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Hughes Syndrome APS Forum

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Potential Diagnosis...

MemmaJ profile image
3 Replies

Hello everyone, I'm new here having searched for a place I can ask questions regarding APS as I'm worrying a bit..!

I gave birth to my 4th child (3rd birth as I have a set of twins) towards the end of May, and had a placental abruption in labour with her. As follow-up to this, I had some blood tests at the end of July for any underlying clotting/blood disorders which may have caused the abruption (standard protocol).

I fully expected them to come back completely normal and it just be put down to an unfortunate event, but it appears that my B2-GP1 antibodies have come back raised. I don't know the numbers as I just received a random blood form in the post from my doctor, with a note on it asking me to have them repeated 12 weeks from the first test - no letter of explanation or anything.

I rang the hospital to try and get the numbers but the Midwife I spoke to couldn't find that particular test/result on the system - the only one she could see that was raised was my APTT (38 - so only marginally), but he hasn't asked for the APTT to be repeated...

I guess my questions are - do a raised APTT and raised B2-GP1 antibodies usually go hand in hand, or does the APTT not really matter and they're only really bothered about persistently raised antibodies?

Also, how common is it for the second antibodies (12 weeks apart) to come back normal..? It's such a long time to wait and I'm a bit anxious already - but I will try not to stress too much if it's quite common for the second tests to come back within normal levels.

As far as I know, I didn't have any infections at the time of the first test and I wasn't on any medications. I also had a possible small abruption in my second birth (not confirmed), and I had a premature labour/delivery with my twins. I have no significant medical history outside of pregnancy, except that I have low Ferritin levels (only requiring treatment when pregnant, as it doesn't seem to affect me when I'm not). I understand APS isn't 'herditary' but my mum had a heart attack a couple of years ago caused by a clot, but I don't know if she was ever tested for things like APS as a result.

Thank you very much if you've got this far..! :-)

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MemmaJ
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3 Replies
HollyHeski profile image
HollyHeskiAdministrator

Hi and welcome. The process of diagnosing Hughes/APS is always having the blood tests done 12 weeks apart to rule out raised antibodies being an infection at the time. If both tests come back positive, then other criterias are looked at, like clotting history, family health, miscarriage or stillbirth.

At this stage try not to get stressed, in the long term its better to be diagnosed than not, to know one way or another. It sounds like they are looking after you, put it to the back of your head for now.

Stay in touch and let us know how you get on, xx

MaryF profile image
MaryFAdministrator

Hi, often three tests are done, and your positive result is indicative. Some of us have more symptoms than others. Mine still tests positive, but my main clotting issues happened during pregnancy. I always test my Thyroid, D, B12 and Iron levels regularly, and my family history of autoimmune including Hughes Syndrome, has been well documented. We are here to help, so as you get more information about your own personal case, we will help you.

I went through a negative period of testing for years, but now from time to time pass two out of the three. MaryF

lupus-support1 profile image
lupus-support1Administrator

Blood tests can and do change over time, which is why regular repeating of blood tests. If someone has had one miscarriage, it is advisable to investigate whether this is the antiphospholipid antibody (Hughes) syndrome. A friend of mine had 2 normal pregnancies and then a series of miscarriages, caused by APS. No one was interested until she found a haemotologist who knew about APS. Lupus specialists are also aware of APS as this condition was noted by Dr Graham RV Hughes, a lupus specialist.

I am not writing this to cause alarm but simply to say that these are cheap blood tests. Please get yourself a specialist and ease your mind.

With good wishes,

Ros

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