I have been browsing this site while being under investigation at the recurrent miscarriage clinic.
I have had a miscarriage at 7 weeks then I had a ruptured ectopic 2 months after which resulted in my left tube being removed, 5 months later I experienced another miscarriage.
After having bloods done I have now been diagnosed as having Hughes syndrome!
My concerns and question is...... would this syndrome have caused my early losses??
I have read that it's more associated with later losses and still birth.
I defiantly have symptoms of Hughes and a lot of things actually make sense now and I no longer feel it was all in my head!!
Also will heparin make any difference to me if I'm to start it as soon as I have a positive??, I feel that may be too late.
Sorry to babble on, I'm so confused and have little understanding on the whole diagnosis.
Thank you for reading
Rachel
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Rachel-c
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I’m sorry to hear of your losses. Certainly Hughes Syndrome can cause pregnancy loss. It’s one of the main criteria for diagnosis and why your doctors saw fit to test you for it. The positive news is that now your Doctors know you have it they will manage your pregnancies differently and this usually results in a great outcome.
I'm sorry to hear of your difficult journey so far, it must be tough. The good news is, that now you have a diagnosis - your prognosis for a successful pregnancy has sky rocketed from a poor 20% to nearer 80%! As long as you have the right treatment (often daily low molecular weight heparin ("LMWH") and low dose aspirin throughout pregnancy) you have every chance of a successful outcome.
From now on, if you don't already, try to track your periods and dates of ovulation so that you can get the support you neee as soon as you find out you are pregnant again. The earlier you start treatment, the better.
To answer your question about APS and early miscarriage, YES! APS absolutely can cause early loss, and many many other women on here have had similar experiences.
I am currently pregnant, diagnosed with APS after a stillbirth at 30 weeks in 2014 and multiple PEs and 2 previous suspected very early miscarriages. I've been taking LMWH and aspirin since I found out I was pregnant at 3 weeks - so far, so good!
Wishing you all the very best. You've landed at the right place and you'll find the administrators and members of this group incredibly helpful and knowledgable. You're not alone!
I am sorry for your losses. I too had three early losses before being diagnosed with Hughes. I was at first put into aspirin alone and suffered another miscarriage but for my fifth pregnancy I was on heparin and aspirin and had a full term healthy little girl who is now three.
As meerohawk said without treatment you had a 10% chance of a live birth but with aspirin and heparin that goes up to over 80%. I too tracked my temperatures and cycle so I knew very early when I was pregnant and started treatment as soon as positive pregnancy test. If you start before then you can actually prevent implantation so it is important to Not start until the positive test.
Pregnancy will always be a worrying time for those of us who have experience loss but there are many ladies on here who had healthy children once diagnosed and treated so your odds are very much improved.
Hi and welcome - so sorry for your losses. You have already had some good replies.
The positive thing is you have a diagnoses so correct medication can be given - we have all got similiar tales so its easy to share our knowledge and experience on our APS/Hughes health journeys.
Post any questions and you will get support as and when you need it. Glad you found us. x
I echo this, sorry for my late reply, a big welcome to you, as well as our long list of recommended specialists under pinned posts on the right hand side of the forum, our members themselves give great support as so many have been in your position and come out the other side, please do ask us as many questions as you like. MaryF
You have landed on the right spot now and hope you stay with us. You have had very good answers so far.
I have had not miscarriages (was over 40 when i got the illness) but always talk of the importance to get a Specialist of autoimmun illnesses. A Doctor who has had patients like you with our illness and who knows to give the correct treatment and who knows what you talk of and also is able to answer the questions you have. Start to look for one now I suggest.
I am sorry for your losses and wish you wellness and luck in the future!
I suggest you read "Sticky Blood Explained"by Kay Thackray. She has this illness herself and tells about the different symptoms we have and how it is to live with this illness. Many members have liked that book (I bought it in pocket here in Stockholm) and it is not quite new but the symptoms do not change only the drugs perhaps. There are two books written by her about HS/APS actually, but I prefer the first book which you should read first.
I have finally found people who understand! Rather than the comments I have from people..... it's not that bad..... at least you can have treatment .... many years I have been made out to be a hypochondriac by many doctors even to the point where one doctor refused to see me and gave me a phone assessment , this was while I was having ectopic symptoms but I was dismissed and told it was my body getting back to normal after my first miscarriage and that I need to stop worrying so much as all my full blood work is normal....ended up in A&E with ruptured ectopic but I left it thinking maybe I was overthinking things
And we too have had the same story. You are with friends here. Sadly I was in child bearing period in the ‘70’s so nothing was known about Hughes Syndrome back then.
