Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

Thanks @star2022 for your reply.

when testing I usually give myself an extra day, as in 11 DPO and when I’ve had bfps they are usually squinters at that stage. It does feel really early to test but I remember Dr S being fairly adamant that it wasn’t too early.

Best of luck with this cycle x

@star2022 yay that's great news re. your fsh! 7.9 sounds much more reassuring! And that's really exciting you are well into you first SO. Keep us posted with how things go! Re. the polyp, I had one found a few years ago and it was removed. It didn't help to get pregnant naturally for us but our 2nd IVF transfer resulted in my son. Ahh £2k seems loads to fork out but it will def be worth it. I guess if you got it done on the nhs you'd be waiting ages for it! We have had a bit of a rest tbh in anticipation of another ec. I rung up the clinic a few weeks ago and they said to just ring up the month we want to start but be aware there's a shortage of buserelin ATM so may do an antagonistic cycle. So I read up on that and think I would prefer that anyway!!

Hi everyone,

Thank you again to the lovely ladies who helped me back in January by pointing me in the direction of Dr Shehata's podcast on the NK/immune tests. I found it really helpful and informative. I'm sorry I've not been in touch since. I've been so overwhelmed with my situation and have had a terrible time with my clinic/investigations/treatment (not to mention work). It's been one thing after another (long story) and I'm losing confidence in my clinic (who I've been with for the last 3 years of my ttc journey).

I need to catch-up on the thread, but can see that several congratulations are in order - such wonderful news @JessL12 @SReyn @Maxime34 and @Hayley220 - so encouraging - I hope you are all keeping well. Sending hugs and encouragement to everyone who is still struggling / under treatment. And @VenusStarr I hope you're having a lovely relaxing holiday.

So ultimately I ended up having the Chicago lab tests based on reassurances I received from my clinic (also I'm not based in London and can't afford any more delays). The first lot of bloods were messed-up (long story). So I had to have them done again, and that time I was unwell with a bad cold/flu virus and had been for several days. I phoned my clinic the day before the test to ask whether this would affect the test (as my immune system would have been in over-drive) and they assured me it wouldn't - so I went ahead. But then when I had the review with the Consultant (to discuss the results), he said there would have been an inflammatory response and he couldn't say either way whether the test results were affected! So now I don't know whether the test results are reliable; whether they're worth the paper they're written on. Does anyone know the answer to this please?

The results showed increased NK cell activity (25.4%) and the level of NK cells were at the upper end of normal at 12%. TH1:TH2 ratio was very high at 44.4. But could this be because I was unwell? The previous explanation we were given for our miscarriages was sperm DNA fragmentation (my level 1 recurrent miscarriage tests were all normal) so it's all very confusing.

I've gone ahead with treatment (intralipids, prednisolone and inhixia) in any event, as I feel I have no choice. Treatment has moved quickly and I'm actually in the middle of a medicated FET cycle, with transfer scheduled for this Friday. Which leads me to a couple more questions I'd be so grateful for your help with -

I had a scan last week and all looked well with the lining but, a couple of days later (before starting the progesterone pessaries), I had the worst night sweats for 2 nights in a row, and I've had some cramps, and I'm now worried that my estrogen levels could be dropping (I only ever get night sweats when my period is due). Can this happen (dropping estrogen levels) and, if so, would it affect the lining? I've managed to persuade them to retest my estrogen levels tomorrow but they won't rescan me, which I think is nuts. What should the estrogen level be?

Also, I was due to have my progesterone levels checked on Thursday (the day before transfer). I've now been told I can have this checked at same time as estrogen tomorrow, or on Thursday as previously planned (for some reason they can't do the estrogen on Thursday). Apparently it won't make much difference. But why then is the protocol concrete about having progesterone tested the day before transfer (not 2 days before)? What's best for me to do here? And what should the progesterone level be?

I'm sorry for the long post and all the questions. Although I've been through 3 IUI and 2 fresh IVF cycles, this is my first FET and I'm really conscious that this time I am completely reliant on the estrogen and progesterone drugs as not producing my own. I don't want to waste another precious embryo.

Really hoping that the intralipids and prednisolone make the difference this time, but I'm conscious that some of you ladies have been on this treatment for months prior to ART cycles, whereas my clinic seems to think this isn't necessary. I only had to do day 21 intralipids, followed by pred along with IVF meds from day 1 and further intralipids on day 8. I've no idea if this is right.

Any thoughts / advice would be much appreciated, thank you xx

Hi All

I’m Having some problems coordinating the recommendations from Dr Gorgy with my clinic. Dr Gorgy recommended starting clexane from day 7 of taking oestrogen prior to transfer however my clinic have started me on day 1 of taking oestrogen (so a week early) does anyone know if there is any benefit to this? Or have I just wasted £200???

