Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

@sundance21 We had it done recently and result came back high. Went to consultation and he said could be due to a lot of factors. Awaiting more tests to understand if a hormone issue or infection is the cause. It's a hard knock as we need to hold off from trying for another 3 months to see if it goes down. Really depressing feeling being in limbo. Have you been for consultation?

@89Hope No, not yet. We literally got the result back an hour ago via email and then googled 🙈 I don't really understand what it means to be honest...

I spoke with the nhs recurrent miscarriage clinic and they will discharge me automatically next week because they said there's no point seeing me if I'm pregnant and they won't keep the referral open. Sigh! So if this pregnancy fails I will be right back at square one with a 9+ month wait for the referral. So this baby had better stick because I don't think we can afford a second attempt with Dr S!

Ok the plus side, crp called earlier to say my harmony test results are all clear, yay!

How is everyone? x

Hi everyone. I was on this thread earlier this year but took a break after my last loss. My (long!) backstory is:

One successful pregnancy. Then a 20 week MMC (genetically healthy baby, no reason found for loss), then a 12 week MMC - no reason found for that either. Then had nhs recurrent miscarriage testing and was told all was normal and I should just try taking aspirin next time. So I did that and ended up having another absolutely devastating 20 week loss (during lockdown so I was alone when I found out).

We then went to see Dr S who diagnosed me with high nk cells and a condition called CHI. I got pregnant the first month on his plan and all seemed to be going well, had perfect 8 and 10 week scans. Then at my nhs dating scan at 11 weeks the baby had passed away. And that’s when I left this thread thinking I wouldn’t ever be trying to get pregnant again.

So a week or two after my last loss we had a call to say they had discovered that it was a partial molar pregnancy. Nothing to do with my previous losses, and no treatment plan could have stopped it, just pure bad luck. So I then had to be monitored for a few months to ensure my hcg got to zero, because if it didn’t then I would have needed chemotherapy. As you can imagine it was very stressful and I still feel a lot of anger about how unlucky we’ve been.

Thankfully my hcg dropped quite quickly and we’ve been cleared to try again. I won’t be seeing Dr S this time but do have an almost identical treatment plan from st Mary’s in Manchester. I’m absolutely terrified but feel like I have to try one more time.

Sorry for such a long post! And hello to everyone who I’ve never spoken to before. I hope we can support each other through the rollercoaster of trying again. (And again, and again…)

Hi @Tinpo nice to have you in the thread. Sounds like you've been through an awful time, I'm so sorry for your losses. I totally know the anger of the pure bad luck, it's a hard thing to carry around. No-one knows how much effort it is to keep weathering the storm and maintaining hope, it sounds like you're doing a bloody good job so far. I really hope your journey going forwards will be a lot smoother. This thread helps x

Morning everyone ❤️

Good news @treesall on your harmony test. Keeping everything crossed that this will work out for you & you won't need the RMC 💕

@Tinpo welcome to the group. I'm so sorry about everything you've been through, it sounds horrific! Starting again is terrifying but it sounds like you're in good hands with st Mary's. Would you mind me asking how it differs to Dr S? I've recently had a loss under Dr S' plan after 8.6 weeks - we have a review at the end of September but I guess you kinda lose faith after things go wrong after paying so much money/having so much hope. Reach out any time xx

Been struggling a lot recently. Have been off work & every time I try to leave the house, I just end up in tears. Just feel so disconnected from everything & everyone and I feel a lot of friends have compassion fatigue as it's happened so many times. It's a very lonely experience & just miss my little bean so much. Sounds odd, but I could feel it (even though it was only a small bump) when it was here & just felt like a mummy from day one. Ugh...life can be tragic, eh?!

I wondered if anyone had a similar experience...I took an ovulation test last night just out of interest & it had the smiley face...it's only 2 weeks since my MVA so I can't be ovulating already...can I? Especially after having retained tissue...

Sending love to all x

Welcome back @Tinpo. I'm sorry you've had such a terrible terrible time. I can't imagine having two losses so late. You are a very strong and brave lady.

My last miscarriage was a partial molar as well. It's such a horrible blow after an already devastating loss. Hope you have a smooth and successful journey next time 🤞

Hey @Tumby when I had to have scans for my retained tissue, they told me it looked like I was ovulating so I guess your cycle keeps working even if you can't conceive. That's a good thing though, it means things are moving again So sorry to hear you're struggling so much, I totally know what you mean about compassion fatigue, it's hard being the person everyone feels sorry for and you do feel like you need to put on a brave face. Time is a healer though, eventually things will get easier and you will feel hopeful again. We're all on different parts of the rollercoaster, I'm so sorry you're on the downhill bit right now but you will come back up again xx

@Tumby sorry I missed your message earlier. I'm sorry to hear you're struggling, but be kind to yourself. You've been through such a lot.

I think it's very possible you can be ovulating so soon - have you already had a negative pregnancy test? Otherwise the ovulation test could be picking up the leftover pregnancy hormones. X

Sorry about your recent loss @Tumby. It is so disheartening having a loss on Dr S's plan when you feel like you've found the miracle cure. I can relate to feeling so disconnected too, and feeling like friends have run out of compassion.

