Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

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 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.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

I was prescribed pred by my regular gynaecologist to take if I got a BFP, but it was on a "might help" basis rather than because I'd been diagnosed with anything.

She prescribed me 60mg a day which I thought was insane. So I took 20mg a day for about three days until it was clear that the last pregnancy was going to be a miscarriage as well and then I stopped.

This new guy says not to take any meds before the biopsy, and in any case they would only prescribe 10mg.

My husband says he'd rather sit this cycle out and wait for the biopsy rather than risk another miscarriage, especially as he's been prescribed some new vitamins to help improve his sperm quality and he thinks it would be pointless to try again before they've had a chance to have an effect. But I don't think his sperm is likely to be the problem.

He's having a repeat sperm analysis done on Saturday to check for DNA fragmentation, which wasn't done last time, so hopefully we should get some answers there.

I think from my point of view I'd assumed that we wouldn't be able to try again until August even if we could have done the biopsy this cycle, because you have to wait about three weeks to get the results, and then they like you to be on any new medication protocol for 30 days before trying again, so if we can't do the biopsy this cycle it would mean waiting until September before we try again. So it is very tempting when my doctor says we can try again this cycle with just the Ovidrel, because there's a part of my brain going, "but what if that works and I could have a baby in February!" if that makes sense.

Sorry for the multiple posts, my thoughts are all over the place.

@KtAgs that's brilliant news that they've prescribed you the Hydroxy, it always feels a bit better when you can start moving forward.

@VenusStarr I'm sorry to hear about your shingles hope it's not too uncomfortable...have you been taking the pred as well? Good luck for your test day!

@peperethecat I wonder if it is worth asking your autoimmune guy this afternoon what he thinks? But I think I'm inclined to agree with the others, get all of the information and then you can make a totally informed decision rather than rolling the dice which might be more stressful for you. Although I totally appreciate how annoying it is to have to wait... this whole journey is just endless waiting!

A little update from me, I have just got back from the hospital where I had a scan, there was a baby and heartbeat measuring 7w5d - a day ahead of what I thought. It is the furthest I have ever got. I know it doesn't mean that I'm out of the woods by any stretch, but for today it has given me a bit of hope. Thanks for all your advice over the last few weeks and being there, this group has certainly made the anxious waiting a bit more bearable.

Hope everyone is well and staying safe x

Brilliant news @countrygirl220! What a milestone to reach. I really hope it continues that way ❤ xx

Really happy to see your update @Countrygirl220 - that is such great news. Delighted for you xx

@Countrygirl220 That's fantastic news about your scan. I really hope this is it for you.

So I spoke to the auto-immune doctor this afternoon and I've got a lot of information to work through.

He said that in cases of unexplained recurrent miscarriage like mine, where nothing has come up in any of the normal blood tests, there are three potential causes to look at.

The first cause is a high number of abormal eggs, which is very likely in women over 40 and very unlikely in women under 30, but as I'm 34 I'm in that grey area where it could go either way. He said the good news is that at my age I almost certainly still have some good eggs left and if it's that and we keep trying eventually we will catch one. The bad news is that there's no treatment for it other than PGS testing, which we would have to go abroad for because it's illegal here.

The second cause is a high degree of incompatibility between the mother and father's DNA, apparently there are tests for this but again we'd have to go abroad and the science isn't very advanced yet and treatment options are limited.

The third cause is auto-immune issues and there are various different meds we can try and ongoing medical trials. He said he doesn't think that the lab that analyses the endometrial biopsy tissue will be back up and running until September, so it looks like the recommendation will be to start trying again straight away and do Ovidrel and intralipids this time. But that's TBC - I'm seeing the gynaecologist again on Monday for an ultrasound so we'll discuss it then.

He also wants to know exactly how thin my endometrium is because if it's like 3-4mm thin then he would recommend taking the tocoopherol and pentoxifylline but warned that it can take 6 months to get the desired results, whereas if it's like 6-7mm thin then that's probably not the cause of my miscarriages. I'm currently taking the tocopherol because why not, it's only vitamin E, but not the pentoxifylline, so I'll need to discuss that with the gynaecologist on Monday.

