Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

Hi ladies

Hope you’re all ok and had a nice weekend so far. I’ve been struggling the last few days, due date is approaching and I seem to have SEVERE pmt this month.

Sorry if this is a silly question but if CRP are missing your ovulation dates with the trigger shot, can you not just have sex all the days leading up to the appt to cover all bases? I’m starting super ov this month and I’m getting worried now whether this is a waste of time. I usually ovulate late (cd 17-21) so I have a horrible feeling when I go for my scan they will tell me I need to pay for another scan in a weeks time or something. The money side is a strain at the moment, I nearly spat my drink out when I saw intralipids are £380 I really wasn’t expecting that xxx

@VenusStarr sounds like you had a lovely day planned. Did you like the car?

No I'm not on hydrox, just intalipids, pred and Cyclogest. I'm tempted to have the total break, but it's the conflict of I know they will say not to try at all if I'm not on intralipids. And if it went wrong and I hadn't....mind funk! It's hard to know what to do, but you're right, he doesn't include it in his nhs clinic.

@Sophi81 yes they told me the same. I was originally down for 6 cycles and they said most success is cycle 4-6. He's allowed me 3 more tries because I only have one tube, and of those 6 cycles, I think 2 of them were follicles on the side of my tube.
I haven't spoken to them as I came on AF over the weekend but I don't think they are trying anything else. He told me at my last consult with him that my next step will be IVF.
After this break cycle, I might finish up super ov and then try naturally for a while (hopefully with his treatment plan) and see if anything happens. Then go IVF route if we can afford to.

I've also been pondering this dna frag test. I still need to listen to the podcast posted earlier about it, but as we aren't falling pregnant, I'm not sure that's the right test. I think that's for the losses but we aren't even getting pregnant. It's just more money!

@Onwardsandupwards1206 so sorry to hear about your loss. I hope you get some answers at your appointment. Please do keep us updated.

@SOD2022 thank you so much for your success story. Congratulations on your baby boy. How many cycles did it take you to fall pregnant, if you don't mind me asking?

@Tgrf55 we have still tried to cover bases with ovulation if I think it's happening sooner. It's just more the frustration of taking the letrozole to get more follicles, and then it's wasted if you ovulate sooner. I don't think they always get it wrong at all, if ever. It's just a worry of mine that sometimes it might be too late.
I really don't want you going into your super ovulation scan worried about all this. I do have confidence in what they are doing, I'm just trying to find reasons why it's not working I think. You might have a totally blissful experience and hopefully get some good news really soon xxx

@myrainbowjourney I’m really trying to keep an open mind and be positive but it’s hard. All I seem to see at the moment is pregnant women. We’ve had 2 pregnancy announcements this weekend from friends…2nd and 3rd babies. I hate that their happiness ruins your entire weekend.

I was reading up a bit more on the plan and I read that the lady he helped who had I think 18 losses (the lady who got him in the public eye I believe) actually became diabetic from the pred and miscarried due to this. She got her happy ending afterwards but even that made me paranoid. I totally get what you’re all saying, could all the drugs etc be slowing this down for you all. It’s a tricky one.

Do you think you’ll take a break from the intralipid? I’m not even sure how they help tbh - but I’ll take their word for it lol xxx

@Onwardsandupwards1206 I am so very sorry for your loss… 😔

@Tgrf55 no I don't think I will. I think I'll have them if I'm honest, just because I'd forever think what if I had had them. And I can't see that they delay anything as they aren't meds as such, it's just a fatty solution (unless I'm mistaken).

Sorry about the announcements. They are never easy xxx

@myrainbowjourney I agree, you would kick yourself if the month you get pregnant something happened and you wasn’t on the regime. Too many what ifs. Yes I don’t really understand about the intralipids either… or the price!!!

They aren’t easy but I’m hoping in a week or so I will be ok. Happy for them but never easy for us to hear is it xxx

@Tgrf55 no not at all. And it's hard to know how to react because it's not personal at all, it's just really difficult.

I just had a long soak in a hot bath - something else I've not done in ages because of TTC! It was glorious. Really going to embrace this time 'off' with less pressure I think. I'm still fully in it but looking forward to less of the regime and hopefully more of me. I've decided if the opportunity arises when we discuss at work tomorrow, I'm going to book the US trip. I have nothing to lose!

I'll book in the intralipids for some time in the next 2 weeks and then just see what happens! I guess I better get my home tracking head back on! xxx

@Onwardsandupwards1206 I’m so sorry to hear your update. I hope you are taking sone time to rest and treat yourself. I’ll be thinking of you x

Hi everyone, sorry I've been quiet, it's hard to keep up with all the messages but I have been reading them all. Sending hugs to everyone that needs one right now.

@MrsMargot you mentioned following the AIP and paleo diets which peaked my interest - did you find these difficult to stick to, especially whilst pregnant? I'm familiar with paleo and know it can be quite restrictive. I'd thought about trying the AIP diet recently but need to look into it some more.

