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MULTIPLE MISCARRIAGES...diagnosed with clotting deficencies?

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MULTIPLE MISCARRIAGES...diagnosed with clotting deficencies?

Postby hopefulalways » Mon Dec 22, 2008 8:19 pm

Hello! I am new to this forum. My dh and I have done IVF/ICSI that resulted in pregnancy but i miscarried around 8 weeks, and then we did FET, and i miscarried again and this time it was a chemical pregnancy.

I insisted on getting more tests completed for multiple pregnancies, and the clotting tests came back and my RE mentioned that I have three different protein deficencies??

I just wanted to know if there was anyone else on here that is in the same or similar situation with a clotting defiecency and has had a healthy pregnancy and was able to carry to term.

My husband and I only have three more on ice, and we wanted to get as much answers as possible before we transfer the last three.

I have an appointment with my hemaltologist in Jan. and i'm hoping that I will get some great news regarding this issue.

I am still waiting on the rest of the tests and i will also be doing a "Day 21 biopsy" as well in Jan. sometime.

Any answers or advice, and experience would greatly be appreciated.

Thank you for your taking the time to read and respond to my post.

:?
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Postby angelaezra » Sat Jan 10, 2009 1:45 am

Hello hopefulalways,

Sorry no one else has replied. But, I have been diagnosed with a clotting problem as well and my RE has prescribed daily baby ASA and heparin shot through the entire pregnancy to ensure my blood is thin with out developing clots. I am currently 15 weeks pregnant and this pregnancy seems to be progressing very well. There is a lot of research about clotting problems during pregnancy and using heparin and other blood thinners.

I hope this helps!

Good luck,

Angela
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1 miscarriage 2002 (nat)
1 ectopic pregnancy 2006 (nat)
1st IVF 10/08-BFP twins/misc-6 1/2 wks & stillbirth 21 wks
2nd FET 6/09-BFN
3rd IVF 2010-April-BFP - DD born 12/7/10

Lost Ashley Nicole Thomas at 21 weeks
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Postby hopefulalways » Mon Jan 12, 2009 5:28 pm

Hello Angelaezra!

THANK YOU VERY MUCH!!! Thank you very much for taking the time to reply to my post, as it does show that I am not alone in this area and there is someone here that I can talk to for support!

By the way..CONGRATULATIONS on your pregnancy! I am very very happy for you! All the best!

So you were prescribed baby aspirin and heparin? If you dont mind me asking, you did mention that you will be on these medications for the entire pregnancy. When did you start taking these medications? And is the heparin expensive?

During the time of waiting for a response, I have been reading alot and researching about clotting problems, and it seems like there are alot of research out there and info during pregnancy. Thank you sooo much for yuor time and taking the time to read and reply to my post.

I am wishing u alllllllll the best with your pregnancy! thanks again!
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Postby angelaezra » Mon Jan 12, 2009 11:05 pm

Hello hopefulalways,

Thanks ... my RE started the baby ASA when I started Lupron (fairly early) and the Heparin was started the week of my egg retrieval. I think day 3 after retrieval. I am not sure about the cost of Heparin as my insurance covers it but it should be fairly cheap as it is generic. If you google cost of Heparin, you should be able to see the average cost of Heparin. But, keep in mind most of the time the costs you see are for more than a few months but you should be able to determine if it is one month or two months, etc.

Also, you asked about using Heparin and Baby ASA the entire pregnancy. Yes, most RE's will prescribe it the entire pregnancy if it has been determine or suspected that a patient has a clotting problem. Some RE's will prescribe it for patients with mutliple miscarriages without clotting problems but they will stop the Heparin after 12 weeks and the baby ASA will continue.

