Sticky Blood-Hughes Syndrome Support

My journey

Diagnosed with aps after giving birth to my first child 13 weeks early . My son was born 1lb 12 oz. I was diagnosed with toxemia at 20 weeks later developed a placenta blood clot THEY TOOK HIM VIA C-section. I was then sent to a rheumatologist who found a heart murmur I had open heart surgery for a leaking mitral valve when my son was 15 months. I was told not to have anymore children I became pregnant three years later scared to death. A specialist started me on heparin and an asprin I went fullterm and had a baby girl. My kids are now 13 and 10 and my preemie baby is now 5 ft 9 " and an honor roll student. I haven't had any issues for a long time but I am now getting migraines and visual disturbances I am on aspirin and plaquinel and being referred to a neurologist. History of thyroid cancer with a thyroidectomy on synthroid and a lupus like syndrome. Is it time to go see a hematologist?

4 Replies

Dear Maizey

I amk so glad that your two children are doing well but sorry to hear that you are getting migraines and visual disturbances. Certainly both of these type of issues can suggest APS and your GP could be asked to test you for this; the tests that ae required are, I'm sure, detailed on the Hughes Syndrome Foundation website and you could print off some information for your GP.

When I was first diagnosed I had migraines, visual disturbances and also numbness in my fingers on my right hand that came and went and difficulty with put sentences together and memory problems. My GP sent me to a neurologist, who did lots of tests including those for APS and I was found to be positive. He sent me to a haematologist, who then sent me to see Prof Hughes. I was tried with Aspirin (not improvement), Plavix (no improvement), the Fragmin (Low molecular weight Heparin) this gave me improvment and I was subsequently converted to Warfarin, which kept me reasonably well for 7 years, apart from a bad clot in my right hip in 2006. Over the last two years I've been having 'funny turns' (see my blogs about them on here) and I am now back on Fragmin, instead of Warfarin, which seems to be helping.

Like you I had open heart surgery, for a narrowed coronary artery in my case.

Very best wishes and good luck.



Hi Maizey, so sorry to hear your story which echo's many of ours on here but happy that you have had a happy outcome again reflecting my and others story.

I echo everything that Dave has said but would just say that some are having issues with Haematologists at the moment especially if blood tests are coming back negative but they are presenting with symptoms. Some are even saying that patients don't have APS and suggesting they come off their meds in some circumstances.

Is it possible for you to go back to your original specialist that dx you as it seems so far you have had very good care? It is possible for antibodies to come and go and symptoms to disappear and then come back again so I do think its time for you to be checked out. If you don't see Prof Hughes as Dave suggested then you could asked to be referred to St Thomas depending on where you live but it sounds as if you have a good team around you already.

Please let us know how you get on. :-)



Hello, I agree with all of the above, and where possible going back to the original specialist or part of the team that has access to that particular mind set and your notes, is always a good idea. One day in patient Utopia regarding Hughes Syndrome and our associated disorders we will have consistent treatment and something called respect going on... it is coming, but we are not there yet. Best wishes Mary F x


Maizey - you sound so much like me. My premie weighed 1 lb 5 oz. He has some disabilities but is the sunshine of my life. We adopted our second son from Korea.



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