Recurrent miscarriage testing - 1st app

[Softscoop35]

Hey 😁

In short, 4 pregnancies, 4 losses. Ds (living) was the result of 3rd pregnancy but as he was a twin, my GP has classed that as a loss too.

2 losses from CP
2 losses after seeing heartbeat.

Im lucky that i have managed to get a cancellation for friday after waiting only 3 weeks.

What should i expect from my 1st appointment?

Im also lucky in the fact that my local hospital and clinic where im receiving treatment is where Prof.Quenby is based.

Not sure how relevant that is mind as my app is on the gynae ward.
I have a few questions if anyone could answer?

Would i be eligible for Kryotyping on NHS?
As ive had a child, would i even need it?
I know they test for blood clotting and thyroid, but what else will the test for?

I do wonder if i would see Prof. Quenby as an NHS patient. My bet is i wouldnt. I have a very vague memory of having a chat with her way before i had DS but i could be wrong.

Any advice would be handy. I have a tendency of having high expectations so i want to go in there, kinda knowing what im going to get out of it.

(Ps, i know there is a 50% chance i wont get anything out of it)

Thanks in advance

Thank you. I've had a chat with hubby and I'm going to do all the tests. What is a uterine biopsy? Is that the NK cell testing? Xx

Yes @HalGem99, there's 2 types. The one you're having looks at the cells in the uterus. Mine were OK so I'm looking at peripheral nk cells. The blood test looks at how my blood nk cells behave in pregnancy and how aggressive they are and then different treatments to bring the cells down. Although they're both nk cells, I think they are actually different.
It's good to have a plan and hopefully this will give you answers :) xx

It's all so confusing with so many different tests. I feel really deflated and upset as I was expecting professor Quenby to say these things happen, try again but with progesterone but she didn't! She sounded pretty sure that there is something wrong with me which naively I wasn't expecting! My mum said k should feel positive as I am under professor Quenby's care and they are doing tests but I just don't feel like that and I don't know why. How did you feel? Xx

It is really confusing and trying to navigate things is hard @HalGem99. I did get the book Miscarriage what every woman needs to know and I found that really informative about all the different tests that you could have and helped me think about our circumstances and formulate questions.
It's devastating to know that there may be something wrong and that if you'd known there possibly was something that could have helped. I think I had a similar feeling after seeing my new doctor last week - I felt very unsettled for days, it feels very overwhelming ❤️

I'm not too bad, I've been preparing for my results appointment next week. I definitely have to go on my own as dh is working. I'm really scared he won't find a reason or that he will find something but can't treat me. Trying not to overthink, but I'm not great at that! Xx

At least you don't have long to wait now. I really hope you get some answers!! With your MMCs did you see heartbeats? That's what is bothering me the most as that was a red flag for professor Quenby but in my mind before speaking to her I thought it was a good thing! Xx

No, I've never seen a heartbeat 💔 I did wonder with my last one if there might have been one if I went earlier as they were measuring 6+4 and I'd had a bleed at 6+1, so that's the day it went wrong. With my other 2 I was always behind on dates so don't believe they ever did.

Are you speaking with her again, just wondering if you've still got questions that you could ask her to explain why that indicates there is a problem?

Hoping we both get answers 🙏 ❤️ xx

Hi @HalGem99 sorry to jump on but I wondered if I could ask you a question...

Was the doc concerned because there had been a heartbeat and then it was a MMC, or just because there had been a heartbeat? Waiting for a referral to the RMC clinic although reading this thread I'm not sure we'll get any answers. Two out of three of mine had heartbeats but they weren't MMCs

I suppose the next time I see her will be in a few weeks when I have my tests so I will ask her then. I need to phone the hospital Monday to confirm what treatment I want then phone her when I ovulate so I've got to wait until then for my tests.

Hi @Daffodil21 I honestly don't know I'm afraid. She asked me to go through my MMCs then I said to her do you think there is something wrong and she just said yes because of my age and the fact that both babies had heartbeats. She said the fact that I'm getting to the stage where I'm seeing a heartbeat concerns her but that's all she said and in all honesty I was so taken back and upset I didn't ask anything else. I have a million questions now!

What's your journey so far? Xx

Hi @HalGem99 thank you for your reply.

Been TTC two years now, had a loss in September last year (blighted ovum) and then got pregnant the following cycle, but lost at 6-7 weeks (5 days after seeing a heartbeat). Took another ten months to conceive, this time I went private and had lots of drugs prescribed 'just in case'. I had no tests and couldn't start them until a week after my bfp because that's the earliest I could get an appointment. I was on clexane, metformin, prednisolone, aspirin, progesterone and high dose folic acid, but none of it made any difference and I lost that one last week at 6-7 weeks, again after seeing a heartbeat. Just exhausted by it all tbh. We sent the 'product of conception' (urgh) off for testing but I'm not expecting any answers tbh.

I'm sorry to read what you've been through, but glad you are under the care of prof quenby

It's rubbish isn't it! How come you haven't had any tests before? At least you have a referral now, it does give you comfort and makes you feel like someone is in your corner! Xx

@HalGem99 just because we had to wait until we had 3. Ive always sort of known we would get there. We've had fertility testing done but nothing much to do with mc

I think it's so cruel having to wait for three. Good luck with your referral! Let us know how you get on. I'm going to keep updating this post with my journey as it's so frustrating following a post which no one ever updates lol xx

@HalGem99 I know, I really feel it should be two. I feel like I've just been waiting around for the inevitable three to happen and now we've wasted another year.