He was quite blunt with me and talked about women who have six or seven miscarriages or more and how it's just a case of trial and error and you have to only change one thing per pregnancy otherwise you'll never know what eventually worked, and if all else fails or you have several D&Cs and the embryos are all abnormal then you find 10000 euro go and do IVF with PGS testing in Spain.

Yikes. I mean, I guess I wasn't expecting him to say, yes, here's a magic pill and next time you will definitely have a healthy baby, so in a way it's good that he didn't sugar coat it, but he was very direct about it all.

So I guess we are trying Ovidrel and intralipids. And probably no pred for now.

@Countrygirl220 that's great news, keeping fingers crossed for you. X

@peperethecat wow that's a lot of info but probably better to have it that's not, glad you've got a plan.

@KtAgs glad to hear you've been prescribed the hydroxy, how come they won't prescribe steroids? Were you meant to have them?

@FrannyAnny82 how are you? Been thinking of you, hope you're managing ok and enjoying that soft cheese and wine?

I got the genetics results back today and it was trisomy 22. Not sure how I feel, partly relieved as no meds would have saved it. But also worried, now I have rubbish egg quality thrown in as well as clotting factors immune etc.. but suppose to be expected at my age. So basically I now know I'm losing both normal and abnormal embryos. Not really sure what's next. Am speaking to Dr S on Monday so will see what he says.

No steroids prescribed because of Covid. But hopefully they will prescribe in a month or so. @Eeviee I don't know how old you are but our 2nd loss was a trisomy 22 and my husband and I were 33. We've been 'lucky' in that all our losses have been tested and my two early losses have had chromsomal issues, but our late loss did not have any chromosomal problems. I dont know if thats any comfort but know you're not alone in those types of losses. And it took me a while to get used to the idea of that type of loss as well so be gentle with yourself. Xx

@KtAgs ah ok, but good that you can start the hydroxy as that needs to be in your system for 6-8 weeks right? And hopefully by then they'll prescribe steroids? Glad you've got that started anyway.
Thanks for sharing that, I'm now 39. But from I glean these trisomies happen for all ages. It just makes me worry that maybe all my losses are due to chromosomal abnormalities and I should be doing ivf with Pgs instead. Saying that my loss before this one showed chromosomally normal, but was female so then I worry they got it wrong and accidentally got my dna. Sorry, am rambling now...

Not at all! I worry the same. I miscarried our last at home with something to collect it in and we had a triploidy and i worried it's because my husband and I contaminated the sample somehow. I was convinced it was a chromsomally normal baby. A lot runs through your head doesn't it? I find it maddening and that I get slightly obsessive about it. 'Down the rabbit hole' I call it - googling like mad, reading complicated papers - you name it, I'm doing it! If we have a 3rd chromosomal miscarriage in a row (we've had two) then we might need to think about PGS but for now, I'll just cling on to hope it all falls into place. X

@KtAgs That's not possible. Both you and your husband will have chromosomally normal DNA. The only place that triploid DNA could have come from is your baby. Also, I'm sure you know this already, but triploidy is caused by the embryo having three sets of chromosomes rather than two. That means in most cases that one egg was fertilised by two sperm, or, more rarely, that the egg had two sets of chromosomes. The ones that result in early rather than late miscarriage are generally the ones where there were two sperm, which means that what happened to you may well have just been horrible bad luck. I don't know if that helps at all.

@Countrygirl220 I'm so pleased for you! And this has given me hope. After a long discussion we have decided to take the dreaded pred (even I find the whole ttc on steroids incredibly stressful - this will be month 5 after breaking from freb for ivf +PGS abroad) but at a lower dose and completely self isolate. Did you end up going for intralipids in the end?

Oh I know its not actually possible @peperethecat. The sentiment I meant was that like @Eeviee was saying, you worry about all sorts of things and sometimes I conjure things up in my head that involves a bit of magical thinking. Did anyone read that article in the guardian this week? The author talks about some magical thinking about her pregnancies after having procedures for their miscarriage. www.theguardian.com/lifeandstyle/2020/may/05/my-four-miscarriages-why-is-losing-a-pregnancy-so-shrouded-in-mystery?

I totally related to that! Mr S is mentioned in it too. I really like the writer too. She has a great blog.

