Welcome to the forum Gemma!
I don't blame you for feeling confused. Lupus can be a very confusing disease, diagnosis can be difficult and doctors themselves can be confused and plain ignorant.
I strongly advise you to start taking control, first by getting all test results (making sure what they are when they are ordered) and then little by little learning what their significance might be, how they relate to lupus in general and your lupus or whatever in particular.
For example, there is no single lupus test: diagnosis is based on symptoms as much as blood test results. Of course tests can indicate conditions and symptoms that are not obvious to patient or doctor. It would be very unusual to get a lupus diagnosis without any sort of abnormal test results whatsoever including imaging, abnormal skin or kidney biopsy. The physician's expertise is all important in tricky cases.
So what was this "lupus test? I can't say, but in the context of bloodthinning, the INR test springs to mind. This stands for International Normalised Ratio and it is used when people are on blood thinners to make sure the recommended therapeutic level of decoagulation is being achieved. The norm is about 1. I don't know how abnormal 1.44 might be but most blood test levels vary from time to time just as the body goes about its regular functions.
However this is not described as a lupus test: it is used in all the circumstances that people require blood thinners.
Now, there are tests to measure blood clotting factors in the blood known incorrectly as the
" lupus anticoagulant" simply because these antibodies were first identified in lupus patients.
I will put some links to the tests that are in use for this condition. I don't know what the normal ranges for these clotting tests is.
A false positive VDRL (syphilis) test could be another indication
There's another range of tests for antibodies associated with APS called anticardiolipins.
This is more significant than the LA because these antibodies are rarely found in other conditions. Both tests need to be done at at least 6/8 weeks interval because either one can be negative at any given time. The need for repetition of both tests is particularly important for including patients in trials and research. Low positive is 0-15 IGg units, medium between 20-50, high over 50.
This group of antibodies are called the antiphospholipids. Their presence is one of the criteria for a diagnosis of lupus. I have read that about one third of patients with lupus have them but they can be present without any obvious associated symptoms. Obvious symptoms are strokes, TIA's, seizures, 'absences', DVT's and other organ thrombosis, arterial thromboses, recurrent miscarriages, certain movement disorders such as chorea. There may be more subtle symptoms such as headaches, memory loss and other cognitive impairment, balance problems
There may be symptoms very like some of those found in MS with spinal cord disorders with resultant misdiagnosis and wrong, even harmful, treatment and the right treatment neglected resulting in worsening that could easily have been avoided.
As many people have primary APS not associated with lupus as have lupus without APS. However people with PAPS might have other autoimmune diseases apart from lupus - thyroid and Sjogren's are especially associated with APS, according to Dr Hughes.
I don't think they know yet, why some patients with high levels of antiphospholipid antibodies suffer from them but others don't, but everybody with them can be assumed to be at greater risk. Smoking and using hormonal birth control or HRT could increase the risk and people with APS are generally advised to avoid hormonal intake.
Preventative measures are low dose aspirin a day, 75mgs in the UK, and if the patient has lupus they will probably be on Plaquenil which has slight blood thinning as one of its beneficial side effects so could be an additional help.
Clearly if the patient has already suffered clotting events the decision how to treat them is more complicated since the major blood thinners like Coumadin( warfarin) and heparin do have side effects. Different doctors will almost certainly have differing opinions.
Deciding if the patient also has lupus would be more complicated too I imagine.
I think a second opinion is an excellent idea and would even suggest a trip to see the top experts in London privately. Of course lupus has symptoms ! and you can't be diagnosed with lupus without symptoms, only the symptoms might not be very obvious.
Good Luck and please let us know how you get on
Clare
Main source, Dr Hughes, a "Patients Guide to Hughes Syndrome" 2001.
