Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries. Click here for a comprehensive snapshot.Headache or migraine
Did you suffer from headaches or migraine as a teenager? So often this is one of the major features of the illness. Sometimes the headaches disappear in the 20’s to return with a vengeance in the 30’s or 40’s. This is a most important feature of Hughes Syndrome, and a symptom which sometimes improves dramatically whentreatment is started. Often migraine features such as flashing lights and zigzag patterns accompany the headaches found in Hughes Syndrome patients.
Giddiness
For reasons not completely understood, the brain appears particularly sensitive to the clotting effects of antiphospholipid antibodies, and one of the ways in which it reacts to "sticky blood" affecting its oxygen supply is to cause balance disorders. Many patients complain of feeling giddy or "slightly drunk" and this can naturally lead to accidents.
Memory loss
When the brain is starved of oxygen (blood supply) it only has a limited number of ways of complaining, and a common symptom of Hughes Syndrome is memory loss. Many patients feel that they are developing Alzheimer’s disease when they can’t remember names of friends and family, forget their shopping lists and get their words and sentences muddled. One of the most dramatic observations in the whole of medicine is the improvement of memory (and the disappearance of the headaches and ‘fog’) which patients observe when blood thinning medicine is started.
Visual disturbance
In addition to the flashing lights and zigzag patterns which can accompany headaches and migraines, the person with Hughes Syndrome can experience double vision or sudden visual loss. This can be caused by the brain reacting to disturbances in its supply of blood or by the veins and arteries in the eye being affected.
Skin disorders
Many Hughes Syndrome patients complain of ‘cold circulation’ and this sometimes manifest as a blotchy appearance of the skin of the arms and legs, described in medical textbooks as “livedo reticularis” or, more prosaically, as “corned beef skin”. It can also cause repeated sores (ulcers) and bumps (nodules) of the skin.
Thrombosis - DVTs
Thrombosis, or blood clots, can occur in the untreated patient at any time and in any part or organ of the body. For example a deep vein thrombosis or DVT can form in the arm or leg after a long journey, or in some women, after starting the contraceptive pill. Clots in the veins can cause inflammation of the veins (thrombophlebitis) of the legs with pain in the thigh or calf, swelling of the leg, and sometimes a visible red, thickenening blood vessel. Thrombosis can also affect vital organs such as the eye, liver and kidney.
Heart attack
Hughes Syndrome can lead to heart attacks and heart valve problems that can mimic bacterial endocarditis, and can create clots in the upper chambers of the heart. Up to 20% of young people (under 45) who have a heart attack have antiphospholipid antibodies.
Stroke
The most feared complication of blood clotting is strokes – paralysis. There are many causes of strokes – for instance, raised blood pressure, but most surveys show that 1 in 5 “young” strokes (under the age of 45) are now associated with Hughes Syndrome (APS). In other words, in an ideal world, up to 1 in 5 “young” strokes could be prevented. This observation is very important. Even now, in the age of easy blood diagnoses of Hughes Syndrome, many patients are not receiving adequate anti-coagulant treatment of their “sticky blood”, and are suffering early mini-strokes or TIAs (transient ischemic attacks) or more permanent strokes.
Pulmonary embolism
A lung embolus (pulmonary embolism) occurs when a blood vessel supplying the lung becomes clogged up by a clot - a lump of coagulated blood. Blood clots in the lung can cause chest pain, shortness of breath and rapid breathing. Repeated clots can cause elevated pressure in the blood vessels around the lungs (pulmonary hypertension), which may cause the person to be constantly short of breath. Larger emboli in the lungs can be lethal.
Multiple sclerosis-like features
Some people with Hughes Syndrome develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. Consequently, one of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis, and the clinical team here are continually treating patients who had been previously misdiagnosed with “multiple sclerosis”.
Gastrointestinal disorders
Hughes Syndrome can affect the blood supply to the intestines, causing abdominal pain, fever and blood in the stool. Antiphospholipid antibodies can also cause a condition called Budd-Chiari syndrome, in which a blood clot prevents blood from flowing out of the liver and the person may then experience nausea, vomiting, jaundice (yellow skin), dark urine and the swelling of the abdomen.
Pregnancy problems
One miscarriage is a disaster. Two is worse. Imagine the suffering of women who have 3, 5, 7 or even 12 pregnancy losses, and sometimes as late as the last few weeks of their pregnancy.
We now know that Hughes Syndrome is the most common treatable cause of recurrent miscarriage: depending on which study you quote, the figure is up to 1 in 5. Furthermore, late pregnancy loss, fortunately an unusual problem in pregnancy, is very strongly associated with Hughes Syndrome as is pre-eclampsia, placental abruption and intra-uterine growth restriction.
For the sake of a simple blood test, patients with miscarriage or late pregnancy loss can be tested for Hughes Syndrome. Treatment of these patients has proved one of the true successes of modern medicine, the successful pregnancy rate rising from a previous low of fewer than 20% to figures now in the region of 75-80% success rate. Treatment is with low-dose aspirin and/or heparin.
