Antiphospholipid syndrome

Hi, my names Sam I'm 28 and in the past year my nan, dad, uncle and cousin have all had heart attacks and strokes they found out they all had antiphospholipid syndrome so my family were advised to have blood tests to see if we had it, I have just found out that I have abnormal anti bodies I think they said and have been referred to a clinic to talk about medication, I've had 3 miscarriages in the past so now I believe this is why, just wondering if anyone could help me and might know what will happen with me now? I'm just really confused I've never even heard of this before, thanks 

9 Replies

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  • Hi and welcome, where are you located?  The first thing to say is that it is far safer to have a diagnosis, and will help you with any future pregnancies, (sorry about your losses).   Please do have a very good look around the charity website: hughes-syndrome.org/   also on the list is a list of specialists, you do need one who fully understands the condition:   hughes-syndrome.org/self-he...  This will all be useful to your relatives also.     MaryF

  • Thankyou, I'm in north wales 

  • Hi and welcome to our friedly site where we all have APS (Hughes Syndrome).

    As Mary says it is good that you have had a diagnose. Very sorry about the losses you have had!

     Some of us go on having clots, strokes, PEs and DVTs and a lot of other symptoms before we come to a Specialist and get a diagnose.

    Now you have to look for a Specialist who knows what symptoms to look for. This is exstremely important as so many Doctors do not know about APS and that we have too thick blood that must be anticoagulated before we can feel safe and also better.

    I suggest you read "Sticky Blood Explained" by Kay Thackray. She has got APS herself and writes about the different symptoms we have in common and how it is to live with this illness. Also good for relatives to understand..... You will not find the latest oral drugs there as this book is written a couple of years ago but APS is the same illness today. 

    Best wishes from Kerstin in Stockholm

  • Hello Sam, I know how daunting this is for you but a correct diagnosis now may save you from the risk of stroke, heart attack etc. It is important that you find the right consult so please take a look at Foundation site as mentioned.

    Knowledge is power so please take the advice to read up on the condition, many of us find it is a sudden revelation as to why we have been experiencing multiple ailments. Take care and keep in touch.

  • I have APS too and have had 4 mc's. If I were you I'd see your GP to discuss your APS and get referred to the recurrant miscarriage clinic. When you next fall (if you are trying) you will be given aspirin and heparin injections (you'll inject yourself daily) to thin the blood. Your chances of miscarriage will dramatically drop and you'll hopefully have a successful pregnancy. 

    Whilst trying I was told that you can't take medication but if you're not trying, I'd still see your GP to be referred to a specialist.

    Wishing you all the best x 

  • Hello! While pregnant, you'll be seen by a high-risk doc instead of your regular OB. You'll be on blood thinners throughout the pregnancy and monitored closely. With this, there is a GREAT chance you'll have a successful pregnancy and a beautiful baby. :) Post pregnancy, they make take you off of blood thinners since you've never had a clot and either recommend baby Aspirin or nothing at all. You COULD be on blood thinners the rest of your life, but I'm not sure the doctors will want to take that route if you've never had a clot before. Someone else may know more about that. 

  • I agree with what LSmith says. I was on aspirin 75mg daily for 8 years post delivery of my daughter as had only miscarriages and no clotting events.I only switched to anticoagulants after a transient stroke in 2014. You need to be monitored closely by a specialist who understands the condition.

    It may be worthwhile at least one of you attending the patient day at ST Thomas's hospital next month.

    hughes-syndrome.blogspot.co...

  • Thanks everyone for your replies, yes it's good that I've had a diagnosis it has just shocked me as I've never heard of it until members of my family started to have strokes and heart attacks my nan and uncle passed away earlier this year from theirs so I'm glad that I've found mine now, I had a healthy pregnancy then went on to have 3 miscarriages then had another healthy pregnancy the doctor told me when she told me my results that i would need to take medication if I got pregnant again and told me that I shouldn't take the combined contraception pill as they can cause blood cots but that's about all I was told, thanks again 

  • Relax. I suffered with all sorts of symptoms alongside 3 miscarriages and a stillbirth until my diagnosis aged 35. I now have a pain free life and a beautiful baby boy. Let the experts look after you, use this site for support and look forward to a better, brighter and healthier future, lots of love xx

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