Good luck,

Angela
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1 miscarriage 2002 (nat)
1 ectopic pregnancy 2006 (nat)
1st IVF 10/08-BFP twins/misc-6 1/2 wks & stillbirth 21 wks
2nd FET 6/09-BFN
3rd IVF 2010-April-BFP - DD born 12/7/10

Lost Ashley Nicole Thomas at 21 weeks
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Postby amers76 » Wed Jan 14, 2009 4:16 pm

Hi hopefulasalways,

I am actually waiting to find out if I have a clotting issue or not. I have had two IVF pregnancies ending in miscarriage (very early at 6 and 7 weeks). Because of this I nam ow going through a TON of tests to determine if I have a clotting issue, auto immune deficiency, chromosome issue, etc. They said the tests take a couple weeks to find out so I am anxiously awaiting. Not sure if I want them to find something or not. On the one hand, it would be nice to know what the issue is so we can tackle it and correct it. On the other hand, our original issue was male factor, so having two challenges to overcome is scary too.

We also still have 1 frozen embryo, but are waiting to learn more before moving forward with anything.

I was so relieved to read this post and find out there are things you can do to correct clotting issues and still have a healthy and safe pregnancy.

Best of luck to you with you 3 frozens and your remaining tests. Keep me posted and I will be going through the same things.

So glad I read your post! :D
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Postby hopefulalways » Mon Jan 19, 2009 3:14 pm

angelerza: wow..thank you sooooooooo much for your kind words and responding and answering alll my questions. This week i will be going to my hematologist appointment and will be finding out my exact diagnosis regarding my clotting factors. I truly appreciate your time in answering my questions...wishing u alllllllll the best! Have a great week!

amers: welcome! it seems like you and I are very similar with our stories here...it's great to know that we are not alone and that we can confide in others. I am now going through two challenges..my dh has a male factor (azoospermia) and now my clotting factors...so now it's two challenges.....i am just praying that this is the storm, and then the sun will shine now..and that rainbow will come out...and everything will be alright!

I did sooo many tests as well...all the tests possible....well i hope my RE did...they took like at least 12 bottles from my arm..and I stopped counting after 10...lol... :lol: but to me it was worth it...if they are able to do anyting to help my situatioin it will be great...even if it's just to rule out any problems of my own..then at least we know that it might just be the sperm or embryo quality and abnormalities. I got a bill in the mail for $110 for two of the blood work that I had done that is not covered by OHIP..and now i'm waiting for the rest of my results..i pray that some more if not all are back when i go in to do my biopsy on thursday. As i do know that it does take abit of time to get them back...especially the genetic chromosome one and such...we'll see!! Getting abit anxious waiting for it..i was going to call them to find out if anymore of the tests came back..but i'll just wait for when i see her on thursday. As i do know that they usually only call when something is wrong, and not when everything is good...so we'll see...

I have my appointment this week with my hematlogist tommorow, and there i am hoping to get a clear picture on what's goign to happen next....and then i go in to see my RE on thursday for my day 21 biopsy/uterine biopsy. Have you gotten one of those done before? It will be my first time for it..apparently they say that it 's good cause it checks for any infections, abnormalities etc...and my RE says that at times, it might even help with implantation and making the lining of your uterus more 'sticky' for the embryos to implant and stick. So...i would love to get it done for both reasons.

Both of our issue is carrying to term...and by faith..this year will be our year...and i pray that you and I will get our dream.

Wishing u also the best of luck with all your tests and looking forward to hearing about your updates and journeying with you.

Take care and have a great week!
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Postby amers76 » Wed Jan 21, 2009 1:04 am

Yes, our stories do seem very similar. It's comforting to know there's someone out there facing the same challenges. I agree with you, it's worth all of the test to find out if there is something more I can be doing to make our dreams come true. They did all of my blood tests on 1/5/2009 and I won't get any results back until 2/5/2009. I guess they wanted to sit down to go over EVERYTHING with me all at once, but the waiting is making me crazy. Since the chromosome test takes 4 weeks it's a long wait. I'd rather hear results as the tests come back so I could at least eliminate one issue at a time.

Our male factor issue is low motility and some morphology issues. Of course, different doctors have told us different diagnosis when it comes to the morphology part. It's so hard to know what to believe sometimes.

How did your appointment with the hematologist go? Did you learn more about your specific diagnosis? Did they explain what causes the clotting issues and what can be done to help solve that issue? Sorry for all the questions! Please don't feel like you have to answer them all if you don't want to. :)

I have never had a day 21 biopsy, but it sounds like something I should ask my RE about. Perhaps that what she plans to do after we get our blood tests back. Hope it went well for you!

