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anabel79
anabel79
membru incepator


Membru din:29/04/2009
 Romania, Bucuresti
376 Mesaje
2 Prieten(i)
Trimis la: - 10/05/2012 :  16:27:54 Link direct catre acest raspuns  Arata profilul Adauga semn de carte la raspuns Trimite anabel79 un Mesaj Privat
mesaj mail
Long story, short version, July 2009- BFP my, what a shock, 6th pregnancy in 10 years, NOT TTC- NOT upset either . At the time I was 28, married and not working because of several disabilities, everything but the age is current. When My OB found out about my past m/c’s he sent me to a specialist were/when I found out that I have the following:
Prothrombin gene mutation (factor II)

Antiphospholipid syndrome / Lupus anticoagulant

Methylenetetrahydrofolatereductase (MTHFR)

Plasminogen Activator Inhibitor-1 (PAI-1)

They immediately put me on Lovenox, high dose folic acid and of course baby aspirin, was told to stay on aspirin-lifetime, as well as standard Rx Prenatal. I was later told that my nickname in the specialists office was “The Walking Time Bomb”, I’m also a “Big Girl” at about 230 lbs. Anyway, other than daily all day sickness and later being Dx with gestational diabetes –surprise, not- at about 32 weeks I couldn’t keep anything down and went to my dietary appt. while there I was told to call my OB right then and there, they were worried. I was told to come in right away, after I arrived I was quickly looked over and was told to get to the hospital ASAP. After being admitted right then and there they of course did all sorts of blood work and found that my liver was shutting down. I was also by that time having issues with my blood sugar and blood pressure and my OB was worried enough to have me transferred to another hospital to be under the care of an amazing group of high risk Drs- they also delivered my niece and nephew.

A week into it and there seemed to be no improvement in any work ups and still not keeping anything down, they gave me several rounds of steroids hasten my sons lung development, I was told that “We will wait a couple more days.” I had called my husband at work to let him know and as I was hanging up with him a nurse walked in with a pair of clippers/razor and said “Are you excited to be able to see your baby in a half hour?” Boy, did I about crap my self, she said “You mean they didn’t tell you?” and high tailed it outta there. My Dr came back in and said that the group of Drs had JUST conferred with each other and decided that NOW was best for all. They sent the anesthesiologist in to go over the epidural and I mentioned the injections (blood thinners) being only an hour or so ago, he said “Oh, no, we’ll have to put you out.” My son Ian was born at 33 weeks on 2/9/10 5 lbs even, he had a few days of jaundice, thanks to my liver, and spent a total of only 3 weeks in the NICU.


32 ani, boala autoimuna Hashimoto,ATPO, Anti TG si ANA pozitivi, mutatia MTHFR C677T genotip homozigot FIV 1 reusit gemeni
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anabel79
anabel79
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Membru din:29/04/2009
 Romania, Bucuresti
376 Mesaje
2 Prieten(i)
Trimis la: - 10/05/2012 :  16:31:05 Link direct catre acest raspuns  Arata profilul Adauga semn de carte la raspuns Trimite anabel79 un Mesaj Privat
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Hi Lori,

I'll share my story because I don't think I have shared in a while. My husband and I tried to conceive for about two and a half years before we finally visited a Reproductive Endocrinologist (I live in Brooklyn, so we went to the Kofinas Institute). I did the usual treatments, including Clomid and lots of blood workups.

We found out that I have the homozygous mutation of MTHFR (A1298C) and also the homozygous mutation of the PAI-1 4G allele. After completing three rounds of Clomid (2 with my regular OB and one with Kofinas), I tried two cycles of IUI. We were finally able to get a positive pregnancy result in March 2008 (after four years of trying). I was put on Metformin and progesterone for the first twelve weeks, and Lovenox, baby aspirin and Metanx for the whole pregnancy (well, I switched to heparin at 35 weeks). My pregnancy was relatively uneventful, but I was monitored very closely, especially as the pregnancy progressed into my last trimester. My MFM decided at 38 weeks that enough was enough, and the were planning to induce me (the PAI-1 gets progressively more dangerous as the pregnancy progresses). My son had plans of his own, and he actually arrived, very healthy, in December 2008.

Since that time, I have had three miscarriages, but two were believed to have been genetic issues (I didn't have the tissue checked). It was extremely difficult, but I felt partially to blame because I hadn't been seeing my RE for the first 8 weeks like I did with my only successful pregnancy. So, this past August, after my third miscarriage, I went back to my RE and explained the recurrent losses. They put me back on the old regimen (Metformin, Neevo DHA, Metanx, baby aspirin, Lovenox and progesterone). I am currently 20 weeks tomorrow with a baby girl! It has been a long road, but one that I am so grateful I continued going down. I still have another 18 weeks to worry, but I trying really hard to sit back and enjoy this experience.



