Recurrent Miscarriage Thread

[blueblue]

Article about nk cells research/prof Quenby: https://www.jamiegisby.co.uk/new-hope-women-suffering-recurrent-miscarriage/

 

[petitpas]

Trying, I was sceptical about nkcells for a long time (mainly due to the controversy about testing methods) but in the end it was my local NHS consultant who said try seeing Mr S or consider giving up. Mr S is actually an NHS consultant, too, and prescribes steroids in his NHS clinic. Your doctor may not be convinced but more and more doctors are prescribing immune treatment (often without the expensive and controversial testing process).
When I went to see him he went through all the standard tests and ordered anything that was missing (that's why I suggested getting as much through the NHS as possible if you might see him privately).
Since I had my first steroid baby my local NHS hospital have embraced immune treatment and are seeing a lot of success in their recurrent miscarriage clinic with it. I have also participated in two lectures with my consultant at the local medical school. I say this so that you don't think your gynae represents the view of the whole of the NHS.

Btw, my winning formula (for two healthy children) was adding steroids and a higher dose of heparin with monthly blood tests to monitor the dosage (because I am a clotter - not everyone gets that) as well as vit D, progesterone, aspirin, omega 3, 5mg folic acid. I never had a hysteroscopy. I was on the waiting list when I went to see Mr S.

 

[theiska]

After my second MC in a 3 month period, my coworker (HR type. We don't really have an HR department.) told me "We'll maybe someone upstairs is trying to tell you something." Idk why, but I can't get this out of my head. It hurt SO much. Like God thinks I needed to lose my babies?! Ugh. I don't even belive in god. It still hurt. Like SHE has an opinion she's too timid to say so she implies that it's God's will. Idk why her opinion matters to me but I can't even focus at work. It has been almost a month now and I just want to quit. They treat my pregnant coworker who announced her pregnancy the day of my MC (she didn't know) like a goddess and give her all the leeway she needs. For me it's "Pull yourself up by the boot straps." Sigh. I'm off today, but my heart hurts thinking about it.

 

[pinkpassion]

Theiska, I'm so sorry she said that to you. That's just awful!!!! I do believe in God and I would never think that towards someone or anything. She sounds like a bitter person who wants to pass her opinions off as others so she doesn't take the responsibility of her words. When I went through my first 3 losses I too got a few people tell me "maybe you aren't meant to have your own children! You could always adopt" "you should stop trying because it only ends in heartache" .... their words pierced my heart and made me so angry I could have grabbed the nearest object and pummeled them with it!!! (Obviously I didn't ) but all that to say, I have no idea why people think it's ANY of their darn business to open their horrible mouths and speak the stench of their thoughts. It's incredibly unnecessary and inaccurate.
If their words had been true I'd not have been blessed with my dd the next pregnancy. I did have 2 more losses after that and received some of the same things. Even people "sacrificially" offering up to be a surrogate for me. I just wanted to yell at them all LEAVE ME THE HECK ALONE!!!!!!!! But my dh and I kept on and I'm waiting to meet our next miracle!!! I still don't know what the future holds for us. I want more children but pregnancy is such a difficult road for us! We have to wait and see!!

 

[Trying4first1]

Blueblue- thank you for your reply 😊
I think that the main reason my gyne doesn't believe in these things is because there is not enough evidence. I think him and mr Shehata have very different views.
Thing is I don't want to just try again without trying anything new.
So glad my hysteroscopy has now been moved for three weeks time and hoping genetics be back soon. Then we can really make a decision.
I heard about the response study. I would have signed up but they have stopped taking on people now.
Which tests did you have on the Nhs?
So fa tube had bloods genetics on pregnancy tissue and will have the hysteroscopy. Think that may be all.

 

[blueblue]

Petit Pas - glad your local hospital is using different treatments in their clinic x

Theiska - I'm fuming at your horrible colleague - what an awful thing to say! As if it isn't hard enough without that. x

Trying - hope the genetic tests come back soon, have you had karyotyping too? If the results are good for for the response trial, there would be another one with more women, we'll have to wait and see - I've been told we will find out whether we got the active drug or placebo at the end of this year when all the results are in so hopefully it'll be made public at that time. I'm really hoping something will come of it, it would be great for women to be offered an option after three losses and as there is a clinical trial there would be enough evidence that all consultants should support the treatment.

