Anyone have a Prothrombin Gene Mutation??

[Erin83]

Thanks Aubi. I found out what the reason was. I had a blood draw in July for my ob with the dx of Inferility, for some reason that dx stuck onto every blood draw I've had since then. Well, all the sudden I was getting bills for all of my blood work that I shouldn't have been getting. I finally called the doctor's offices and the hemotologist which is drawing the most blood told me that they didn't have the IF dx, it must be someone else. So I called the billing office and figured out what had happend. In the meantime, the lady from the billing office was arguing with me over what medicine I was taking and what it was for. She thought that Lovenox was an IF drug. I corrected her and told her it was a blood thinner injection and I was seeing the hemo for the clotting disorder and taking the Lovenox for the clotting disorder, not for IF. After about 15 min of her arguing with me, she finally got it figured out and told me what I needed to do to get it fixed. So that was the story in a nutshell. It was confusing to not only her, but to me and everyone else I tell it too. Anyway, thanks for the advice.
Erin

[Aubie]

Erin- OMG , what idiots. Glad you got that all straightened out

[Erin83]

Oh Aubi, you aren't kidding. I spent most of that night so pissed off at those people. I was so afraid that I wasn't going to be able to afford my meds so that I could have a baby. Anyway, now I'm just looking for the bill that is corrected. I'll keep you updated. Erin

[Erin83]

Hello everyone. Wow, did I ever get a lot of much needed info yesterday. I had to go back to my peri to meet the one I hadn't met yet. As we got to talking, she started asking me questions as well as I was asking her questions. She informed early on that she had read through my entire chart and believe me, its a big one, so needless to say I was impressed!!! It was probably a few inches thick. She wanted to know if I had been tested for MTHFR or Anti Thrombin 3 disorders as well as Factor V and Protein S. I knew of a couple of the things I had been tested for because I had asked awhile back, but she wanted to make sure I was tested for the others if I hadn't been already. As we were talking about my pregnancy when it happens, she told me I am to contact that office and my ob as soon as I know I'm pg so we can do an u/s to make sure the baby is in the right place. She went on to tell me that I needed to up my dose of Folic Acid because I wasn't taking enough. She told me that my dosage of Lovenox will go up as I'm pg and continue to get bigger. She said that as my body mass increases so will my Lovenox. I have had several people tell me that they will be getting induced at around 37 wks. She confirmed that I too will be induced at 37 wks and it will be coordinated with my OB's schedule so that he will be the one to deliver me. They will also want to take me off of my Lovenox about a week before induction just in case we would need to do an emergency section, this way I don't bleed to death from the blood thinners. They want me to start on baby aspirin also as soon as I know I'm pg. That will also be stopped with my Lovenox. I will be on Lovenox until 6 wks after delivery because there is still pg hormones in your blood until about then. At that point I will be able to go back on the pill form of blood thinners. There were a few other things mentioned, but nothing real important. I was just glad to finally get some of my questions answered especially the ones that I've been told from other ladies on this website. Thanks for listening!! Erin

[jen16]

hi, aubie and all,

aubie, my hematologist told me the same--once on lovenox to stop BA--but i keep reading more conflicting stuff about the need to be on BOTH for different reasons. are you only on one and not the other?

i am 6 weeks p/g, and tested + for MTHFR, hetero compound A and C, and the prothrombin gene. my hematologist was a bit dismissive of my dx, said once i'm on the lovenox that's all i'd need. he didn't even think i needed an rx for folate, but he prescribed metanx to make me feel better. so, i've been on lovenox/metanx/fish oil since before ER and ET.

any info would be so greatly appreciated! i am worried about my p/g, mostly since we know so little--just 2 good betas. our first u/s is this monday but it's 6 weeks and one day, maybe too early to see the heartbeat.

TIA!!

jen

[Erin83]

Hey Jen,
I think you might need to find yourself a perinatologist because my hemotologist just put me on the Folate and the Lovenox. It was my peri that told me on Friday that I should be taking 1MG of Folate, my 2 injections of Lovenox and then start baby aspirin when I become pregnant. She told me that before I am induced I am to stop my Lovenox, but continue my BA. So my suggestion to you is to find yourself a peri. They are very knowledgable in these clottting issues as this is what their specialty is as well as your homotologist should be just as knowledgable in these areas. If you think you hemo isn't doing a good enough job, go find yourself a new one.

[Aubie]

Jen - Congrats on your pg. Sorry I haven't been online much- pg issues- but as Erin said you need to see a peri ASAP-your hemitologist only cares about you & not baby so th eperi will know best. As to BA & lovenox, once on lovenox there is no need for BA- I only have the prothrombin mutation & no MTHR so due to some pg complications with me bleeding so much losing 2 of the 3 babies, my peri decided to have me not do the injectables until post partum but keeps an eye on mine & baby's bloodflow, amniotic fluid levels, placenta as well as my blood cell levels so if he needs to I can be put on the injectables earlier than that. I see the peri alot & so you should be also. As to the u/s, we were able to see/hear the HB by vaginal u/s at 6w

[Aubie]

Jen- I just saw your post about pg with twins-get a peri consult ASAP since your pg with multiples & all those clotting disorders. Also, take it very easy as you can see in my previous posts I was pg with trips & lost 2 in the 1st tri

[Erin83]

Wow Jen, I didn't realize you were pg with twins. I really think you should get yourself a peri ASAP. That just puts you in a higher catergory of high risk. As Aubi said, you hemo only cares about you and not baby. You need to get to a doc that cares about baby also. Good luck and keep us posted!! Erin

[jen16]

hi, everyone,

just found this thread and wanted to drop you girls a note to update you. thanks so much for all the advice. i did find a peri right away and have been twice.

i'm now 13W and the twins seem to be doing very well! my peri upped my lovenox three times--first from 40 1x a day to 40 2x a day, then 60 2x a day, and now 80 2x a day til my next blood check. still on metanx for the folate/b vitamins but i quit the fish oil because of m/s

our nuchal scan came back a-oka at 1.5 and 2 for the measurements, but i'm still worried. we're waiting til our next 16W app't to get another u/s to decide if we'll do amnio. i'm 41 and naturally concerned. it's such a big decision to go ahead with the test. risks are 1/250 for twins m/c after amnio. anyone with experience or advice?

aubi, how far along are you? and how's the p/g going at this point? i'm so sorry about your losses.

thanks again for all the info about the MTHFR and prothrom/gene. any other advice as i hopefully continue in this pregnancy on the lovenox/folate??

best to all
jen