Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

[Conundrum12345]

I'm with CARE for IVF after multiple losses.
I have high NK cells and they have recommended steroids/ intralipids.

I have this week found out I have very low LADS. I know CARE don't provide treatment for them and Gorgy does.

Does CARE have an issue with getting LIT at the same time as treatment from them?

Would IVIG help the 2 issues?

[taffeta21]

@StillTrying10000 congratulations. I’ll keep everything crossed for you. Take care

[myrainbowjourney]

Oh @StillTrying10000 this is amazing to see ❤️. Gentle congratulations to you, and I'll be keeping everything crossed for more good news. Pulling and twinging can be a great sign. Lots of adjustments needed in there to snuggle in your embryo. Eeeeek!

🤞🏼🤞🏼🤞🏼

I'm fine thank you. I have my appointment on Monday so I'll see what the outcome of my extra dose is, and what our next steps are. Hoping for a good response at least so I can have hope for this cycle. I'll be so sad if I haven't responded at all, but of course that could happen. Will keep an open mind and see what shows on the scan xx

[StillTrying10000]

@myrainbowjourney how are you getting on?
My official test day is next Friday but I've had a feint positive today, 5DP5DT. It's such a relief for now but obviously been here many times before so i'm going to be pretty apprehensive over the critical next two weeks. All the pulling and twinging is freaking me out. Keeping my legs tightly crossed! x

[myrainbowjourney]

@TheHopefulEgg it sounds like things are ticking along nicely, although as you said it is a lot to get your head round. So much happening and to consider, but I'm sure you'll make sense of it all.

Did the clinic not accept the immune tests you had before? This is what worries me - the cost of having lots of repeat tests!

@taffeta21 sorry you have had a rough few days. I'd definitely ask what would cause you to be late, considering they triggered you, so you should have your dates pretty spot on.
Please rant all you like here. I also find it really tough mentally. I've started thinking about what we are going to plan and book if this cycle doesn't work, otherwise I was getting myself into a pit of despair.

Pred hasn't made my cycle late either. Only other thing I can think is if you took Cyclogest for longer, as I think that can delay your period.

@Onwardsandupwards1206 sorry you've had a tough few days also. It's so difficult to stay positive sometimes. Why any of us need to be here is beyond me.

Sending lots of love to all xx

@VenusStarr @StillTrying10000 @89Hope @SunDance21 hope you are all ok?

@StillTrying10000 any symptoms for you? Is tomorrow test day?

[taffeta21]

Thanks @Onwardsandupwards1206
I came on today, day 31, although it’s not like a normal period. I’ll ring the clinic on Monday and start again. It’s really tough to get yourself out of the headspace isn’t it?? I’ve been positive for so long but find these drugs make it really difficult.
I hope you’re having a good weekend x

[Onwardsandupwards1206]

@taffeta21 I’m sorry you’re having a tough time! I know how you feel, sometimes you just have to have a good moan. I’ve also had a really tough few days, just a bit bogged down with the weight of everything and feeling like it’s all so unfair. I’ve been in this head space before though so just keep trying to remind myself that it will pass.

I’ve not noticed any change to my cycle on the Pred I don’t think. But I’m sure it probably affects everyone differently x

[taffeta21]

Also has had anyone found the pref delayed their period?? I’ve been bang on day 27/28 since being on the treatment plan but it’s now day 30 and nothing. Thank you x

[taffeta21]

Hope everyone is doing ok. I’ve had awful cramps for 3 days, am 2 days late and had stupid BFNs. I’m really struggling today and know I’m ranting, which I don’t do very often, but I’m just so cross and angry we are all having to go through this when so many women have it so easy. I went out earlier and got so upset seeing all the mums wheeling prams around, moaning about various parenthood things. Just wanted to scream.
Rant over. I hope everyone keeps safe in the crazy weather x
Ps I’ve eaten a whole box of chocs in lieu of any alcohol

[TheHopefulEgg]

Thanks for checking in @myrainbowjourney.

I’m feeling a little overwhelmed this week, wrapping my head around the nutrition and supplement plan, and my OH is just back from London after seeing a urologist.

We’re both doing pretty well physically but emotionally I wish things would slow down enough for me to catch a breath! We get sperm dna and urine culture results in two weeks and I should be getting results from my vaginal microbiome sample too. The things we do!

Been following the thread and if I’m quiet it’s just because I’m so far behind you all and can’t really advise. But I’m thinking of you all and hope I’ll of more use soon! I think I’ll have my next immune tests in 5 weeks when I’m in London for EC, or maybe they’ll do it in a few months before FET?