I had thyroid tests (also had T3 checked privately), lupus, thromophilia screen inc heritable disorders like Factor V Leiden, anti-phospolipid syndrome testing, karyotyping on me and OH, my GP did a rheumatology profile to check for auto-immune issues, privately I had a homocysteine test to check for MTHFR and a vitamin D test. I'm presuming you have a referral to a recurrent miscarriage clinic? Hope you get some answers from the hysterocopy and genetic tests x

 

[LeeC]

Trying41st1. I am another graduate of this thread along with Petipas, Hope and many others (hello ladies) and believe me there were many times I NEVER thought I would be.

After 10 losses I carried to term after seeing Mr Shehata, I am now 37 wks pregnant following the same plan after 3 further losses. I have had all tests and everything came back clear. I am unexplained and 42.

Steroids, clexane, aspirin, progesterone and supplements seems to have worked for me. (In fact same plan as Petipas and Hope, only a very slight higher dose of steroids).

Good luck x

 

[dancareoi]

I too had clexane and progesterone after seeing professor Q.

 

[Trying4first1]

Petit Pas - glad your local hospital is using different treatments in their clinic x

Theiska - I'm fuming at your horrible colleague - what an awful thing to say! As if it isn't hard enough without that. x

Trying - hope the genetic tests come back soon, have you had karyotyping too? If the results are good for for the response trial, there would be another one with more women, we'll have to wait and see - I've been told we will find out whether we got the active drug or placebo at the end of this year when all the results are in so hopefully it'll be made public at that time. I'm really hoping something will come of it, it would be great for women to be offered an option after three losses and as there is a clinical trial there would be enough evidence that all consultants should support the treatment.

I had thyroid tests (also had T3 checked privately), lupus, thromophilia screen inc heritable disorders like Factor V Leiden, anti-phospolipid syndrome testing, karyotyping on me and OH, my GP did a rheumatology profile to check for auto-immune issues, privately I had a homocysteine test to check for MTHFR and a vitamin D test. I'm presuming you have a referral to a recurrent miscarriage clinic? Hope you get some answers from the hysterocopy and genetic tests x

Hi blueblue

Just seen this and that I never replied!
We are having karyotyping done in the pregnancy tissue. Still waiting for the results. It's only just been over 4 weeks so may be a while yet.
That's will be really interesting to see if you got the placebo or the active drug. Really hope it made a significant difference. Any treatment for RM is amazing. Any idea how it does help?
I have now been reffered to a consultant that has an interest in RM. I got my letter through the other day that the gyne sent to my GP. Basically says that if genetics and hysteroscopy come back clear we just have to try again and have early monitoring, more scans blood tests etc. Not sure I am happy with that. That odds are in our favour yes, but with me I think it's either 0% or 100% not this 70% that you will have your own child. What if we are in the 30% that can't. Trying again terrifies me along with the months and months of trying again. Especially if it ends badly. I just don't know where to go next. Is it worth going private now? Or do we try one more time?
Wow you have had loads of tests! I bet the NHS don't do half of those. I am going to ask for a list of the ones that I have had next time I go to the hospital as I want to keep track.

Will let you know how the hysteroscopy goes in a couple of weeks time. Hoping the genetics results are back not too long after. X

 

[Hope39]

Petit Pas - glad your local hospital is using different treatments in their clinic x

Theiska - I'm fuming at your horrible colleague - what an awful thing to say! As if it isn't hard enough without that. x

Trying - hope the genetic tests come back soon, have you had karyotyping too? If the results are good for for the response trial, there would be another one with more women, we'll have to wait and see - I've been told we will find out whether we got the active drug or placebo at the end of this year when all the results are in so hopefully it'll be made public at that time. I'm really hoping something will come of it, it would be great for women to be offered an option after three losses and as there is a clinical trial there would be enough evidence that all consultants should support the treatment.

I had thyroid tests (also had T3 checked privately), lupus, thromophilia screen inc heritable disorders like Factor V Leiden, anti-phospolipid syndrome testing, karyotyping on me and OH, my GP did a rheumatology profile to check for auto-immune issues, privately I had a homocysteine test to check for MTHFR and a vitamin D test. I'm presuming you have a referral to a recurrent miscarriage clinic? Hope you get some answers from the hysterocopy and genetic tests x

Hi blueblue

Just seen this and that I never replied!
We are having karyotyping done in the pregnancy tissue. Still waiting for the results. It's only just been over 4 weeks so may be a while yet.
That's will be really interesting to see if you got the placebo or the active drug. Really hope it made a significant difference. Any treatment for RM is amazing. Any idea how it does help?
I have now been reffered to a consultant that has an interest in RM. I got my letter through the other day that the gyne sent to my GP. Basically says that if genetics and hysteroscopy come back clear we just have to try again and have early monitoring, more scans blood tests etc. Not sure I am happy with that. That odds are in our favour yes, but with me I think it's either 0% or 100% not this 70% that you will have your own child. What if we are in the 30% that can't. Trying again terrifies me along with the months and months of trying again. Especially if it ends badly. I just don't know where to go next. Is it worth going private now? Or do we try one more time?
Wow you have had loads of tests! I bet the NHS don't do half of those. I am going to ask for a list of the ones that I have had next time I go to the hospital as I want to keep track.

