Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@InvisibleDreamer Prof Q doesn't do private clinics. When I was referred, it was about 8 weeks wait. You can self refer to professor Brosens at the implantation clinic who works with Prof Quenby.

I'm sorry @Sezmarelda1 I also have had spotting and no spotting and it's not been good news. Equally I know of people who've had really heavy bleeds and all was well. Maybe epu could bring your scan forward? Sending love ❤️

@birdbybird have you ever had a baby tested and its been chromosomal?

@VenusStarr @Amy00 thank you very much for asking. Somewhat traumatically I had the miscarriage at home yesterday. And I think* I managed to catch what needed catching. The sieve advice was genius. I talked to the clinic this morning and they said that it will take 6 weeks for the results which sounds an awfully long time. I also asked if they would do a scan to make sure that everything is out at some point but they suggested I should go to the local EPU which I will do.

Other than that, I am trying to keep a level head and try and guess what the next steps would be. I
am thinking of going back to the AIP diet to try and keep my immunity at bay in the meantime.

@Sezmarelda1 that sucks. However as the ladies said it could be normal spotting. I also had miscarriages with and without and I know someone that had spotting until 17 weeks that was coming from a polyp in the cervix and although upsetting it was nothing to worry about.

I hope you get some answers from the cytogenetic testing @MrsMargot , how are you feeling today?

My potassium level has normalised after 3 days of treatment, which is a relief. It will need to be closely monitored as it's likely to drop again whilst I'm on pred. I've not had any spotting so far today either, although I'm constantly knicker checking now, I'm so anxious about it 😏

@Sezmarelda1 I am doing alright considering. Thank you for asking ❤️ Boots of crying and feelings of sadness. I cannot also get rid of the blaming myself feeling but all these are to be expected I suppose. My main big issue is that I have had really bag heart palpitations. I asked the nurses and they said that it could be that my iron is low due to the blood lose. I am waiting for a GP appointment to check.

how are you?

Big hug @MrsMargot, I think we can all relate to those feelings of sadness, and searching for the cause and blaming ourselves in the process. I've really struggled initially after my miscarriages and it's a horrible and lonely place to be. Do you have support from any friends or family who know what you've been through? I hope the palpitations settle quickly. I had to have an iron infusion after my third miscarriage as my ferritin had gotten so low. My haemoglobin was fine though so it nearly got missed. If you can, see if your gp will check your iron stores (which includes ferritin) and not just the standard haemoglobin blood test x

Hope everyone is doing okay. Just curious, has anyone had covid? I have always said these nk cells must be what's stopped me catching it (even when my husband had it). But I've had a cold for a few days now and lost my smell and taste. So going to do a test but I wonder if I conceived now it would eliminate the need for all the drugs lol. Not that I am ovulating but it's a thought that's crossed my mind. My son was conceived when I had a viral infection but dr s didn't seem convinced that would have made a difference x

@VenusStarr how did your scan go this week? Hot tub break sounds fab although know what you mean about secretly hoping not to use it!

@Sezmarelda1 how are you doing? I hope the spotting was just a one off. Glad the potassium issue has been sorted!

@birdbybird Sorry to hear about your mc. I'm in a similar position. I asked the clinic about PGT-a testing and they said they do recommend it, I've attached their response.

@MrsMargot I'm so sorry you had to go through it at home rather than the planned D&C. As if things aren't bad enough you at least want to have it happen the way you had planned. 6 weeks sounds a long time for the testing but NHS is 12 weeks I think. I'll be doing NHS route as it's too far to travel to drop it off at Epsom. I've just looked at the AIP diet, not heard of it before really, would that help for NK cells or do you have another condition to manage? Please don't blame yourself although easier said than done! I have feelings of complete pointlessness. But we are doing everything we can. Did you manage to get your iron levels checked at the GP?

@Ralowi hope you don't have Covid! I've never had it because I've been super cautious forever and sick of it. My OH had it in March and I didn't catch it off him which was a surprise so maybe I do have a higher immune response against it? Think we are going to start living life normally again now, it was just while doing IVF where the cycles get cancelled if you catch Covid and it damages sperm quality for 3 months, on top of the immune suppressants... it's just all not ideal really.

