Now we know why! Finally! "Hughes Syndrome"

[Reem04]

Greetings everybody,

I would like to share what I've been through in hopes to find some hope here or there. I just got diagnosed with Hughes Syndrome after I suffered 4 consecutive miscarriages. I was tested right after the second miscarriage as I don't get pregnant easily (PCOS), however, all tests showed that there was nothing unusual. After 2 more miscarriages, I was tested for (anti-beta-2-glycoprotien-I IgG) which came back strongly positive (my result: 69.8 - normal range: 20). The doctor told me that I should be on blood thinners during my next pregnancy and made it clear that it is going to be a challenge. Anyone in a similar condition and had a successful delivery? 

By the way, my blood becomes sticky only when I fall pregnant.

[Ozchick]

It's such a shame that you have to suffer the heart break of 4 miscarriages in order to get diagnosed. I don't know that being on blood thinners is necessarily a challenge and when there's a baby at stake you will do whatever it takes.  If you search through here you will find there are plenty of success stories after finally being diagnosed and with proper treatment you can go on to have that baby.  Good luck with it.

[Tlove]

Hi, my story is a little similar. Had 2 mc and was diagnosed. Then went on blood thinners for the 3rd pregnancy once it was all confirmed by ultrasound at 6 weeks. But I think it was too late by 6 weeks because I lost that one as well. They decided I would go on thinners once I got a positive test result next time I got pregnant. I ended up doing IVF and have been injecting myself daily with heparin and taking baby aspirin since I got the positive test at 4 weeks. I am 27 weeks along now and things look well so far. 

I'm also not sure why the doctor said the blood thinners would be a challenge. They have been shown to work and as Ozchick says, there are many women here with similar situations. The injecting just becomes part of a daily routine and the only side effect I've had is minor bruising at injection site. Long term it can cause changes to bone density but I don't think pregnancy would be considered long term. The only other thing the doctor mentioned was you have to come off them closer to delivery date to prevent excess bleeding but that will be managed by your medical team.

[suzans in reply to Tlove]

Congrats!  May I ask you about your blood thinner dose? 

Thanks

[Tlove in reply to suzans]

I take 75mg aspirin and 4500IU of Innohep. The innohep is the heparin and the dosage is based on your weight. Although they didn't change my dosage as I put on weight during pregnancy, so it's based on my pre pregnancy weight. I've also been on high dose folic acid for more than a year in anticipation of getting pregnant, this was also prescribed by the pregnancy loss clinic.

[glovebox]

Hi, I had 7 mc in total. Put on aspirin before conceiving and then heparin alongside the aspirin once I conceived. Now have 3 teenagers (including a set of twins). Don't give up hope. Yes it's a challenge but isn't that what life's about? X

[Esmes2013]

Hi I'm really interested in what you said about your blood only being sticky when pregnant? I too have had 4 consecutive losses and my first Hughes test was taken while I was pregnant and it was positive. I then had the second test done, while not pregnant, and it was negative. I have therefore been told by my consultant I don't have Hughes but he wants me to start clexane and aspirin on next bfp as he said there's nothing to lose. I just wondered what you had been told - 

[Reem04 in reply to Esmes2013]

Hi,

Sorry to hear about your losses. It must have been hard!

I was tested weeks after my D&C (I wasn't pregnant when tested) and the result came back strongly positive. However, since I haven't had any clotting problems when not pregnant (like: deep vein thrombosis), the doctor believes that my blood stickiness affects my body only when pregnant (right before losing the baby's heartbeat, I feel some warmth and pain around the groin area which is believed to be a sign of clotting)

Good luck with your future pregnancy.

[Esmes2013 in reply to Reem04]

Thank you for replying! Well us ladies with recurrent losses know the heart ache so hugs to you also X it can be so hard at times X I'm currently ttc but having found it so easy to get pregnant previously it now seems to be more difficult. Best of luck to you keep in touch always nice to have someone to talk to who knows what we're going through fingers crossed for us both then! X I know aspirin and heparin have worked for loads of ladies so let's hope it does for you x

[Groovy]

It's so good to hear from others who have experienced similar things as I have. I've has 4 mc's and have been diagnosed with APS. Struggling to fall again- I'm very overweight which isn't helping. I'll be on aspirin and heparin injections when I next fall. Wishing you all the best of luck...I hate that I'm getting older and have no little ones yet...I can't wait for it to be my turn xx

[Tlove in reply to Groovy]

Sounds like my experience. After my 3rd miscarriage it just wasn't happening naturally for us so I had my AMH and some other hormones tested. AMH came back low to indicate low egg reserve so I was referred to a fertility clinic and had IVF last October. If you're over 35 and it's taking more than 6 months to conceive, you should get checked out by your GP in case there is a treatable reason for not getting pregnant. Thyroid can also cause problems for people with aps and this certainly affects fertility, so test for this too. 

[Groovy]

Thank you. I'm under 35 so I should've happened sooner but nothing in a year. The first time we fell we weren't even trying- isn't it typical! X

[Tlove in reply to Groovy]

If it's been a year, I'd get checked. We started trying when I was 33 and after a year had lots of tests done by GP and found thyroid to be an issue. Once that was under control and I lost some weight I found it easy to get pregnant but each time ended at 7-9 weeks and was diagnosed with APS. As mentioned, I then turned to IVF when I was 36 and I'm just turned 37 now. So it can take some time, even if you are younger than 35.

[Yissica]

My story is similar to you. Had recurrent miscarriages all blamed on PCOS. Did IVF and lost again. Clinic couldn't understand why so did IGG test and was positive

Went onto metformin for PCOS and 75mg aspirin immediately. Stopped aspirin on egg replacement and onto heparin injection daily. Stopped heparin at 33 weeks and now have healthy 9 year old. Unfortunately lost further 3 babies post her pregnancy. I would suggest that you discuss  using the aspirin whilst trying to conceive as I did to protect the placenta before you know you are pregnant then switch to heparin once confirmed.

It took 8 hard emotional years to become a mum but fully worth the investment

I also suggest discussing metformin with the PCOS as it helps to regulate your insulin so helps with hormone balance and weight loss. It really helped me. Dropped dose to once a day for maintenance now.

[pixie2011]

I had 5 miscarriages and then a successful pregnancy on asprin and fragmin(uk),and then one more loss all around 12 wks and then twins!, born at 29 weeks though which is another risk of APS I believe. Anyway all doing fine now. I remember when I was told it would probably never happen and I lost all hope. Now I have three lovely children so hang in there anyone struggling.