Will let you know how the hysteroscopy goes in a couple of weeks time. Hoping the genetics results are back not too long after. X

Trying - I would ask for a referal to me Shehata , he has his own private clinic but you can see him on the nhs . He runs most of the tests blueblue mentioned, he does a full thrombophilia screen which includes aps, Leiden factor v, mthfr, lupus anticoagulant , full thyroid panel, thyroid antibodies and the Nk cells

I know a lot of people that have had success with him x

 

[Trying4first1]

Petit Pas - glad your local hospital is using different treatments in their clinic x

Theiska - I'm fuming at your horrible colleague - what an awful thing to say! As if it isn't hard enough without that. x

Trying - hope the genetic tests come back soon, have you had karyotyping too? If the results are good for for the response trial, there would be another one with more women, we'll have to wait and see - I've been told we will find out whether we got the active drug or placebo at the end of this year when all the results are in so hopefully it'll be made public at that time. I'm really hoping something will come of it, it would be great for women to be offered an option after three losses and as there is a clinical trial there would be enough evidence that all consultants should support the treatment.

I had thyroid tests (also had T3 checked privately), lupus, thromophilia screen inc heritable disorders like Factor V Leiden, anti-phospolipid syndrome testing, karyotyping on me and OH, my GP did a rheumatology profile to check for auto-immune issues, privately I had a homocysteine test to check for MTHFR and a vitamin D test. I'm presuming you have a referral to a recurrent miscarriage clinic? Hope you get some answers from the hysterocopy and genetic tests x

Hi blueblue

Just seen this and that I never replied!
We are having karyotyping done in the pregnancy tissue. Still waiting for the results. It's only just been over 4 weeks so may be a while yet.
That's will be really interesting to see if you got the placebo or the active drug. Really hope it made a significant difference. Any treatment for RM is amazing. Any idea how it does help?
I have now been reffered to a consultant that has an interest in RM. I got my letter through the other day that the gyne sent to my GP. Basically says that if genetics and hysteroscopy come back clear we just have to try again and have early monitoring, more scans blood tests etc. Not sure I am happy with that. That odds are in our favour yes, but with me I think it's either 0% or 100% not this 70% that you will have your own child. What if we are in the 30% that can't. Trying again terrifies me along with the months and months of trying again. Especially if it ends badly. I just don't know where to go next. Is it worth going private now? Or do we try one more time?
Wow you have had loads of tests! I bet the NHS don't do half of those. I am going to ask for a list of the ones that I have had next time I go to the hospital as I want to keep track.

Will let you know how the hysteroscopy goes in a couple of weeks time. Hoping the genetics results are back not too long after. X

Trying - I would ask for a referal to me Shehata , he has his own private clinic but you can see him on the nhs . He runs most of the tests blueblue mentioned, he does a full thrombophilia screen which includes aps, Leiden factor v, mthfr, lupus anticoagulant , full thyroid panel, thyroid antibodies and the Nk cells

I know a lot of people that have had success with him x

Hi.
I am not sure that I could get an NHS refferal to him. My gyne really doesn't like him so will doubt he will send his patients his way. I am seeing another consult at a recurrent miscarriage clinic so will see what they say.
I have had tons of bloods taken including factor V but I am going to ask for the list when I go in for my hysteroscopy in two weeks time.
I am going to book a place on the open event at the new life clinic at the end of the month to find out more as I know that lots of women have success with Dr Shehata X

 

[Hope39]

Petit Pas - glad your local hospital is using different treatments in their clinic x

Theiska - I'm fuming at your horrible colleague - what an awful thing to say! As if it isn't hard enough without that. x

Trying - hope the genetic tests come back soon, have you had karyotyping too? If the results are good for for the response trial, there would be another one with more women, we'll have to wait and see - I've been told we will find out whether we got the active drug or placebo at the end of this year when all the results are in so hopefully it'll be made public at that time. I'm really hoping something will come of it, it would be great for women to be offered an option after three losses and as there is a clinical trial there would be enough evidence that all consultants should support the treatment.