I’m nervous but excited. Still glad we’re trying something new even if it feels heavy sometimes xx

[myrainbowjourney]

@VenusStarr I really hope he has something manageable for me. I'd like to try a few more months of super ov but I'm not sure he will let me. I've also noticed I have zero symptoms on Cyclogest now. When I started I felt pregnant every month. It's not great when it turns out you're not, but I'm worried it's not working for me. I just want something to change so I feel we are trying something new.
Sounds like you have a good plan. Maybe you could just open the subject with Dr S about your concerns around the stem cells and see how he responds. If he seems receptive you can tell him you can get the stuff on the nhs and will he support it. If he isn't, you can find out why he's concerned and push him to give you an alternative reason as to why you keep losing at 6+2.

I think I'd be a little nervous doing something he was massively against, so if you can get him to at least support your decision then you'll probably feel better. However I also agree that it's your body and you need to feel comfy. The main reason I went private was because I knew in my gut that the nhs were wrong that it would just happen. So if you feel like it'll help then absolutely go for it regardless. But I think it's worth floating it to Dr S and gauging his reaction. If he doesn't immediately say he supports it, really stress how important it is to you and see where you get to.

Just an option xx

[Onwardsandupwards1206]

@VenusStarr that’s all so interesting thank you. I’m very similar, we’ve never made it further than the 6 week mark (never seen a heartbeat) so I am starting to wonder whether it’s a lining issue and the sitagliptin could prove helpful. Do you have to be taking it a while before falling pregnant?

Hmm it’s a tricky one. I’d be interested to see Dr S opinion on it, what makes you think he wouldn’t be supportive of it? Have you asked him about it before?

I think you have to do what feels right for you. I do sometimes forget that it’s my body and that I can make decisions. Sometimes I just become so passive in the process and just do as I’m told, so I think if you know what’s right for you this time then hold strong on that.

Thanks for letting me pick your brains on this x

[VenusStarr]

I'm glad you're seeing Dr S soon @myrainbowjourney I've found him to be kind when we've seen him. I think we need that reassurance and I hope he has an approach you feel comfortable with ❤️ we're not ttc at the moment, I'm glad of the break, even though I'm tracking my cycle, it's more for peace of mind. I think we're just going to transfer my last embryo next (probably in May) and then see. We're both open to superovulation again before doing more egg collection cycles.

@Onwardsandupwards1206 it's been prescribed separately to my treatment with Dr S. I think my circumstances are complex in that we don't conceive easily (or at all now) and then when I do, I don't get past 6+2 (although my body never realises so had 4 mmcs all at the same point). I do still think my nk cells being so overactive in pregnancy is bad, so will restart all my meds and follow Dr S's protocol next time. I wasn't planning on telling him about the sitagliptin as I don't think he'll be supportive of it. But technically professor Brosens is under the nhs and has prescribed it, so I don't know? But my husband thinks we should do the sitagliptin, stick with my original protocol and see. Which makes sense but just not sure how Dr S will be as my baby was chromosomally normal, so think he'll suggest we try a new protocol. But I know it's our choice, especially as I think he'll suggest the gcsf injections which are so expensive. I'm not sure what else he has to offer. We definitely couldn't do that for multiple cycles and then pregnancy - it's about £80 per injection! Feel like that's a last resort.
What does everyone think about telling him?? 😬

You just call the clinic to book the biopsy when you get a positive opk and they do it 7-10 dpo. I did try to get a biopsy in January (my 3rd) but they were full on my day, I didn't have issues before. But because of my history they decided to just book me a consultation and when we went through everything he supported me just having the meds, especially as he thought we were losing healthy babies. I'm glad as I can't face invasive tests at the moment. Got my smear on Friday and am dreading it.

That's a good plan @StillTrying10000 I was absolutely petrified to test after my FET, so I just did a beta blood test. I only tested after my surgery, my anxiety was too bad. I've got everything crossed for you 🤞

[myrainbowjourney]

@StillTrying10000 oh this is very exciting. Hopefully this is the lucky cycle!

This makes sense. I never understood how it all worked. Yes 10dpo can be early but a lot of people do get a line, even if it's faint. Dr S has me testing 10dpo so it must be fairly common to see something.

I'm fine thank you. Just dosing up on letrozole and waiting to see what's going on in there. This is always the slowest part of the cycle for me. The TWW is hell but at least you've done everything you can by then. Just hope my body, and more importantly my left ovary, is super active in there xx

[StillTrying10000]

@myrainbowjourney it's the 4th transfer with the same clinic. I've had chemicals before with IVF but this is my first straight frozen transfer so maybe it will be more successful as my body isn't recovering from the egg collection like last time. You have the egg implantation after the embryo has grown for 5 days so it's similar to 5 days after ovulation. So I'd be testing 10 days after ovulation, which I know is still early but I've had positive tests that early before. How are you doing? x

[myrainbowjourney]

Ooh @StillTrying10000 I am sending all the positive thoughts and keeping absolutely everything crossed for you!

