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MrsTeacher1
LIF Infant
Member since 2/13 317 total posts
Name:
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Back from Dr Kofinas & findings...
Hi Girls.
Wow what a night. I was at his office for close to 3 hours.
He found some things in my blood work. He found I have compound heterozygous (rather uncommon) MTHFR Gene Polymorphism. That means my body isnt' breaking down folic acid; so I'll have to go on Metanex basically for the rest of my life.
In addition to that he found thrombophilias; the PAI-1 Gene Polymorphism Homozygous 4G/4G. I'm writing this all down in case some of you are familiar with it. It puts me at a high pre-disposition for diabetes later in life and also gestational diabetes so I have to take Metaformin 2x daily. Then once we start TTC again after I ovulate I"ll need the Lovenox.
He is also putting me on Eskimo 3 fish oil, baby aspirin, vitamin D3, an organic prenatal, N-Acetyl Cysteine, and Pearl IC probiotic!!!!!!!!!
So it was a bit overwhelming getting all this information and the many pills I"ll be popping... but he seems confident and even though I was nervous with all the news he acted like it wasn't such a big deal.
He also recommended continuing to go to acupuncture and he recommended his own person that he likes.
So.. that's that. If anyone has a similar diagnosis or experiences with this, please let me know! 
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Posted 11/11/13 8:29 PM  |
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babydreams21
LIF Adult
Member since 12/12 3656 total posts
Name:
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Back from Dr Kofinas & findings...
Glad you got some answers. I bet it was overwhelming but it seems like all of the things found can be taken care of with supplements and meds. I don't have any advice but I'm waiting for some BW back too from my RE. My BW was the loss panel and a few other tests. I'm wondering if mine will come back with MTHFR as well. Did your insurance cover going to Kofinas for all the BW? Just wondering about cost since I may need more extensive testing. What RE are you seeing? Does your RE work with Kofinas?
I hope everything works out for you! Best of luck!
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| Posted 11/11/13 8:39 PM |
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moonmist09
Thank you, St. Gerard!
Member since 2/11 5043 total posts
Name:
Antonella
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Back from Dr Kofinas & findings...
at least you have answers!!!!!!!!!! it sounds overwhelming but keep positive, it will happen for you!
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| Posted 11/11/13 8:54 PM |
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Melis2700
LIF Adolescent
Member since 10/09 508 total posts
Name:
Melissa
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Re: Back from Dr Kofinas & findings...
I was there today too! I wonder if u saw you! I have a lot of the same things and am on metanex and metaforim when my belly tolerates it! I am pregnant with twins and have many issues making me high risk. Good luck! U r in good hands!
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| Posted 11/11/13 9:20 PM |
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Hope2009
Thankful
Member since 1/09 4429 total posts
Name:
A
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Re: Back from Dr Kofinas & findings...
I'm glad you have answers and can go on and be proactive in the needed treatment. 
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| Posted 11/12/13 6:22 AM |
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hoping2013
LIF Toddler
Member since 1/13 435 total posts
Name:
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Back from Dr Kofinas & findings...
Hi, I have the 4g/4g mutation as well and am on metformin 2 x daily - 1500mg total. Also baby aspirin, high dose folic acid and vitamin d. I am going to do my first IVF this upcoming cycle so we shall see if it helps. I also have thyroid issues and when I was dx 4 years ago, I was also pre-diabetic at the time. I am not a heavy person and it doesn't run in my family so it was quite a shock. Was it b/c of this 4g/4g crap and a tendency towards it? I guess so....... good luck to you!
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| Posted 11/12/13 7:50 AM |
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babyfever24
LIF Adult
Member since 1/11 3340 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Good luck moving forward! DH and i are also on matenax….its pricey!!!
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| Posted 11/12/13 8:11 AM |
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ready2go
LIF Adult
Member since 1/08 2379 total posts
Name:
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Re: Back from Dr Kofinas & findings...
I am so happy you got answers! I was there yesterday too, filling out paperwork! I am going there today for more bloodwork (went to Lab Corp yesterday for 26 other vials  ). I am praying he finds something....which I never thought I would say!