32 ani, boala autoimuna Hashimoto,ATPO, Anti TG si ANA pozitivi, mutatia MTHFR C677T genotip homozigot FIV 1 reusit gemeni
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anabel79
anabel79
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Membru din:29/04/2009
 Romania, Bucuresti
376 Mesaje
2 Prieten(i)
Trimis la: - 10/05/2012 :  16:32:48 Link direct catre acest raspuns  Arata profilul Adauga semn de carte la raspuns Trimite anabel79 un Mesaj Privat
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After about a year of l-methylfolate and baby aspirin, all of my blood levels are normal. My homocystine is down to 3. My memory is back, and so is my speech pattern. I'm currently pregnant with my second daughter. I'm 23 weeks and both of us are doing great. I have already gained 15 pounds (which is good because I started the pregnancy at 95 pounds) which is as much as I gained in total with my 37 week daughter. I'm taking lovenox, baby aspirin, and metanx this time. I'm also on P17 shots because I went into preterm labor with my daughter. They seem to slow down the Braxton hicks that I've been having.

32 ani, boala autoimuna Hashimoto,ATPO, Anti TG si ANA pozitivi, mutatia MTHFR C677T genotip homozigot FIV 1 reusit gemeni
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anabel79
anabel79
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Membru din:29/04/2009
 Romania, Bucuresti
376 Mesaje
2 Prieten(i)
Trimis la: - 10/05/2012 :  16:42:01 Link direct catre acest raspuns  Arata profilul Adauga semn de carte la raspuns Trimite anabel79 un Mesaj Privat
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After 5 m/c, I was finally prescribed Lovenox. With my son and current pregnancy (now 19 weeks with a boy), I took: Lovenox 40 mg, Neevo-DHA (1 mg folic acid), Folbic (2.5 mg folic acid), an extra 800mcg folic acid, and a baby aspirin until delivery. My son is 21 months old today, and I had a great ultrasound yesterday that showed a healthy, active baby with a great hb :)

32 ani, boala autoimuna Hashimoto,ATPO, Anti TG si ANA pozitivi, mutatia MTHFR C677T genotip homozigot FIV 1 reusit gemeni
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anabel79
anabel79
membru incepator


Membru din:29/04/2009
 Romania, Bucuresti
376 Mesaje
2 Prieten(i)
Trimis la: - 10/05/2012 :  16:45:30 Link direct catre acest raspuns  Arata profilul Adauga semn de carte la raspuns Trimite anabel79 un Mesaj Privat
Sper sa va ajute informatiile am multe mailuri primite din 2010 pana acum majoritatea fetelor sunt din America si merg la diversi hematologi acolo, din acest motiv am avut oarecum incredere depinde oricum de organismul fiecaruia....

32 ani, boala autoimuna Hashimoto,ATPO, Anti TG si ANA pozitivi, mutatia MTHFR C677T genotip homozigot FIV 1 reusit gemeni
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MeAlex
Praying for the miracle!


Membru din:25/08/2010
 Romania
3768 Mesaje
5 Prieten(i)
Trimis la: - 10/05/2012 :  16:47:14 Link direct catre acest raspuns  Arata profilul  Trimite mesaj yahoo luiMeAlex Adauga semn de carte la raspuns Trimite MeAlex un Mesaj Privat
Veselina, multumesc mult pentru raspuns! Nu sunt gravida acum, dar scriu aici pentru ca la trombofilie nu se prea scrie. Am pierdut a 3-a sarcina in ianuarie, restul il vezi in semnatura. Eu vreau sa merg la un hematolog sa ii arat venele mele de pe picioare, mi se pare ca se umfla prea tare uneori si ma dor cand apas.
Eu am acum 75 si-s mica, am 1.60. Sigur, conteaza si cum evolueaza bebe, daca ramane in urma, este fff posibil sa fie nevoie de cresterea dozei de anticoagulant, dar esti norocoasa, ca nu te-ai lovit de asta.
Unii medici fixeaza doza doar raportat la gravitatea si asocierea dintre mutatii, altii tin cont si de greutate...