So I had my 8w rescan at EPU this morning and it hasn't grown at all since last week and if anything has shrunk, now 3.6mm vs 4.1mm last week. So now is 2 weeks behind. Unfortunately it still has a very slow heartbeat so they can't do anything to manage it and even advised continuing with the meds, although they said it is definitely a miscarriage and is just a case of waiting for it to come to an end. She apologised and said it is mixed messages but they have to say to continue with the meds as they can't be seen to be interfering in a live pregnancy. Even if it is doomed. So me and OH have made the decision to stop meds today as it is totally pointless and prolonging the inevitable.
I'm booked in for another rescan next week, have called Epsom to cancel intralipids tomorrow and asked for a follow up appointment with DrS.

Hi everyone
@Sezmarelda1 wow that's amazing news about your potassium and epu
😃

@MyEasterEggs thanks for the links I will check them out. I've never heard of medichecks so will check them out too thank you 😃

Gonal is so expensive I just don't know if I want to go down that route for superovulation or ivf as I will be gutted if both fail. I was on Letrozole, progynova, prednisolone, omeprazole, inofolic alpha, Cyclogest, metformin, aspirin, GCSF, vit d, Pregnacare, omega 3, Coenzyme Q10 and also on medication for my pituitary tumour. I was getting sick and tired of being on all these drugs and vitamins. I ended up getting a pill box as it was overwhelming and my mother in law walked in on me one day will whilst I was filling it up. She had that look on her face like what the hell is wrong with this woman why is she on so many pills 😂! It's just too much considering I was only on half these with my successful pregnancy so not sure what's going on. I have to say my period was different this month whilst I've stopped everything. I felt like I had a proper period this time 🤷🏽‍♀️.

I thought I'd be happy taking a break and not having to think about anything but it's had the opposite effect, I feel more depressed as I feel like I've wasted a month when I don't have time on my side as it is. I'm not sure about anyone else but I feel like I'm the oldest one here at 41 years old 😩

@MrsMargot thank you. the problem with me is that I'm not even getting pregnant anymore so miscarriage clinic won't see me. I'm feeling the same as you stressed with the finances.

@Ralowi the sleep issues must be awful for you. Must be hard to manage without any sleep on top Of all the other stresses you have! I've stopped everything as well, just taking Pregnacare, omega 3, vitamin d, pituitary meds and actually I'm still taking the metformin as CRP said that would help with my pcos. But they said take it 3 times but I'm only taking it 1 or 2 times bcos I keep forgetting. My husband is the same, keeps saying he's happy with the one but I think I'm the one pressuring to try again as I want my son to have a sibling and he just goes along with it. Yes before I went to see dr s I was getting pregnant within every 3 months. And when I went to see dr s we got pregnant the first time he told us to have timed intercourse. In fact even he was shocked as he wasn't expecting it to happen that quick. Then I had my son in may 2021. Went to see Dr S in Jan and started trying again in feb and basically nothing since then. And this time I'm on way too many drugs! They want me to try Gonal now on top of everything or go down IVF route. But then I've not seen Dr s since Jan and my husband keeps saying to me that's why im not pregnant bcos dr s isn't overseeing my care. Does anyone else feel that way??

Hi @Amy00 thanks for the info on Pgt-a. I’ve paid my invoice and signed the consent forms for our two Frosties to be tested. Waiting for the post mc period to show up. It is 3 weeks today since the surgical removal. Also have to fill in the forms for Dr Shehata… the appointment is in less than 5 weeks. How old are you? I’m almost 42.

Hi @Sophi81 my son was born end of 2019. I feel like it’s been ages waiting for #2. I’m trying ivf though as only have one tube and my age means can’t wait. Does Dr S not oversee treatment of all patients?

@Tgrf55 many congratulations 😃
@HoldingOn2Hope oh no that sounds awful. Glad they sorted it out.