My plan with St Mary's is pretty much the same as Dr S's but without intralipids, and they've prescribed me blood thinning injections, which Dr S refused to give me despite all research published on CHI, and the leading specialist in the condition stating that they are a necessary part of treatment. So that bothered me a lot, and I lost trust in him a little bit. I think he's very focused on early losses (and very very good at preventing them!), but maybe wasn't the right consultant for me with my particular issue.

@treesall sorry to hear you've had a molar too. Did it take you long to get the all clear to try again? I'm terrified of it happening again. I know it's rare, but I seem to defy all statistics!

@Tinpo I honestly felt like the world had ended when I got the molar letter! My local hospital never called to tell me, so the first I heard of it was a letter from Charing Cross which talked about testing and a leaflet about cancer & chemo and I was like WTF!! I'd never even heard of molar / partial molar pregnancy before so it was all a bit frightening.

I was very fortunate, in that my first molar tests from Charing Cross came back about 9 weeks after my MVA, and were blood 3 and urine 9 so already counted as negative. I just had to do a follow up one month later and then they discharged me. I then got pregnant on the next cycle.

Glad to hear you've found a supportive consultant. Are you trying again now? Everything crossed for you that it happens quickly xx

@treesall I was relieved at first when I found out it was molar, because it was the first time I had a definite reason for a loss, and it meant my treatment plan hadn't failed. But then when it sunk in just how unlucky we'd been I was so upset. We'd seen the baby wriggling about all the way up to ten weeks, so to find out that they never would have had any hope of surviving was just so sad.

That's amazing you got discharged and pregnant so quickly. How far along are you now? We've just started trying again but it didn't happen this month. Hopefully September will be our month. It would be nice to be pregnant again before the due date in October.

@Tinpo I can totally understand that. But I really hope that means next time will be smooth sailing for you. (I know how unlikely / impossible that seems).

I am 12+2 according to my scan. I can't really believe I've made it this far, but it still doesn't seem real, or like there's much of a chance we might actually have a baby. The midwives at the clinic just talk as it it's all guaranteed everything will be fine now but I just can't get into that mindset. It feels like such a long road ahead! They said today I have an anterior placenta so might not feel movement for a while. Booooo!

@Tinpo: Welcome to the group. I'm so sorry to hear what you have been through, it sounds horrendous.

@treesall: Oh I'm so happy to hear that things are progressing well. I can imagine how surreal everything must feel. Keeping my fingers crossed.

I have finally received the results of my recent blood test, and everything came back clear. Thrombophilia, Antiphospholipid Syndrome, ENA etc. One the one hand I'm so happy to hear that things are well, but on the other hand I still don't have an explanation, except for my Thyroid antibodies maybe.
I have now decided to book an appointment with Dr. Tozer. Let's see what she says.

Any advice in regards to the first appointment? Any particular questions to ask?

Thanks Xx

Hi everyone

I haven’t been around for a while. I started my IVF stims yesterday. I’m on the short protocol and the consultant has said I’ll be on steroids and clexane and possibly intralipids.

To be honest I’m all over the place and as we get closer to what would have been my due date I just keep bursting into tears.
I’m not talking to anyone about it because to be honest nobody really knows what to say, including DH. It’s his birthday today so I’m trying to put on a brave face but I’m hurt that I told him the other day how it’s affecting me and he hasn’t asked how I’m doing.

This just feels like an incredibly lovely journey.

I hope everyone is doing well xx

Bugger that should have said lonely not lovely! My phone is against me lol!

There’s nothing lovely about this.

My husband will be back any minute to shout at me to get ready!

Sorry for subject change but just wondered if someone could share what the cost of intralipids is with Dr S each time? I've been put on a plan that would mean I need to have them monthly if I conceive and trying to plan costs. Part of me wants to bury my head in the sand about the mounting costs 🙈

@89Hope they are £350. 😬.

All his prices /charges are published on the CRP website x

Hey everyone, sorry I dropped off the thread. I've been really struggling, think I need to see my GP and possibly start antidepressants. It's 2 years on Wednesday since I miscarried my second baby and I bled with number 4 on the same day last year, I'm dreading the anniversary. I also realised this morning that I haven't conceived naturally for a year now. Feeling very hopeless.

We decided not to ttc this cycle (cd1 today kicking my ass), its too stressful and I need some time off all the meds I think. I've got a nurse consultation next week to plan our FET, so hopefully my af will play ball and not be late like this month and we can transfer in October (which I worked out will likely be baby loss awareness week 💔) too many triggers, seems like every month there is an anniversary or reminder.

@Badlydrawngirly good to hear from you. Wishing you lots of love with your stims. I'm sorry to hear you're struggling too, it feels incredibly lonely, but you aren't alone ❤️ I've had physical pain in my chest trying to hold on to pretend I'm OK. I feel like as time goes on the grief gets harder to take. I'm on a waiting list for counselling with a maternal wellbeing service, which is weird as we still don't have a baby after 4 years, but I guess they're more specialist than generic mental health services.

