Recurrent miscarriage testing - 1st app

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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

Hi glowingtwig, so sorry to hear what you've been through.

I've had three miscarriages this year and had medical management 1st, expectant 2nd time, and erpc 3rd time.
With medical management, I bled for 5 days and got my period after 4.5 wks (normal for me), then got my next bfp that month.
With expectant, bleeding lasted 6 days then period after 5 wks, conceived that month again.
Had erpc this time and bled for 4 days (lots of spotting for around 2 wks though) and still waiting for AF, but then it's only been 3 wks.

Physically, I found medical the hardest pain-wise (I was 12wks though and had to do it at home because it was during lockdown1), but if you've given birth before I imagine you'll do much better than me!

Weirdly, I also found things easier to process emotionally after going through the physical side - I found it quite odd waking up from the general anaesthetic and it had all just... gone.

Hopefully your nurse/doctor will go through all of this, but I'm happy to share my experiences with you if it helps x

I'm absolutely fuming. The doc just called about the testing that was supposed to have been done on the last loss. She said they can't do karyotyping or chromosome testing because it's under 18 weeks (didn't they know that when they asked me to bring it in??) the only thing she said was that it wasn't a molar pregnancy and the tissue looked 'normal'. She said my blood works looks really good, and didn't seem to question that clearly there may be something else going on. Then she congratulated me on my new pregnancy (I'm only 5+5 on my 4th pregnancy) and then told me to just relax!!!!

@Daffodil21 how annoying for you! Try and concentrate on your pregnancy and your results tomorrow. Hopefully things work out for you so you don't have to deal with all the stress and drama of it xx

@HalGem99 thanks. Results ok this morning!! HCG has doubled! Obviously that's not to say it won't change, but for now at least it's looking ok xx

@Daffodil21 amazing news! So pleased for you! Just take a day at a time!! Xx

@Daffodil21 Brilliant news, so happy for you!

Hi ladies. I’m really sorry about your losses. I have been there and it is soul destroying. I hope my story gives you bit of hope (I used to scour the internet looking for stories similar to mine).

I had my daughter in 2014 and then went onto have 5 consecutive miscarriages. Always got to about 7 weeks, saw a heartbeat, but could never get past 8 weeks. I went to see Dr Shehata after miscarriage number 3. I had 2 more miscarriages under his treatment plan (pred and intralipids). One we didn’t manage to get tested so not sure what happened, the other one came back positive for trisomy 16. I had a bad reaction to pred so for the next pregnancy I was put on hydroxychloroquine and progesterone only. I carried to term and had a healthy boy.

After a lot of heartache I got there in the end. I highly recommend Dr Shehata. The NHS just kept telling me to relax and that it was bad luck.I’m glad I didn’t listen to them.

I wish you ladies all the luck in the world xx

@PJ12 that is so nice of you to take time out to reassure us. Thank you.

So were you actually diagnosed with anything or was it a chromosome issue? Is there treatment for it? Sorry but confused!

What private tests did you have? Xx

@PJ12 thank you for your story, I'm glad it all worked out for you in the end but I'm sorry you had such a sad journey.

We had decided to go with Dr S after my last loss. I had phoned then to book the app but had no answer and left it a couple of days. Then I got my +ve result so we obviously haven't booked! I'm on pred and progesterone now, and if this doesn't go to plan we will definitely be going to Dr S!

Hello. Sorry, I was in a rush last night. Here is my full story.

