyn and @star2022 its such a hard process. I'm starting to feel untreatable which is soul destroying. I'll take some time to process before making any big decisions.
@comingsoon786110 it's so hard when Dr's say different things. Why is Dr Edge against the heparin for you? Can it have the opposite effect if you don't need it?

@VenusStarr Aaah that makes sense so you're doing superovulation now until you can save for more ivf. I didn't know Dr S was offering tacro now! Interesting.
Well done on booking a gym class lovely. That usually makes me feel better too. What class is it? Fertility Consultant made me stop the gym so the past 2 years I've just done classpass when I'm not trying but now I think fck it, I'm going to join a nice gym with a good spa area.
So the appointment with Gorgy was okay. The nice part is, he thinks there are tweaks that can be made. But I feel really discouraged and close to quiting which I've not felt before.
Anyway he said that testing (as my clinic does) for pregnancy 14 days after transfer is too late. It should be 9 days and if the beta is sufficient, then to do ivig then. He said I need a bigger ivig dose (the even more stupidly expensive one) as I'm heavy (thanks to nearly 6 years trying, miscarriages, steroids, hormones and comfort eating). He also told me to retest my LADs to see if i need to do LIT again. He was hesitant to add more immune stuff because he doesn't want to over suppress the uterine lining. He also mentioned PRP (platelet rich plasma) which I'd never heard of. Apparently used for thin lining and to improve lining quality. I never have issues with thin lining so it would be for quality and instead of the neupogen wash. Really unsure of my next move tbh. Maybe I just need time to think.
Xxx

@comingsoon786110 sorry to hear you're in limbo about all this, it's so hard isn't it when different healthcare professionals say different things. I know when I went for my initial consultation with dr s they mentioned about not prescribing heparins and that they're against it as there is no real evidence that it helps. I have looked into it (I have a medical background so this stuff intrigues me lol) and can see so many studies saying there's little to no evidence of the use of anticoagulants and that it can in fact create more of a risk later on. Have you done any research yourself at all? I know when I hear conflicting advice, I have to just do my own research and make my own mind up. I know that CRP do everything backed by research and I do believe they don't just prescribe or do things just for the sake of it, it's always based on your bloods and results. I would maybe just see if you can get some clarity from your other clinic perhaps as to why they think its necessary? Are you also on aspirin as that would be working similarly. I was put on Clexane during ivf, and my consultant just gave it to ''cover all bases'' but I had no real need for it nor did he give me a reason why i needed it.

@VenusStarr ahh you're so good hitting the gym up! Honestly, these small wins are so hard when you're feeling like shit so well done for keeping going 💪 I did about 20 mins on the bike today despite feeling crap too but glad I did it. Also, full flow has arrived thank god!!

@VenusStarr I literally think St Mary's had no other advice to offer me so they said heptagon. I haven't heard anything from them after that, don't even know what's going on there. All pretty shit tbh.

Aww that's good news for you finally! I'm pleased for you 🧡🧡

Does anybody know what Dr S can add if GCSF doesn't work? I'm definitely not going to be trying IVIG ever because that's just disgustingly expensive. I'm thinking of having my embryos tested but I know he doesn't agree with that as he said if you are able to get pregnant there should be any issues. Also when it comes to several repeat miscarriages then it's unlikely an chromosomal issue, more immune.

I feel defeated 😔