I also wanted to ask more widely if anyone has any knowledge about MTHFR mutations? I did 23andme a couple of years ago and realised I carry one of the MTHFR mutations. Apparently it means I don't metabolise folic acid properly. Do any of you have a MTHFR mutation (that you know of) and did it change your treatment plan? I've email my consultants secretary to ask but haven't heard back yet. I've come across a ton of stories connecting MTHFR mutations and recurrent miscarriage but the science seems to be lacking.

Hi all,

I took a little break as I felt I was bringing too much negativity to the thread. I'm all booked in with Dr Jan on 6th May for procedure to remove the cysts. Will be in limbo till then, it can't come quick enough as its quite uncomfortable!

@VenusStarr we are the same re struggling to conceive. 2x pregnancies on the 1st & 2nd month of trying (not tracking ov dates) and now 7 cycles timing everything perfectly and nothing. It's hard not to feel like it's related to the plan but stress could also be an issue for us all. People say this can have an impact on tryin to conceive and it feels like there is so much more pressure when paying for all this treatment!!

@Tgrf55
I experienced the same thing, cycle is now 23 days on the plan and ovulating on day 8-9. This is why I was very skeptical when they told me to trigger on day 16 or 17. I also.know exactly what you mean about announcements. I had to come off all social media, it was too much. Feel so sensitive about it all.
Thank you to the ladies for sharing your success stories. It really gives hope and reminds me what we're all doing this for.

@taffeta00 would def be up for meeting up, I live in Epsom. it would be really nice to talk about it with people who understand. Have a nice weekend ladies, thinking of you all xxx

@89Hope you were not bringing negativity. This is a space for everyone, no matter what you are feeling or going through.

I hope your wait til your procedure goes quickly

xxx

Two miscarriages and I've been diagnosed with high NK cells and thrombophilia.

NK cells are double what they should be and starting steroids today.

Can anyone offer any words of wisdom? Was advised not to conceive naturally :(

Thanks @myrainbowjourney xxx

Hi lovely ladies 🙂

I was on the last thread as TheHopefulEgg but did a disappearing act after a bit of a wobble. IVF prep became a bit overwhelming, and I was also doom-scrolling, so I deleted my account in a bid to focus on my mental health. Did me the world of good.

I’ve been in London for three weeks now, and it’s been a tricky time with a couple of false starts, but I finally got through the stimulation phase and egg collection is tomorrow morning. We find out about fertilisation on Good Friday and how many embryos have made it on Easter Monday, hence the daft username. And that’s assuming egg collection goes well. So many hurdles but sense of humour still intact!

One of the reasons I’m hopping back on is to ask about the immune testing and treatment you’ve all had. I’m due to come back to London in a month to “repeat immune tests” and I’m assuming my clinic means the Chicago tests, which I’ve had already. But from what I’ve read (and heard on a recent podcast with Mr Shehata) this won’t cover all potential immunology issues. I hadn’t realised until last week that he actually carries out his own tests. And his approach to treatment seems ideal for someone with anxiety and PCOS. Will he treat you if you’re having IVF elsewhere? I’m wondering if my clinic will be happy about it but I’m ready to push a little to cover all bases.

Let me know how you’re all getting on and what the next steps are for you. I’ll have a wee catch up later 💛

Hi @Conundrum12345. What clinic are you under? Did they say why not to try naturally?

How long do you have to take the steroids? My treatment is starting them from ovulation so I'm not sure what your plan involves.

@MyEasterEggs hello! Welcome back! Sounds very exciting about the next few days. Fingers crossed you have lots of positive news over the weekend.

I'm not on the ivf road (yet) but I think he will treat at another clinic as he doesn't offer it himself. I think he works with a clinic closely, but it's not compulsory you use it, as far as I know.

My next steps: I'm on a break from steroids at the moment after another negative month on my 7th cycle of super ovulation. So just trying naturally but with intralipids. I'm getting pretty fed up with it all, and hope is dwindling, but we continue on xxx

@MyEasterEggs welcome back :-) What a brilliant name, I hope the Easter bunny is on top form for you this weekend. Seriously though I hope it is smooth and pain free and you get lots of brilliant embryos.
In answer to your question, yes CRP would be happy to treat you along with your IVF clinic @VenusStarr am I right in thinking this is what you do? I go through CRP who partner with Kings (I don't suppose this is your clinic) if not they will support you anyway.

@89Hope not at all, I'm glad you are finally booked in. Sorry to hear you're going to be uncomfortable until then ;-( The physical pain takes such a toll on how we mentally feel too, it's the worst.

@Conundrum12345 good to hear you have a diagnosis and treatment plan. How are you feeling about it all. I hope you are one of the women who has fast success on the treatments.

@Sezmarelda1 sorry I haven't come across that myself x

@myrainbowjourney managed to catch up on the thread and I’m sorry you’ve had such a challenging time. Sometimes a break, and a good rest, can be helpful in building up that resilience again. This fertility business requires so much energy and stamina.