I have a 6 year old DD and had no issues getting pregnant with her and it was a textbook pregnancy. When she was 1 we started trying again and I had 3 miscarriages in a span of a year. They were all the same: I would get to 7 weeks, start spotting, and miscarry by 8 weeks. As it stands with NHS I had to wait to have 3 miscarriages before being referred for further testing. I was 37 at the time and knew time wasn't on my side so we decided to go privately. I went to see Dr Shehata after miscarriage number 3 and was diagnosed with NK cells and sky high tnf-alpha (I think it was 58). I started the pred and after 2 months had my tnf-a retested and it went down to 27. I got pregnant soon after that but, again, miscarried by week 7. All my miscarriages had been natural so unfortunately I didn't manage to get it tested. However, after being on pred for 7 weeks I started to get really bad side effects (I was always ok on it short term). I felt very anxious and started to get very bad heart palpitations (to the point that I thought I was going to have a heart attack). I decided to stop the pred and after speaking with Dr Shehata we decided to go with hydroxy only (Dr Shehata did mention that he had never had a patient react to pred the way that I did so it was a very rare reaction). Again, I got pregnant a couple of months later but had another miscarriage. This time it was a MMC so I had Dr S test the foetus and it came back positive for Trisomy 16. So no drugs in the world could have saved that pregnancy. It was comforting to know that it wasn't that the treatment plan wasn't working, it was just one of those unfortunate things. We decided to have one last try with Dr S as, at that point I already had 2 miscarriages on his plan. It was costing us a fortune and I felt I wasn't getting any further than I had before. I got pregnant in Feb 2018 and this time everything went as it was supposed to. All my scans were good (prior to that I always measured behind on my scans with my miscarriages), it was such a straightforward pregnancy that i was in disbelief. I even delivered on my due date.

I know some women are sceptical about Dr Shehata and his treatment plan can be very expensive (I think the initial test cost us about £2.5K but that was about 4 years ago). For me, I felt I had run out of options. The NHS couldn’t offer me anything so I started to explore other avenues. Immunology was consistently coming up in my searches for recurrent miscarriage so we decided to give it a go and it eventually worked for me.

xxx

Hi ladies I’m new here
My story is - healthy successful pregnancy aged 28 which resulted in my son .

Started ttc no 2 aged 34 and have had 5 early losses in the space of 18 months . I seem to conceive every 3 months but they never stay

My first two losses were mmc and were discovered on scans .
My last three losses are all ‘chemicals’ two of which have been on progesterone.

I’ve been tested through Tommy’s in Birmingham and everything is normal . Including karotyping .

I have very regular cycles and after all this ttc Ing I know when I’m pregnant even before taking a test

I’m weighing up my options now - I’ve had a zoom consultation with prof Brosens and Can for a biopsy in January but am wondering is this point less as if my results are high , I think I’ll have to fight for steroids .

I know a lot of ladies go to shehata but something is stopping me . It’s not the cost but all the traveling to Surrey . I’m a police officer and work shifts so it would not easy at all .

I’ve also done a lot of research re age and basically at my age (36) probably 50
Of my eggs are abnormal . Also combined with my partners age (41) our risk of miscarriage is 25% anyway .

My gut is telling me this is a numbers game . Age is a significant risk factor for miscarriage and nothings changed since the birth of my son , only age .

Sorry for the ramble . 🙈 x

@Finleysmom84

As I've already mentioned above, I'm seriously thinking it is a numbers game based on what I've read!

In relation to the NK cells testing with prof brosnan, if I'm right he works along side prof Quenby in Coventry? If so, I was point blank told the other month that I can have the biopsy but they wouldn't prescribe steroids as they've been told not too due to covid. Therefore, you would be having the test for them to say whether or not you have it. It may have changed over the last month though? Also, professor Quenby told me not to bother!

Its horrible to go through what we are but I think we just need to keep at it. That's my thought but could be completely wrong! On the other hand, there's no harm in getting the tests done. It's so hard to decide what is for the best!

I think the fact that you have had a healthy pregnancy means the odds are very much in your favour xx

@HalGem99 that’s what I feared which makes me think what is point? Unless I could get steroids from Amanda tozer but she is also not prescribing steroids at the moment .

Re shehata I worry I must not want it enough as so many ladies go to him but there’s a few red flags with him that put me off

@Finleysmom84 what are the red flags?

There's nothing I want more than to have a baby but I can't justify going private yet based on what I've read and what I've been told.

