Hi was wondering if anyone could give advice i was tested for hughes syndrome as had alot of symptons blood test come back ok so gp left it

but when i had a reg blood test for a different medical prob the lady said i looked like she did on a bad day and she had hughes i feel so tired all the time no energy have joint pains have a heavy foggy head feel like i can't concertrate have head aches i;ve had a mini stroke and a heart attack and lost 3 babies 2 due to misscarrige and 1 to stillbirth i'm really not sure what to do

7 Replies

  • I'm no expert by any standards, but go back, and tell your GP, and ask for the test to be repeated, was it your GP who asked for the test originally??? ... If so he/she obviously has knowledge of Hughes, and therefore suspected that you might be suffering, and asked for tests in the first place, I'm afraid you need to keep at it though, as you will discover from others, lots of us has fights on our hands with the medical profession! Sarahx

  • Thanks i will speak to my new gp as just moved xx

  • Hello and first of all a warm welcome to our friendly site. You have landed in the right place so I hope we can help you. Many of us have this problem as Doctors who are not that clued up on APS just look at test results instead of the whole clinical history. You need to go back as has been suggested and ask for a referral to a specialist with good knowledge, a list of them can be found on the HSF website. In the meantime many of us consider a daily baby aspirin to see if that helps with symptoms to be taken with food.

    Do please keep us posted with your progress xx

  • Thanks so much and will do xx

  • Hi there, there is also this to consider, some of us fail the tests but still have Hughes Syndrome, myself and sisters fall into this group: ard.bmj.com/content/62/12/1...

    Mary F x

  • Hello!

    Two tests a few weeks apart may be needed for diagnosis of APS/Hughes. Even then, as Mary says, it may not show up in you but your symptoms will be familiar to many people on this site. Below is some info on APS blood testing. Good Luck and keep on keeping on! John.

    As antiphospholipid syndrome (APS) shares similar symptoms with multiple sclerosis, diagnosing it can sometimes be tricky.

    However, it is very important that an accurate diagnosis is made because the blood clots that occur as a result of APS can have serious consequences.

    Specific blood tests

    To diagnose APS, the blood needs to be tested for the abnormal antiphospholipid antibodies that increase the risk of blood clots.

    The blood tests used are designed to test for APS and the condition cannot be detected using routine blood tests. Two blood tests are required with a six- to eight-week gap in between them.

    Sometimes, harmless antiphospholipid antibodies can develop in the body for short periods of time, often as a result of an infection or as a side effect of medication, such as antibiotics.

    Therefore, if antiphospholipid antibodies are identified during the first blood test, another test will be needed at a later date.

    Medical assessment

    After the results of the blood tests have been confirmed, your medical history will be carefully assessed to check whether you have experienced any previous symptoms that may be caused by APS.

    (source: nhs.uk)

  • Have you seen copies of the tests and results? I only ask because the neurologists (yuck) told me I did not have any kind of clotting disorder following my TIA. I went to the hospital and got my entire chart and read it, and it turns out they never even tested me for APS. They ran some other IGG/IGM tests, but they were NOT a part of the APS antibody testing.

    I had to convince my GP to order the proper tests, and she even researched, made calls, and double checked to ensure she was ordering the correct labs. That is how I found out I tested positive on the anticardiolipin antibody panel. Did they give you the Lupus anticoagulant, anticardiolipin antibody panel, and beta 2 antiglycoprotien tests? Your symptoms certainly sound like APS.

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