Immune/NK Issues - aka Pred Thread no 25!

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An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

Thank you @Crystal2020 I'm glad I'm home and just want an evening doing nothing! Yes OH came into scan with me, he was just as anxious as I was.
It's all just a bit scary, I keep thinking what if the sac continues to grow and ruptures, all these thoughts are in my head. I know I don't want to go to the local epu but I think I may just get another scan on Tuesday/weds to see what is happening with the left ovary. I feel like a week away is too long, I just know this week will drag.
At the same time I think if Dr S thought this needed to be dealt with immediately he would have said. I still have the dull ache in my left groin and now I feel like my back is hurting but OH has said naturally I'll over analyse symptoms now.

Morning all,

I've woke up today feeling a little numb and emotional. I think spending the night reading about heterotopic pregnancies didn't help.
I feel as if I need to prepare for the worst - surgery to remove ectopic which gives the normal pregnancy 50% chance of survival. I've got Bupa cover so will be calling them to discuss options for surgery, obviously won't make decisions until my appt with Dr S. just dreading being hospitalised in the current covid situation and the thought of general anesthetic scares the life out of me, I've been through it twice but it really freaks me out.
Hope everyone is doing okay x

It’s only natural to feel like that @HoldingOn2Hope. That was such a lot for you to absorb yesterday and I would have been like you and ended up on Google last night too. It’s great that you have the BUPA cover and maybe Dr S could recommend someone good and BUPA approved if you do have to go down the surgery route. I’m keeping everything crossed that you don’t need to and it will resolve itself. How are you feeling physically today? X

@Crystal2020 I've spent the morning on the phone to Bupa and there's a silver lining to this hopeless situation - Dr Jan is on the Bupa consultant list! So I've got theme to authorise for me to see him if need be. Id rather have a procedure done if that's what's recommended than wait for a rupture and then be rushed in.
I feel ok. I don't feel pregnant, I don't know whether that's all psychological. My left arm is achy and I keep asking myself is it really? But it is. It's not severe and the groin pain isn't really there unless I touch it's tender.
I'm still in my pjs and just want the weekend to end so I can talk to the clinic on Monday. I feel helpless if I'm honest.

@HoldingOn2Hope wow what a roller coaster of an appointment - I'm so sorry you have had such conflicting advice BUT I agree with the other ladies - Dr S doesn't strike me as someone who would mess about with something like that so with very it of luck that we are willing your way it will all be fine, it's really positive that he thought it looked empty.

@Hazlet2 @Sophfr17 welcome.
I've actually seen both Dr Quenby /Brosens and Dr Shehata and they aren't all that dissimilar in approach. The biggest difference is that quenby/brosens said I needed to take prednisolone from bfp but dr S says from ovulation (a long with other drugs) as by bfp the damage to implantation is already done. There is a lot more drugs and expense with Dr S and I only moved on to him as I had another early mc on dr quenby's protocol but that's just me. Lots of ppl have had success. Quenby/brosens are also much much easier to talk to - really understanding. Hope that helps!

Ladies - I need your thoughts I'm having a mild panic attack today. I'm day 2 of my period today which would ordinarily be the heaviest day and there is barely anything bleed wise. I had a cramp this morning when going to the loo and then had to lie in the empty bath as I thought I was going to faint it was so strong and there was a bit of bleed then but otherwise very very little. Last month you may recall I said I had a really painful and lighter period and this ones even lighter. I'm terrified this is going to adversely affect our chances with my SO 1st round this month.

I have been eating bread/gluten more than normal since lock down and I'm wondering if the sudden diet change could have had an affect on my cycle/hormones - otherwise I'm worried that at nearly 37 my body is starting to shut down and my cycles are getting less and less heavy. I've got myself into a real state about today as I don't want to go to the bodily stress (as well as financial cost) of doing the SO cycles if it's a waste of time because I've got other issues going on.

Has any of you ever suffered painful/lighter periods due to diet changes etc - or got any advice on what this could be. Even better anyone had this and still gone on to fall pregnant. It might not sound like much but I've never ever had a light period in my life before and currently it's so little that I'm only having a bit of blood when going to toilet - nothing hardly on a pad. (I've done a pg test so I'm def not pregnant) x

@hrtbrk2 Ah tell me about it I feel as if I'm been on a very turbulent flight and my stomach is churning nor matter how much I try not to think about it. I've had the shakes all day 😑 I've actually questioned whether it's all worth it? Right now it doesn't seem so.

With regards to light periods, mine have got lighter after my miscarriages. I used to come on heavy with clots etc but now I have a light spotting day one, medium flow day 2 and light spotting day 3. From what I was told was that if your lining is thin periods are lighter and my lining is naturally on the thinner side. Having said that even with taking progynova it didn't make my periods any heavier. I don't think it would impact you falling pregnant as I have managed to. Are you started your Super Ovulation this cycle? Xx

Oh @HoldingOn2Hope you are such a little gem for your words of reassurance. I honestly don't know what I'd do without this feed. After all the years of problems I've had I think I've seen it all but this feed is just so knowledgable and reassuring. Thank you - I really hope you're right. I'm starting my first SO this month yes - I'm actually keen to do it anyway just to get the scan because at least they will be able to have a good look and check everything's as it should be and like you say it'll be interesting to check my lining as I've never had an issue with that before. I also never had a follow up scan from my last MC so be always wondered.