Even my GP told me not to "waste my money going private." Ive been told so many times that in the majority of cases all tests come back ok and no reason is found but then on the flip side, some people find answers after going private. Such a mind field!

If you read most people's story, they do say that they think their successful pregnancy would've been successful without the treatment they were prescribed anyway! As a lot of women still have miscarriages on the same treatment they then go on to have a successful pregnancy with. That's the thing that sticks in my mind which again makes me think it's a numbers game!

Xx

I've been prescribed steroids - PM me if you want details x

@HalGem99 just that he charges full
Consultation fee when it’s a query that could be answered with and email

Intralipids are non - negotiable even though there is very little evidence to suggest they work and a lot of women don’t want them but are being told he doesn’t do ‘pix and mix ‘ treatment.

He doesn’t believe age plays a role in recurrent miscarriage.

He wants you to have scans every two weeks at his clinic which are expensive.

This is stuff I’ve read from women on fb groups and forums

This is why I’m hesistant about seeing him also every Woman that sees him seems to be diagnosed with high nk cells

Lesley Regan and prof quenby don’t believe that nk cells in the blood cause recurrent miscarriage and that private treatment for it is unethical and taking advantage of desperate women . Also nk cells play nicely into ‘it’s our fault ‘ ‘ my body is killing my babies ‘

I just don’t know anymore . Everyone disagrees re nk cells . I can find little evidence that says they are a factor x

Oh my gosh. Ladies I'm so glad I found this thread!

I've had 5 miscarriages this year. 2 missed miscarriages resulting in surgery (one last Friday still recovering)

I've scouring the internet to find what tests I need. The NHS are fab but quite understandably slow. I've got savings and will go private.

CRP sounds like a good clinic? Any advice at all? Thank you so much x

@Finleysmom84 that doesn't sound good! I do have the money to pay private but it just doesn't sit well with me mainly for the reasons you've just stated about being taken advantage of. Also, my GP said that the reason why the NHS doesn't offer NK cell testing and other tests and treatment that you can only get if you pay privately, is because there isn't strong enough evidence that they cause or treat miscarriage. Xx

@HalGem99 just to keep you posted. I did the biopsy with Prof Quenby’s research and it came back positive for chronic endometriosis. Hopefully that is an explanation for the recurrent miscarriages. Suppose only time will tell!!

I’m still deciding whether to continue with the research. Hope you are well xx

@StarGal88 thanks for the update.

How did you find the biopsy? When can you start trying again? Xx

The biopsy was slightly uncomfortable and only had light spotting and cramfor a day. It was mainly dark brown blood (old blood) that came out.

If I do the trial I can start trying in February as hadn’t been trying since the second miscarriage in August she managed to get me in earlier so I didn’t have to wait full 3 months.

But now knowing that I have endometriosis for me my DH says any small chance I can do to improve my chances I should try. Whereas it’s the issue of time for me. Xx

@HalGem99 too early to start typing...forgot to tag xx

@StarGal88

I'm glad it wasn't painful for you and that you're getting some comfort from it xx

Did professor Quenby say what treatment is available for you if you had another miscarriage after taking the tablet or placebo? Because if you're unlucky enough to get the placebo your endometriosis wouldn't have been treated and the trial is 48 months so you wouldn't be prescribed the tablet until then and that's only if the research had a positive outcome. Sorry to ask and sorry if it sounds negative but that's what's stopping me from doing it. I might run it by professor Quenby at my next appointment.

Do she prescribe you progesterone as well? Xx

@HalGem99 yes I did ask that question. I agree with you and you need think about all scenarios really. She said as she would have 2 biopsy samples already they may be able to run more tests on the samples she has if I were to have another miscarriage (fingers crossed I don’t)

They ring you every couple of months to see if you have conceived. Apparently having both scratches have improved the chances of conception and live births. It took us 9 months to fall last time and doctor said it should happen quicker this time because of the biopsies.

Yes I have 4 months of progesterone Xx