I had thyroid tests (also had T3 checked privately), lupus, thromophilia screen inc heritable disorders like Factor V Leiden, anti-phospolipid syndrome testing, karyotyping on me and OH, my GP did a rheumatology profile to check for auto-immune issues, privately I had a homocysteine test to check for MTHFR and a vitamin D test. I'm presuming you have a referral to a recurrent miscarriage clinic? Hope you get some answers from the hysterocopy and genetic tests x

Hi blueblue

Just seen this and that I never replied!
We are having karyotyping done in the pregnancy tissue. Still waiting for the results. It's only just been over 4 weeks so may be a while yet.
That's will be really interesting to see if you got the placebo or the active drug. Really hope it made a significant difference. Any treatment for RM is amazing. Any idea how it does help?
I have now been reffered to a consultant that has an interest in RM. I got my letter through the other day that the gyne sent to my GP. Basically says that if genetics and hysteroscopy come back clear we just have to try again and have early monitoring, more scans blood tests etc. Not sure I am happy with that. That odds are in our favour yes, but with me I think it's either 0% or 100% not this 70% that you will have your own child. What if we are in the 30% that can't. Trying again terrifies me along with the months and months of trying again. Especially if it ends badly. I just don't know where to go next. Is it worth going private now? Or do we try one more time?
Wow you have had loads of tests! I bet the NHS don't do half of those. I am going to ask for a list of the ones that I have had next time I go to the hospital as I want to keep track.

Will let you know how the hysteroscopy goes in a couple of weeks time. Hoping the genetics results are back not too long after. X

Trying - I would ask for a referal to me Shehata , he has his own private clinic but you can see him on the nhs . He runs most of the tests blueblue mentioned, he does a full thrombophilia screen which includes aps, Leiden factor v, mthfr, lupus anticoagulant , full thyroid panel, thyroid antibodies and the Nk cells

I know a lot of people that have had success with him x

Hi.
I am not sure that I could get an NHS refferal to him. My gyne really doesn't like him so will doubt he will send his patients his way. I am seeing another consult at a recurrent miscarriage clinic so will see what they say.
I have had tons of bloods taken including factor V but I am going to ask for the list when I go in for my hysteroscopy in two weeks time.
I am going to book a place on the open event at the new life clinic at the end of the month to find out more as I know that lots of women have success with Dr Shehata X

Don't ask your gynae my gp refered me no questions asked. I think my mc consultant only found out after I lost isaac at 27w because I never seen him after my 6th loss and i then got discharged from him because I was pregnant and progressing well x

 

[blueblue]

I hope you get the results back soon.

Most of my tests were NHS ones, some clinics will also do karyotyping of you and your partner to check for a balanced translocation (where the chromosomes switch place) but I'm not sure if they all do. The drug in the response trial raises the white blood count, they think it works by changing the immune system.

Like Hope said, ask your GP for the NHS referral. I understand why your consultant feels it's controversial, but Mr Shetata has had a lot of success and I know it's really hard to go through another pregnancy without trying something new x

 

[Trying4first1]

Petit Pas - glad your local hospital is using different treatments in their clinic x

Theiska - I'm fuming at your horrible colleague - what an awful thing to say! As if it isn't hard enough without that. x

Trying - hope the genetic tests come back soon, have you had karyotyping too? If the results are good for for the response trial, there would be another one with more women, we'll have to wait and see - I've been told we will find out whether we got the active drug or placebo at the end of this year when all the results are in so hopefully it'll be made public at that time. I'm really hoping something will come of it, it would be great for women to be offered an option after three losses and as there is a clinical trial there would be enough evidence that all consultants should support the treatment.

