Thrombophilia positive (mc ment)

Thrombophilia positive (mc ment)

minniet
minniet

January 8th, 2012, 2:48 am #1

Hi:

For almost 8 years my husband and I have tried and tried to have a child, and despite my high fsh, I always got a couple of good quality embies during my numerous ivfs with oe. I have had low chemicals with every ivf with my own eggs and a miscarriage after heartbeat.

I tried to do the repro immunology thing myself -- had my OBGYN run the tests, I thought -- she did an antiphospholipid panel and saw a minor clotting disorder, but did not think much of it. I did a donor cycle with a friend donating, and despite good embies, no pregnancy on the fresh of frozen. I was skeptical, and thought I could figure it out myself.

This past year, before we tried an agency donor and gave it one last shot, I changed to an RE who is also an RI, and went ahead and let him run all the bloodwork and panels - and my nurse just called tonight to tell me I had a positive thrombophilia panel, with MTHR and numerous factors. I will get more information about it.

I am sort of reeling that I looked into all of this but only in a half-a..., skeptical way, and perhaps have prevented my success all this time. I just don't believe someone has as many failures as I have without something to detect. (Husband has had a serious workup and he is better than average).

I am now thrilled that we can be hopeful for our upcoming cycle, but also sad looking back on everything we have been through, the toll it has taken on us financially, emotionally, and even though I feel like I have moved on, this makes me mourn the genetic connection again...

It's definitely worth looking into an RI if you have had so many failure with good embies.
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Joined: January 19th, 2007, 7:18 pm

January 8th, 2012, 4:26 am #2

I'm so sorry you had to go through so much. Your journey in many ways mirrors mine, including starting with testing through an ob/gyn, but ultimately having to seek out an RI.

It's a very difficult road to go down & determining whether or not to explore it is also difficult.

In my case, I was successful with my 1st DE FET after becoming a Beer Center patient. That was after 2 failed fresh DE cycles & 1 failed DE FET. I also have several clotting mutations in addition to MTHFR, although in my specific case, very high NKs were the main issue.

I very much wish you success in your upcoming cycle.
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Joined: July 10th, 2009, 8:18 pm

January 8th, 2012, 4:46 am #3

Hi:

For almost 8 years my husband and I have tried and tried to have a child, and despite my high fsh, I always got a couple of good quality embies during my numerous ivfs with oe. I have had low chemicals with every ivf with my own eggs and a miscarriage after heartbeat.

I tried to do the repro immunology thing myself -- had my OBGYN run the tests, I thought -- she did an antiphospholipid panel and saw a minor clotting disorder, but did not think much of it. I did a donor cycle with a friend donating, and despite good embies, no pregnancy on the fresh of frozen. I was skeptical, and thought I could figure it out myself.

This past year, before we tried an agency donor and gave it one last shot, I changed to an RE who is also an RI, and went ahead and let him run all the bloodwork and panels - and my nurse just called tonight to tell me I had a positive thrombophilia panel, with MTHR and numerous factors. I will get more information about it.

I am sort of reeling that I looked into all of this but only in a half-a..., skeptical way, and perhaps have prevented my success all this time. I just don't believe someone has as many failures as I have without something to detect. (Husband has had a serious workup and he is better than average).

I am now thrilled that we can be hopeful for our upcoming cycle, but also sad looking back on everything we have been through, the toll it has taken on us financially, emotionally, and even though I feel like I have moved on, this makes me mourn the genetic connection again...

It's definitely worth looking into an RI if you have had so many failure with good embies.
So glad that you took it upon yourself to start the ball rolling about getting these tests done and that your new RE took things seriously enough to look at everything. I am still in shock that after all we go through both with OE & DE IVF cycles, all of the tests that the RE's run on everything else, that none of them checks automatically for clotting & immune issues. My DH and I were just talking about it again the other day. I, too, had a few OE cycles that had a decent embryo and then got BFP with my first donor cycle. As you know though, I lost our twin boys at 23 weeks and no one knew why. Had just been to the OB and everything was perfect. Thankfully, she was proactive and ran a full thrombophillia panel on me only to find out I had 3 blood clotting disorders and then pathology showed this is why I lost our boys who were perfectly healthy babies, just born too early. Just makes you sick to think what "might have been" both with our OE and especially, our precious boys. Now, with Lovenox this cycle, I am set to deliver a healthy baby girl next month. I hope treatment will make all the difference in the world for you too. Knowing what I do now, I would not even start out on any IVF cycle again without being tested. There is just too much at stake.

Glad you have found your new donor and your new RE. I can't wait until you cycle and am sure success is right around the corner for you.
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DeeinNYC
DeeinNYC

January 8th, 2012, 5:46 am #4

Hi:

For almost 8 years my husband and I have tried and tried to have a child, and despite my high fsh, I always got a couple of good quality embies during my numerous ivfs with oe. I have had low chemicals with every ivf with my own eggs and a miscarriage after heartbeat.