Let me know how everything goes. I'm sending you lots of positive vibes. I'm praying this is our year too! :)
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Postby hopefulalways » Fri Jan 23, 2009 2:57 pm

Hi Amers, glad to hear from you! And thank you for your kind words and support!

Okay...so i did have my hematolgist appointment and well not much was really said... :? so i can't really answer all the questions because we didnt' really get into it indepth....i was hoping for some more clarification as well right away....but the Dr. is really really nice..and she just wants to do more tests..as she said that while looking at my results and when I had the test done..it was during the time of my miscarriage and she said that your blood does really drop and she said for me to have low levels on all counts unrealistic....soo...she thinks that it's just an errror and will do further further testing for the APA (anti phospholipdids sry for spelling) and more indepth thrombophilia tests etc...so i have my followup apppointment in 4 weeks time..and hopefully all tests will be back in and therefore we can discuss our next move on things...she said that if any results come back with a clotting issue, than most likely i will be on some type of blood thinner to help with the cycle and to avoid any blood clots. And she said she will then explain more indepth with the correct diagonisis...as she said by looking at my results, she can not diagnose me with anything without repetitive tests. So we shall see!! :)

Also I did my unterine biopsy yesterday..it wasn't too bad...just abit of crampy for a while, but it wasn't too bad. My RE said she would also do a PAP test, and every other updated tests while she was doing the uterine biopsy at the same time, to get a overall good examination and tests...she did a test called ureaplasma and a test to also check to see if there is any yeast build up or anything else etc....so i'm very happy that she's trying her best to do all tests she can for me. (by the way, my RE is pregnant and will be leaving in Feb. so i will be having one of the other two doctors do my FET for me once all things get sorted out...) she was hoping that i was going to do it this cycle but i can't..cause i prefer waiting for the test results....but she did mention that she will try and come in and do it for me if she can....or do the followup appointments..but the cycling monitoring will be done by the other two RE's at the clinic...i was abit sad ..but i'm happy for her!

So that's whats new with me...and now eagerly waiting the results just like you....before u know it..you'll have all your tests back!!! I guess it was too early to still for my tests, i did them all on Dec.1 but still nothing..interesting enough..only the clotting ones..so we'll see what happens when i go back on Feb. 10th to meet with her regarding my biopsy results, as by that time something should be there! I hope!!

So how is your dh handling everything? My dh and I find things abit difficult at times with all the extra finances and such that we have to put through but we're coping....but i said to him that i really want to go and take a trip or something but then i alawys say to myself..well that money i could be using and saving for our cycle and such..i dont know..it's hard at times....geeez..but we'll get there!!! one day at a time that's how i'm trying to take it....

You have a wonderful weekend and hoping to hear from you soon!take care
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Postby amers76 » Wed Jan 28, 2009 1:13 am

Hi hopefulalways!

I was so happy to get your message. It does help knowing our situations are so similar.

I'm glad to hear that you like your hematolgist and she is so thorough. I must be difficult to have to wait for another round of tests, but you seem to have a very patient and positive attitude about it all. It's good they are checking everything they can so you have the best possible chance with your frozen buddies!

I had sort of been thinking that when we get our results back that would the start of a new plan, but now I see I should be prepared for the possibility of more tests after that. We get our results back next Thursday so I'm anxiously awaiting that appointment. I guess part of the wait it good because I still don't feel like my body is quite right since the miscarriage. How have you been handling the waiting?

My DH has been handling things pretty well. I know that this has been hard on him, but he seems to try and cover it up a lot He doesn't like to talk about things as much as me which can be hard sometimes. We are taking a quick trip to Florida mid-Feb to visit his Dad which I think will be a nice break for us from everything. We completely had the same reaction about considering taking a trip to sort do a little something for ourselves that is fun. The huge financial aspect of IVF makes things difficult, so we made our trip visiting family to keep expenses down. It won't be the same as a getaway with just the two of us, but it's something! :D

That's disappointing that your RE won't be able to do your next cycle. It sounds like you like her as your doctor, which I imagine would be really nice. We haven't been thrilled with our RE, but we get some insurance coverage at the clinic we're at so we're hesitant to change. But then I always wonder if I would be more successful with a different doctor? I just don't always feel like my RE is on top of our case. For example, we've had incorrect meds prescribed that we had to call and have corrected. Kind of scary.

