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

Anyone

Hi @Softscoop35 I'm sorry for your losses ❤️ I'm under the Birmingham Tommy's clinic and was seen at the end of October. They did mine and dh's height, weight, BP. We had a long chat with the consultant about our miscarriages and the consultant asked what we knew about recurrent miscarriage and what our opinions were on why they happened.

I had a blood test (still waiting for the results) think these test for the sticky blood amongst other things (the blood form just said recurrent miscarriage tests). The consultant explained that if we were unfortunate to have another mc they would test the baby.

At the moment they aren't doing kyrotyping nor nk cells - we'd need to go private for that.

I actually called Professor Quenby's secretary today to ask about a referral, my GP needs to do this for us. Our follow up is at the end of February (feel like I'm going mad with all the waiting!) they also have an implantation clinic which does the nk cells testing but Professor Quenby doesn't cover the clinic. You also have to not ttc for 2 cycles. We've already taken a 4 cycle break as I had a hysteroscopy last week (we're unfortunately under a fertility clinic too - double whammy of infertilty and recurrent miscarriage 😔) so probably not going to do that yet.

It might be different at a different clinic. I hope you get on OK, xx

Thank you for the info.

I wasnt planning on taking DH but thinking about it, i really should.

My last loss was 3 weeks ago so i hope that doesnt affect anything and i do intend on having FET (Frozen transfer) as soon as i can.
Im sick of waiting. Im sick of not knowing what my fate will be. I just want to close a door on it, one way or the other.

Im hoping my consultant will prescribe me the drugs i need as a 'just in case' precaution. I will find that out next week.

Jeez you have been waiting a while for the results!!!

The waiting is horrible @Softscoop35 just feel totally helpless.

The clinic said my dh had to come - it was helpful for me to have him there and that he could listen to what was said - I'm struggling to recall everything we talked about. He was a bit miffed that there wasn't that much for him to 'do', understandably it was mostly about me.

Fingers crossed you do get some meds. Dh and I hade already discussed me taking aspirin next time.

Let me know how you get on

Hi

So ive just had my app.
I was really lucky that it was with Dr Quenby herself. She is such a nice lady.

So, ive had bloods done for numerous things, VitD, TSH, blood clotting and some others. They took about 7 vials. We also had the kyrotpying bloods done (both me and husband)

She said she doesnt think i should be having clexane unless actually diagnosed with a blood clotting disorder but i should be on metformin to which she has prescribed, along with progesterone.
She said given the fact of how many times ive been pregnant, she doesnt doubt i will have another baby, she seemed really confident on that which gave me comfort, not so much what she said, but i felt she meant it.
She said now i am under her care, its all about being honest and upfront and having the support there should i get pregnant again. So this means, if i get pregnant again, i will have to call a number and will the have scans at 6,8 and 10 weeks pregnant. She said the aim of this is to relieve stress on me on hubby with the ongoing worrying of 'what is happening'.

So, she said as soon as i am emotionally ready too, get on and with my next transfer.

I have a telephone appointment in 4 weeks to go through my blood results but be mindful, only 50% of patients they get a diagnoses.

X

I'm pleased you had a good appointment and that you're getting good care. Fingers crossed for you 🤞

I found out yesterday that my clinic fucked up and didn't do all my bloods - 7 weeks later!! Really cross, they can't be sure if they were done or if they're just lost. But I only found out because I was chasing them - they then told me that I wouldn't usually be told anything unless something is abnormal or until my next appointment which is in February 🙄

I hope that things go well for your next transfer ☺️

Are they not going to do the bloods again?

Yes, they're sending me the forms in the post, so hoping when I go back in February I'll know more. But I have a fertility appointment in January and I doubt they'll be ready for that. Bit fed up.

I would be too...
As we said, its just more waiting isnt it. I hate it.

