Should I be under the care of a specialist?

Hi, I was diagnosed with APS 6 years ago following several miscarriages. I did see a blood specialist at the time for a very brief meeting where I was giving a list of things I would need to do if I got pregnant ( wear support stockings and take heparin) and a list of symptoms for DVT and pulmonary thrombosis etc. I have now had two successful pregnancies and whilst I was taking heparin during this time I know am on no medication and not under the care of any specialists regarding my APS. Is this normal and would I only get this if I have a DVT or worse? Thanks.

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  • Hi Caroline, that is an interesting question, which is hard to answer. I myself only had pregnancy problems (HELLP syndrome) and was diagnosed afterwards in 2014 (so no clotting incidents). The advise focused largely on what to do if I got pregnant again (plus never to use any hormonal birth control and keep walking on long flights) and I did ask if I needed to go and see another specialist, but this was not the case. Also there was not enough evidence that baby aspirin would help (I even discussed several studies on this with the specialist at the academic hospital) so I am not on any meds, like you. I just wanted to mention this so you know you're not the only one who is in this position. Whether you indeed should seek additional help I'm afraid I cannot answer for you. It may vary per country (I'm in the Netherlands) or hospital and also if you experience any other symptoms I guess.

  • Hi, similar experience here. After being to the pregnancy loss clinic, I met with a haematologist who went through some lifestyle and medical history questions. He concluded that as I'd never had a clotting experience outside of pregnancy and there wasn't a strong family history of dvt, I wouldn't need to be on anything unless I'm pregnant. I have taken many transatlantic flights and was on the pill for approx 15 years so these were also factors he took into consideration. But he did schedule a follow up appointment for me 6 months after the original appointment, just to stay on top of things I guess. I will be going back to him next week. I'm currently 32 weeks pregnant and taking baby aspirin and heparin daily but will come off these once the babies are born. But I'll see what he says next week. Might be no harm for you to get a referral from your GP if you are concerned.

  • Hi and welcome to our site!

    First of all I think Beartje gave you a very good advise as she knows how it is to be in your situation.

    I am a grandmother but I have APS and have been on this site for some years.

    If i were in your shoes I think I should learn about this illness so you know if you have other symptoms now or in the future. Knowledge is power with this rare illness!

    To begin with I was on a low dose Aspirin as many on this site are and then I had to go over to Warfarin. I did not have this illness when I got my two children.

    But if you have no symptoms be happy with your two children and live your life as usual.

    Have you tested positive to any antibodies for APS? If so you could ask you Specialist if you could take a low dose of Asprin (75 - 100 mg) every day together with food.

    Best wishes from Stockholm!

    Kerstin

  • This question came up on one Patients Day which Prof Khamashta answered. Basically what he said was that there is now thinking that some women who have APS during pregnancy only have obstretic APS. You don't say if you have any symptoms so Im guessing not. If thats the case and you are symptom free and only get issues when pregnant, then perhaps be aware of this disease, know what the symptoms are and if in the future you start to get any underlying symptoms or more importantly any other auto immune disease, go straight to a APS specialist and get yourself checked out. Baby Aspirin when flying long flights may be a wise precaution too. This is a developing disease which they are still learning so much about, so just keep tuned in to the research.

  • Hi.I was told I only have obstetric Aps but had positive ACAs show up again on blood tests. Would Hashimoto's thyroiditis be considered an overlapping disease? Or endometriosis (some say it's autoimmune)?

    Thanks.

  • It certainly would. Hashimotos is autoimmune thyroid disease. Prof Hughes often talks about the trio that comes with APS of Thyroid, APS and Sjogrens. Looks like you have two of the three!

    I myself started with Hashimotos as far as positive antibodies go. I was having symptoms of APS but no one tested me for the disease......everything else but!! Eventually had a PE, still no test....then a stroke and finally was tested. I then got the other 2 added to my list!

    I also had endometriosis!

  • Thanks! I was taking aspirin 75mg but wasn't sure if it was necessary given the new info about obstetric APS

  • Some are worse in pregnancy like me, however I have continued to have other symptoms and other overlapping diseases. I was put on 2 x 75 Aspirin a Day which is regularly reviewed, and of course would change if I had another clot. MaryF

  • Thank you so much for all of your very helpful replies. Yes, I am symptom free now and think I will just take your advice and keep up to date on here. Thank you again xxxx

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