Did you suffer from headaches or migraine as a teenager? So often this is one of the major features of the illness. Sometimes the headaches disappear in the 20’s to return with a vengeance in the 30’s or 40’s. This is a most important feature of Hughes Syndrome, and a symptom which sometimes improves dramatically whentreatment is started. Often migraine features such as flashing lights and zigzag patterns accompany the headaches found in Hughes Syndrome patients.Giddiness
For reasons not completely understood, the brain appears particularly sensitive to the clotting effects of antiphospholipid antibodies, and one of the ways in which it reacts to "sticky blood" affecting its oxygen supply is to cause balance disorders. Many patients complain of feeling giddy or "slightly drunk" and this can naturally lead to accidents.
Memory loss
When the brain is starved of oxygen (blood supply) it only has a limited number of ways of complaining, and a common symptom of Hughes Syndrome is memory loss. Many patients feel that they are developing Alzheimer’s disease when they can’t remember names of friends and family, forget their shopping lists and get their words and sentences muddled. One of the most dramatic observations in the whole of medicine is the improvement of memory (and the disappearance of the headaches and ‘fog’) which patients observe when blood thinning medicine is started.Visual disturbance
In addition to the flashing lights and zigzag patterns which can accompany headaches and migraines, the person with Hughes Syndrome can experience double vision or sudden visual loss. This can be caused by the brain reacting to disturbances in its supply of blood or by the veins and arteries in the eye being affected.
Skin disorders
Many Hughes Syndrome patients complain of ‘cold circulation’ and this sometimes manifest as a blotchy appearance of the skin of the arms and legs, described in medical textbooks as “livedo reticularis” or, more prosaically, as “corned beef skin”. It can also cause repeated sores (ulcers) and bumps (nodules) of the skin.Thrombosis - DVTs
Thrombosis, or blood clots, can occur in the untreated patient at any time and in any part or organ of the body. For example a deep vein thrombosis or DVT can form in the arm or leg after a long journey, or in some women, after starting the contraceptive pill. Clots in the veins can cause inflammation of the veins (thrombophlebitis) of the legs with pain in the thigh or calf, swelling of the leg, and sometimes a visible red, thickenening blood vessel. Thrombosis can also affect vital organs such as the eye, liver and kidney.
Heart attack
Hughes Syndrome can lead to heart attacks and heart valve problems that can mimic bacterial endocarditis, and can create clots in the upper chambers of the heart. Up to 20% of young people (under 45) who have a heart attack have antiphospholipid antibodies.
Stroke
The most feared complication of blood clotting is strokes – paralysis. There are many causes of strokes – for instance, raised blood pressure, but most surveys show that 1 in 5 “young” strokes (under the age of 45) are now associated with Hughes Syndrome (APS). In other words, in an ideal world, up to 1 in 5 “young” strokes could be prevented. This observation is very important. Even now, in the age of easy blood diagnoses of Hughes Syndrome, many patients are not receiving adequate anti-coagulant treatment of their “sticky blood”, and are suffering early mini-strokes or TIAs (transient ischemic attacks) or more permanent strokes.Pulmonary embolism
A lung embolus (pulmonary embolism) occurs when a blood vessel supplying the lung becomes clogged up by a clot - a lump of coagulated blood. Blood clots in the lung can cause chest pain, shortness of breath and rapid breathing. Repeated clots can cause elevated pressure in the blood vessels around the lungs (pulmonary hypertension), which may cause the person to be constantly short of breath. Larger emboli in the lungs can be lethal.
Multiple sclerosis-like features
Some people with Hughes Syndrome develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. Consequently, one of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis, and the clinical team here are continually treating patients who had been previously misdiagnosed with “multiple sclerosis”.
Gastrointestinal disorders
Hughes Syndrome can affect the blood supply to the intestines, causing abdominal pain, fever and blood in the stool. Antiphospholipid antibodies can also cause a condition called Budd-Chiari syndrome, in which a blood clot prevents blood from flowing out of the liver and the person may then experience nausea, vomiting, jaundice (yellow skin), dark urine and the swelling of the abdomen.
Pregnancy problems
One miscarriage is a disaster. Two is worse. Imagine the suffering of women who have 3, 5, 7 or even 12 pregnancy losses, and sometimes as late as the last few weeks of their pregnancy.
We now know that Hughes Syndrome is the most common treatable cause of recurrent miscarriage: depending on which study you quote, the figure is up to 1 in 5. Furthermore, late pregnancy loss, fortunately an unusual problem in pregnancy, is very strongly associated with Hughes Syndrome as is pre-eclampsia, placental abruption and intra-uterine growth restriction.
For the sake of a simple blood test, patients with miscarriage or late pregnancy loss can be tested for Hughes Syndrome. Treatment of these patients has proved one of the true successes of modern medicine, the successful pregnancy rate rising from a previous low of fewer than 20% to figures now in the region of 75-80% success rate. Treatment is with low-dose aspirin and/or heparin.
