blood clotting disorder - Anyone out there have any experience?

[AvaMercy]

Hi there,

So following my first sets of blood tests at my recurrent miscarriage clinic, it has been discovered that I have an issue with blood clotting. The doctor has sent me off for a second lot of tests just to be sure but seems pretty convinced.

I had a miscarriage earlier in the year at almost 18 weeks and so as you can imagine I'm petrified of losing another pregnancy.

The Dr has said that in future pregnancies I would have heparin and aspirin from the point of a positive pregnancy test and has said that they would also like for me to have progesterone also as a precaution.

I just wondered if anyone had any experience of any of these conditions or medications?

I really would like to try again. My DH and I have no children and would desperately love just one successful pregnancy. But I'm also very very worried... Would welcome any insight/opinions/experiences both positive and negative.

Thank you all. x

I'm sorry to hear of your loss.
Just wondering, what blood clotting disorder does the doctor think you have? My daughter has one - protein c difficiency - and I understand it can cause miscarriages. She's only 12 so not an issue yet.
She's adopted and her birth mom had several miscarriages and stillbirths, as well as four children who survived.

Hi - I've just been diagnosed with a blood clotting issue too after two mcs . I've been told heparin injections from positive result, and progesterone from around 7 days after ovulation. So no additional experience, but you are not alone.

I did not want to try for another baby until I had been checked out, as I didn't want to lose another baby if it could be prevented. Now I have some answers I'm hoping to start ttc again soon. Pregnancy is never going to be the joy it is for some people, but in taking medication I feel I'm doing something to reduce the chances of losing another.

Good luck to you

I have Hughes syndrome and must take heparin and progesterone if I am fortunate enough to conceive again (I am 43).

I take low dose aspirin daily as it has helped with the fatigue and brain fog that are also symptoms.

I have had 2 pregnancies this year that didn't stick despite starting the prescribed drugs as soon as I had the bfp, but my age is probably a contributing factor now Shame I didn't get diagnosed 10 years ago

The heparin injections were ok but left some impressive bruises at the injection sites the progesterone was pessaries which were unpleasant but I was fairly used to all of it from several attempts at IVF before my diagnosis.

Good luck

so sorry for everyones losses.

my story is a little different but i was wondering how often you have heparin injections and for how long?

Hi All,

Thank you so much for taking the time out to respond. I'll try to answer each of you as best i can.

Papergirl- I'm afraid thrombophilia was all the doctor said. I think I could have more specifics at the next appointment but so far I've just been told that there are raised levels of something in my blood which indicates a clotting issue, My mum too had a few premature births so we are actually wondering now whether she had any of these conditions also.

Granadilla - Did the doctor go into specifics with you or did they just say blood clotting/thrombophilia? At first I was really glad to have a cause and something to focus on but now over time I'm getting a little panicky again. I'm clinging to the fact that with this condition and no meds, I got to 18 weeks. so I'm hoping that with the aid of meds i'll be successful next time. But you're completely right. I've lost that innocent joy that i see people have when they're pregnant. And that's such a shame. But it will be worth it all if the next pregnancy is successful. I just have to be brave enough to try!

Mewling - I'm so sorry to hear that the meds have not worked as yet. It's amazing how brave you become in these situations. I really hope that if you do decide to try again, it will be third time lucky. Thank you so much for sharing your experience. I know someone with hughes who has had a successful pregnancy so hopefully that will be you too! I'm in my thirties but I wish I had stated trying sooner also.

Woweee - As far as I've been told, it would be one injection daily from the point of positive pregnancy test (as well as asprin) and then throughout the pregnancy.

Hello all,
I have also been to the hospital twice now for blood clots the first time they told me that an average persons blood clots in their body was 0-6range and I was a 10 then the second time they told me I was 13 but they said the same to me I have to get pregnant before I am aloud the injections but I’m thinking to myself how the hell am I going to get pregnant without the help of the injections as I know I have high blood clots ? I’m taking baby aspirin now as I want to do something to help myself if the doctors are not willing to give me the injections before hand.
I don’t know what else to do we have been waiting 1.5 years now and like so many other women just want to get pregnant.
My upmost sympathy goes out to anyone who can’t get pregnant.