I totally get how you feel today - I really feel for you. Good news is never quite good news when it's tainted with worry is it, and god what an unusual one - talking about feeling like you've seen it all and then getting thrown a curve ball! I bet you go back next week and find it's just nothing and it all reabsorbs back into your system, that's what I'll be hoping for for you darl x

@hrtbrk2 Yay! I hope SO works for you :) and you're right it's worth it just for the follow up and scan and to see if the dose needs adjusting at all.
I just really hope the ectopic resolves one it's own, I know this sounds awful but I'm more worried about going through surgery and I to hospital during covid then losing a pregnancy. The way I see it is, if that happens it's happens I can't control the outcome.
I wish I could guzzle a couple bottles of wine tonight but that's not fair on the little bean that's inside!
Are you starting SO today on day 2 or day 3? Xx

@hrtbrk2 like @HoldingOn2Hope says it could well be a lining issue and then the scan will pick it up. I don’t know anything about dietary changes contributing to lighter periods but @HarrietM87 will. My 1st SO cycle was fine but 2nd scan the lining was too thin (I think because of the drugs because I’ve never had issues previously) and Dr S prescribed Progynova which worked and which I’m now taking this cycle again. Agree with you it’s good even to just have the scan and to know that everything is looking ok in there! I’m starting to realise that SO can be a case of tweaking etc until you get it right in terms of the drugs, lining etc so maybe think of the first round as a trial run instead of putting pressure on yourself. Hope you are ok, I can imagine how strange it is to have all that pain without the blood. The things we have to go through eh!

@HoldingOn2Hope that’s great news you’re authorised to see Dr Jan if you need to. You’ve done everything you can do by getting organised with BUPA and I understand what you mean about pre empting things instead of having to be rushed in if there’s an issue. What day are you due to see Dr S again? X

Thanks@Crystal2020 - yes lets hope so! I think you're right about taking the first go as a test - I told my OH what had been said on here about 4-6 months for most SO successes - if it takes that long I'm not sure I'll have a job left to be honest. A trip every month to Epsom to have scans is not going to go down well, I'm dreading having to tell them what's going on. It's one thing to do it for intrallipids when your actually pg as you don't care by then but to keep going up and down just for scans for SO - it's going to be a nightmare

How are you doing? X

@Crystal2020 My appt is on Friday - 6 days and counting! But I'll be on the phone to the Clinic on Monday as I don't think I can wait for a scan until Friday it's will make me go crazy! I've already rang epu today! I don't even know why! And I've rang the nurses teams at Bupa! 🙈 I really suffered with anxiety after my 3rd loss last May and by Xmas after a couple of appts with Dr S I started to feel better and positive like there's someone in control of this situation and today I've had the shakes all day. Just feel anxious all the time.

A week does feel like a really long time to wait @HoldingOn2Hope. What did the epu advise you? I hear you on the anxiety. I started counselling because I was in such a bad way after my January loss and a few people on here said it had made a difference to them. But I was only starting to get to the heart of it all when we went into lockdown so I don’t feel I’ve had any benefit from it really. Do you meditate? If you’re able to, that might be helpful even if it gets you off to sleep over the coming days?

@hrtbrk2 it’s tricky with work isn’t it. Are they aware of your miscarriages? I feel much better about everything now my boss is in the loop. She has kindly said to do what I need to do and she doesn’t need to know about it unless she needs to cover for me - which makes a huge difference. But I only need to be ‘offline’ for a few hours when I go to Epsom so I appreciate it’s different if it takes you a whole day? I’m ok thanks! This is the part of the month when I feel fairly good and positive...it’s after ovulation that I turn into a symptom spotting loon who doesn’t ever sleep! X

@HoldingOn2Hope I'm going to take today as day 2 as yesterday was first full day so took them this morning! How are you feeling today? I get it with your anxiety - I would really recommend online meditations and hypnotherapy,they have worked wonders for me lovely just to bring your head back to a controlled place.

@Crystal2020 wow, that's so lovely that your work have been so understanding! What a relief that must have been! I've only been in my job 1.5yrs and I made a point of never telling them a thing about our situ so they have no idea of my previous mc's or that I'm even trying for a baby. It's a sales environment so if they think I'm going to go off at any point to have a baby, especially with the effects of corona now too I don't think it would take much for me to become surplus to requirements! My boss is amazing and I think he'd be ok but it's not in his control so I'm not going to risk it until I absolutely have to x

Quick question re. The letrozole, do we know if there are any risks associated with doing the SO treatment? Like hyper stimulation? I've had no info from the clinic about it at all so wondered if they'd mentioned any risks, or even side effects to you guys? X

I've just noticed some bleeding 😑 it's like heavy spotting and bloody mucus (sorry tmi)

I though I'd check in with you girls!