Well, if its any comfort, i had my app for RM today whilst a close work colleague/friend was having her 12 week scan.
She returned to work, all excited whilst i was miserable. (I didnt show it to her though)

Oh that's difficult ❤️ hopefully the coming weeks will bring positive news for us both x

🤞

@Softscoop35 I know this is an old thread but I have an appointment with professor Quenby on Friday and I wondered if she offered you any other treatments or follow ups?

Hey

Well 1 thing prof. Quenby was right on was i did indeed fall pregnant again. Im now nearly 19 weeks pregnant.
All that was offered was the scans as previous mentioned which were a god send in them early days particularly as i had some bleeds.
I was also put on Metformin for the duration of my pregnancy and cyclogest until 16 weeks.
However, as my DS was born prematurely, im now under her care again under the fetal medicine unit to prevent another premature birth and i have another scan with her in 3 weeks and ive been told to stay on a low dose of cyclogest until im 34 weeks.

Hope this helps and good luck xx

Congratulations @Aprilbaby21 that's great news. I sadly have had 2 more losses this year (last one was in October). My Tommy's clinic have offered no further insight or any additional care. They did parental karyotyping but our results are normal. We're still waiting for the tests from the baby. We've gone private with Dr Shehata now - waiting for my test results.

Best wishes with your little one xx

Im so sorry :-(

How many losses have you had? Tommys should be offering you the reassurance scans if nothing else!

Wow congratulations! I've had two missed miscarriages this year, the last one being September so I was very lucky that my GP referred me and I got accepted by professor Quenby. As I've only had two I think she might tell me to try again but at least I would have the peace of mind knowing that I have somewhere to turn this time instead of feeling alone!

Thank you @Aprilbaby21 I've had 4 now - 3 MMCs and one very early / chemical. They'd stopped clinics due to covid, so I think they would offer early scans for me now but when I had my bleed on September, they weren't technically open. But my first scan was pretty conclusive as the baby was 5mm with no heartbeat, so it was already too late x

@venusStarr that is awful, I'm so sorry to hear what you've gone through! Do you have any idea what is causing your miscarriages? I find it strange that with both of my MMC I had early scans and all scans showed a heartbeat on more than one occasion but something is happening around the 6/7 week mark which is making the heartbeat stop. I've tried to research but can't really find an answer. I've had full bloods done by the gp which came back normal so I'm at a loss! What tests have you had privately if you don't mind me asking xx

Thank you @HalGem99 I'm sorry for your losses too. It's awful to go through but to then also have no answers ❤️

I have had recurrent miscarriage tests via Tommy's, so they look for lupus anticoagulants and sticky bloods, Factor V Leiden and thyroid (there are a couple of others but I can't recall, sorry). The theory being if your blood is prone to clotting, it can cause clots on the placenta and stop the pregnancy progressing. This is treatable with aspirin and clexane injections. Your GP can't do these, so if you can be referred to a recurrent miscarriage clinic they should do that. Some epus can do them too (mine couldn't).

I've had a hysteroscopy which is a camera in the uterus - I had a polyp removed (they can cause a hostile environment) but I've had 2 more losses since. Sometimes they can find a septum / dip / abnormalities that could impact. I have an arcuate / heart shaped uterus but very mild so unlikely to be the cause. I also have multiple fibroids in the wall - as long as they aren't in the cavity they aren't thought to be an issue but can grow in pregnancy. So we've ruled that out.

I paid privately for nk cells biopsy at the implantation clinic in Coventry. They biopsy your uterus at 7-10dpo and analyse the natural killer cells - so having an environment that could be attacking the pregnancy. All normal again for me, but if they find anything, it's treatable by steroids.

So we've moved onto immune factors now. I recently paid privately to have my blood natural killer cells tested - so they see how my blood responds to pregnancy hormones, I'm still waiting for these results. This is under the Centre for Reproduction and Pregnancy (CRP) clinic in Surrey. Not cheap and not local for me, but we seem to have exhausted what the nhs can test and treat us for and because we have no answers for the losses, but there is a pattern - mine never grow beyond 5/6.5 weeks but my body doesn't recognise it. It feels like something is going wrong at that point.