Great you have committed to a plan @Ultra26. Fingers crossed for you.

Take care ladies Xx

@Countrygirl220 massive congratulations! So pleased for you!

@KtAgs yes I read that - agree it’s really good. I noticed she referred to Mr S and then later said that the people she spoke to didn’t give credence to steroids etc except for 1, it didn’t specify it was him (I assume!). I’ll check out her blog.

I’m reluctant to say this here because I know I should be feeling over the moon, but I’ve been really struggling with my anxiety and mental health generally. I keep googling all my scan results and measurements and the accuracy of the various tests etc and convincing myself there are numerous things wrong. I think it might be the stress of lockdown getting to me and wish I could just shut out all these negative thoughts.

@harrietm87 It's called the uterus monologues.

Oh I'm sorry you're feeling like that Harriet but its completely understandable. Please don't be reluctant to talk about that here. Pregnancy after loss is so, so hard. Covid is only going to amplify that. Obviously, I would like to be pregnant but I know how stressful I find it and in some ways I find it easier being in the position of hope and possibilities like I am now. When I think back to my 2nd and 3rd pregnancies I was very much the same with regards to googling scan measurements. You've also had a really difficult time with the bleed and the waiting. All you want is your baby to do be safe so I wonder what difference it makes if you view your googling and worry as being a way of being a super mum taking care of your pregnancy? I also don't think you 'should' feel anything. You can both be super grateful and worried as hell.

Its super hard. You're doing a great job being pregnant, especially talking about it. xx

Yes @KtAgs I didn't mean to imply that you don't know what causes triploidy, I'm sure you've done as much obsessive Googling as the rest of us.

And I get what you mean. In my last pregnancy when I had an HCG level of 6 on 14 DPO and then five days of heavy bleeding which I thought was my period, and then 10 days later I discovered I was still pregnant and my HCG was 383 and then rose to 600 two days later, I knew that those numbers meant it had no chance of being a viable pregnancy, but I still couldn't stop myself from hoping for a miracle. I think our minds torture us, and having all this knowledge makes it worse in a way because we know that what we're thinking is impossible but we still can't stop ourselves from thinking it.

My friend sent me that article and I posted it in one of the other threads on here. There was so much in it that resonated with me. Like the fact that pregnant women are told not to drink alcohol or caffeine or eat undercooked meat or soft cheese and yet when you miscarry no one ever asks you about what you ate or drank. They might ask you if you smoke, but that's about it.

And the fact that scientists have figured out how to put a man on the moon and developed super high tech facials to treat minor skin imperfections and yet most of the time no one has a fucking clue how to treat miscarriage. In France there's a website everyone uses to find doctors and book appointments. There must be hundreds of gynaecologists in Paris and hundreds of thousands of women of childbearing age, and yet only three gynaecologists make any reference to miscarriage on their profile page. Researching and treating it just doesn't seem to be a priority.

Don't worry @peperethecat I didn't take it that way 😊

Yeah - I loved that bit about all the scientific progression we have had but not with miscarriages. It's a joke really how low down it is on the agenda isn't it? When I was in my last block of counselling, part of my upset and frustration was often borne out of this.

I wonder with the developments with Sperm DNA fragmentation ie a male factor issue, that this might have a knock on effect with research. The urologist Mr Gordon said they are considering doing some research in that area with the clinic which could be really interesting.

Xx

@VenusStarr sorry about the shingles! So painful, I've had it too!

@Countrygirl220 congrats! That's amazing!!!

@FrannyAnny82 been thinking of you! It will take time my lovely, but it will get better. When I was having my medicated miscarriage, I have spent all night on my own on the ward, in excruciating pain waiting to "pass" what would have been my baby in October. I spent all night and then weeks after, crying, thinking it will not get better, but it did. Well..it got easier. Now I'm even able to talk about it without welling up, and I am sure all the pain you must be feeling right now will dull down. My thoughts are with you!

@Eeviee I have a consultation with Dr S on Monday as well! How how I struggled getting my clinic to send over the information so he could see it before hand!

@KtAgs I didn't have my embryo tested, because it was "only" my third miscarriage, and apparently, my hospital will only start testing on the fourth! Yippeedoo.