So guess what? My NK cells are not just high, they are through the roof! Total count approx 552, CD69 activation 4.17 (Dr S said highest they've had this year, yay me!), cytotoxicity 29%! This makes me feel like such a freak! I know it's nothing I've done, but it's so bloody typical! Nothing is ever straight forward with me and my fertility/health. Dr S wants me on hydroxychloroquine and pred 25mg, which means I will have to be shielding for my next IVF. I also will have to be on hydroxychloroquine for a month before IVF and will have to have intralipids before embryo transfer. Don't think my work will appreciate this..but what can I do??

HoldingOn2Hope - so sorry you had such a horrible few days. I know the feeling of utter panic really well :( I will pray the spotting is just a spotting and will go away!

Countrygirl220 - seen you guys were chatting about PGS the other day. My first FET with PGS tested embryo resulted in miscarriage. But then again, I didn't know I had this immune issue! PGS does not eliminate the risk of chromosomal abnormalities completely. That is because the embryologists take the sample just off the trophectoderm and not from the inner mass (which is the baby). You can still have mosaicism in the embryo and not know about it. Equally, even after an embryo is found to have a chromosomal abnormality, some embryos correct themselves after some time, so you can be getting rid of essentially normal embryos. We rushed into it and had PGS done... I was desperate, so didn't do my normal research before taking the plunge. The cost ended up being just under 3k for 8 embryos. I don't think I'd do it now.

Thinking of you @HoldingOn2Hope. Has it subsided now? Nothing is TMI in this group xx

That was a lot for you to take in @Jorun but at least you have some answers now. When is your IVF cycle? I found what you said about PGS really interesting. I’ve always just assumed we would do it if we go down that road but I’ve never researched it properly.

@hrtbrk2 the only risk they mentioned to me re.SO was that multiple pregnancies are higher. I think Dr S is more likely to start you on a low dose and increase it if necessary than start you on a high dose. So I wouldn’t worry about being over stimulated. Hope you’re getting on ok with the Letrozole. X

@Crystal2020 it has kind of but I'm fearing the worst. Ended up at the dreaded epau as called clinic and DR S advised straight to epau. Was a waste of time as the sonographers had gone home for the day, I mean what the point in emergency departments? They did general obs and checked cervix which is closed and yes that's always a positive but all my mc's have been missed mc's where my cervix has always been closed so it didn't reassure me at all. The nurse said I could sit and see the registrar but could be waiting hours or go home so I decided to come home. Have to go back in the morning for a scan. I'm just done with it right now.

@Jorun although it's not the best news, I'm glad you've got some answers and Dr S will put a plan in place for you. My Nk cells weren't elevated but became aggressive in state of pregnancy. Will you be putting you on his Super ovulation plan?

@hrtbrk2 as @Crystal2020 said the only risk is multiple pregnancies but no side effects really. I didn't have any I don't think. I think it's the pred that gives you the side effects. Oh if the meds work you can sometimes feel ovulation, I definitely did with clomid and gonal-f hut not with letrezole as it's didn't work for me. Keeping everything crossed for you for this cycle xx

I woke up feeling positive today. And then Bang! The bleeding starts! Like you take a step forward and 10 back. I wish I could take some sleeping pills to get a good nights sleep. Hope tomorrow brings hope as better news xx

@HoldingOn2Hope I had a bleed around 6 weeks in my pregnancy, I stood up and there was a rush of blood, enough to soak through my underwear and jeans. I was convinced that was it and even emailed the nurses at the clinic asking how to wean off the pred. And yet at the scan a few days later all was well, just a bleed site near the pregnancy. Mr S told me bleeding in pregnancy doesn't do any harm itself, the risk is that the uterus contracts to push out the blood and pushes out the pregnancy by mistake too. He prescribed nifedipine for it, maybe that is something you could ask him about? Fingers crossed for your scan later 🤞

Oh god, just realised my message is probably not the words of comfort I intended it to be! 🤭 I was meaning I'm sure spotting is no harm to the pregnancy but perhaps there is something Mr S can prescribe to help stop it because of the worry it causes. Still not sure I am explaining myself well 🤐

@Chickjen I have my scan this morning in a few hours so if all is well I can speak to clinic about prescribing. He told me to stop aspirin a few weeks ago which I did and double up cyclogest. Fridays scan did show a small bleed near the pregnancy.
I just don't know what's going on as I have a possible heterotopic pregnancy, that was worrying me all weekend and then the bleed yday.
Thank you for your advice xxx

@HoldingOn2Hope thinking of you today. Keeping everything crossed that the bleed was the ectopic 'resolving' itself. I don't know how else to put it.

Sending love and hope xx

@HoldingOn2Hope oh the spotting is just torture, as the others have said though it could be the little bleed or the ectopic resolving and the fact that it's subsiding a bit I think is a good sign, thinking of you today, got all my fingers crossed

@Jorun wow that is a lot for you to take in but now you have all the information and a plan of attack which I think is infinitely more comforting than the 'just try again' advice. Also thanks for your info. re. the PGS we will definitely look into it more if we need to go that route.

Hope everyone else is ok x