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

Amazing news!!! So pleased for you! What medication have they prescribed? Xx

Thank you! I'm on baby aspirin and a drug called hydroxychloroquine. I also need to have intralipid infusions around ovulation and every 4 weeks when I get a bfp. Xx

Such good news! Are you going to TTC straight away or wait until after Christmas? I was torn! Lol xx

Good update @HalGem99 but sorry you got off to an insensitive start!

@VenusStarr can I ask how you know the way your cells respond to a pregnancy is aggressive? What sort of test is this from?

@Daffodil21 I had tests at the CRP Clinic under Dr Shehata. They put your blood into a pregnancy state and see how the cells respond. I've got a normal nk cell count but in pregnancy there is an autoimmune immune response and they essentially attack the pregnancy. They use different drugs to see how to reduce the immune response. We've been through all the nhs tests and had no answers but the specialist yesterday said without treatment I'll likely keep miscarrying. X

@VenusStarr thank you. Yes I'm looking at what may be included in the NHS tests as I'm not convinced we'll get answers tbh so think we may have to go private. How long did all you nhs tests take?

My tests took quite a while as they lost the first set so I had them redone but as they came back normal I didn't need a follow up blood test. I think if you come back positive with anything like sticky bloods you have to have them redone to confirm. We were told just to ttc and I'd get extra scans but with my one in February it was a chemical and my most recent they were still closed because of covid. I've been under them for a year and other than 2 meetings with the doctor - 1 was the initial appointment and 1 was the results appointment - we've had no extra care nor have we been offered a trial (it's a Tommy's clinic).

@Daffodil21

Thanks @VenusStarr I'm not holding out much hope tbh! Did you get offered any genetic testing? We're waiting for results of genetic testing on the foetus

Yes we're waiting for our genetic testing from my last loss @Daffodil21. We did manage to get the hospital to do parental blood karyotyping when we got confirmation that my last pregnancy was failing - they usually do it after 5 losses I was told, but our results are normal with that too.

@VenusStarr oh really? Not until 5?! That's harsh. They are doing karyotyping testing but said because they're doing it on the foetus (sorry I don't really know what else to call it, so sorry if I offend anyone) that they wouldn't do genetic testing on us. It's all such a minefield. I'm trying to find out as much info as possible so that I know what to ask (and what to push) for. Just trying to get my head around it all. Sorry you find yourself in this position too, it really is shit but glad you're getting some answers

I know, it's awful. They almost tried to make me feel lucky that I was getting the test earlier. I mean I'm grateful they did it, but it adds to the trauma to have to keep fighting for answers.

I'd definitely recommend doing your own research and asking questions. Have you read the book Miscarriage what every woman needs to know? It's by professor Regan, I found that really helpful (although she does poo poo the tests I've had - mainly because there haven't been large randomised controlled trials - but if I was offered a drug that could help prevent me miscarrying but I didn't get it because I was on a trial and then miscarried again it doesn't seem ethical to me) but on the whole, it gives good insight into all the possible reasons. X

@VenusStarr I haven't yet, but it's on my list. I'm currently reading the book by Dr Beer on autoimmune diseases

I'm bracing myself for a battle tbh! It sure sounds like you've had one

@HalGem99 Why did you decide against Prof. Quenby research?

@StarGal88 because if my biopsy came back saying I had inflammation of the womb lining and I was in the 50% of women who were not prescribed the medication and I had the placebo I would've wasted more months not being able to conceive and I may be in a position knowing I've tested positive but no treatment for it as the research I think takes 48 months. If I tested positive and was guaranteed the treatment I would've done it but obviously that's research so not possible and I would never know if I had the treatment or not. I think I would rather try once more with the progesterone and see what the bloods come back with until I look into things further.

The more I read and research, the more I think it is a numbers game but who knows!

What's your story if you don't mind me asking? Xx

I have had 2 miscarriages back to back, both at 11 weeks. I have been referred to Prof Quenby and had my appointment yesterday and was offered the same. I’m unsure whether it is a numbers game too.

I believe the scratch of womb will help with conception and general wellness of the womb doesn’t it? If the lining of your womb is ok you are out of the research and can start trying in your next cycle can’t you? Xx

I'm sorry to hear that. Were yours missed miscarriages?

Yes I was told by one of the midwife's that they believe the scratch can be beneficial but nothing has been confirmed. Yes if you test negative you can try again.

Did professor Quenby say that she thought there was anything wrong with you? How did you find her?

Xx

No there were not missed ones. Not in so many words she said there is a reason why I keep on miscarrying. It could be something easy as needing more hormones but for me I think it will be better if I can eliminate things out.

She seems nice and kept on reassuring me that her goal is to get me pregnant and to be able to keep the pregnancy to full term.

What did you think of her?

Are you going to do the research?

I found her to be quite direct to be honest and felt that she was pushing me into doing the research. Hoping my next experience with her is better as I've only ever heard good things about her!

I think mine may be a hormone issue as I seem to spot brown blood for a few days then nothing until I go to the scans to be told I've had a MMC and I've read that there may be a connection with brown spotting and low progesterone. It may not be but worth a go!

I'm going to TTC again in January so will keep you posted. Xx

So we had just decided to go private with dr sheheta, and I got a positive test this morning, less than a month after mc. Here we go again....

@Daffodil21 congratulations!!!! How are you feeling about it? Are you taking anything this time? Xx

@HalGem99 thanks, it's very early days and this is our 4th go, so we'll see what happens.

I had some pred and progesterone left over from before, which I started taking 48 hours after ovulation, just in case, as I knew there was a higher chance of conception straight after mc. So I'll carry on taking those but nothing else unless obstetrician advises.

This is going to sound horrible, but I'm kind of indifferent tbh. I know what is likely to happen so it's just a case of waiting about to see how far we get (hopefully all the way, obviously) They've booked me a scan at 6 weeks, but actually I'm going to cancel it as unlikely to be reassuring at that point, and will just see how we go

@Daffodil21 what is pred?

I completely understand your feelings on the matter as I think I'm going to be the same next time as in I'm going to expect the worst but hope for the best.

Also, I get what you're saying about cancelling the 6 week scan as I had 2/3 early scans with both pregnancies and they did nothing for me as there were heartbeats as early as 5 1/2 weeks so not reassuring in my case however, on the flip side, as I had two missed miscarriages, it was picked up a lot quicker than waiting for a 12 week scan which meant I could get the medical management and move on quicker! Also, I did read somewhere that women who are offered and attend early reassurance scans were more like to go on to have a successful pregnancy than those who weren't offered them so may be worth thinking about going?

Have you had any advice about baby aspirin? I'm going to ask professor Quenby at my next appointment xx

@HalGem99 prednisolone. It's an immunity suppressant which is used to treat autoimmune diseases (I don't even know if I need it, but something has got to be causing mcs).

I've never had a conclusive or reliable scan tbh. I've had 'we can see a pregnancy but we don't know if it's viable, come back in two weeks' (we didn't make it that far) and I've had 'congratulations there's the heartbeat' twice so I'm just not going to bother with the uncertainly of it all. If I get to January without a bleed I'll see if I can have one at 10 weeks, for the reasons you say about MMCs but going to just try and switch off from it all and enjoy Christmas etc.

Honestly I have no idea how people get pregnant accidentally and actually end up giving birth

@Daffodil21 I think that is a good plan! Keep us updated!! I've got everything crossed for you xx