Were you on anything else besides steroids and intralipids? I’m interested to understand what else he treats with as I don’t respond too well to steroids (anxiety) and there was another drug he mentioned for those with PCOS. That’s what I quite like about his approach as it seems like he looks at the full picture. Do you feel that way? Sending lots of love. I know how tiring it can be xx

@StillTrying10000 yes, keep rolling out the Easter puns! Thanks so much for your well wishes. I’m feeling okay and trying not get too caught up in the outcome. Quality over quantity and all that. But easier said than done I suppose. How are you keeping xx

Hello 👋

Yes @StillTrying10000 I am with Create locally for ivf and Dr S does all my immunes. My ivf clinic are happy to support me on the protocol and have a copy of it (and also don't agree with the amount of meds I'm on, but said it's up to me). How are you?
Love the user name @MyEasterEggs keeping everything crossed for you over the weekend. I hope you're not too uncomfortable. Are you being sedated? I really liked that part.

Don't feel like you can't share here @89Hope it's truly shit ❤️ I hope the surgery goes well for you.

Who are you seeing for your immunes @Conundrum12345? My treatment doesn't keep me continuously on steroids. Why have they said not to try naturally?

How are you doing @myrainbowjourney? I realised I didn't reply the other day. Sorry, we loved the car but decided not to do it right now with the unknowns of my surgery. Its crap how you have to constantly deprive or make sacrifices with no guarantee.

It's our wedding anniversary today, 4 years ❤️ and also a due date. We're going out this evening, so that will be nice. Tinged with sadness, as always, but we're OK xxx

Cross posted @MyEasterEggs Dr S has put me on metformin. I don't have pcos or diabetes but that's commonly used for both. I'm on 3 tablets a day now. Initially I had to build up and it did give me a bit of a dodgy stomach but it's fine now. Was it that medication that was mentioned? I've heard it's good for regulating your cycle and egg quality too 🤞

@VenusStarr wishing you a happy anniversary. Sorry it’s a date that’s tinged with some sadness. Our anniversary falls the day before my son was due so I can appreciate some of what you must be feeling. I know it’s a cliché but it’s become a little easier with time and we try to make it a special week 💛

I’m feeling okay and looking forward to sedation. Seems nobody wants to come round from it! How did you feel afterwards? We’re due to come back to apartment so I can rest then drive home next day.

I think the drug I’m thinking if is Hydroxychloroquine but I’ve also come across Tacrolimus as a treatment for immune issues. I think he mentioned metformin on the podcast so that was encouraging as I’ve been on that for three months. 500mg twice a day xx

I had my blood test results today my Tacrolimus level is 6.1 whoop! Bang in the 4-8 range we need to go ahead with the FET. They want another test on Tuesday again though so I'm scared for that but hopefully it stays consistent and we can go ahead as period is due next week.
@MyEasterEggs I'm the first patient Dr S has tried on Tacrolimus so I'll be reporting back if it's the miracle drug I've been waiting for. It's a truly horrid drug though, but will all be worth it if it finally works!

Hydroxychloroquine is also a good one to try, along with low dose aspirin, no side effects for me and I got all the way to 16 weeks on it before an infection caused a late loss. 💔

@VenusStarr thinking of you on this happy but challenging day x

Thank you ❤️ @MyEasterEggs

I was ok after sedation, I did feel a little bit nauseous but wasn't sick. They do check and make sure you've been to the loo before you go. I did just come home and ate a little bit then went back to bed. Dh wanted to go to a garden centre! 😂 I think I was a bit tender so used a heat pad on my tummy and had some spotting but not lots. So definitely a good idea to rest and head home the day after.
If you're doing a fresh transfer, I'd advise starting your progesterone a bit earlier after collection, I was told that I'd be OK to start in the evening but that meant that I only had 4.5 days of progesterone before transfer and when I did my era, I need exactly 120, I'd only had 108 hours and bled early / had a chemical. I'm convinced it was due to my progesterone levels.

I think @StillTrying10000 is using Tacrolimus now. I'm on hydroxychloroquine (well, not at the moment, but it's in my plan). I think he really likes it and sometimes uses it instead of steroids.
Good that you're on metformin too :)

I'm doing a lot of cross posting today! 😂 That's fab news @StillTrying10000 I'm sorry it's not been a nice medication to take. Got my fingers crossed for you for your next blood test 🤞 hoping this is your miracle drug 🙏 if alls OK, when will transfer be?

Thank you x

@VenusStarr ☺️ I'm having a quieter day at work as most people have headed off for Easter now, I wonder if that's why everyone is chattier today too.
It's hard to guess when my next transfer will be as depends on when my period shows up and how long they want to wait for my lining to thicken but I'm guessing around 7 May x

@VenusStarr

They said my NK cells are very high, I have heavy inflammation and thrombophilia was positive too (which can be under control by aspirin and folate). However they said I would not be able to hold a natural pregnancy. I've had repeated miscarriages so I'm being referred for genetic testing. I was told I'll require daily monitoring too given my results

I'm not in the UK so not with.Dr S.

I'm on Sitagliptin as of yesterday and will be put on steroids. How long before things start kicking in

Just devastated by it all