Also my clinic won’t put me on higher dose steroids without knowing no how long for but Dr Gorgy says the dose would be reviewed if I get BFP. So now I’m worried my clinic won’t let me have the higher dose am currently on 10mg and worried it’s not enough. Anyone else had this problem?

Thanks in advance for any advice. I’m sorry I’m not on here much but to ask questions but I’m grieving the loss of my dog at Xmas and am just in bits most of the time. If this transfer doesn’t work I don’t know if I can cope.

Hi ladies, just wanted to come back and offer some hope to those who need it. I was induced this week at 38 weeks and I'm delighted to say my rainbow baby arrived safe and sound yesterday. After 5 unexplained miscarriages I never thought we'd get here. I'm not sure what aspect of my treatment plan did the trick but something did. Never give up hope!

@Sezmarelda1 congratulations, this is wonderful news ❤️

Amazing news @Sezmarelda1 congratulations!! What was your protocol if you dont mind me asking?

Hope everyone is getting on ok xx

I was under Prof Quenby, on progesterone, prednisolone, aspirin, omeprazole, Clexane and high dose folate.

That's amazing @Sezmarelda1 so happy for you!

Really happy for you @Sezmarelda1. Hope you're enjoying the newborn cuddles xx

Congratulations @Sezmarelda1

@Zest11 ahh that’s fab you’re getting ready to start your next cycle soon! I really hope it all goes well for you. I’m itching to test but there’s actually no point yet as I’ve had a trigger and to be honest, I don’t see our first cycle working anyway so just going with the flow for now. Good luck with yours and keep us updated too! X

@Faithhopelove83 sorry I’ve only just seen these messages! Did you get your Estrogen and progesterone checked? I’m not too sure about the Estrogen but I would have said to not read into symptoms too much as you would have been taking estrogen for medicated FET so they wouldn’t just drop like that. In terms of progesterone, I’m guessing 2 days before transfer is better anyway because if it’s low, you’ve got time to top it up. Usually I’ve had progesterone only checked on transfer day and it’s been low and more of a worry as then you think it’s not high enough so 2 days before is fine I’m guessing. My clinic had a threshold of over 30 to be sufficient for progesterone but I know loads of clinics differ! Either way I hope it all went well for you xx

@InvisibleDreamer the only experience i have of Clexane was when it was used for my 4th transfer, it was started on transfer day for me but just to note I don’t have any clotting issues so maybe it differs if they’ve actually diagnosed something for you? And maybe that’s why they want you on it earlier?I’m not entirely sure. During this same cycle, I was given steroids too but only 10mg and my clinic did this based on my positive ANA. When I told dr shehata this at crp, he told me it wouldn’t have even done anything and I would have needed a much higher dose. Unfortunately from my experience, clinics only give you doses based on if you’ve been diagnosed with something and follow a strict guideline. There was no way my clinic was willing to give me a higher steroid dose. I hope this kinda helps in some way! Sorry to hear about your dog :( x

@Sezmarelda1 how lovely!! Congrats and thank you for giving us a bit of hope ♥️

Lovely news @Sezmarelda1
thanks @star2022 I’ve not been diagnosed as having any clotting problems but some of my immune testing results were the higher end of the normal range plus I had a positive ANA so I think my clinic may just be being a bit cautious. Bit sore already from the injections and only on day 3 not sure how I’m going to manage it if I have to keep it up for weeks. Not feeling hopeful for a BFP however so probably no point worrying about it. Have passed on what Dr Gorgy said about reviewing the steroid dose if I do get a BFP to my clinic so will have to see if they allow me to at least increase it for now. My last FET I was on 10mg til 8 weeks & I still worry whether stopping too early caused the mmc or whether it was enough. I am quite petite and drugs do tend to affect me more (can’t take day nurse etc…without being drowsy) so I will just have to hope if my clinic don’t agree that it will be enough for me. It just feels like such a lottery in terms of whether any of it is making any difference. Fingers crossed for your SO cycle.

@InvisibleDreamer oh I’m not sure why they’ve started you on it so early? Were you on aspirin too? I was told to have aspirin from day 1 so maybe that’s why my clexane was only introduced at transfer day. I hate how all these clinics differ!! I know what you mean with the clexane, but I did find if you pressed or rubbed it after injection it felt more bruised. The only thing I used to do was just place a cold bruise pack before and after on it but don’t press it down, it seemed to do the trick and I didn’t get any bruises either. I’m the same as you! Petite and respond to drugs sooo much quicker hopefully it’s a good thing for you and I really wish you all the best for this cycle! 🍀

Hi ladies, just catching up on the thread but can see that there have been a lot of bfps which is so wonderful to see! And a huge congratulations to @Sezmarelda1 on the birth of your baby. Holding on to hope that it is possible.