@Amy00 dr edge told us to not try so I'm scared but it does make sense to take drugs at the point of positive pregnancy test. Has anyone done that before? At least that way u not pumping your body with drugs unnecessarily

I'm really sorry I haven't had a chance to catch up with everyone's messages. I'm still going through Monday messages but I have to go to my blood test now for some of the fertility ones my dr referred me too. I will read the rest when I get back and respond. Take care everyone xx

@Sophi81 I don’t think it’s possible to keep up with everyone. I just reply where I think I can help (and often I can’t because I’m only about to have immune treatment for the first time)! I’m rattling around with the meds too and feel like my wee granny with the pillbox. But it’s so good I bought a second for my London trips because I’m away for two weeks at time 😂

I see there’s some chat about PGT-A and it was 100% the right thing for me. 3/7 embryos were euploid and of the four that didn’t make it, three were high grade, so it could save a lot of heartache for us. I don’t think the testing is for everyone but with our ages (I’m 38, he’s 43), history of six losses - one of which was a trisomy and four of which we had no results for - plus my partner’s male factor issues, we felt it was the right option.

@Sophi81 totally agree on all the drugs and I know people have said they now struggle to conceive so I'm sure it's down to at least one of the drugs! I've come it all, I'm even tempted to come off the pituitary meds as I'm almost certain we won't try again and I want to see whether I actually need them (a few years ago came off them and eventually my periods did stop). I'm even thinking of going the opposite way and going on the pill to see if that helps my sleep as I don't know if if the insomnia is linked to my cycles. I've tried the progesterone only pill before and that didn't help but I know my estrogen is low so I assume I need the combined one. I know how you feel about another sibling, your son is still very young so you don't need to worry about the age gap at least. My son is 5 this year and feel like if I carried on trying by the time I have a baby it will be too big a gap. Did you have your bloods done again with dr s after r your son or stick with the same plan? X

@Amy00 so sorry about your scan. I have been in that same position and even though no growth and heartbeat was very slow, I had to continue the progesterone and that made it so much worse as my lining was too thick and ended up in surgery just to get rid of the lining even though I had passed everything else. Covid test was negative thankfully so just a prolonged cold! I do believe the nk cells can protect against covid though. I'm sure we would all rather have a baby than immunity against covid though!

@Sophi81 thank you very much. So anxious but praying every day. My next scan is a big one at 10 weeks as I miscarried at 10 weeks previously. Hope things are ok with you x

@Ralowi sorry but I have to disagree regarding the meds stopping you fall pregnant. You won’t know until you try but it certainly wasn’t the case for me and hopefully isn’t for others. Re NK cells and Covid I’ve had Covid twice so it wasn’t a fa for for me. Hope you can stick to a decision soon with what you want to do x

Wasn’t a factor for me*!

@Tgrf55 congratulations and hope all is well at the next scan. Yeah I think everyone is different, it is just something I have come across a few times but I guess it's impossible to know what would have happened without the meds. I just found it all a bit daunting before even actually trying. Yes for now we are not going ahead with treatment and I have cancelled my intralipids. It's sad but I can't even think about a baby when I'm so exhausted!

@MyEasterEggs I’m sending my two for Pgt-a. Only just paid today after a week and a half of waiting for the clinic to get their act together. When can I start chasing them for the results? Lol

@Ralowi / @Tgrf55I’m another who has never tested positive for covid. Although I do work from home a lot and last year caught a fair few colds along with pneumonia from a cold in January. But never covid!

@birdbybird I think we were advised to wait two weeks but got the results less than a week after EC. I was surprised as chase for everything else 😂

Suppose there’s the matter of defrosting yours before biopsy too so could take a little longer. What’s the next step for you if one or more is euploid? Straight onto another FET? We could end up cycling together as I’m looking at late Sep/early Oct for my first FET 😬

@Tgrf55 I'm sure you may have mentioned this or I just can't remember but did you get pregnant on superovulation or ivf? Did it work first time? Awwww I really hope it all goes well at your 10 week scan! I have everything crossed for you 🤞🏼

@HoldingOn2Hope my husband keeps saying the same thing. He keeps saying to me that most of the staff are new and they keep making mistakes. They forgot to give me Medications one time and my husband had to drive after work all that way to pick them up! He also not happy about dr s galavanting 😂 and feels like I would have been pregnant by now if we had been seen by him. I don't think he's keen on Dr Edge especially after I got mutilated during the Hyfosy procedure he was like adamant we need to see dr s but don't think that will happen as he is never around.