I tried to do the repro immunology thing myself -- had my OBGYN run the tests, I thought -- she did an antiphospholipid panel and saw a minor clotting disorder, but did not think much of it. I did a donor cycle with a friend donating, and despite good embies, no pregnancy on the fresh of frozen. I was skeptical, and thought I could figure it out myself.

This past year, before we tried an agency donor and gave it one last shot, I changed to an RE who is also an RI, and went ahead and let him run all the bloodwork and panels - and my nurse just called tonight to tell me I had a positive thrombophilia panel, with MTHR and numerous factors. I will get more information about it.

I am sort of reeling that I looked into all of this but only in a half-a..., skeptical way, and perhaps have prevented my success all this time. I just don't believe someone has as many failures as I have without something to detect. (Husband has had a serious workup and he is better than average).

I am now thrilled that we can be hopeful for our upcoming cycle, but also sad looking back on everything we have been through, the toll it has taken on us financially, emotionally, and even though I feel like I have moved on, this makes me mourn the genetic connection again...

It's definitely worth looking into an RI if you have had so many failure with good embies.
I'm so happy for you that you pursued this and now will have answers and a game plan. I also have a MTHFR mutation as well as elevated NK cell activity. I will say that most clotting disorders usually come into play once you are past the 1st trimester. With so many chemicals and no implantation, I suspect that your Dr found immune issues too. The good news is that now that you know...it can be treated.

When I first found out that I had MTHFR, I was very upset that I was not given testing for clotting disorders until I went to a clinic that treats these and immune issues. Testing for clotting disorders is inexpensive and there really is no reason this testing should not be routine.
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Joined: June 2nd, 2007, 7:45 am

January 8th, 2012, 7:20 am #5

Hi:

For almost 8 years my husband and I have tried and tried to have a child, and despite my high fsh, I always got a couple of good quality embies during my numerous ivfs with oe. I have had low chemicals with every ivf with my own eggs and a miscarriage after heartbeat.

I tried to do the repro immunology thing myself -- had my OBGYN run the tests, I thought -- she did an antiphospholipid panel and saw a minor clotting disorder, but did not think much of it. I did a donor cycle with a friend donating, and despite good embies, no pregnancy on the fresh of frozen. I was skeptical, and thought I could figure it out myself.

This past year, before we tried an agency donor and gave it one last shot, I changed to an RE who is also an RI, and went ahead and let him run all the bloodwork and panels - and my nurse just called tonight to tell me I had a positive thrombophilia panel, with MTHR and numerous factors. I will get more information about it.

I am sort of reeling that I looked into all of this but only in a half-a..., skeptical way, and perhaps have prevented my success all this time. I just don't believe someone has as many failures as I have without something to detect. (Husband has had a serious workup and he is better than average).

I am now thrilled that we can be hopeful for our upcoming cycle, but also sad looking back on everything we have been through, the toll it has taken on us financially, emotionally, and even though I feel like I have moved on, this makes me mourn the genetic connection again...

It's definitely worth looking into an RI if you have had so many failure with good embies.
and also a kick in the guts after all this time and so very much heartache.
I can understand how bittersweet getting this info must be.
But onward and upward my friend.
Thank god you got this workup done now.
Here's to a fabulous cycle with so many frosties you can make a football team! (with cheerleaders...)
Hugs to you.
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Bharani
Bharani

January 8th, 2012, 11:17 am #6

Hi:

For almost 8 years my husband and I have tried and tried to have a child, and despite my high fsh, I always got a couple of good quality embies during my numerous ivfs with oe. I have had low chemicals with every ivf with my own eggs and a miscarriage after heartbeat.

I tried to do the repro immunology thing myself -- had my OBGYN run the tests, I thought -- she did an antiphospholipid panel and saw a minor clotting disorder, but did not think much of it. I did a donor cycle with a friend donating, and despite good embies, no pregnancy on the fresh of frozen. I was skeptical, and thought I could figure it out myself.

This past year, before we tried an agency donor and gave it one last shot, I changed to an RE who is also an RI, and went ahead and let him run all the bloodwork and panels - and my nurse just called tonight to tell me I had a positive thrombophilia panel, with MTHR and numerous factors. I will get more information about it.

I am sort of reeling that I looked into all of this but only in a half-a..., skeptical way, and perhaps have prevented my success all this time. I just don't believe someone has as many failures as I have without something to detect. (Husband has had a serious workup and he is better than average).

I am now thrilled that we can be hopeful for our upcoming cycle, but also sad looking back on everything we have been through, the toll it has taken on us financially, emotionally, and even though I feel like I have moved on, this makes me mourn the genetic connection again...

It's definitely worth looking into an RI if you have had so many failure with good embies.
Minniet,
I understand you when you said "fiancial, emotionally,...." as you said we have similar situations like having more failures. I wonder though how the other doctor didn't find out. Did it happen after you did the blood work? Who knows? What are RI and RE. I usually see RE and though it means fertility doctor.