I’ve just had another unsuccessful super ovulation cycle and I’m unsure what to do this month as I have a laparoscopy at the beginning of April to look for endo - which I’m really not sure if I want or not.

Has anyone else here also been diagnosed with or have suspected endo/adeno? I’d be interested to hear what you decided was the best option for you, to preserve your fertility but also to try and help a pregnancy be successful?

I’ve don’t a lot of research and know ideally I should be seeking a Nook surgeon, however I can’t afford to pay privately and I’m struggling to get an out of area referral with a specialist. The lap I have booked is with a general gynae in the NHS and I’m very worried he either won’t be skilled enough to find endo if it’s not really obvious, and that if he does find it he won’t be skilled enough to not resort to ablation removal techniques as opposed to excision.

I’ve had contradictory advice as to whether having surgery will further compromise my fertility or will actually improve our chances of not having another miscarriage. I’ve read having excision can remove some of the root cause of inflammation, which could be causing a heightened immune response.

I know this isn’t strictly immune related however I do think it is all connected, so I’d be really grateful if anyone has any experience they wouldn’t mind sharing Xx

@InvisibleDreamer i was started on fragmin (does the same job as clexane) 2 days after egg collection. So 3 days before transfer. Not sure if you’re doing fresh or FET. I was also on asprin 150mg. Have no diagnosed clotting issues.

@HopefulH i had 6 unsuccessful SO. Then has got pregnant with my first IVF round on all the immune meds. When I had an ectopic before I asked the surgeon to have a look for endo while they were in there. I don’t have any in my womb (or didn’t at that time) but I did have it over rectum & bowel. I’ve never looked into it enough to see if it has the safe negative affects but I’d assume so because it causes inflammation in the body. I could be wrong though. Never had it removed.

Thank you so much @star2022
That was the decision I reached in the end, to test the progesterone early on Wed - but, even then, I didn't get the results until this morning (transfer day). Unfortunately, they were low at 21.

My estrogen levels had dropped by 34 (from 1108 to 1074), but that's apparently within normal fluctuations. So it must have been the pred causing the night sweats.

So because the progesterone levels were low, we were given the option to start Lubion to try to fix the levels (but it might already be too late) or cancel the cycle. The doctor was erring more towards cancelling. I was devastated. We decided to go ahead with the transfer but, instead of using our next best embryo, to use the 2 lowest graded ones (which leaves 2 good ones left). Everything went well and they're now safely on board 🙂. Pred has been doubled today, Cyclogest increased, and Lubion and Inhixa injections added. Just trying to get a private prescription, as Asda do the Lubion at half the price of our clinic! Now for the 2ww...

I think you're in the 2ww at the moment? I hope it goes well for you xx

Congratulations @Sezmarelda1 , such wonderful news! Hope you and your rainbow baby are doing well xx

Hi @InvisibleDreamer
I'm not on Clexane. I'm on Inhixa, which I think is the same (perhaps cheaper). I don't have blood clotting issues, they've just thrown it into my protocol this time along with Prednisolone and intralipids. I've to start the Inhixa injections today (transfer day). Sorry I can't explain why you've been started on Clexane early. Hope you're ok and all the best with your cycle xx

Hi @HopefulH ,
I'm sorry you've had an unsuccessful SO cycle.
I had a laparoscopy through my first fertility clinic (not the one I'm with now), back in 2018. They did the dye test to check no tube blockages at the same time. They didn't find any endo, but I did consent to them removing it if they found any. I'm not sure how they would have done that, by I thought it would have been by excision. Sorry I'm no help.
All the best with what you decide xx

@Sezmarelda1 massive congratulations! That is brilliant news!

@LuckyNo14 sorry which clinic are you with re. The fragmin? The IVF protocol Dr s has given suggests I take it from a week before EC apart from the night before and then again afterwards. I took don't have any known immune issues so I thought to take it for a good few days before EC seems a bit excessive (I am obviously no doctor!) If I tell my IVF clinic I plan to take it I can't imagine they'd be overly happy!

@star2022 and yes, I can completely get why you want to test. How many dpo are you now? What were the intralipids like and what did you do? Did you take a book? How long do they take?

Congratulations @Sezmarelda1 ♥️🥰

Just a brief update from me, this holiday has not gone as we'd hoped. Dh is very sick and been in hospital all week and needs surgery.. Insurance are dealing with it but it's complicated. Trying to be strong but just want to be home and for him to be well.

Oh no @VenusStarr that’s awful. And so stressful to be happening abroad when you were supposed to be having a relaxing holiday. When is he having the surgery?