Sorry, waffling. Hope everyone is doing OK as you can be xx

@VenusStarr it’s lovely to hear from you. I’m so sorry you’re struggling too. I came off the anti depressants but think I could do with going back on them. When I miscarried in feb I thought if I was pregnant by my die date in September that I’d be able to cope. I think you’re right, the grief gets harder as time goes on.

I think having a break is a good idea. I thought I’d taken a long enough break but now I’ve started I’m not so sure!

I’m trying to remain calm and positive to give this cycle the best chance but I’m so broken by it all that it’s pretty impossible. I feel like I’m going through the motions and will get to the point where I say, see IVF didn’t work either.

I wish I could pull myself out of this black hole. I get that physical pain in my chest too and I find that my mind is on fertility/loss all the time.

I’ve had 3 readings with psychics who have all told me I will have a successful pregnancy. Normally it gives me some comfort but right now I’m struggling to believe in anything!

Sorry for being so negative!

I hope everyone else is doing as well as they can
Xx

Hi everyone, not been on here for a while. I just wondered if anyone is having a nightmare calling the clinic in epsom? I can never get through, its ridiculous for how much we pay. I've done the superovulation cycle this month. I'm 12 days post trigger shot and getting positives but I'm worried its still the trigger. Today is the day the clinic told me to test. I've got a faint bit definite line on a frer and pregnant on a clearblue early detection digital. Arghhhh!!

I will catch up with everyone soon. I just needed to vent!

Xxx

@Rainbowdreams1983 congratulations on your BFP! That's great news. I find it a nightmare too, I always just email because I think the only ever have one receptionist on and she's always dealing with the people in the actual clinic. How are you feeling? Keep us updated!

@Badlydrawngirly sorry to hear you're (understandably) feeling like this. I just wanted to say that my husband would never ask how I was, even if I asked him he would never ask it back. He just didn't talk about it all if he could avoid it. I don't think it comes from a point of view of not caring, I think he just genuinely didn't know what to say, or how to help, because really there isn't anything anyone can 'do' to make it better. Obviously having his support is important, but I think the men just feel completely helpless because they have to watch this happen to us (and them, although let's be honest it's not the same for them) time and time again without being able to do anything to help x

Hi All,

I’ve not been on here for quite some time as I did actually get pregnant via IVF in May. I just wanted to share my story as I am really struggling today and I know there are many of you on here who will understand.

After becoming pregnant I developed HG the severe sickness and nausea condition. I can’t explain how bad an experience it is a lot worse than you can even imagine. I was on steroids at the start of my pregnancy due to high TPO, my TSH was in normal range for non pregnant person at at 3.7. My doctor saw no reason for me to stay on the steroids and the clinic agreed so I came off them. I was happy to go along with this at the time as I was told that as I had normal TSH I would be fine. I was also relived just to be putting one less chemical into my body that might be contributing to feeling so sick. I can’t remember exactly when I stopped because I was so unwell but I think it was about week 7-8.

By week 9 I was in hospital due to the HG and was repeatedly told that being this unwell was a sign baby was doing well. Unfortunately I bought into this although I have since found out this is simply not true and you are no less likely to miscarry than anyone else. I also had a scan at this point and all was looking good.

I found out at 13 week scan my baby had passed away around 10-11 weeks. I have since seen there is research suggesting that high TPO even if TSH is normal increases risk of miscarriage and now the guilt I feel for stopping the steroids is terrible. I researched pregnancy and TPO etc before the pregnancy but can’t believe how I could of missed this information. The hospital said the only testing they offered was check for molar pregnancy so now I will never know if it was my choice to go along with stopping the steroids that caused my baby to die. Why didn’t I research TPO and miscarriages? Why didn’t I insist on carrying on with the steroids when the risk of any harm to my baby on the dose I was on was so low? At least if I had carried on and still miscarried I would have known there was nothing I can do.

I can’t imagine being pregnant again and if the pregnancy sticks and I stay on steroids next time (which is what I’m planning to do) the regret will be even worse that I didn’t carry on this time but obviously I would never want to miscarry again either.

I had surgical management in the end as I didn’t want to face the trauma of seeing my baby and it now looks as though that hasn’t worked - I keep getting positive pregnancy tests and have to call the EPU tomorrow so this isn’t helping how I am feeling I know.

I’m not sure what I’m hoping for by posting this but I just felt I needed to share today. My heart goes out to everyone here who is experiencing or has experienced losses.

I am so sorry @InvisibleDreamer ❤️ this is completely heartbreaking. You aren't to blame, miscarriages are so cruel. Are you under a specialist like Dr Shehata as well, or just your ivf clinic? It sounds like it would be worth having a follow up and debrief about what happened. I hope that the testing gives you some clarity too.

I'm sorry you're still testing positive, hopefully the epu can give you some support tomorrow.

I'd recommend contacting a baby loss charity too, to see if they can offer you some counselling, just to talk through how you're feeling. Sending you lots of love tonight ❤️❤️