Well wishes
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cotton
cotton

January 8th, 2012, 4:46 pm #7

Hi:

For almost 8 years my husband and I have tried and tried to have a child, and despite my high fsh, I always got a couple of good quality embies during my numerous ivfs with oe. I have had low chemicals with every ivf with my own eggs and a miscarriage after heartbeat.

I tried to do the repro immunology thing myself -- had my OBGYN run the tests, I thought -- she did an antiphospholipid panel and saw a minor clotting disorder, but did not think much of it. I did a donor cycle with a friend donating, and despite good embies, no pregnancy on the fresh of frozen. I was skeptical, and thought I could figure it out myself.

This past year, before we tried an agency donor and gave it one last shot, I changed to an RE who is also an RI, and went ahead and let him run all the bloodwork and panels - and my nurse just called tonight to tell me I had a positive thrombophilia panel, with MTHR and numerous factors. I will get more information about it.

I am sort of reeling that I looked into all of this but only in a half-a..., skeptical way, and perhaps have prevented my success all this time. I just don't believe someone has as many failures as I have without something to detect. (Husband has had a serious workup and he is better than average).

I am now thrilled that we can be hopeful for our upcoming cycle, but also sad looking back on everything we have been through, the toll it has taken on us financially, emotionally, and even though I feel like I have moved on, this makes me mourn the genetic connection again...

It's definitely worth looking into an RI if you have had so many failure with good embies.
You WILL hold a baby in your arms one day soon and that will be the kiddo you're meant to have. I'm not an everything-happens-for-a-reason kind of gal EXCEPT when it comes to this crazy IF roller coaster. This is your path and you're on your way to success! Positive MTHFR! Hurray

I'm excited for you. Did you ever get more answers on what happened with your donor's cycle? I know you were concerned about the 3 vs 5 day transfer.
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minniet
minniet

January 8th, 2012, 5:40 pm #8

I'm so sorry you had to go through so much. Your journey in many ways mirrors mine, including starting with testing through an ob/gyn, but ultimately having to seek out an RI.

It's a very difficult road to go down & determining whether or not to explore it is also difficult.

In my case, I was successful with my 1st DE FET after becoming a Beer Center patient. That was after 2 failed fresh DE cycles & 1 failed DE FET. I also have several clotting mutations in addition to MTHFR, although in my specific case, very high NKs were the main issue.

I very much wish you success in your upcoming cycle.
I am very thankful to have had friends before me see this Dr, and to have him be both kind and knowledgeable. He has made this process seem like not a big deal to explore and treat. I am seeing Dr. Acacio (he used to be with SIRM).
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minniet
minniet

January 8th, 2012, 5:41 pm #9

So glad that you took it upon yourself to start the ball rolling about getting these tests done and that your new RE took things seriously enough to look at everything. I am still in shock that after all we go through both with OE & DE IVF cycles, all of the tests that the RE's run on everything else, that none of them checks automatically for clotting & immune issues. My DH and I were just talking about it again the other day. I, too, had a few OE cycles that had a decent embryo and then got BFP with my first donor cycle. As you know though, I lost our twin boys at 23 weeks and no one knew why. Had just been to the OB and everything was perfect. Thankfully, she was proactive and ran a full thrombophillia panel on me only to find out I had 3 blood clotting disorders and then pathology showed this is why I lost our boys who were perfectly healthy babies, just born too early. Just makes you sick to think what "might have been" both with our OE and especially, our precious boys. Now, with Lovenox this cycle, I am set to deliver a healthy baby girl next month. I hope treatment will make all the difference in the world for you too. Knowing what I do now, I would not even start out on any IVF cycle again without being tested. There is just too much at stake.

Glad you have found your new donor and your new RE. I can't wait until you cycle and am sure success is right around the corner for you.
I read your story to my dh last night, as we were both reeling and he was asking why just as you two did. I am so sorry, you have gone through too much. But you truly give us hope. Thank you and sending you blessings.
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minniet
minniet

January 8th, 2012, 5:43 pm #10

I'm so happy for you that you pursued this and now will have answers and a game plan. I also have a MTHFR mutation as well as elevated NK cell activity. I will say that most clotting disorders usually come into play once you are past the 1st trimester. With so many chemicals and no implantation, I suspect that your Dr found immune issues too. The good news is that now that you know...it can be treated.

When I first found out that I had MTHFR, I was very upset that I was not given testing for clotting disorders until I went to a clinic that treats these and immune issues. Testing for clotting disorders is inexpensive and there really is no reason this testing should not be routine.
I just do not understand why this testing is not done routinely. OK, people can disagree all they want about intralipids, but MTHR? I mean, come on.

I do have immune+thyroid+NK+clotting+MTHR, etc.

Thankfully, I am now with an RE who has treated this many times.
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