So I have a consultation with Dr S on Monday. Feeling very apprehensive. And a bit scared. Partly because my husband will divorce me when he finds out how much we will have to spend on the tests :D
I need to write a list of questions to ask, did any of you have that? Or is it mostly Dr S led?

Thank you so much for sharing that article @KtAgs. I hadn’t seen it and it really resonates. I started counselling pre lockdown & he mentioned that I had been doing lots of ‘magical thinking’ e.g. if I don’t go to the toilet, I won’t see blood and that means I’m still pregnant etc etc. I also find it so frustrating how low down the agenda miscarriage is & I know for a fact that it wouldn’t be the case if men were the ones carrying babies...

@Jorun I’m pleased for you that you have your appointment coming up. I was also really nervous beforehand but afterwards both my husband and I felt reassured that we had done the right thing by seeing Dr S. I wrote a list of questions and I was really glad that I did as I definitely would have forgotten them otherwise!

Thanks @KtAgs . My friend actually sent me a link to that article, it really resonated and I actually sent it to some friends- sometimes it's helps for people to understand what we're going through and she explains it well.

@Countrygirl220 how are you getting on?

@Jorun I hope your appointment goes well on Monday, I'd write questions down as he goes fast and you'll forget what you want to ask.

How long have people found it for cycle to return after a d&c? And have you found anyway of helping this along?
After my Natural miscarriages my cycle returned exactly 4 weeks later. After my last d&c it took about 3 months. I'm always a hit anxious until I know where I am in my
cycle...

X

Thanks everyone for your messages, just need to breathe and try and get through to the next appointment in 3 weeks.

@Eeviee hope you are ok, results always feel a bit strange. I remember Dr S saying to us what does it really change because if it's chromosomal then you just have to keep trying and you'll get there and if it's not then you're in the right place to get the treatment, so keep trying and you'll get there. I hope your appointment goes well on Monday and you get a plan. For what it's worth it made me feel a bit better to at least investigate the PGS testing so we know what's involved if we need to go that route.

@Ultra26 I didn't actually do the intralipids in the end, I basically took the pred and cyclogest from ovulation, then stopped it at BFP (really hoping that doesn't come back to bite me!) but continued with the cyclogest and then restarted the pred maybe 8 days later. I was/am worried about leaving the house, I properly masked up at the hospital yesterday and had palpitations as we passed the Coronavirus testing pod but I'm keeping all of my fingers crossed we haven't picked it up.

@HarrietM87 I totally share your anxiety, it's so hard but I think Ktags is right talking is the best therapy. I think you can only take things day by day and try not to beat yourself up for being scared about every little detail (btw I need to take my own advice here). The waiting is just total agony. I'm literally holding my breath every time I go to the loo, (which is a lot because of the steroids). How far along are you now? What is your next milestone? Have you weaned off the pred yet?

Hi to everyone else and good luck for your appointments / upcoming testing days!x

@Eeviee I think our messages crossed. I've had two D&Cs and the first one it wasn't even 3 weeks before my next period and the second one it was just less than 4 weeks. This is based on absolutely nothing but I always wondered whether it had anything to do with how long you bled for after the D&C and how much lining was removed during the op. With both of mine it was extremely light bleeding after the ops which had pretty much disappeared within a week so I wondered if it was related at all x

@Eeviee it was 5.5 weeks after my medical management and 3.5 after my D&C before my period came. I was still getting positive tests just under 9 weeks after the miscarriage though. Bonkers. And it's horrible waiting for it all to go back to 'normal'. Have you done any tests? Xx

@Countrygirl220 glad that you're doing ok, hang in there and hopefully the next 3 weeks flyby. Thanks, that seems pretty quick. And you've conceived this time quite quickly after your last loss didn't you? I don't think I bled at all after this d&c but then I'd already taken 2 doses of the misopritol and passed quite a lot already. Interesting what Dr S said, that's probably what he'll say to me on Monday. I just need my OH to hear that bit about not giving up.

@KtAgs thanks, well the doctor tested me last Sunday when I had to go into the local hospital for my weird abdominal pains and it was negative. I just want to know that my body is still working I suppose....