My girlfriend thinks she has Hughes syndrome

[martin290690]

My girlfriend thinks she has Hughes syndrome she has had four Misscarages since March last year and found to have antibodies in her blood we have an appointment at the Misscarage clinic but she has just found out that she is pregnant for the fifth time she has two healthy children already and I have one both to somebody else she mentioned about having aspirin to thin the blood out because of blood clotting so I went out and bought them for her now she is scared of taking them I was just looking for some advise really can they test for it while she is pregnant and is there still things that can be done for her to help she doesn't deserve to go through an other Misscarage again

[MaryF Administrator]

Hi there, we can't advise on medication as we are not medically trained, but of course many people do take Aspirin on a full stomach, under guidance of the GP or consultant, where are you located? It is vital that she is referred urgently to one of our specialists: hughes-syndrome.org/self-he...

Your girlfriend needs help sooner rather than later, and often with the help of the correct medical consultant Aspirin and other medication prevents the blood being too sticky and helps with the pregnancy.

Aspirin does not thin the blood, an anticoagulant will do that, however what Aspirin does do is make the blood platelets slippery and helps them stop clumping together and making clots.

Please make sure you attend any appointments with her to push the correct referrals on a bit, and keep us posted. Welcome by the way. MaryF

[martin290690 in reply to MaryF]

We live in Stockport do you know where the nearest place is we have an appointment at the Misscarage clinic on Thursday but they said she needs to not be pregnant for blood tests that we are both having to find out if it's something to do with us I think but she has read up about this Hughes syndrome and thinks she might have it I know she does get a lot of headaches and that might be why she thinks she might have this

[MaryF Administrator in reply to martin290690]

Have you checked the link I sent you, with the list of specialists.. please look... MaryF

[martin290690 in reply to MaryF]

Yes I have just checked I will ring them tomorrow will it cost any money my girlfriend has just said it will just wondering

[MaryF Administrator in reply to martin290690]

It depends if you are going ahead on the NHS or privately. If you are opting for a private appointment it will cost you, but if NHS it will not. MaryF

[martin290690 in reply to MaryF]

Mary f can we just ring up the specialists and make an appointment without going to her gp?

[MaryF Administrator in reply to martin290690]

You will need to go through your GP for the appointment on the NHS, but if privately you can book directly. MaryF

[MaryF Administrator in reply to martin290690]

If they have found antibodies in her blood then she does indeed have the condition. Please have a good look at our charity website, hughes-syndrome.org/ and here also is a film: youtube.com/watch?v=V3J8BLk...(Not working as expected?)

Please express clearly to your GP that your referral needs to be urgent.

MaryF

[martin290690]

I think they said that not to check for antibodies but to check if they could find a reason that we keep having Misscarages we know that the midwife found antibodies in our first pregnancy but then nothing came of it after we lost it

[Manofmendip]

Hi and welcome.

I have read this thread with interest and I fully agree with the advice that my two colleagues have given you.

Dave

[martin290690 in reply to Manofmendip]

Well we have got an app at the Misscarage clinic tomorrow should we ask for her to be tested there or make an app at her gp's ?

[Manofmendip in reply to martin290690]

Ask there Martin.

Dave

[MaryF Administrator in reply to martin290690]

You need to be firm and ask for these tests to be done: hughes-syndrome.org/about-h...

You also need to mention that she has had the antibodies show up in her blood before, and you need immediate help to prevent yet another miscarriage.

MaryF

AND you definitely need to be referred to one of the specialists off the list I sent you. This is very important indeed.

[martin290690]

Thank you very much for all of your help I have printed off everything off this page and will make sure we get the tests done or atleast get the ball rolling I shall let you know how things go👍

[eciu in reply to martin290690]

Does she have a copy of her previous bloodwork that you could take with you when you go to the doctor?

[eciu]

There's a chance that if BOTH partners are having bloodwork done the tests in question may be to rule out a different potential cause of miscarriage. Could it be a chromosomal analysis? I have no idea whether a current pregnancy is a problem for that test.

[bubblybev]

They can definitely test for APS when a woman is pregnant - as that's how I found out I have APS.

I found out I was pregnant in January. In February I had another blood clot. As this blood clot was unprovoked (no injury etc) the Physician immediately went looking for a biological cause, and as a consequence I was provisionally diagnosed with APS, which has subsequently been confirmed. All of this was done in ED/hospital outpatient clinics, not in a GP clinic.

[martin290690 in reply to bubblybev]

They told us at the miscarriage clinic they couldn't check for APS but they took our bloods for chromosome tests and they said it would take 7 to 8 weeks for results but how do we go about getting tested for APS while she is pregnant now then?

[bubblybev in reply to martin290690]

I don't understand why they can't check your girlfriend for APS. It doesn't make sense. When I had my blood clot in February they took blood from me to specifically test for APS (as that was what they were suspecting). They took blood from me and sent it off and the results came back in just under three weeks - which is not bad at all as I live in remote Australia. This gave a provisional diagnosis. I then had repeat bloods done which confirmed the diagnosis. All this was done whilst I was (still am) pregnant.

I have had a couple of doctors say sorry for the diagnosis as it is a label that I will now have for life, and it has long term ramifications. After the shock of it wore off I feel OK with it. The diagnosis explains what has happened in my life and I can now just get on with my life, although I'm not a fan of the Clexane injections ATM.

I think you need to get a second opinion if you are worried and unsure. If you are in the UK this support group has a list of UK specialists. I live in remote Australia and I have ben well looked after by the Physicians at Alice Springs Hospital and the Obstetrician and Haematologist at Royal Darwin Hospital - no APS specialist here!