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

@NImama sort of. I booked an appointment privately with someone who listed 'miscarriage' on her list of specialists subjects. She was totally clueless and useless that I didn't see her again. Make sure you feel the person really gets it and don't hesitate to find someone else if you don't feel they do x

Thank you @Lozfish & I'm so sorry you had to experience this too. It's like hell on earth. I just wonder why Dr Jan said it all went well when there's still some left. I can't help but feel weird about stuff when there's money involved, although I'm sure it's just an anomaly. My mind is in a funny place at the moment. What is the hysteroscopy? Will it remove the tissue? They're really confused about my HCG levels too as they're still 11600 when they said they should be much lower. What a nightmare eh. I hope you're ok & feeling a little better after the BFN xxx

Hi everyone,

Went for our 3 month review on Wednesday. The plan is to reduce my thyroxine from 75mg to 50mg as the consultant (can't remember her name, she was lovely, Dr S on AL) who agreed my TSH was on the low side. Also currently on letrozole for the superovulation, back Wednesday for a scan to see if my follicles are responding and if so will be given the trigger shot for ovulation.

@treesall I'm so glad to hear your scan went well I do always wonder if anyone in the waiting room is on here 🙂

@ginandoreos I'm on the complex protocol. Which one are you in? I know what you mean about the appointments so I write myself a list of questions which helps 🙂

@tumby I am so very sorry for your most recent loss. It is absolutely heartbreaking. I know there is nothing I can do to make it any better. Be kind and gentle with yourself. I'm also sorry you have the rpoc. I had that with our first loss after a D&C. I hope things are resolved ASAP for you ❤

@lozfish I'm sorry you have no had a positive this cycle. We are on cycle 3 so I'm with you on how you feel. Always fallen quickly before. I have everything crossed for you for next month 🤞

@venusstarr I'm glad you have the go ahead to ttc again soon. Everything crossed for you 🙂

I hope everyone else is ok xxx

I'm sorry for the bfn @Lozfish ❤️ it's so hard. I find the emotional side really difficult. Thanks for understanding about the test results, I am taking it as a win in one way - no more invasive treatment and its narrowed down the cause of the chemical by ruling those things out.

@Tumby I am so sorry you have been in pain and have some tissue left. I had symptoms of retained tissue after my 4th loss (had medical management). My epu had already discharged me because my hpt were negative, so my GP prescribed antibiotics and within 3 days of stopping them, I had passed the tissue and started my period. It might be worth seeing if your GP will do similar? I know what you mean about paying so much money privately and being left with complications.
I need to get my head focused for transfer, my motivation is on the floor at the moment, just find myself just sitting staring into space and everything feels an effort.

@NImama I had 6 sessions of counselling via Petals the baby loss charity. I'd recommend seeing someone who understands baby and pregnancy loss - I've had some awful generic counselling via the nhs (she got me to describe my second miscarriage in detail and I've had flashbacks ever since). I'm out of the catchment area for Petals but I think covid helped as it's all via zoom at the moment, so maybe try them.

I hope you and your little one are doing well @Daffodil21 💙

I've got everything crossed for you @Rainbowdreams1983 for your superovulation 🤞 let us know how your scan goes next week.

I'm pretty sure I'm ovulating today, so unlikely to have a bfp this cycle as we only decided to try on Thursday! But we'll give it a shot. I'm hoping my intralipids that I did on my mock cycle will over us 🤞 I'm running low on my meds too, so need to do a big order next week.

Lots of love xx

@venusstarr thank you 🙂. Given us some hope we are trying something different this cycle. Wasn't as expensive as I thought so added bonus!

Fingers crossed for ttc this cycle 🤞. I read intralipids last at least 4 weeks. I would have thought if you've been having them regularly thats a good thing too as time to work on keeping the NK cells down 🙂. Hope you get your meds sorted

Xxx

@VenusStarr I know what you mean about wanting to find an issue so you can at least cure it… I’m in an odd place as have one healthy child of 3 years but have in the last 18 months had four miscarriages. The third one was the worst though as they saw a heartbeat at 6 weeks although I thought I was 8 was but went back for second scan and no heartbeat. I wanted to miscarry naturally as had before but I ended up waiting another 6 weeks when I haemorrhaged and ended up being rushed to A&E and apparently could have died. The recovery was long and painful not just emotionally this time but physically but at least I got referred to the recurrent miscarriage clinic. When I had my last miscarriage I had to go through it on my own because of Covid but I insisted upon a ERPC (I’m not sure that’s different to a MVA) but they were supposed to do the karotyping on me too. I again lost lots of blood and had long recovery but When I tried to get the results I was devastated to find out they had “lost” my baby! It has been like another loss all over again and I just feel worse as still don’t know if any other issues we should look at. Anyway the NHS are treating me now for NK cells with prednisone and we are going to try again soon but I’m scared… is anyone here under the Epsom/ St Helier RMC clinic? I want to consider IVF but I’ve been told not likely as we do have one child… does anyone know this to be true? Not sure how many times I feel my body can physically go through it when I’m at risk of haemorrhaging each time..

