Do confirmatory tests have to be positive for Hughes Syndrome?

[camerel]

I tested positive for lupus anticoagulant in the hexagonal phase after developing PE's in both lower lobes. I have all the classic symptoms and have had multiple DVT's. One doctor says I have hughes Syndrome and another doctor says that I don't because confirmatory tests are negative. I had an INR of 4 when confirmatory tests were done. So if I test positive but confirmatory tests are negative does that mean I don't have Hughes Syndrome and there is something else wrong? Does a confirmatory test always have to be positive?

[MaryF Administrator]

Hi there, the tests are not the be all and end all, it is great if you do pass them, as it gives more the medical staff more to go on, however many of us on here have had very obvious clinical symptoms and are classed as seronegative, I am one of these, also I have had clear symtoms of lupus since I was a teenager and at 47 only just managed to pass a test. As Professor Hughes says himself - it is the tests failing the patients rather than the patients failing the tests.

At least you have one sensible member of the medical profession looking at thsi with a clear head and some modern attitudes.

Mary F x

[camerel in reply to MaryF]

Thanks to everyone who has replied. I will definitely be getting rid of the hematology Dr who does not believe I can't be lupus anticoagulant positive without positive confirmatory tests. I went to him for a second opinion out of desperation hoping that he would ad insight as to how to deal with my brain fog, fatigue, muscle pain, etc. Instead he told me if I wasn't so lazy my brain wouldn't be so foggy and I would have more energy. He just didn't get the fact that I used to work out 4 times a week and the brain fog and fatigue that would consume me is what has kept me down and not shear laziness.

I went years being told I had deep seeded psychological issues causing my symptoms and found this wonderful doctor who discovered my Hughes Syndrome and all the pieces finally fit together. The warfarin helps some but next time I can't function ill just try to be patient instead of looking elsewhere for answers only to be told I'm lazy and with exercise I would feel better, etc.

Thanks again for putting my fears to rest that I need to start at point zero again trying to figure out what's wrong with me. I appreciate you all more than you know!

[MaryF Administrator in reply to camerel]

A lot of us have over lapping condiitions, if you read my up dated blog, you will see the trouble I have had with diagnosis, at 47 only just passed a lupus test having had obvious clinical symptoms since teenage years. It is frustrating, also found out I have sjogrens and also hpyothyrodiism and psoriatiac arthropathy, all these make you tired and foggy x

[jessielou in reply to camerel]

Hi Camerel

You are welcome hon, do you know lots of us have felt the same way, with doctors that either won't look deeper than blood results or listen to us. As my mum says, "don't let the bu##ers grind you down"!!!

We have to pace ourselves and listen to our bodies, rest when we need to, definitely not laziness, just those lovely little antibodies letting us know they are there! Be kind to yourself!!

We're here when you need us and will help if we can.

Take care gentle hugs love Sheena xxxxxx

[jessielou]

Hi Camerel

There is as Mary says sero negative Aps, also lupus anticoagulant test not necessarily reliable once on anticoagulants!!

The tests are an indicator and clinical symptoms are often a bigger clue to the medical profession! Amongst whom knowledge is sometimes limited!

Your symptoms similar to mine, go with the doc that believes and keep pushing for treatment and support!!

Wishing for better days for all of us!

Take care gentle hugs love Sheena xxxxx

[Storky]

Hello Camerel

Im another seronegative Hughie, don't pass any tests but have ALL the symptoms including miscarriages, PE's and Stroke before finally being diagnosed. Even now I have got one doctor who insists I don't have it but can't explain what I do!!

Prof Hughes and Khamashta said at the recent Patients Day in London that we have another antibody which is difficult to pick up on the tests. So as Mary so aptly says its the tests that fail us.

Try and get the Doctor who said you do have it to get that firmly on your records so that everyone else will accept it and avoid those that are negative.

Hang in there.

[siveinvan]

Camerel,

One more sero negative here. I initially tested positive (and was tested after 4 miscarriages only because of a genius hematologist in the '90's that knew her stuff) and now have been negative, like so many others on here. It can be incredibly frustrating and taxing. If you are in England, you have kind of won the APS lottery as you can actually go to see people who know what's up; namely Prof. Hughes and Khamashta. I am working slowly on a list in Canada...let us know where you are at..The doctor who said you have it is likely right...it's a tricky one to catch and it's usually the other symptoms (according to Pr. Hughes) that provide the diagnosis after a positive antibody 'sighting'. He just told me that my diagnosis of lymphocytic colitis is definitely part of APS....no one here believed that.

Keep us posted and go with your gut. The people on here are incredibly experienced and have multiple resources.

Sive

[Hidden]

Hi Camerel,

I have heard that once on anti-coagulation some of the APS tests stop testing positive (it could be the Lupus Anticoagulant?). There are 3 antibodies, Lupus Anticoagulant, Anticardiolipins and B2-glycoprotein (but the last one is not routinely tested).

I have found that most doctors who know anything about Hughes, know this piece of information and they don't tell you that "you don't have it".

I am not sure if anybody else has ever found this but through experience I found that D-Dimer tests do not work on me. As a D-Dimer test is a diagnostic tool in determining whether or not one has a clot it is vitally important. Each time the doctors would use this test on my anti-coagulated blood, the results would come back negative, even when I was sitting there, short of breath, coughing up blood, chest pain, the lovely D-Dimer test result for a blood clot was negative.

Until a doctor decided the lab test was not important, he could see there was a problem. He turned on the VQ scanner and there were all the PE's the D-Dimer tests missed.

The reason I tell you this is because, through researching this I found that Apparently a D-Dimer test does not work effectively on anti-coagulated blood. Anti-coagulation changes things, like test results, it doesn't make things disappear and for a doctor to ever think that could be a very big mistake.

Lisa

[MaryF Administrator in reply to Hidden]

A good point. I think test results can ebb and flow sometime people will get a negative after a positive or vice versa... however we all have something in common, the main factors of the disease, clinically speaking, which is why we are all careful to give each other the correct information, with the careful backdrop of the Hughes Syndrome Foundation. Best of luck Mary F x

[Kimmichelle86]

Hi,

I was tested at my local hospital, and was told it was negative, but i had all of the symptoms? after hours of researching on the internet it seems hospitals are not testing correctly? I tried to explain to my GP but he wasn't having any of it! in the end we paid privately to see Mr Raj Rai in St Mary's hospital London, what do you know- i got a positive result!

Best of Luck

Kim x

[MaryF Administrator in reply to Kimmichelle86]

Join the club, hopefully with this forum and beyond we can change attitudes across the UK, this is what we are attempting to do medically speaking and via enthusiastic patients! Mary F x