I had thyroid tests (also had T3 checked privately), lupus, thromophilia screen inc heritable disorders like Factor V Leiden, anti-phospolipid syndrome testing, karyotyping on me and OH, my GP did a rheumatology profile to check for auto-immune issues, privately I had a homocysteine test to check for MTHFR and a vitamin D test. I'm presuming you have a referral to a recurrent miscarriage clinic? Hope you get some answers from the hysterocopy and genetic tests x

Hi blueblue

Just seen this and that I never replied!
We are having karyotyping done in the pregnancy tissue. Still waiting for the results. It's only just been over 4 weeks so may be a while yet.
That's will be really interesting to see if you got the placebo or the active drug. Really hope it made a significant difference. Any treatment for RM is amazing. Any idea how it does help?
I have now been reffered to a consultant that has an interest in RM. I got my letter through the other day that the gyne sent to my GP. Basically says that if genetics and hysteroscopy come back clear we just have to try again and have early monitoring, more scans blood tests etc. Not sure I am happy with that. That odds are in our favour yes, but with me I think it's either 0% or 100% not this 70% that you will have your own child. What if we are in the 30% that can't. Trying again terrifies me along with the months and months of trying again. Especially if it ends badly. I just don't know where to go next. Is it worth going private now? Or do we try one more time?
Wow you have had loads of tests! I bet the NHS don't do half of those. I am going to ask for a list of the ones that I have had next time I go to the hospital as I want to keep track.

Will let you know how the hysteroscopy goes in a couple of weeks time. Hoping the genetics results are back not too long after. X

Trying - I would ask for a referal to me Shehata , he has his own private clinic but you can see him on the nhs . He runs most of the tests blueblue mentioned, he does a full thrombophilia screen which includes aps, Leiden factor v, mthfr, lupus anticoagulant , full thyroid panel, thyroid antibodies and the Nk cells

I know a lot of people that have had success with him x

Hi.
I am not sure that I could get an NHS refferal to him. My gyne really doesn't like him so will doubt he will send his patients his way. I am seeing another consult at a recurrent miscarriage clinic so will see what they say.
I have had tons of bloods taken including factor V but I am going to ask for the list when I go in for my hysteroscopy in two weeks time.
I am going to book a place on the open event at the new life clinic at the end of the month to find out more as I know that lots of women have success with Dr Shehata X

Don't ask your gynae my gp refered me no questions asked. I think my mc consultant only found out after I lost isaac at 27w because I never seen him after my 6th loss and i then got discharged from him because I was pregnant and progressing well x

No way would I ask my gyne. Would be a definite NO.
Sorry for your loss of baby Issac. Must have been such a hard turn for you. A friend of mine lost her little girl at 21 weeks. We were all so devastated.
Can't wait to go back to the hospital. Under two weeks now 😊X

 

[Trying4first1]

I hope you get the results back soon.

Most of my tests were NHS ones, some clinics will also do karyotyping of you and your partner to check for a balanced translocation (where the chromosomes switch place) but I'm not sure if they all do. The drug in the response trial raises the white blood count, they think it works by changing the immune system.

Like Hope said, ask your GP for the NHS referral. I understand why your consultant feels it's controversial, but Mr Shetata has had a lot of success and I know it's really hard to go through another pregnancy without trying something new x

I'm not sure if my clinic do that or not. It's something I am going to ask them about when I next go.
That's interesting about the white blood cell count. Can't wait to hear about the findings and whether the trial was a success.
This is the thing. I don't want to go through another pregnancy without trying something new. I feel like we need to try something. But I am getting the impression that we will just be asked to try again. In really not happy with that. I've had three losses already. Something must need to change X

 

[blueblue]

I hope you get a doctor who is willing to try something, being asked to try again without is so hard x

 

[Trying4first1]

I hope you get a doctor who is willing to try something, being asked to try again without is so hard x

Thanks Blue. I really don't feel happy to try again without a treatment plan. Just don't know what to do. I feel like something is wrong. I knew last time it would go wrong again even though I had MS. Really wouldn't know what to do. DH is now against DR S. But he has agreed to go to the open eve with me this March to at least find out more xx

 

[blueblue]

I felt the same, I didn't want to try again without some kind of treatment. I would definitely try and get your gp to do an NHS referral to Dr S, I'm not sure about waiting times but you wouldn't have to go private then. Is your OH unsure about the treatment? x

 

[Hope39]

I hope you get a doctor who is willing to try something, being asked to try again without is so hard x

Thanks Blue. I really don't feel happy to try again without a treatment plan. Just don't know what to do. I feel like something is wrong. I knew last time it would go wrong again even though I had MS. Really wouldn't know what to do. DH is now against DR S. But he has agreed to go to the open eve with me this March to at least find out more xx

What is your husband unsure About? There has been a ton of girls from this thread that have seen mr S and now have babies

Xx

 

[Trying4first1]

Hi ladies
I think it's the treatment he is unsure about as there have been few deaths from using intralipids for high NK cells.
However, that may not be the case for us as we do not yet know what our issue or.
Hopefully after this open evening he will have more of an open mind. Xx