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| Posted 11/12/13 8:58 AM |
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MrsTeacher1
LIF Infant
Member since 2/13 317 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by babydreams21
Glad you got some answers. I bet it was overwhelming but it seems like all of the things found can be taken care of with supplements and meds. I don't have any advice but I'm waiting for some BW back too from my RE. My BW was the loss panel and a few other tests. I'm wondering if mine will come back with MTHFR as well. Did your insurance cover going to Kofinas for all the BW? Just wondering about cost since I may need more extensive testing. What RE are you seeing? Does your RE work with Kofinas?
I hope everything works out for you! Best of luck!
I don't know yet if insurance covered the BW.. and since Kofinas is OON I have to pay my deductible first, which is $1000.
My RE doesn't specifically work with Kofinas but he's more than willing to follow his protocal.. and Kofinas seemed find with me going to Kreiner under his protocol which I'm really glad about. Basically he'll just be doing my monitoring.
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| Posted 11/12/13 6:27 PM |
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MrsTeacher1
LIF Infant
Member since 2/13 317 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by Melis2700
I was there today too! I wonder if u saw you! I have a lot of the same things and am on metanex and metaforim when my belly tolerates it! I am pregnant with twins and have many issues making me high risk. Good luck! U r in good hands!
Oh wow how funny! I was there in the early evening with my hubby!! How far along are you?
I'm getting the Metanex delivered soon.
Yes the Metaforim gave me major diarrhea this morning.. and my stomach is still funny. I'll only take it at night for a little while until I adjust. So do you not take it all the time????
I'm glad to "meet" someone else who's seeing Kofinas and is happy there! He was more "business like" than I thought he'd be though, but no complaints...
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| Posted 11/12/13 6:29 PM |
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MrsTeacher1
LIF Infant
Member since 2/13 317 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by hoping2013
Hi, I have the 4g/4g mutation as well and am on metformin 2 x daily - 1500mg total. Also baby aspirin, high dose folic acid and vitamin d. I am going to do my first IVF this upcoming cycle so we shall see if it helps. I also have thyroid issues and when I was dx 4 years ago, I was also pre-diabetic at the time. I am not a heavy person and it doesn't run in my family so it was quite a shock. Was it b/c of this 4g/4g crap and a tendency towards it? I guess so....... good luck to you!
Hi! Do you also see Kofinas? We seem to have similar situations. Yes I think it's because of the 4g/4g mutation that I have the tendency for diabetes-- I'm also in good health and I eat healthfully so I was really shocked.. and my parents don't have it either. He said what I have (homozygous?.. this stuff is all new to me!!) is LESS common. How wonderful for me!
Is your stomach used to the Metformin?
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| Posted 11/12/13 6:32 PM |
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MrsTeacher1
LIF Infant
Member since 2/13 317 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by ready2go
I am so happy you got answers! I was there yesterday too, filling out paperwork! I am going there today for more bloodwork (went to Lab Corp yesterday for 26 other vials ). I am praying he finds something....which I never thought I would say!
Good Luck! I hope you get what you are looking for.. ha ha.
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| Posted 11/12/13 6:33 PM |
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babydreams21
LIF Adult
Member since 12/12 3656 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by MrsTeacher1
Posted by babydreams21
Glad you got some answers. I bet it was overwhelming but it seems like all of the things found can be taken care of with supplements and meds. I don't have any advice but I'm waiting for some BW back too from my RE. My BW was the loss panel and a few other tests. I'm wondering if mine will come back with MTHFR as well. Did your insurance cover going to Kofinas for all the BW? Just wondering about cost since I may need more extensive testing. What RE are you seeing? Does your RE work with Kofinas?
I hope everything works out for you! Best of luck!
I don't know yet if insurance covered the BW.. and since Kofinas is OON I have to pay my deductible first, which is $1000.
My RE doesn't specifically work with Kofinas but he's more than willing to follow his protocal.. and Kofinas seemed find with me going to Kreiner under his protocol which I'm really glad about. Basically he'll just be doing my monitoring.