I'm definitely going to ask about the uterine biopsy in our appt next week. Who knows, maybe one of these tests will give us the key we're missing somehow. :)

One more week and at least we'll know a little bit more! I hope you are having a good week. Looking forward to hearing from you! :)
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Postby Annie » Wed Jan 28, 2009 10:28 pm

Hi hopefulalways,
Not sure if this will be any help but i thought id write because I too have a blood clotting issue which has resulted in multiple mc and can only concieve through ivf. The first two BFPs ended early on ( 5/6 weeks) I then begged for the usual mc tests to be performed despite usually needing 3mc to qualify for the tests here in England. Only one test showed any probs and that was still just inside the normal range so they told me to take low dose aspirin but warned that since i didnt show an actual clotting disorder it probably wouldnt make a difference.

The next ivf i tested strongly positive again but also began to bleed again. Good news is despite at times heavy bleeding /cramping on and off for 3 + weeks this determined little embryo clung on. Shes now just turned 4 and is upstairs fast asleep.
Since I had frozen embryos from her cycle we have tried to repeat this miracle again. The FET was -ve so we decided to have another fresh go. This time the fresh go was also -ve but next FET was v strongly +ve. However despite the aspirin this time i mced again. was about to close the door on ivf for ever aftre that when the consultant said hed refer me to a Mr Raj Rai in london ( st Marys) who is a multiple mc expert. He re did some of the mc tests and also did a thromboelastgram which apparently looks at how the whole blood clots rather than pinpointing one particular protein deficiency in the clotting chain. This showed a clear thrombophilia ( which means I have hyperclottable blood outside of preg which gets worse when preg, this interferes withe embryo invading the endometrium and with cell to cell communication... I think!) On the plus side there is treatment that can make the difference ( heparin and a bigger low dose aspirin). I just had a biochemical preg however despite following this regime. i guess that might have indicated that it wasnt my poor old body malfunctioning this time and that the embryo couldnt continue. Sorry long post hope some bits are useful. We have 3 frozen for a final FET then am stopping this madness for good!! I dont know how my lovely daughter made it through, I wish you similar success
annabel
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Postby hopefulalways » Thu Jan 29, 2009 4:14 pm

Hi annie! Wow thank you very much for your wonderful story and for sharing your experience with me. You are truly blessed with your beautiful daughter!! I am very happy for you!

And I am praying that your last 3 FET will be the one for you!

I am currently waiting for my tests to come back, as my hematologist also did the full work up for thrombophilia as well. So i'm praying that I will get an answer very soon!

Thanks again Annie for sharing your experience and giving me some info. I pray it works out for you and you will carry to term this year!! Thinking of you

When will you be doing your transfer?

Wishing u all the best!!

hopefulalways
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Postby Annie » Fri Jan 30, 2009 8:52 pm

Hello again hopeful always and amers76,
think we ll try in a couple of months , id like to squeeze it in before my 40th birthday in may. Id prefer to leave it longer and work on getting fitter both physically and mentally but i think Id better not put it off too long. I cant beleive I started ttc when I was 30. think a decade is enough! Although i know Id find it infinately harder to give up if i hadnt had a success.
Ill keep an eye out for you both and let you know if I hear any mc and clotting issues news. Good luck and take care
Annabel
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Postby hopefulalways » Tue Feb 03, 2009 4:57 pm

Hello Annabel. Great to hear from you. And happy early birthday to you when it comes around! So it will be in a couple of months which is great, to give your mind and body enuogh time to get back into shape. I also agree on that...I waited two months ,well two normal cycles, and now waiting for results and see what they say.

I have been exercising alot and trying to get back into shape as well. I pray that this year will be our year!

Take care and i'll be checkin this area for any updates on you both. All the best!
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