@Tumby I hope you are resting and being kind to yourself! I agree you must push your doctor for both physical and mental reasons!

@Annabell1 is the NK cell testing you are planning to do through a blood test or scraping cells of the womb? I am being treated for NK cells under NHS after showed up on blood test but when we saw a private specialist she said you can only tell from scraping inside which has left me feeling a bit like are we even doing right thing with all the NHS meds and steroids…?

@Lozfish I don’t know much about IVF from personal experience but I do know lots of people who it seems to succeed on their last attempt - seems nature’s cruel way.. so I’d say stick with it and try and be positive - my friend is now expecting twins from it!

Also I’m not sure who asked about counselling but I’ve found the miscarriage association to be of help and just in general talking about it and realising how many women go through it can help and even groups like this make me feel less alone…

@NImama I have been having counselling through Talking Therapies which is local to me and an NHS service. First guy was awful but I persevered and eventually they gave me someone good. My GP referred me.

@Tumby so I had an MVA on NHS and it was incomplete, Dr. Jan told me that with the ultrasound they can only be about 70% accurate! I found it incredibly frustrating when they told me it has a 95% success rate - yet again we fall into the bloody lowest odds. A hysteroscopy is where they go up with the camera whilst you're under general. The NHS would have done it but the wait was so long and I have private medical insurance with my job which covered my private treatments.

@Rainbowdreams1983 interesting you've always fallen easily before, sorry you've also got a BFN. I wonder whether the treatment somehow makes it take longer? Is that a good thing as our bodies are being more selective?

X

Morning everyone ☀️

The saga continues...the hospital wanted to admit me last night as my pains felt like I was going into labour. I was just laid on the floor screaming in pain at one point. All very dramatic! I had some oramorph & some bleeding though the night though & it seems to have settled a bit. They want to keep taking bloods to see if my HCG is dropping as they mentioned ectopic...I'm not even sure how that could be a thing?! They also said re the scan I had at CRP that it couldn't be conclusive from an NHS perspective that sent me into an absolute frenzy. I just think the 'system' is totally broken when it comes to miscarriage & the support behind it. It makes me incredibly angry.

Re counselling, I called Samaritan's as I was actually at a point of desperation and he said 'have you thought about lying in bed next time for 3 months then maybe you won't lose it' and 'are you worried that your age is a factor too...' Honestly, when I'm a bit more together emotionally, I'm inclined to complain as if you're not f*cking equipped to support someone through that then don't!

The miscarriage association should have support groups in your local area. We're going to an in person one on 7th September. I think they also have midwives trained in bereavement that you could speak to. Tommy's is also another good one. Also, if anyone on here ever wants to private message me & just rant or share their feelings, that's also totally fine. And nothing would freak me out. I've had some exceptionally strange thoughts throughout this whole process. I've also just started reading Matt Haig 'The Comfort Book' and it really is beautiful and resonates with me in times such as this.

Although the pain of our experiences unites us (sorry, sounded very cringe), I'm so sorry that we've all had to experience it. ❤️❤️❤️❤️

Hi @Tumby. Oh you poor poor thing. I cannot see how it can be ectopic if they could see it was in the right place, sometimes I swear they just throw stuff out there without even thinking. Don't worry about them saying it's not conclusive, my scan at CRP for my retained tissue was way more accurate than NHS. I have the same anger - I wrote some strongly worded feedback to my trust after my latest one, I was just furious at how crap it was. I feel like one of the lucky ones who can see a private specialist, I can't even imagine what it's like to go through it at the mercy of the NHS system.

Re: your Samaritans comment - I cannot even express how angry that makes me. You should 1000% complain. It's actually shocking that you called for support and someone suggested you stay in bed for three months and that you should be worried about your age. What an idiot.

Oh @Tumby I'm sorry. How are you this morning? The system is completely broken and I'm sorry you're stuck in the midst of it. I had a suspected heterotopic pregnancy with number 2 - where one is in your uterus and another is elsewhere, but I would have thought your scans would show this by now - I had a mass by my left ovary and they said they could see a 'ring of fire'. I hope you get some answers. Did you say you're back at crp soon for the karyotyping results?

