I have just been tested positive for Hughes syndrome

I am 20 years old and I have had 3 miscarriages all before 7 weeks they took blood samples and yesterday I had a letter saying that I'm positive or this condition they have done another blood test to see how bad it is.. I'm absolutely terrified I had never even heard of this condition until yesterday I have researched it and its scared the hell out of me I'm wondering if you can all tell me about it I'd rather speak to real people than research it and scare my self :) thank you

11 Replies

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  • Hi there, a big welcome to you, and you will find lots of us on here - a variety of ages: If you look at my profile you will see my age and my long path to diagnosis, that and other people's. Half the battle is having a medical professional who is on the ball and has actually gone looking for the disease having weighted up your clinical symptoms. With the right medication it will help you to live a normal life and also to have safe pregnancies. There are also other members on here nearer your age. Please try not to be frightened and feel free to ask us anything either privately or out on here. Being diagnosed sometimes does not happen for people and they can remain untreated for years and years, I am so glad that your medical GP/Consultant thought to look at this.

    This is a very user friendly and safe forum with tons of support. Bottom line your blood is sticky, and what they will wish to find out is just how sticky it is... pregnancy is managed very carefully with attention to detail. I have had three safe pregnancies with my blood thinned, to the right level. Often if people are undiagnosed they will have had a history of terrible headaches!

    We are here, do ask us questions.

    Mary F x

  • Answered your other question so wont duplicate here but echo what Mary says. Just contact any of us if you need more info. x

  • Hi Susie,

    Just so you feel a little less fear I am 32 i have 4 children that i was blessed with. I first started showing symptoms when i hit puberty. It went into full affect when I got pregnant with my first child. Unfortunately i wasn't diagnosed until after I had a complication with my last child. Because i wasn't diagnosed early i suffer preterm labor, 2 miscarriages, spinal fluid building up on my brain and a stroke in my kidney. Consider yourself blessed in this situation jun. You were tested at 2 miscarriages. Most doctors will not test until unless you have 3 miscarriages over 10wks gestation, have a stroke, DVT(clot), or heart attack. Even after my Aston child it took them a year to diagnose me and mine was by chance finding a doctor that actually had this disease. I have been through so much physically, mentally, emotionally, and even spiritually over the last 15 yrs and always knew something wasn't right. I know looking at this there really isn't much to see that is a blessing. But you will find after ready many of our profiles that early detection can benefit you in so many ways. Not to mention it will save you a lot of heart ache because there have been women that suffered 7-9 miscarriages or even multiply still born births before they were tested. I know first hand it doesn't matter if it was 1 baby lost or 9 it hurts something awful. I wouldnt wish that pain and sorrow on anyone. I am willing to answer any questions about my experience with APS whether it be regarding physical, mental, or emotional things I've gone through. And always tell yourself find the good in the bad, educate yourself, ask LOTS AND LOTS of questions and always always try to be prepared. All This is advice that was given to me when i was first diagnosed and looking for comfort and answers. Praying for you.

    JENN

  • Hi Susie.

    I am really sorry to hear that you have APS.

    I just want to say that once you have a target INR level and start taking blood thinners, you should be able to live a normal life.

    I was diagnosed about 16 years ago. As long as I keep testing my blood thickness and taking the right amount of warfarin all is good. The worst thing is to worry too much. It sounds like your doctor is on to it.

    good luck and God bless.

    peter

  • Hi Susie,

    Welcome to the Hughes Support site.

    The good news is that the earlier you are diagnosed the better the outcome.

    As Mary says many of us were not diagnosed early and consequently suffered complications.

    Quite often all you will need is low dose aspirin. The good news is that you have been diagnosed and your medical team are on the button.

    There is lots of information on the Hughes Foundation website or you can ask questions here.

    Take care and remember 'Knowledge is Power'

  • Hello Susie

    I think you have two threads running at the moment, with the same questions, I sent this reply on your other thread.

    "Welcome to our group. Please do not be terrified you have got over a very big hurdle and have been diagnosed; many people fight for ages to get believed and diagnosed.

    Hughes Syndrome (APS) can be well managed, with appropriate anticoagulation medication and many patients lead almost normal lives. Have you been put on any medication yet?

    You are among friends here and we all help each other."

    Are you being referred to a consultant who is experienced in Hughes Syndrome?

    Best wishes.

    Dave

  • No medication as of yet.. But it sounds stupid but I have passed out in the past from being lightheaded I sometimes I can have a irregular heartbeat and I get tired quite easily is this to do with this Hughes sydrome?? I have had a second test done to see how sticky my blood is then I will be seeing the gynocologist with the results of this test

  • Low BP can cause you to faint and this can be part of autonomic dysfunction which can be linked to APS. Try upping your fluid intake and a little more salt on your food and see if that helps this.

