clotting problems during all pregnancies/trouble now 10 years later

Hi! My name is Kimberly. I apologize in advance for my long post. I have been sick for a long time now. For the past two years I have had horrible vertigo. ENT's thought it might be Menieres disease. I have cognitive issues like, poor memory and brain fog, Last month I was rushed to the ER with stroke symptoms. They kept me for the weekend but couldn't find anything on my MRI and sent me home. The doctors thought I might have MS but that was ruled out too. I almost always have headaches now. I have been slowly getting better from that but now have a very sharp pain in my lower right ribcage that has hung around for about 2 weeks. I have had four pregnancies. I lost my first two babies. By my fourth pregnancy the found out my blood was over clotting and I had to take Heparin injections twice a day.

1. 1996-My first pregnancy started out fine and at my 20 week ultrasound they found that all my amniotic fluid was gone & my son had IUGR. They told me at that point that my pregnancy wasn't salvageable and I should expect to deliver him dead. As the week progressed they found out I had pre-ecclampsia that turned into HELLP Syndrome. They explained to me that my platelets were "eating" each other and I was very ill. I also had massive amounts of protein in my urine and abdominal pain on my upper right side. (I have that same pain on and off right now.) I got sicker and sicker and so did my son and he was eventually delivered pre-term and passed away three months later. At the time, they really didn't know how or why it happened. But they did say I would be a very high risk pregnancy from now on.

2. 1996-Three months after my son passed away I became pregnant again but only found out when I have having severe abdominal pain and it turned out I was having an ectopic pregnancy.

3. 1998-Pregnant with Kennedy-I was monitored constantly, she was always small for gestational size, my placenta always looked "ugly" according to my doctor. However, she was born healthy.

4. 2002-Pregnant with Lacey-New doctors at Good Samaritian Hospital in Cincy. They did some blood work and found that my blood was "over clotting". I was told to take Heparin shots twice daily and was monitored constantly. Lace was delivered early due to complications. She only spent 4 hours in the NICU and was fine. I however, developed staph infection at an IV site and had to go on antibiotics. Later, at that same IV site (while still on heparin) I developed a blood clot. I don't remember the specifics of it but the clot eventually went away.

I was told this clotting disorder would go away after pregnancy. From everything I'm reading this doesn't seem to be the case. From all my internet research I have all the symptoms of Hughes/APS. I went to the hospital where I delivered my last baby this morning for my records. It only states on my C-Section report that I was on Heparin prenatally for elevated antiplasmin levels and increased risk of thrombosis.

Does this sound familiar to anyone? Next steps?? Any help would be greatly appreciated.

9 Replies

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  • Those medical records sound very inadequate for the types of complications you describe. Did you have a specific Doctor in charge of your care and if so could he/she be holding more records?

    If I were you I would seek out an APS Specialist and get a consultation. My understanding is that once you have the antibodies for Hughes Syndrome and have been diagnosed with it then you have the condition even though the antibodies may come and go when you get tested.

    There are other conditions that can cause clotting problems other than Hughes and I am not familiar with those but if you go to a specialist and get the blood tests done along with your history which you will be able to supply verbally (and with any medical records), you should at least be able to rule it in or out and if its not get pointed in the right direction.

    I hope thats helpful, please let us know how you get on.

  • I am so sorry for all your problems and losses. Your history is almost the same as mine. Ist pregnancy ended 20 weeks baby had died

    2nd son born 31 weeks small for dates, I had been on heparin as had DVT the reason he lived I think, as 30 years ago I was kept in hospital from 26 weeks

    I had an ectopic pregnancy a couple of years later.

    My last pregnancy ended at 27 weeks as I developed hellp syndrome I was extremely ill and my husband was asked for permission to end the pregnancy.

    Sorry only have a small square to reply on this I will submit this bit of my answer and try again xx

  • Still small. I have severe dizziness treated with betahistine (serc) no side effects I came off it a couple of years ago, got so dizzy I couldn't stand, I am now on it for life.hellp syndrome effects the liver apparently I had ulcers all over mine. Upper rt side pain ? Gall bladder liver area. I think

    I have no liver problems now when I was sterilised at 23 the Surgeon had a look around with the camera thing my liver was back to normal. Placenta looked ugly .? Like my sons which had to be picked off him as it was necrotic caused by blood clots.

    I would see your Gp today take some information off the Hughes foundation site, if he/ she is up do date with the knowledge of Hughes syndrome. They should put you on anticoagulants .

    I was put on Asprin 75mgs several years later and following a clotting event was put on Clexane now warfarin. Hellp syndrome I didn't know what it was until about 10 years ago. I think it has something to do with blood clotting too

    I really think you should insist on a referral to a Haematologist, or Rhumatologists and stay in the surgery until you get this agreed.

    It's a shame but you have to look out for your self these days, don't be surprised if you were seen by a Neurologist and wasn't diagnosed with Hughes. It must not be in their training. Good luck xx

    Memory fog type goes or gets better on Clexane Wararin.

    Now writing on a square the size of a stamp so hope it makes sence

  • Thank you so much daisyd! I was just thinking...if this is Hughes, wouldn't I have had problems directly after my pregnancy? Why now after all these years would these things just start to crop up? My last daughter was born in 2002. Curious if symptoms can take that long to manifest?

  • Hughes Syndrome is a very complicated condition. For instance I had three miscarriages in the 70's as well as two normal pregnancies (sort of) but back then no one had heard of Hughes Syndrome. Over the years I had increasing typical APS symptoms, even being evaluated for MS in the middle 80's. In the 90's diagnosed with Hashimotos (often linked in with Hughes) then misdiagnosed with Fibro. I had a PE in the 2006 and growing neurological symptoms until my Stroke two years ago. Only then did I get diagnosed with Hughes and Sjogrens. So you see this can effect people in very different ways. Some people will get very bad symptoms and get diagnosed quickly and others will have bad symptoms but seronegative blood results making dx difficult. Others with have hardly any symptoms, will have the blood results but will query the dx because of the lack of symptoms. In short no two people can be the same but lots are very similar. Life is never simple is it?

  • It sure isn't! I am currently at the hospital waiting to get a CT scan of my abdomen done. Of course I haven't been diagnosed with Hughes/APS yet so the docs won't listen to me about prior clotting problems, etc. I wonder if abdominal problems/pain a Hughes are related?

  • Gall Bladder issues can be related and of course there can be other problems like kidneys although they are not run of the mill. I do hope you are ok whatever the issue and it is sorted out for you soon. x

  • Hi there, I wish you lots of luck with this, we are all so different, keep you history written out in bullet points and do please use any papers you need of the HSF website, obviously as mentioned above there are other things to look into, but still the clotting issues need to be carefully looked at, as they do not go away. Mary F x

  • So I got my blood work back and my antiplasmin levels are through the roof. No problems with the gall bladder. ER doc says possible ulcer? But I got my bloodwork panel back from my pregnancy in 2002 and it says negative for APS. Which is good news I guess but what could high antiplasmin do? Still a clotting problem... Micro clots could possibly cause all this this doc said off handedly.

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