1 positive test, pregnant -advice please...!

[Pregnantk]

Hi all, I am fairly new to all this and would love some advice on my current situation. I have a 5 year old son and a 2 year old son. I then had 3 miscarriages (one at 10 weeks, but not developed past 5-6 weeks, then 2 v. Early at 5 weeks). I was tested and results came back positive for anti cardiolipin antibodies only (64). This was just before or around the time conceived again.

I have no other symptoms and am a healthy person (aged 37). My first test was 8 weeks ago. NHS are refusing to do another as not 12 weeks apart yet (and say being pregnant can affect results). I am now 10 weeks pregnant and on aspirin and have just been given Fragmin (5,000 iu/0.2 ml) to start tonight. I am paying for a private repeat test today before starting the heparin tonight.

My question is, if this second test comes back negative does that mean I do not have APS? If this is the case I would like to stop the heparin (Fragmin) if it is not needed. I really want a midwife led unit water birth (attached to hospital). Does anyone have any advice surrounding this please?

The doctor I have seen really does not know much about APS I don't think as I ended up telling her things from your website. I am feeling like a number and just put on heparin as a precaution rather than proper investigations being done.

Many thanks

[MaryF Administrator]

Hi there, with your history I would not be too keen to stop the Fragmin! Welcome by the way, can you tell us where you are located. We have a list of specialists across the UK who understand the condition, you certainly need an obstetrician at a hospital where this condition is totally understood. If the test comes back negative, it does not mean you don't have the condition as you can go in and out of positive or negative testing. I was on fragmin for all of my pregnancies. Do have a really good look around the charity website, as it contains lots of useful information.

hughes-syndrome.org/ MaryF

[Pregnantk in reply to MaryF]

Hi thank you for your reply. I am based just south of London. At the moment I am seeing a doctor at Mr Shehata's clinic in Epsom hospital but midwife care and place of birth will be St Helier's hospital in Sutton. I really want to be referred to a specialist who understands the condition more. I asked the registra I saw at Epsom when that would be (e.g. To a heamoyologist) and she just said she didn't know...

Bit disappointed to hear a 2nd negative test can still mean you can have APS, but good to know all the same.

[MaryF Administrator in reply to Pregnantk]

Have a look through the specialists and push to go to one of them, and believe me it is far better to have a diagnosis than not to.... MaryF

[Tlove]

Hi, I tested positive for these anticardiolipin antibodies after 2 miscarriages and had to retest after 12 weeks but not while pregnant, so they are correct in what they say here. Like you, I got pregnant in between tests (which unfortunately also ended in mc) and had to wait for the second test. As a precaution during this 3rd pregnancy they did put me on blood thinners, but I believe there was another cause for that mc.

As Mary says, I would much prefer to be on the heparin as a precaution, rather than take the risk of losing more babies. Think of it as prophylactic treatment. I'm currently 16 weeks with twins and on aspirin and heparin. I will do anything it takes to prevent further misery with another mc.

Also, I did see a haematologist recently because I am like you, feel that I am otherwise healthy and wondered if APS could affect me outside pregnancy. In some people, it is pregnancy that triggers the symptoms and in others the symptoms are present outside of pregnancy. For you and me, it seems like the pregnancy is the trigger for the APS. The doctors are likely to keep you on it regardless.

[Pregnantk in reply to Tlove]

That is interesting, we sound fairly similar. Sorry to hear about your losses. Did the heamoyologist say they would retest you after pregnancy then decide if you need any further treatment afterwards?

Also have you been told you have to be induced? I'm guessing with twins it might be different anyway...

[Tlove in reply to Pregnantk]

So, after the 3rd mc I had the second test and was positive for the antibodies that second time. The haematologist went through my history with me and based on my answers concluded that pregnancy seems to be the trigger. I have a follow up with the haematologist in March but that appointment was set before I became pregnant, so I'm not sure what to expect. But when I met him in Oct he noticed I was missing some blood tests so he took these and I think the appointment in March must be to go through those results and to monitor me. Some tests take 3 months to come back!

I have been told that with twins you either get induced or have c-section at 38 weeks but this has nothing to do with aps.

[Pregnantk]

Thank you for the advice. How do I go about getting referred? Do I ask the consultant at Epsom or my GP?

[Pregnantk]

I just had a second blood test back (8 weeks after the first) and it is negative. Really not sure what to think now! Will carry on takin the Fragmin unless I get advised I don't need too. I really thought that if I got a negative for the second blood test it means I don't have APS but the more I read the more I realise this might not be the case!!