I just sat open mouthed reading what the Samaritan's person said - ffs. I don't even have any words, I'm angry for you. What a prick. It's not the same but one of my friends is convinced that I need a stitch to keep the babies in 🙄 I know she means well, but it's so unhelpful. X

@Tumby oh my gosh, what an awful nightmare for you. How are you this morning?

I cannot believe that's what the Samaritans said to you. That's absolutely ridiculous. Im so cross for you.

Hey, so the pain settled but now it's completely horrific again & more heavy bleeding. Goodness me, when will this stop!! We just went on the open top tour bus in Bristol today, despite living here for over 13 years, just going round and around. We did laugh quite a bit at that, we've done so much crying.

@VenusStarr - oh the heterotopic sounds awful! Was it ok in the end? Yes, we have a zoom call on 30th September to get the results but a big part of me feels like giving up & just thinking of adopting. I really don't think I can go through this again. I know what you mean also re friends/family making things worse...my mum's instant response was 'oh, at least you keep getting pregnant'. Yeah, that's great mum, fantastic. And another friend said 'i don't know why you both keep putting yourself through this, knowing it will cause you anguish'. Hmm...fair to say they've taken a back seat on the friend bus!!

Hope everyone doing ok @treesall @myrainbowjourney @Lozfish @NImama (how you feeling?) And anyone else I've missed xxx

Hey @Tumby

Thank you for checking in. And I am so sorry to hear what you are going through. Life can be so unfair and horrid and I know there are no words to help right now.
Sorry also for the insensitive comments you've received. I find it unbelievable how people can let these words leave their mouths. I had to put my sister on the back seat after the first miscarriage as she just never had the right thing to say. I kept willing her to say something kind and supportive but it never came, so I decided I'd not speak to her about it. These things have to be done sometimes.

I'm glad you've managed to laugh today, it's so important to have some time away from the sadness. I hope your pain subsides quickly.

I had my follow up with Dr S, and a hyfosy last week. I have high NK cells and very high activity of the cells. Annoyingly my hyfosy showed my remaining tube was slow to release the foam. He said he can't be sure if something was in there that's been dislodged now, or if there's a blockage, so he advised we only try his treatment for 6 months before going down the ivf route.
I found it all very overwhelming but now I'm ready to jump in.
I'm away for work next week, right at day 10/11 when we would have tried super ovulation, so this cycle we will just try the other meds and see if we have any luck. Then we will go full hog with the super ovulation. I have long cycles and no patience so we definitely want to try it all if it's only 6 months.

Feeling both optimistic and terrified, but ready to get going now xxx

Thanks ladies for the counselling suggestions. Organising a GP referral at the moment. I don’t think I’ve done more than just plough on after each miscarriage and it’s possibly all just hitting me at once now! X

@Tumby argh I really feel for you that this is dragging on so long, it's hard enough to deal with without all this. I hope you are on the mend and the rest of the tissue passes ASAP. Have CRP been helpful?

I hope this is your cycle @myrainbowjourney!

For those of you who are later in your pregnancy or already have your babies, were you considered a complicated pregnancy as a result of the treatment?

I've finally plucked up the courage to register for my booking in appointment, and it will be with the home birth team (that's what I did before and would be my preference of this pregnancy progresses and is straight forward) but I notice the hospital website says birth centre / home birth is only considered for women whose pregnancies have been straightforward with no maternal medical conditions and no pregnancy complications. I don't think this treatment would count as a complication? Anyone know?

I've also had a letter through for my first nhs appointment for the miscarriage clinic (with one of Dr S' team). I don't know what to do about it. If I cancel it and this pregnancy fails presumably I'd have to be referred again which would take months. But if it does fail I'd like the option to be seen on the NHS! But will they speak to me if they know I'm seeing him privately and currently pregnant? Or will they strike me off the list? Ahhh confused!

@treesall I was exactly the same as you with the RMC - they called me to book my bloods while I was pregnant. When I told them I told them I was pregnant they said they couldn't do the blood tests. I asked them if I could still stay registered with them in case it didn't work out so I didn't get out back down the waiting list and they agreed.