Thanks. So you had to pay 1000 at your first consult appointment? I'm just trying to figure out how the OON works. Are you an NYC teacher? I have GHI so just trying to figure this all out. I had some testing done with my RE- 20 vials- but not as extensive as your testing seems. I should be getting the results this week and may go to another RE or Kofinas for further testing. I have an appointment with SIRM in February. So the meds you will be taking are they just for while you are cycling? Would you need them after you had your child? All this immune stuff is new to me. Just trying to learn as much as I can. How often will you go back to Kofinas while cycling with your RE? Thanks!
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| Posted 11/12/13 7:19 PM |
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hoping2013
LIF Toddler
Member since 1/13 435 total posts
Name:
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Re: Back from Dr Kofinas & findings...
hi, yeah, the metformin is ok after a while. Always take it with food and stick to healthier stuff. I did have bouts of nausea and food aversion so it definitely messes with your relationship with food. But overall its ok. Benefit: weight loss!
I started on 750 for 2 weeks then increased to 1500.
I saw dr. alkady in West Islip. What is the lovenox for as I wasn't prescribed that. Although I don't think I had the MTHR thing that you had...gotta go look it up. I don't fully understand it either but whatever helps!
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| Posted 11/13/13 6:23 AM |
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ready2go
LIF Adult
Member since 1/08 2379 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by hoping2013
hi, yeah, the metformin is ok after a while. Always take it with food and stick to healthier stuff. I did have bouts of nausea and food aversion so it definitely messes with your relationship with food. But overall its ok. Benefit: weight loss!
I started on 750 for 2 weeks then increased to 1500.
I saw dr. alkady in West Islip. What is the lovenox for as I wasn't prescribed that. Although I don't think I had the MTHR thing that you had...gotta go look it up. I don't fully understand it either but whatever helps!
Is Dr. Alkady a RE or an OB?
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| Posted 11/13/13 10:30 AM |
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VeeJay
Love baby feet
Member since 2/09 2894 total posts
Name:
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Re: Back from Dr Kofinas & findings...
IF grad here. I am happy to hear you have answers.
Just wanted to share that Dr. Kofinas found my thrombophilia too and now I have a beautiful DD and another on the way.
Best of luck.
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| Posted 11/13/13 3:38 PM |
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MrsTeacher1
LIF Infant
Member since 2/13 317 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by VeeJay
IF grad here. I am happy to hear you have answers.
Just wanted to share that Dr. Kofinas found my thrombophilia too and now I have a beautiful DD and another on the way.
Best of luck.
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| Posted 11/13/13 7:39 PM |
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MrsTeacher1
LIF Infant
Member since 2/13 317 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by babydreams21
Posted by MrsTeacher1
Posted by babydreams21
Glad you got some answers. I bet it was overwhelming but it seems like all of the things found can be taken care of with supplements and meds. I don't have any advice but I'm waiting for some BW back too from my RE. My BW was the loss panel and a few other tests. I'm wondering if mine will come back with MTHFR as well. Did your insurance cover going to Kofinas for all the BW? Just wondering about cost since I may need more extensive testing. What RE are you seeing? Does your RE work with Kofinas?
I hope everything works out for you! Best of luck!
I don't know yet if insurance covered the BW.. and since Kofinas is OON I have to pay my deductible first, which is $1000.
My RE doesn't specifically work with Kofinas but he's more than willing to follow his protocal.. and Kofinas seemed find with me going to Kreiner under his protocol which I'm really glad about. Basically he'll just be doing my monitoring.
Thanks. So you had to pay 1000 at your first consult appointment? I'm just trying to figure out how the OON works. Are you an NYC teacher? I have GHI so just trying to figure this all out. I had some testing done with my RE- 20 vials- but not as extensive as your testing seems. I should be getting the results this week and may go to another RE or Kofinas for further testing. I have an appointment with SIRM in February. So the meds you will be taking are they just for while you are cycling? Would you need them after you had your child? All this immune stuff is new to me. Just trying to learn as much as I can. How often will you go back to Kofinas while cycling with your RE? Thanks!