Gena MTHFR - mutatie C677T heterozigot, Gena PAI - mutatie 675 4G/4G homozigot
3 sarcini oprite in evolutie la 7 s, 9s, 11 s (a 3-a sub tratament cu Clexane)

Editat de - MeAlex on 10/05/2012 16:58:17
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albinuta83
membru incepator


Membru din:07/12/2011
 Romania, bucuresti
313 Mesaje
0 Prieten(i)
Trimis la: - 10/05/2012 :  17:50:24 Link direct catre acest raspuns  Arata profilul Adauga semn de carte la raspuns Trimite albinuta83 un Mesaj Privat
Citat:
citat din mesajul lui Musette_1982

albinutzo, e nastere programata? Nasti chiar de Sfintii Imparati Constantin si Elena? Sa fie intr-un ceas bun.
Ai emotii ceva? Ce ai stabilit cu medicul referitor la nastere?

MTHFR C677T - homozigot si PAI 4G/5G - heterozigot.
2 avorturi spontane - 5s in 2010 si 4s in 2011
Tratament: Fragmin 5000X2/zi, 3 NoSpa forte, 3 Magne B6, Femibion 2 alternat cu Medyn forte, acid folic 5 mg, Vitamina C 1000

in 37+ cu Marin Constantin

Musette, am zis sa asteptam cat mai aproape de termen..adica sa intram in saptamana 39. Cam pe 20-21 ar trebui sa fie ziua cea mare, insa hotaram saptamana viitoare ultimele detalii. Se pare ca nu s-ar prea grabi micutul, TNS a iesit bun si azi, iar colul vad ca e inchis. Emotii momentan am doar legate de anestezie..ufff..desi tocmai am fost la hematolog si mi-a spus ca nu e nicio pb in caz ca trec mai putin de 12 ore de la clexane,,pt ca fie "se mai trage de timp", fie facem anestezie totala..Asta e stresul meu..sa nu ma apuce dupa ce fac clexa.. Cu gine am hotarat sa lasam 24 h de la ultima injectie. Sper sa fie totul ok.
oricum..nastem cam in aceeasi perioada...

37+ cu Rares-Iustin
AMR vreo 11 zile !

Mutatia MTHFR C677T homozigota- tratament cu Clexane 0.4, Cetebe, Magnerot si Folowise.

Editat de - albinuta83 on 10/05/2012 17:53:10
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albinuta83
membru incepator


Membru din:07/12/2011
 Romania, bucuresti
313 Mesaje
0 Prieten(i)
Trimis la: - 10/05/2012 :  17:59:40 Link direct catre acest raspuns  Arata profilul Adauga semn de carte la raspuns Trimite albinuta83 un Mesaj Privat
Citat:
citat din mesajul lui MeAlex

Multumesc mult, Albinuta! E o idee foarte buna, o sa ma interesez despre tromboelastograma. Cand am avut hemoragia, am eliminat bucati mari de cheaguri, care banuiesc ca veneau de la hematom.
le:
- ai avut vreodata alte simptome care sa duca la ideea de fragilitate capilara (in sarcina sau in afara sarcinii)?
- am citit ce scriai in martie despre tromboelastograma, ca ai cumparat kit-ul si ai facut analiza la Fundeni. De unde se cumpara kit-ul, se gaseste la farmacie?


Gena MTHFR - mutatie C677T heterozigot, Gena PAI - mutatie 675 4G/4G homozigot
3 sarcini oprite in evolutie la 7 s, 9s, 11 s (a 3-a sub tratament cu Clexane)


MeAlex, am avut fragilitate capilara in timpul tratamentului cu Aspenter- vase sparte pe mana stanga la incheietura dupa ce am carat ceva mai greu..Pana si Uschi a zis ca nu e normal..si cu cativa ani in urma o retea de capilare sparte la ambele picioare, insa erau vase superficiale..si aratau asa ca o panza de paianjen. Stiu ca atunci am luat vitamina C si Lioton si mi-au trecut.
In prima sarcina- sangerare dupa implantare, sangerare puternica in saptamana 5 si o hemoragie de toata frumusetea care a dus si la eliminarea hematomului in saptamana 17.
In sarcina a doua doar 2 hematoame mici care s-au vazut la eco si care s-au resorbit pana in sapt 12-13. Eu cred ca mi-a mers bine cu Cetebe si Tarosin.

TEG-ul se face doar la Fundeni, initial mi-au zis sa cumpar kit doar de la farmacia spitalului. Nu l-am gasit-era inventar si apoi parca nu aveau..si am platit analiza in momentul recoltarii ei 280 ron- fara bon .