  • Hi there,

    I would just like to point out that although I rarely post or comment on here, I do read every single e-mail/notification I get, and have found it to be invaluable!! Unfortunately I haven't been diagnosed as of yet (I use the word unfortunately only because I've been waiting 7mths to actually get an appointment - which is on Monday)!! I'm almost certain myself that I have APS I have many symptoms the most prevalent being 5 miscarriages (3 consecutive then 4 "normal pregnancies 1 miscarriage 1 "normal" pregnancy and my last miscarriage was in September 2012), all have been before 12 wks the earliest at 6wks and the latest at 12 wks. The last miscarriage was what they call a missed miscarriage and has been the toughest to deal with as we saw a viable pregnancy at 6+ wks, however when I reached 8+ wks I new something wasn't right so asked to be scanned again - my gut feeling was correct the baby had stopped growing at 7+ wks, it's from the latest miscarriage that I asked my GP to refer me to the hospital for tests for "sticky blood" as its been mentioned to me in passing by 2 different health professionals.... I asked my GP if he could prescribe me aspirin but he said no.... Not sure why???

    I have a variety of symptoms - headaches being a major one (have suffered since I was a teenager I'm now 40)!!!

    I get muscle/joint/bone pain constantly and just generally feel weak, at times I get extremely dizzy for no apparent reasons, I suffer from ringing like noises in my ears quite a bit, and I've also had gallbladder /stomach problems for which I was on a cocktail of drugs which did nothing except dull the pain....... The list of symptoms are endless but I'm feeling quite positive at least if I am diagnosed with Hughes I will have a reason for everything that has happened....., if I don't get a diagnosis perhaps I'm just a hypochondriac????

    I'm happy you have been tested at such a young age, and as previously mentioned with the correct medication & support the outlook for you is a positive one!!! I find google helpful but I also scare myself silly - the amount of times I've convinced myself I am dying is just crazy!!!

    I wish you all the best xx

  • Hi Kay so sorry to hear your list of ailments hun & longitivity of feeling so unwell and not having any answers - one thing that is for sure YOU ARE NOT a hypochondriac!! i so hope you get a positive result, so all the best for Monday ;-) big hugs xxxx

    Hi Susie welcome hun you are at a very young age but fortunate to have a diagnosis without further suffering - so sorry for your losses myself as many of us here have had miscarriages, pre term babies or still births. I was 24 when i had a missed abortion at 18 weeks then went onto have my daughter at 26 at 30 weeks but because i was not diagnosed before my second pregnancy had clots on the brain. The good news for you hun is the condition is now being screened for and there are some very good local doctors experts in the condition as well as the experts in St Thomas's London.

    In so many ways having a diagnosis is such a positive thing you now know what you are dealing with but try not to get to bogged down with the internet as we all have different symptoms and some only get antibodies with pregnancy. Remember it is a treatable condition and it does not necessarily reduce your life span like other conditions - i enjoy life to the full within my limitations my advice is to keep positive and active do not smoke or drink in excess but lead a healthy life style that is half the battle hun - my approach is to worry when something happens dont worry about what might happen ;-) good luck kathy xxx

  • Hi Susie,

    I just wanted to reply because your reaction to your diagnosis was so similar to mine! I had suffered no significant health problems, aside from teenage migraines, until I suffered 4 miscarriages. I was diagnosed with APS by prof Regan at St Mary's Recurrent Miscarriage clinic. I too came on this site and totally freaked about about the range and severity of symptoms endured by APS sufferers. I though 'Oh my god! Am I going to drop dead of a stroke? Will I have a heart attack? Do I have all these awful chronic symptoms waiting for me in later life? Will I have to be on medication my whole life?'. The short and scary answer is maybe. But that is not the full truth. I spoke to Prof Regan about my concerns and she explained it to me like this: there are lots of very unfortunate people who suffer with this disease on a daily basis and are diagnosed as a result of their (often serious) symptoms. HOWEVER: there is an increasingly large group of APS sufferers who are diagnosed only as a result of recurrent miscarriages (like you and me). There is no reason to presume that you will necessarily develop other symptoms. Pregnancy itself is a pro thrombotic state, which combined with the APS causes problems - so in effect pregnancy acts as a trigger. But you can be medicated during pregnancy, and then may very well have no symptoms afterwards.

    Not enough is known about the long term effects of APS, much less about the future for sufferers like you and me. Yes, you need to be vigilant, and if you feel that your general health is not right then you can speak to your doctors about your APS. But I just wanted to say, don't panic! I spent about 6 months being terrified about every twinge, and then I decided not to be scared anymore, and just deal with things if and when they come up. And here's hoping neither of us have to suffer any more than we have already.

    I'm trully sorry for your losses, I know how much it hurts. But APS is one of the most treatable causes of recurrent miscarriage, so now you know about it your next pregnancy stands so much of a better chance. Sending you all good wishes xxx

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