No I paid less than $300 for the consult. I'm a teacher on LI. The meds I'm taking, I started them all already and we won't be ttc again until February but some I'll be on my whole life and others just to get them into my system and throughout part of my pregnancy.
I'm not sure how often I'll see him as opposed to my RE. We didn't discuss any of that yet. We just went over what he found in my blood and how it'll be treated. Then I'll return in January for the lovenox tutorial and I guess learn more then. He seemed fine with me getting monitored at LI IVF and then he'll get that information.
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| Posted 11/16/13 9:17 AM |
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ready2go
LIF Adult
Member since 1/08 2379 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by MrsTeacher1
Posted by babydreams21
Posted by MrsTeacher1
Posted by babydreams21
Glad you got some answers. I bet it was overwhelming but it seems like all of the things found can be taken care of with supplements and meds. I don't have any advice but I'm waiting for some BW back too from my RE. My BW was the loss panel and a few other tests. I'm wondering if mine will come back with MTHFR as well. Did your insurance cover going to Kofinas for all the BW? Just wondering about cost since I may need more extensive testing. What RE are you seeing? Does your RE work with Kofinas?
I hope everything works out for you! Best of luck!
I don't know yet if insurance covered the BW.. and since Kofinas is OON I have to pay my deductible first, which is $1000.
My RE doesn't specifically work with Kofinas but he's more than willing to follow his protocal.. and Kofinas seemed find with me going to Kreiner under his protocol which I'm really glad about. Basically he'll just be doing my monitoring.
Thanks. So you had to pay 1000 at your first consult appointment? I'm just trying to figure out how the OON works. Are you an NYC teacher? I have GHI so just trying to figure this all out. I had some testing done with my RE- 20 vials- but not as extensive as your testing seems. I should be getting the results this week and may go to another RE or Kofinas for further testing. I have an appointment with SIRM in February. So the meds you will be taking are they just for while you are cycling? Would you need them after you had your child? All this immune stuff is new to me. Just trying to learn as much as I can. How often will you go back to Kofinas while cycling with your RE? Thanks!
No I paid less than $300 for the consult. I'm a teacher on LI. The meds I'm taking, I started them all already and we won't be ttc again until February but some I'll be on my whole life and others just to get them into my system and throughout part of my pregnancy.
I'm not sure how often I'll see him as opposed to my RE. We didn't discuss any of that yet. We just went over what he found in my blood and how it'll be treated. Then I'll return in January for the lovenox tutorial and I guess learn more then. He seemed fine with me getting monitored at LI IVF and then he'll get that information.
I am so happy to hear this bc I am switching to LIIVF... Wasn't sure how/if Kofinas would connect with them.
Eta: does he want you to wait til Feb or was that your personal choice? DH really wants to start ASAP again as soon as we have our consult.
Message edited 11/16/2013 9:29:40 AM.
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| Posted 11/16/13 9:27 AM |
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Back from Dr Kofinas & findings...
IF grad here. Love me some KOFINAS!
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| Posted 11/16/13 10:49 AM |
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babydreams21
LIF Adult
Member since 12/12 3656 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by MrsTeacher1
Posted by babydreams21
Posted by MrsTeacher1
Posted by babydreams21
Glad you got some answers. I bet it was overwhelming but it seems like all of the things found can be taken care of with supplements and meds. I don't have any advice but I'm waiting for some BW back too from my RE. My BW was the loss panel and a few other tests. I'm wondering if mine will come back with MTHFR as well. Did your insurance cover going to Kofinas for all the BW? Just wondering about cost since I may need more extensive testing. What RE are you seeing? Does your RE work with Kofinas?
I hope everything works out for you! Best of luck!
I don't know yet if insurance covered the BW.. and since Kofinas is OON I have to pay my deductible first, which is $1000.
My RE doesn't specifically work with Kofinas but he's more than willing to follow his protocal.. and Kofinas seemed find with me going to Kreiner under his protocol which I'm really glad about. Basically he'll just be doing my monitoring.
