Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable 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

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

@Everhopeful35 omg yes!!!!!! You did superovulation so sounds like you had a twin but lost it just like me. I also don’t have twins in my family etc. and the chance on letrozole is around 3.5%, so small but not impossible. Maybe you still released another egg between the time of the scan and the trigger as the follicles still grow at least 1mm a day in that time, and then get a further boost at the time of trigger? Or maybe it was a small follicle that wasn’t really viable? Or perhaps an egg that split?

But look either way this is the BEST news today!!! I’m so incredibly happy for you. I know you will feel the loss of the twin and I’m really sorry but so far you have a healthy baby and that is what you wanted going into this so try to focus on that.

I think maybe you will have the uncertainty of bleeding in this pregnancy like me but try to remain calm. I went to the EPU today as my bleeding got worse and I passed more clots, but all is well. They said they think it’s related to the lost twin and definitely not a hematoma which seems to have gone - the sac and fetal pole is still there but they say it’s related bleeding now (effectively like a miscarriage) and I just need to be prepared for more. They said only if it gets worse or very painful to go back again.

So maybe you can take some comfort from that - you may have some bleeding and it’s hugely disconcerting but it sounds like it is at least “normal” and you are not alone.

So happy for you xxxx

@NICK7nick7 more brilliant news!! Ideally have it within 4 days but max 7 days of the positive test. Did you email the nurses as well as the office? They are usually more responsive I find x

@Rebecca9876 yes I emailed them at 7.30am this morning, can you tell I was anxious?!! I’ve just called again as was worried they would close at 5pm, and they’ve said someone will respond to my email tonight.

@Everhopeful35 wow that's dramatic! I'm so glad it still seems intact. I guess the egg could have divided? Rest up and demand room service from dh!
I'm writing this from the clinic while having my first intralipids.. Was wondering if anyone else from the thread was here! Mr S said my lining looked good although still have a very small area of tissue /unknown so we are going to try this month, and if no success will have a hysteroscopy x

@NICK7nick7 That's fantastic news! So happy you got your BFP. I always find the nurses much more responsive on email too, so hopefully someone will get back to you tonight. I know they technically close at 5pm, but I've had emails from the nurses at gone 7.

@Rebecca9876 Thanks so much for your lovely message. I'm trying to think positively, but don't want to get my hopes up and have them crushed next week. It's such a rollercoaster, isn't it? We decided to give Dr S our pregnancy tissue from the twin and get it tested, which was not an insignificant £400, but we just wanted peace of mind that it definitely was a second sac. It's so weird how our journeys are so similar. Your right: perhaps the SO meant another egg was released and fertilised, but it was too small to properly implant. I think I'm in a slightly different place mentally to you about the twin loss - I never knew it was there abc thought I had no baby at all when I walked in there, so coming out with one still going strong is a bonus. The irregular sac shape worries me and I'm terrified there will be more bleeding, but there's not much we can do but wait it out.

@Rebecca9876 I also meant to say, I'm very sorry to hear you had more bleeding and had to have another scan. But at least a further scan gives peace of mind that your baby is still going strong! Keep resting up and looking after yourself xx

Hi everyone. I posted here a few weeks ago unsure about whether or not to see Dr S after three late miscarriages. Had some great advice and reassurance so thank you all. I fell behind with the thread so sorry for disappearing!

So in had my first appointment this week. A 5 hour drive each way to see him but it was worth it to have a doctor actually take my losses seriously. He suspects I may have chronic histiocytic intervillositis which causes placenta problems. I’ll get my blood results back in January so I’m really anxious to see what they say and what my potential treatment plan will be. We’re also going to to the sperm dna test, although all our babies have been genetically normal and lost between 12 and 20 weeks, so I don’t know if it’s really necessary but may as well cover all bases. (And spend all our savings while we’re at it!)

A question for those of you who are being treated for immune issues - what kind of lifestyle changes have you made? Have you cut out alcohol, caffeine and processed food completely? I’ve been reading ‘is your body baby friendly’ and it talks about how all these things can cause immune flare ups. I’m wondering if I need to be 100%, or if it’s ok to have the occasional cup of tea or glass of wine!? I really only have one more shot at this so I’m very paranoid about doing anything wrong.

