Hughes Syndrome

As a result of the last lot of blood tests I had done at the miscarriage clinic, I have been diagnosed with a condition known as Hughes Syndrome or the medical term – antiphospholipid syndrome (APS).

Hughes syndrome is named after Dr Graham Hughes, who along with his team in London, was the first to describe the condition in 1983. Also known as ‘sticky blood’, it is an autoimmune disorder, in which there is a danger of thrombosis (clotting). Those affected are at risk from vein thrombosis, including deep vein thrombosis (DVT), and arterial thrombosis, which increases the risk of stroke and heart attack.

In women with the syndrome, the ‘sticky blood’ is unable to get through the sensitive small blood vessels in the placenta to the foetus, therefore left untreated, there is a risk of recurrent miscarriage. The condition affects millions of people around the world although once diagnosed, it can usually be treated successfully. However as it is a relatively new condition, it often goes undetected or is misdiagnosed.

It is not necessary to have all symptoms to be diagnosed with Hughes syndrome – the main symptoms include an alarming list of things ranging from migraines to stroke and heart-attack.  Two of the more minor symptoms – trouble with balance and feelings of giddiness, and memory loss are symptoms I manifest and of course the most distressing of all,  recurrent miscarriage.

Two blood tests are often used to help diagnose the condition, but as they are not totally reliable, they are usually used in combination with the patient’s history. A simple blood test which is used to detect the antiphospholipid antibodies is positive in about 80% of cases. Another test, confusingly called a lupus anticoagulant test (it is not a test for lupus and it is not an anticoagulant) is also used to help confirm the diagnosis – this is positive in about 30-40% of cases. It is usually advisable to repeat the blood tests on more than one occasion, especially if the results are ‘borderline’ or ‘doubtful’. One positive test for antiphospholipid antibodies does not mean that a person has Hughes syndrome. For this reason, the test should be repeated after six to eight weeks.

Tests that are only just positive and that are present on only one occasion may not be significant. This is because harmless antiphospholipid antibodies can be detected in the blood for brief periods, occasionally in association with a wide variety of conditions, including infections and certain drugs (e.g. antibiotics and certain blood pressure pills).

Due to the increased tendency to clot, the main aim of treatment is to ‘thin’ the blood, so that this risk is reduced. For most patients, this is usually achieved by providing anticoagulant (anti-clotting) therapy based on the extent of the clotting. There are currently three main medications – aspirin, heparin or warfarin. For many thousands of patients, one ‘junior’ aspirin a day (equivalent to one-quarter of a regular aspirin) is all that is required. Its main action is to make the platelets of the blood less ‘sticky’ and therefore sufficient to hold off clotting. It is the main medication used in pregnancy in Hughes syndrome patients who have suffered a previous miscarriage.

For those who have actually had a thrombosis, the choice is between heparin and warfarin. Heparin is a very useful anticoagulant but unfortunately is only available as an injection, and cannot be given long-term because of an increased risk of osteoporosis. It is, however, used in some Hughes syndrome pregnancies, as warfarin is potentially toxic to the developing foetus.

For most people with thrombosis, warfarin is the treatment of choice. Used for many decades warfarin is the ‘gold standard’ anticoagulant tablet and provided that the anticoagulation dose is monitored carefully to test that the patients blood is thinning to the correct degree, it is an extremely safe drug.

I have been told that should I become pregnant again, I will need to inject heparin. I will inject anything, despite my needle phobia..now all I need to do is get pregnant again!

(Medical Info from Irish Health.com)

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4 Comments (+add yours?)

  1. Guest
    Apr 08, 2010 @ 22:47:08

    Actually there are 4 tests for APS. APS and the False DVVRT (now known as part of the Lupus Anticoagulant) was on the books in 1906.

    Reply

  2. chrissy
    Apr 10, 2010 @ 14:17:41

    This has been a really helpful and timely article for me..thank you for posting!

    Reply

  3. Lorna
    Apr 15, 2010 @ 19:57:15

    I take the Nuseals aspirin, can’t remember why but apparently a lot of women take the aspirin and then the Heparin when pregnant. Am glad you are finding out some reasons for the miscarriages, all hopeful for the future.

    Reply

  4. Steph
    May 03, 2010 @ 20:56:11

    Marie

    I’ve come to this news rather late.

    While I’m sure that you’re probably still trying to come to terms with the diagnosis, I guess you must also be relieved to have at last got an explanation for the recurrent miscarriages.

    It’s great news to hear that Hughes Syndrome can be successfully treated!

    Reply

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