Sticky Blood-Hughes Syndrome Support

What should I do ?

Good morning...I am looking for some advice please. I was diagnosed with PAPS in 1998 after three recurrent miscarriages, also polycystic ovaries and was told that this is also Hughes syndrome. Over the years I have noticed symptoms such as dizziness, almost blacking out, aware of my pulse in my hearing. My memory is worrying me as I forget a lot of things that I don't think I should. A horrendous headache at the base of my skull that lasted for months and I could not bend down. A lot of heart palpitations/fluttering and feeling that I could collapse when it is happening..legs going numb at the same time. Should I be medicated for the Hughes syndrome ?....Many Thanks in advance :)

7 Replies

Hi and welcome, firstly where are you located. If you have had a diagnosis for Hughes Syndrome/APS you need some regular care for this. Also it is not unusual to have Thyroid issues with this, and I note your Polycystic Ovary Syndrome which is of course another endocrine issue. We have a list of specialists in the UK, so your GP could refer you, if not in the UK, I/we will endeavour to help further. MaryF


Hi Mary, thanks for your reply. I was diagnosed with Primary Antiphospholpid Antibody syndrome due to the miscarriages and was told at the time that it was PAPS as I was not having symptoms outside of the pregnancies. I am in Colchester in Essex.


Hughes Syndrome/APS can change over time. You very clearly need help now. Please get your GP to refer you:

Also have a look at the entire charity webiste when you have a mo:

A lot of people end up going to St Thomas' Hospital. If there is a failure to refer some go privately to the London Lupus Centre, having done their blood tests locally. Come back to me/us if a problem.



Thanks very much. I will go to my GP. I had three successfully pregnancies under St Marys care in London. I am interested in possible connection to Asperger syndrome also as I believe my son is on the spectrum. I also had to have an ovary removed in an emergency operation as their was a massive cyst. Thanks...looks like I should be following this more closely. :)


If your GP is redoing blood tests, then as well as the ones listed below, get a Thyroid panel done, also you levels of D, B and Iron looked at. The test need to be done either early in the morning so they don't hang around for collection or do them at the hospital.

Let us know how you get on. MaryF


First of all, wellcome to this friendly site.

I totally agree with the very good information you have got from MaryF.

I wish you good luck and please stay on here. We have a lot of helpful members.

Best wishes from Kerstin in Stockholm


Hello and welcome

I completely agree with what my colleague Mary has advised you and what my colleague Kerstin has said too.

You need to be seen by a consultant who is knowledgeable about APS as you may need anticoagulation medication to protect you and to deal with the symptoms that you describe.

Best wishes.



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