Yay @NICK7nick7 I have everything 🤞🤞🤞

@Everhopeful35 glad the news was positive v what you thought yesterday. I hope the bleeding eases and gives you some relief x

@Tinpo I have a few glasses of wine / drinks a week maybe 3 to 4, not too many and I drink decaf coffee, 2 a day. For me they are two things I love SO much and I feel I have already had the worst year and a half and need some normality/ comforts. Personally I also dont believe it makes a huge difference if you take them things in moderation. I have friends who have immune issues (coeliac etc) and had no problems with their pregnancies and drank coffee and even an odd glass of wine throughout and had no issues....

Oh my goodness @Everhopeful35, such good news that the pregnancy is progressing. I'm glad you had another scan today. I'm sorry if it is that you've lost a twin but I'm keeping everything crossed for you ❤️ what a roller-coaster.

Amazing news @NICK7NICK7 💕 congratulations.

I'm sorry you're still bleeding lots @Rebecca9876 glad you've been checked out though.

I have been at the clinic today for my ovulation intralipids, they had to put it in my hand as my veins weren't playing ball today. I still feel a bit rough, didn't really notice anything after the first lot.
I had my cd2 bloods back and it all looks normal, so feeling a bit reassured by that and that we still have a chance on our own without ivf.

I also chased the hospital as we haven't had our genetic report back so they chased the lab and they just called me. As expected our baby was perfect and was a little boy 💔💙 had a good cry. Feels more real knowing I could still be pregnant with our baby boy. X

Thanks @Everhopeful35! I should have said - I also had an irregular shape early on after we lost the twin (it was all over the place) but the sac has settled now and is a much more normal shape. Dr S didn’t mention pressure being put on it to me to be fair so that may be unrelated but mentioning just in case it’s of comfort. Honestly our experiences are so similar it’s uncanny! I have everything crossed for you on this rollercoaster journey xx

@Tinpo I’m with @LookingforAnswers86 - everything in moderation before you fall pregnant (and also afterwards although I don’t have alcohol or caffeine myself - plus you never know what baby might end up craving; mine loves salt and orange flavour ice lollies which are really not the healthiest things..!).

I really think it’s important to still enjoy your life and feel relaxed so if the odd glass of wine etc helps then do it - I believe you’re more likely to be in the right place to then conceive if you’re happy and relaxed rather than pushing yourself to be ultra healthy and perfect, which is stressful. Especially at Christmas time! x

Oh @VenusStarr :( That is so so sad. I am really hoping it will be your month this time or very soon xx

Absolutely brilliant news@NICK7nick7 and @Rebecca9876 ! So pleased for you both.

I had some pink spotting start last night - a week or so earlier than it usually does. So I've got blood tests this week to see if HCG is doubling... not holding out much hope.

@VenusStarr that's heartbreaking 💔 thinking of you x

Thank you @LookingforAnswers86 and @Rebecca9876 - I think you’re right that moderation is best. I think I’m just putting too much pressure on myself because I know this is the last chance. Fully intending on having a boozy Christmas - we’re not going to start TTC until late January earliest so I’ll cut down after Christmas but will try to not torture myself with guilt if I fancy the occasional drink!

@VenusStarr Im so sorry. I’ve been in the same position - finding out the gender after a loss and it suddenly just makes it so much more real. It makes the loss feel almost brand new because now you know who you are mourning. Sending love.

@Everhopeful35 I’m so glad you had good news today. As the others have said rest up as much as you can and keep those 🤞🏻

@NICK7nick7 congratulations!! My test day is Wednesday but already itching to get at the box of tests 😩

@Tinpo So glad you had a good appointment! Mr S thinks I also have CHI. I’ve had 5 losses in total, 2 at 15 weeks. I was put straight on hydroxy. My bloods came back fairly normal but I have high activation NK cells so also have intralipids from PPT. I hope your bloods appointment next month goes well.