@Ralowi I had covid on 11th July but I was on my period so wasn't taking any medication at that point.

@VenusStarr hot tub sounds great!!!! 😃 how was your scan?

@Amy00 ahhh I'm so sorry to hear that ☹️ I really thought it was going to progress. I hope you are ok x

PGT-a can someone please shed some light on this? I don't understand what it is ? Does this mean they check the quality of the eggs to ensure you don't have chromosomal issues like Downs or Trisomy? 🤷🏽‍♀️

@birdbybird hi 😃 was your son born through CRP? I'm 41 and feel like i need to do something soon to make this happen. I'm just so petrified of IVF I don't know why. I guess it's the unknown. I haven't seen Dr S since January and every time I tried to book he was on holiday so no we have not been overseen by him which is quite annoying.

@Ralowi awww yes that must be frustrating if you have been trying for a while. My son is only 14 months but I think it's more the fact that I'm 41 and don't want to leave it too long bcos of quality of eggs etc or just complications rather than thinking of the age gap of my son. I don't really want to be any older than I am already and deal with complications of being older and pregnant 😩.

@Sophi81 PGT-A (formerly known as PGS) is the screening of embryos for chromosomal abnormalities that will affect an embryo by chance. So extra chromosomes (resulting in trisomies) or missing chromosomes. It’s sometimes confused with PGT-M (formerly known as PGD) which helps prevent some diseases or disorders from being passed on to the child.

We did PGT-A to reduce the potential number of IVF cycles needed to achieve a hopefully healthy pregnancy. Try and give ourselves the best possible chance after so many years of secondary infertility.

@Sophi81 thank you! I was due to start IVF in Aug but got a positive test in July from super ov. It was my 3rd cycle trying with super ov. I have 1 tube and only ovulate from the tubeless side without super ov. So so anxious but just trying to keep the faith it will be ok this time. Xxx

@MyEasterEggs Im not holding out much hope and expecting them both to be be aneuploid or for one of them to be lost in the thawing process. I’m feeling really pessimistic. I suppose I might try in the next cycle if I was lucky to get one.

@Sophi81 I had a natural conception for my first after trying for 6 months so no help from CRP for that one. I had no mc before my first so am much more pessimistic now with 3 mc in a row in about 1.5 years. Two mutual conceptions and one untested ivf embryo. I’m getting the tissue tested this time. Ivf was not as bad as I thought and I was petrified before. I’m also 41 but with one tube and turn 42 end of this year.

Natural not mutual.

@birdbybird We have our follow up IVF consultation on 1 September which will also cover PGT-A testing. How long after your mc are you able to do a transfer at your clinic? The CRP clinic said they need the cytogenetic results of my mc before we next try which will be 8-12 weeks. Assuming it's more like 12w as NHS that will be mid-November which feels like years away but think it's probably good for me to have a break mentally and physically. I'll be 34 in November but have no children and 7 losses. PGT-A testing combined with the immune protocol is the light at the end of my tunnel. We only have 1 frostie so I'm assuming it will either be aneuploid or fail to defrost so my headspace is already onto next full egg collection cycle! I feel your pessimism!!

@Ralowi @Sophi81 I've just joined a Facebook group (UK Recurrent Miscarriage Support Group) and looking at peoples posts there are other clinics that prescribe steroids from positive test only. It looks like Dr S changed his method from positive test to ovulation in around 2019. He probably sees a benefit but it is hard to say the other clinics are doing it wrong. For me personally I will keep taking the meds from ovulation (or egg collection in my case with IVF) just in case as I have no negative side effects from the pred and the intralipid trips are a pain but make me feel like I'm actively doing something to help so overall positive.

@Amy00 @Ralowi @Sophi81 - Not sure if any of you have listened to it but there is a podcast that Shehata did with The Fertility Method back in March. It's really useful and he explains everything in a lot of detail, he also speaks about starting the protocol from ovulation vs from positive test. Might be worth having a listen, it's on spotify. x