Is this the 4th transfer with the same clinic?

How does it work? Is transfer day like ovulation day or is it implantation day? 5 days isn't too long at all 🤞🏼🤞🏼 xx

[StillTrying10000]

@VenusStarr @myrainbowjourney yes I had my 4th transfer yesterday. Lots of cramping last night and today so so far so good but we all know this is just the first step. The misery of the TWW has commenced, I'm going to try and wait to test for 5 days x

[Onwardsandupwards1206]

Hi ladies, just catching up on all your updates! Lots of love to you all!

@SunDance21 I’m so sorry to hear your update. You’re so brave and positive and I really hope you enjoy a little break now x

@VenusStarr I have read a little about Sitagliptin. The theory behind it makes sense to me. Is it something you’re able to take alongside Dr S protocol? Or is it an either/or situation? If this time doesn’t work out for me I’d be really interested to get more information on it. Did it take long to get an appointment at the Coventry clinic?

[myrainbowjourney]

@VenusStarr that sounds like a great med to try, and I really hope it does the trick.
You are so right - the trolling is unreal. Always over a weekend too when you can't ask.

Yes Dr S is doing it this time. I was in such a state last time, they said to book in with him for the last one so he can also discuss my options with me. He always manages to make me feel a little better so I hope this time is no different.

I'm definitely following @SunDance21's lead and booking a holiday if this cycle doesn't work. I think the prospect of that or a successful month is keeping me going at the moment.

I assume you have tried this cycle and will try the new meds? Or are you waiting to see Dr S to try properly?

@StillTrying10000 sorry, did I miss your transfer was today? Let us know how it went!

@TheHopefulEgg how are you getting on? When is your next step? Sorry, my memory is rubbish!

[VenusStarr]

Thank you @myrainbowjourney it doesn't matter in the scheme of things are we're not trying but one thing I've been able to rely on is my cycle - it's always gone straight back to my normal.
The medication is called sitagliptin which is a diabetes drug, but it is supposed to help the stem cells in the uterus. The more I think about it, the more that theory makes sense as something goes wrong in week 6 and the doctor said lack of stem cells means your lining fails / breaks down. It was via professor Brosens at the Coventry implantation clinic.

I think that sounds like Sunday was the best day to start letrozole. I had that when I was waiting to start my first ivf cycle. Our bodies love to troll us! I'm glad you're still booked in, did you say Dr S is doing your scan?
You're doing everything you can ❤️

No worries @StillTrying10000 I thought a break would be good but now it feels like ages away.
I hope all went well with your transfer and you're feeling OK xx

[myrainbowjourney]

@VenusStarr sorry your temps aren't playing ball. I always used to get my biggest temp rise the day following ovulation, hopefully yours show something tomorrow.
Remind me what the new meds are? These are from the GP not the clinic?

I'm fine thank you. I thought my cycle started on Friday so booked in for Monday (day 11) and then my AF came to an abrupt stop all day, nothing then til Saturday. So I started letrozole on Sunday. I didn't know what to do but I'd rather start it late than start it early, I'm fairly sure Friday wouldn't have counted as day 1. I checked with the clinic and they said day 10 would be fine, so I'm pleased it's still on Monday. I really hope I get a good response, but I don't feel anything at all. I like to feel some sort of twinge that something is going on.
I'm just trying really hard to not see this cycle as the last, relieve some pressure xx

[StillTrying10000]

@VenusStarr ahh sorry for some reason I had thought you had an appointment on Wednesday. x

[VenusStarr]

Hi @StillTrying10000 I'm not seeing Dr S until March, so a few weeks to go. I have emailed the report over so he'll have that.
How are you feeling?

I'm almost certain I have ovulated but my temps haven't really shifted but my resting heart rate has gone up. I was quite hopeful that this cycle I'd be back to my normal.

How's everyone getting on? X

[StillTrying10000]

@VenusStarr good luck tomorrow. Make sure you take the report and give it to Dr S to look at. I hadn't realised but it has a few things he's specifically looking for in it which might be of interest. Let us know how it goes x

[VenusStarr]

@SunDance21 I am so sorry to hear what has happened ❤️ a break away and some time out sounds good. Sending lots of love.

Thank you for checking in @myrainbowjourney sorry I've been crap at coming back, I've lots to catch up on. I feel in a bit of a daze at the moment, not really present. I haven't ovulated yet, although I thought it happened on Sunday as had quite strong cramping but my temps are still low. I hope it goes up tomorrow, I can start my new meds when my period comes.
How are you? Have you started letrozole again?

Hope today went well @StillTrying10000

Lots of love to all ❤️❤️