@VenusStarr Knowing the sex definitely brings back the raw emotion of when they tell you there is no heartbeat. Be kind to yourself over the next few days, sending lots of love. Hopefully a bit of Christmas magic will get you a BFP this month 🤞🏻

@VenusStarr so sorry, it is really hard knowing the gender.

Thank you all. For those that are pregnant and on steroids, did you have to isolate?

@NICK7nick7 yes although not isolate in the Covid positive sense of not leaving the house at all. We discussed our risk areas with Dr S and agreed on the plan, but obviously understanding the risks involved.

In practice we’ve been very careful - haven’t met with friends/family, I’ve only left the house for walks since Sept (fun), deliveries not food shopping in person etc. But I’m on the full whack of 25mg so you might feel able to be less stringent if on a lower dose (some have said in the past they were on lower doses during Covid) x

@NICK7nick7 oh and I’ve had many many visits to A&E/the clinic/EPU of course...! Today I felt more unsafe in a certain hospital near me than at any other time - people not bothering with masks at all or not wearing them on their nose (as bad), no distancing etc etc. I was so jumpy - it’s not nice when you know you’re in an at risk category and also know many others don’t really care much....

Thankfully am weaning off now - it’s been v stressful but I also know we wouldn’t be where we are now without steroids (other drugs alone just weren’t enough for my highly active NK cells). Good luck! X

@Rebecca9876 thank you, thats really helpful. I’m on 25mg so think we will need to be really careful too. I’m booked in for intralipids on Weds so will discuss with them then too.

Hi all,

I saw DR S last week and have my follow up appt on Thursday.

I've had 4 losses since January. The first at 10.5 weeks and they others all before 6 weeks. I also have a two year old. My first and only successful pregnancy.

My husband is a teacher and so your last point around shielding just made me wonder whether Mr S would give us pred given his level of exposure?

Any experiences would be great.

I'd also be really interested in super ovulation because I have zero patience I can see a few of you have done this. What are you're thoughts?

I'm sorry that you're all here and I have everything crossed for all of you

J

@rainwillmaketheflowersgrow hello and sorry you’re here.

It’s like you have described me... I also have a two year old (no issues with that pregnancy) then my first loss in February this year also at 10.5 weeks, then more losses at fewer and fewer weeks (plus recently a twin lost at 8 weeks which we assume was chromosomal).

Anyway, given the similarity maybe I can give you some hope - I’m now 13.5 weeks with the surviving baby and although it’s a complicated pregnancy it’s going ok so far on Dr S’ treatment plan.

I don’t know what Dr S would say about your husband being a teacher (my husband and I both wfh) - maybe someone else will have an idea but you can also ask him about it for views.

I did superovulation for this pregnancy (based on my age and previous results showing low ovarian reserve - although like you I have never had problems getting pregnant, just keeping them this year...) - if you scroll back you’ll see I posted info on the thread a few times in response to questions so hopefully that’s useful. Others here have also done it recently or are considering it and may of course have thoughts too.

Good luck, you’re under really good care now x

@Rebecca9876 thanks so much for your response. I'm so sorry for your losses. I just didn't expect any issues after my first it's really changed me. I don't have much faith in anything anymore! Mr S is my last hope.

I'm so glad you are pregnant now and all seems to be going well. Although it sounds like it's been a rough ride for you. I just don't know how we all keeping going through such awful trauma!

I don't want to not be able to take pred if it's the right treatment just because of hubby's job! But I guess he will guide us!

Thanks again x

@Rebecca9876 I'm so glad to hear everything is progressing well with your little bundle that's fantastic news.
@NICK7nick7 congratulations on you BFP that's lovely news I hope the nurses got back in touch to book the intralipids I'm on my way to have my 1st lot today.
@VenusStarr that's heartbreaking I'm so sorry your going through this. You've got the best consultant and I've got everything crossed for this month for you sending you lots of hugs

Thank you everyone 💙

@LaurenAB94 I hope your intralipids go well today 🤞 for this cycle.

@rainwillmaketheflowersgrow good luck for your results appointment this week. It was honestly such a relief to know there was something wrong and we can follow a plan.

Thank you @Rebecca9876 for saying this "you’re under really good care now" I need to remind myself of this xx