I will do, but we've been told we probably won't hear results back from the test until January, and we're still waiting for the actual referral too, so I expect it will be a lengthy process with very few answers.

Hope you get some help and answers, let us know

Where are you based as professor Quenby takes referrals after two?

By way of an update, I received the information through from the hospital about the research trial and it doesn't benefit me in anyway. I also spoke to a lovely lady who went through everything with me this afternoon . All I will know is whether or not I have inflammation of the womb lining and then if I have, a computer will decide if I get antibiotics or a fake antibiotic to try and treat it. The research takes 48 months. The only possible benefit to me would be that when taking the biopsy it will scratch the lining of the womb which has shown may assist with getting pregnant but there's no conclusive evidence. In relation to the NK cell testing, I was told that due to covid, if I have the test they can only tell me if I have the high cell count or not and if I have, they would usually treat it with steroids but because of covid they aren't providing steroids and treatment is on hold!!!

I've therefore decided to just have the blood tests for sticky bloods and take the prescription for progesterone and try again as the lady I spoke to didn't seem to share Professor Quenby's view that there is something wrong. She told me that 1 in 4 pregnancies end in miscarriage and that I may just have been one of the unlucky ones and that a prescription of progesterone may be all I need! She says they will do thorough bloods as well which may give me some answers so I'm going to get booked in for them and wait a month for the results!

Xx

@HalGem99 was that question for me? If so I'm in Scotland...

It sounds like they are fobbing you off a bit to be honest, although I don't really know what to suggest. I was prescribed (privately) prednisolone which is a steroid to treat autoimmune diseases as a 'just in case' measure in my last pregnancy which was during covid. I was just told to self isolate because it suppresses your immune system (kind of the point!)

Yes sorry that was for you.

When you say fobbing me off, are you referring to the steroid bit? Xx

Oh that's not great @HalGem99, I'm glad you've got some clarity though. The doctor I'm seeing will prescribe steroids (predisolone) if I need them, will find out on Wednesday. I hope the blood tests give you answers and the progesterone helps.

@Daffodil21 we're waiting for the test results from our baby too, not expecting our until Christmas and I'm not holding out hope that we'll find any answers from it. I hope you're not waiting too long for your referral.

I've had a stressful weekend. I've been worried I had retained tissue as I'd had some worrying symptoms and a strange period so my GP prescribed antibiotics. I passed some tissue yesterday that was definitely pregnancy tissue, despite me having negative hpts. Epu weren't interested but my GP has requested an urgent scan.

@VenusStarr I am sorry to hear you're going through this! Having to deal with a miscarriage is enough in itself let alone the after math if it's not straight forward!! I hope you get your scan etc to put your mind at rest xx

@HalGem99 yeah the steroid bit. This is the area I really want investigating but I think they'll try and fob me off too. Do you know if the biopsy can be part of nhs testing?

@VenusStarr same sort of time frame as me too. I'm glad the GP listened to you, but I'm sorry the EPU didn't!

As far as I am aware you can only have it done privately and it's £560 but they offered it to me as a way of getting me to do the research I think! Anyway, I've contacted the hospital today to say I'm going to proceed with the blood tests and progesterone only and see if that works! Xx

@HalGem99 brilliant, thank you! That sounds doable if necessary. Glad you've come to a decision!

@Daffodil21 I think that fee is only if you're doing it at the hospital in Coventry as the charity pays the rest as it's usually £2,500 I think from what I've read on here! Could be wrong though! Yes I'm happy with my decision. Will keep you updated xx

@HalGem99 ah ok. I'm nowhere near Coventry so that probably won't be an option. Good to know the full price though as I really don't think I'll get the tested I want and feel I need on the NHS.

Good luck and keep us posted!

Just had my appointment at the hospital. They told me to go to ward 24 which I did. When I got there the nurse asked me for my pregnancy notes, I looked at her confused so she said you know for your baby?? I said ermmm I'm here about recurrent miscarriages so I don't have a baby! They sent me to the wrong ward! Great start! Lol

The actual appointment was good. The midwife was lovely, talked me through everything and took my bloods and gave me the progesterone to take as soon as I get a positive up to 16 weeks. The blood test results will take 5/6 weeks and I have an appointment booked with professor Quenby to go through the results on 8th January. So I've decided that I'm going to forget about it over Christmas, drink a lot of prosecco then try again in January and hope for the best!

Hoping you ladies get some answers and positive outcomes soon xx

Sorry it didn't get off to a good start @HalGem99 but pleased you had your bloods and you've got a plan now and fingers crossed for your results appointment in the new year.

I had my results appointment yesterday and finally have some answers. My nk cell count is normal but the way they respond to pregnancy is aggressive so my body is effectively attacking the pregnancies. I need medication from before I concieve, so have started already. I've got a treatment plan to follow now and we've been given the go ahead to ttc again. Feeling relieved to finally have answers now.

Xx