LE: referitor la dr Voican vad ca s-a pus la curent cu multe lucruri legate de trombo, iar mie mi-a descoperit un SAFL care se activeaza doar in sarcina..Nu e adepta analizelor inutile si nici nu prescrie clexane la intamplare. Colaboreaza f bine cu dr Avram si a fost draguta si mi-a promis ca o suna sa se intereseze de TEG , daca se poate face si la Medcenter sau macar sa ma pot duce in viitorm candva, cu asta de la Fundeni sa -l vada si dansa ( v-am zis ca rezultatul la TEG sunt niste grafice, fara interpretare; interpretarea mi-a facut-o U verbal si anume k a iesit prost si..fara Aspenter pe viitor..ori eu la SAFL aveam nevoie doar de Aspenter).

37+ cu Rares-Iustin
AMR vreo 11 zile !

Mutatia MTHFR C677T homozigota- tratament cu Clexane 0.4, Cetebe, Magnerot si Folowise.

Editat de - albinuta83 on 10/05/2012 18:07:40
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sper
membru junior


Membru din:05/12/2011
 Romania, *******
1228 Mesaje
15 Prieten(i)
Trimis la: - 11/05/2012 :  00:48:52 Link direct catre acest raspuns  Arata profilul Adauga semn de carte la raspuns Trimite sper un Mesaj Privat
Si eu am probleme cu aspenterul, la ultima sarcina pierduta am fost pe clexane 0.6 si aspenter, la fiecare injectie faceam hematom iar la ecograf in sapt 7 mi s-au depistat plaje hipoecogene. Mi-am intrebat dr cu care voi face fiv ce inseamna asta si mi-a spus ca e ceva mai lichid, adica o sangerare. Hipoecogen se vede mai negru la ecograf iar hiperecogen mai albicios (cum e endometrul) .
Inca ceva, imi pica par mult atunci cand iau aspenter. La urmatorul fiv voi avea 0.4x2/zi din zi 1 de stim fara aspenter. Sper sa fie ok de data aceasta.




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anabel79
anabel79
membru incepator


Membru din:29/04/2009
 Romania, Bucuresti
376 Mesaje
2 Prieten(i)
Trimis la: - 11/05/2012 :  08:40:01 Link direct catre acest raspuns  Arata profilul Adauga semn de carte la raspuns Trimite anabel79 un Mesaj Privat
mesaj mail
I took metanx, baby aspirin, lovenox, and progesterone for my last pregnancy.
Metanx has bio available b6 and b12, and l-methylfolate. It's important to take methylfolate as we have a limited ability to break down regular folic acid. Many doctors treat MTHFR with high doses of folic acid hoping some will stick. That's pretty counter-productive when there's already a broken-down form available. You can go to the metanx website to see what's in it and shop for the ingredients OTC. I know people have had luck finding these vitamins on amazon. Neevo is also good because it contains active folate. I believe it has synthetic b12, though. I decided on metanx over Neevo only because Neevo had a lower dose of methylfolate, and contained synthetic folic acid. There's a theory that synthetic folic acid inhibits absorption of methylfolate.
Baby aspirin is important in preventing clots from the umbilical cord toward the baby, since it crosses the placenta. It is also to help by increasing bloodflow to the uterus.
I took lovenox to prevent throwing any clots and passing them to the placenta. My first daughter was born at 37 weeks due to a complete placental abruption. She also had interuterine growth restriction. Although the placenta wasn't sent to pathology (it should have been), I believe that clots caused the abruption. I've never had a clot outside of pregnancy, though.
Progesterone is a hormone. I took it early in pregnancy to help with implantation. I have a short luteal phase and always miscarried between 5 and 6 weeks without progesterone supplementation. It's also thought to help develop the placenta and prevent problems later on. Early on, you can take prometrium or crinone gel. There may be other brands, but those are the ones I'm familiar with. Prometrium can be taken orally or vaginally. For me, oral administration just wasn't enough because so much of it is destroyed in the stomach before being absorbed. Crinone is only used vaginally. I also took 17p shots later in my pregnancy (a progesterone in oil intermuscular shot) to help prevent preterm labor. I went into preterm labor with my first daughter at 30 weeks.
I saw a high risk OB in conjunction with a regular OB. I had monthly ultrasounds to check for any problems with clots and monitor growth and development. As I got further into my pregnancy, I went bi-monthly, then weekly. I had bio physical profiles, growth ultrasounds, and a non-stress test (when I was feeling frequent contractions).



32 ani, boala autoimuna Hashimoto,ATPO, Anti TG si ANA pozitivi, mutatia MTHFR C677T genotip homozigot FIV 1 reusit gemeni
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