There is a good book by Professor Regan called Miscarriage What Every Woman Needs to Know, it's definitely worth a read. Have you been referred to a recurrent mc clinic? If you can get the anticoagulant blood tests done, I'd recommend that first. Xx

I am so sorry that you have been through so much with no answers! I've had two MMC one in April and one in September. I live in Coventry so have been referred to professor Quenby and I have my first telephone appointment with her tomorrow. Have you tried progesterone and baby aspirin? I've read that on most miscarriage forums and the majority of women go onto have a healthy pregnancy after recurrent miscarriages? Like you something is going wrong for me at the same time in each pregnancy and my body doesn't recognise it. In both my miscarriages I have had dark brown blood on wiping and most forums say only worry if it's red etc but in my case that's not true. Do you have any symptoms? Xx

It's really hard to hope we'll get there. At the implantation clinic I saw Professor Brosens who works with Professor Quenby and he said I shouldn't use aspirin but did prescribe progesterone, which I did try in my last pregnancy but I had a big bleed at 6+1 so I knew it hadn't worked. I was scanned on the Friday and they pretty much confirmed it was another miscarriage but the baby was 2mm too small to intervene.

In my previous pregnancies I bled at 6+1 but broen blood - like you say, it's not been nothing for me. Then I had more brien spitting on and off until I naturally miscarried around 9 weeks. My second pregnancy I had no bleeding but I didn't feel right and had an early scan that showed I was small for my dates but I had been tracking my temperature so I knew my ovulation date. I naturally miscarried that one at a similar time to my first.

I did ask my go to refer me to professor Quenby when rid eventually come through after we'd booked to see the private doctor. I'm going to see what my results are next week and speak with professor Quenby at the end of the month to compare.

Good luck tomorrow. Let me know how you get on xx

I will let you know how I get on and hopefully you will keep me updated with your journey too!

How old are you if you don't mind me asking? Do you already have any children? Xx

I'm 37 now, we started ttc when I was 34 😔 I don't have any other children. What about you?

Yes, I'll let you know how I get on ☺️ @HalGem99 x

I'm 33 and hubby is 37 and we don't have any children.

So just had my telephone appointment with professor Quenby. In a nutshell, she thinks there is something wrong with me as when I had my MMCs I was 32 and she says that's the perfect age and in addition, with both of my MMCs there was a heartbeat on both occasions which makes her think something is wrong. :-( she is undertaking new research at the moment and offered me three options. The first being progesterone and regular scans, the second being blood test for sticky blood and the third a biopsy taken from the lining of the womb to test for chronic inflammation which will also include NK cell testing. Her recommendation was to do all 3 but that means I can't start trying to conceive again until February next year. My GP did all other blood tests and she said they came back ok. I need to let her know by Monday! I'm at a loss as what to do, hubby is at work so can't speak to him until tonight. Any advice? Xx

Honestly @HalGem99 I'd probably get the testing. I found it much easier to cope when I had tests or procedures to wait for. When I have nothing to not ttc for, I really struggle.
It could be that you do have sticky blood which is relatively easy to treat with aspirin and clexane injections. I know 2 people who have this and are nearly at the end of their pregnancies after multiple losses.
I also had the uterine biopsy - because of covid I only had my first one and that was normal but I'm going yo go back for my second if I can (my cycle hasn't regulated yet). They do the biopsy at 7-10dpo and if you have raised cells you have steroids.

Try and get copies of your blood results too - the GP might think they're OK but professor Quenby might not, just thinking about your thyroid. Mine fluctuates and I'm on a low dose of levothyroxine, but my GP is flummoxed as to why as it's normal but for fertility ideally you want it to be closer to 2.

It's really hard to hear that they believe the babies were healthy and it's likely to be an issue with your body or hormones ❤️ but these tests could give you answers. Do you have to choose one of the options? Can you do all 3? I guess to help you decide, would you be questioning what if in 3 months time? Xx