Hi Rachel, I can very well understand your anxiety and the emotional stress around your losses. I had 2 losses under 12 weeks within a span of 6-8 months. I felt very anxious and fragile every time I got a positive. Due to my mum having early pregnancy losses my GP tested me and came back with lupus anticoagulant positive.my early pregnancy team put me on cyclogest,aspirin,predisolone the minute i got a positive (as early as 4 weeks) and thereafter I called them and informed them and was called in for lmwh- heparin (tinzaparin) injections. The outcome has been fantastic and I have a lovely daughter who is 3. Subsequent tests didn’t show the lupus but my obstetric team are convinced any future pregnancy managed the same way. Keep faith and be persistent with your medical team. Once you get a positive be calm and have faith soon you will have your bubba.xx
I've lost a baby boy at 23 weeks, my first pregnancy. He suddenly past away in my belly. 'Back luck' the doctors at first said (such an understatement...)
When i was 6 weeks pregnant for the second time i had to start immediately with aspirin and heparin. I had a new doctor, she took this cruciol decision, while she was suspecting APS (you call it Hughes). So i started real early, just in case, i didnt had the diagnose APS at that point.
Later on the diagnose was confirmed. The baby's chanches to survive increased with this medication from 30% to 70%. The fear was really heavy but it worked out very well, i've 2 healthy boys (and 1 in my heart).
I really do think that your early losses are because of APS. In The Netherlands, were i live, i've read often about it. I don't have medication at thuis moment. But i have several medical problems and i'm always extremely tired.
Really sorry for your losses. Wish you all the best for the future. Hope your dreams come true, it's possible ♡
Hi Rachel, I don't have experience of Hughes Syndrome but I do have knowledge of using heparin. After suffering four early miscarriages I had tests done which revealed that I have a clotting disorder called prothrombin gene mutation. I was told that I would need to take low dose aspirin and heparin if I was fortunate enough to get pregnant again. As soon as I got my BFP I went to see my GP and he got me on heparin on the same day. I now have a beautiful eight month old baby boy. I too thought it would be too late to start but it worked for me. Good luck and I hope it all works out for you xx
It's good that u have a diagnosis now, so that u can be treated as many people then can have successful pregnancies.
I took just aspirin with my 1st and aspirin and heparin with my 2nd. Started the heparin at 6 wks I think, tho u can prob start it as soon as u have a positive test.
I know it's scary but it's good they know what's going on now and they will monitor u closely too.
Oh, you have a very exciting future ahead of you!!!! I am very excited for you! You will do fine. I have a very aggressive case - I'm very " clotty" and I did manage two and I wasn't even diagnosed or treated- yet was symptomatic . If you are treated properly I have all the faith in the world.
So, here's my tale. I had Hughes but of course did not know it at the time. ( so did my mom, by the way- didn't know it- she had difficulties as well.)
*My husband and I had an early miscarriage with our first. ( planned so we knew exactly how far along we were- but the pregnancy hormone levels weren't right...)
* had no trouble with second child
*Lost three pregnancies at about 12 weeks - one being an ectopic rupture at 13 weeks.
*Still no diagnosis of APS despite multiple symptoms in other areas of body
Planned and planned for another baby and even consulted specialists, no aspirin, heparin. Nothing. Specialists were geneticists and endocrinologist. By now I was nearing 35 and husband was nearing 46
I had NO trouble conceiving. None. Just trouble miscarrying!
Finally conceived our son. Kept him but went into early labor / a month early- kept cramping. Was not pre eclampsia. I don't know why. I think looking back on it - connective tissue issues?
Wow every one seems to have been through such a lot before diagnosis!
I have days where I'm happy I've been diagnosed with APS so at least I know why ! But days where I'm really anxious about this syndrome.
After all my losses, (ectopic being the most traumatic) I feel like it's never going to happen and I also worry it's going to be a ectopic again.... my bfps actually make me cry and worry so much that I run to A&E.
Do you think there is a link between ectopics and APS??
After all the lovely encouraging messages on this site, me and my other half are going to start trying again next month...... fingers crossed.
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