My pregnancy was classed as 'consultant led' and my GP mentioned the words 'high risk' but did go on to say that there was nothing about that pregnancy that made it high risk, it was just because of my history. That was when I was discussing fit for work notes with him (had issues with my boss trying to put me in situations I wasn't comfortable with) so he noted on my work note that I was to wfh because of a 'high risk consultant led pregnancy' but I don't think it was ever on my actual notes that it was high risk if that makes sense. I had growth scans every 4 weeks from 20 weeks because of history so make sure you are on the NHS side of things too x

Thanks @Daffodil21 that's interesting to read. I guess I'll see what the midwife says on Thursday. Arghhhh it feels way too soon to be saying the word midwife or having any appointments or talking about any of this stuff. I feel like I'm jinxing everything and just making it harder for myself to deal with when it goes wrong :-(

Morning all,

@treesall I agree with @Daffodil21 - I'd just let them know that you want to still be on the list just in case. I'm sure they'll understand! I'm keeping everything crossed for you that it won't get to that point though ❤️

@Daffodil21 I'm so sorry - I didn't congratulate you on the birth of your baby. Massive, huge congrats to you & welcome to the world! Xx

@myrainbowjourney forgive my ignorance but what is a hyfosy? I hope that you have a positive this month but if not, I'm hoping the super ovulation will help xx

I could do with some advice if at all possible if anyone has been through similar. The NHS have said that the remaining tissue is large enough to warrant a further procedure 😞🙄 apparently the size of a 10p piece...they've said I can let it happen naturally but could take weeks and the pain is immense. Plus the bleeding has now stopped. Or they mentioned a tablet to help it along but I've heard some horror stories about that in that the pain could be a million times worse & it can make you vomit etc. Or they said they could operate but a strong chance they'd puncture my womb with it being so soft. CRP just said they would do another scan for me, but that would mean travelling from Bristol when I'm in so much pain & paying. I feel pretty pissed off that such a sizeable amount was left & now I'm in this horrible position. Especially after the CRP discharge report said the uterus was empty. The NHS nurse said there's only a 1% chance of this happening...just feel very stuck & not sure what to do xxxx

@Tumby
Hello. I’m sorry to hear this. Poor you. It is never ending. I think you’ll find everyone reacts differently. The pain I felt after medical management whilst my body tried to clear the retained tissue was immense and lasted days.
For me the ‘natural method’ using pessaries to bring it on was best. It was excruciating too but shorter term. You can ask for some knock out pain killers to be prescribed.
When you say tablet is this what you mean?
For me I would go with that option but everyone is different.
Thinking of you x

@Tumby for me, my retained tissue still had a blood supply and they told me it was very small, but when Dr. Jan went in, he said there was a lot more in there than he was expecting. Can you ask them what the procedure is? If it is with a camera - hysteroscopy, I would go for that as they can be quite accurate and its painless and over quickly. There's always a risk of them damaging the womb unfortunately, though the camera significantly reduces this as they can see what they're doing x

@Tumby no worries at all!! You've had a lot going on. I'm so sorry you're having to deal with all of this

@Tumby Oh I'm so sorry to hear that things are still not over yet.
It's probably quite difficult to decide, because every pregnancy is different and you just don't know what will happen. Try to listen to your gut feeling.

@Obrienlk I also find this NK cell theory still a bit confusing.
As far as I understand some doctors believe that only uterine NK cells can 'attack' a pregnancy, whereas other doctors believe that NK cells within the blood are responsible for pregnancy loss. And then you have the NHS RMCs which don't seem to care much about NK cells at all.
Dr. Quenby is studying the effect of uterine NK cells, so she would do the scratch. An appointment with her including ultrasound, scratch and follow up is around 530 pounds. Her approach is generally a bit more conservative.
I believe Dr. Shehata and Dr. Gorgy are focusing more on NK cells within the blood and other immune related issues. I have also seen a few posts of ladies that did not have uterine NK cells, but NK cells in the blood and they were treated with immunotherapy.
So the treatment will depend a bit on the consultant you are going to see. But if they have already diagnosed you with high NK cells, I would probably give it a shot and try the treatment they have suggested.

My initial thought after my last MC was to do everything I can at this stage and to listen to the different opinions.
So I'm on the waiting list for Dr. Quenby, but I'm also thinking about seeing someone else in London, which would be more convenient for me.
But let's see what my results for Thrombophilia and APS etc. will look like next week.

I hope everyone else is doing okay. Xx

@Tumby I don't want to say something unhelpful but my EPu told me - off the record - that although they are required to offer / encourage trying medical management for retained products, in their own experience only

Sorry posted too soon.

In their experience it is only effective in 5% of cases.

I hope whatever you choose isn't too horrific. Thinking of you so much x

Hi All,

I just wondered if anyone in here had done the Sperm Integrity Test and if so, if anyone had results come back with a high percentage. What does this actually mean? We don't really understand.