Thanks. So you had to pay 1000 at your first consult appointment? I'm just trying to figure out how the OON works. Are you an NYC teacher? I have GHI so just trying to figure this all out. I had some testing done with my RE- 20 vials- but not as extensive as your testing seems. I should be getting the results this week and may go to another RE or Kofinas for further testing. I have an appointment with SIRM in February. So the meds you will be taking are they just for while you are cycling? Would you need them after you had your child? All this immune stuff is new to me. Just trying to learn as much as I can. How often will you go back to Kofinas while cycling with your RE? Thanks!
No I paid less than $300 for the consult. I'm a teacher on LI. The meds I'm taking, I started them all already and we won't be ttc again until February but some I'll be on my whole life and others just to get them into my system and throughout part of my pregnancy.
I'm not sure how often I'll see him as opposed to my RE. We didn't discuss any of that yet. We just went over what he found in my blood and how it'll be treated. Then I'll return in January for the lovenox tutorial and I guess learn more then. He seemed fine with me getting monitored at LI IVF and then he'll get that information.
Okay good to know it was $300 and he will work with your current RE. I put up a post about getting my results from my loss panel and a few other things my RE sent me for. This included MTHFR and some genetics etc. 20 vials of blood. The only thing that showed up was high Prolactin which I already knew about. I know your testing was even more in depth so if this FET doesn't work I'll have to maybe go there for more testing.
I'm glad you have a plan. I am curious about the question the other poster asked: Do you want to wait until Feb or he wants you to wait until then? Best of luck with everything!
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| Posted 11/16/13 1:48 PM |
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MrsTeacher1
LIF Infant
Member since 2/13 317 total posts
Name:
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Re: Back from Dr Kofinas & findings...
Posted by ready2go
Posted by MrsTeacher1
Posted by babydreams21
Posted by MrsTeacher1
Posted by babydreams21
Glad you got some answers. I bet it was overwhelming but it seems like all of the things found can be taken care of with supplements and meds. I don't have any advice but I'm waiting for some BW back too from my RE. My BW was the loss panel and a few other tests. I'm wondering if mine will come back with MTHFR as well. Did your insurance cover going to Kofinas for all the BW? Just wondering about cost since I may need more extensive testing. What RE are you seeing? Does your RE work with Kofinas?
I hope everything works out for you! Best of luck!
I don't know yet if insurance covered the BW.. and since Kofinas is OON I have to pay my deductible first, which is $1000.
My RE doesn't specifically work with Kofinas but he's more than willing to follow his protocal.. and Kofinas seemed find with me going to Kreiner under his protocol which I'm really glad about. Basically he'll just be doing my monitoring.
Thanks. So you had to pay 1000 at your first consult appointment? I'm just trying to figure out how the OON works. Are you an NYC teacher? I have GHI so just trying to figure this all out. I had some testing done with my RE- 20 vials- but not as extensive as your testing seems. I should be getting the results this week and may go to another RE or Kofinas for further testing. I have an appointment with SIRM in February. So the meds you will be taking are they just for while you are cycling? Would you need them after you had your child? All this immune stuff is new to me. Just trying to learn as much as I can. How often will you go back to Kofinas while cycling with your RE? Thanks!
No I paid less than $300 for the consult. I'm a teacher on LI. The meds I'm taking, I started them all already and we won't be ttc again until February but some I'll be on my whole life and others just to get them into my system and throughout part of my pregnancy.
I'm not sure how often I'll see him as opposed to my RE. We didn't discuss any of that yet. We just went over what he found in my blood and how it'll be treated. Then I'll return in January for the lovenox tutorial and I guess learn more then. He seemed fine with me getting monitored at LI IVF and then he'll get that information.
I am so happy to hear this bc I am switching to LIIVF... Wasn't sure how/if Kofinas would connect with them.
Eta: does he want you to wait til Feb or was that your personal choice? DH really wants to start ASAP again as soon as we have our consult.
Well I have to wait officially until Dec. b/c of the methotrexate, but I also read after all that I went through its good to wait 2-3 period before TTC and so far I haven't even had 1... so that's why I think around Feb. should be a good time.
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| Posted 11/16/13 2:28 PM |
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