Having a thyroid issue can cause those symptoms too so it's hard to isolate. The blood tests need to be repeated in 12 weeks time as they could be a response to something else and here in Aus anyway need to be highly positive (>40 something) plus a clinical event (some kind of clotting event) before APS will be diagnosed. The specialists here stick greatly to the Sydney/Sapporo criteria.
I've had three positive blood tests now and just awaiting results of a fourth. My Thyroid is ok, Graves is in remission. Everything is ok apart from anti-cardiolipins. I just have stupid anoying symptoms that come and go and don't seem to match Hughes. Autoimmunes suck! There's no black and white, they are all grey.
Pink_shrimp am confused why you have had more than 2 tests if they were both positive. You don't have to have had blood clots etc.I haven't but my coagulant tests were very high plus 80. I have been on warfarin since diagnosed.
Maybe not all the tests were positive? I agree that more than 2 positive tests is unusual. Not sure elsewhere but no one in Aus would be put on anticoagulants unless they'd had the clot issue and even then, if provoked it might be reviewed as whether permanent anti coags were prescribed. Aspirin would be used but that is OTC anyway.
HI, you have had some great feedback and advice so far which I agree with, you do need a specialist from the recommended list, on the right hand side of this forum, this will not only help you, but help your GP also. I further recommend you join Thyroid UK, on this same platform, as they are very helpful with Thyroid issues, a lot of us are on that forum also. Please let us know how you get on with any further appointments. MaryF
I am just stating our PBS guidelines that control the prescription of anticoagulant (and other) drugs. Anticoagulants can be prescribed for prophylaxis when having surgery and post DVT. That's is. We have strict guidelines on when prescription drugs can be prescribed.
........Those who have antiphospholipid antibodies but have never had a thrombotic episode or miscarriage are not typically treated. They may never be diagnosed with APS or have associated symptoms or complications.
The aims of testing are to diagnose APS and to distinguish it from other causes of symptoms and complications. Not everyone who has antiphospholipid antibodies has symptoms or complications. Therefore, a diagnosis of APS is made based upon both clinical signs and the presence of autoantibodies. At least one clinical sign and one autoantibody must be present. The following consensus guidelines are used:
Revised Classification Criteria for the Antiphospholipid Antibody Syndrome*
LABORATORY CRITERIA
Positive test for one of the autoantibodies must be present on two or more occasions at least 12 weeks apart:
Lupus anticoagulant: present according to the guidelines of the International Society on Thrombosis and Hemostasis
Anticardiolipin antibody present at a medium or high level
Anti-β2GP1antibody: present at a high level, greater than the 99th percentile for normal (as established by the testing laboratory)
CLINICAL CRITERIA
Vascular thrombosis:
One or more confirmed clinical episodes of arterial, venous, or small-vessel blood clot occurring in any tissue or organ
Pregnancy complications:
One or more unexplained deaths of a physically normal fetus at or after the 10th week of pregnancy
One or more premature births of a physically normal newborn at or before the 34th week of pregnancy due to pre-eclampsia, eclampsia, or a placenta that does not function properly
Three or more unexplained consecutive miscarriages before the 10th week of pregnancy.
The rheumatologist I see is on the Lupus 2017 organisational committee and was quite clear on how Australian doctors diagnose and treat APS
Yes - agree that link isn't the best but it was late at night and computer shut down.
A couple of these links are the government links to prescribing restrictions here in Aus and every Dr and GP must abide by them when prescribing or risk an enquiry by our Health Dept
I do not know how Drs might manage APS in patients without a DVT. I think it would be a wait and see which sounds dire. - to be honest I think that Doctors here would not prescribe anticoags to anyone who didn't have a dvt incident unless they were about to undergo surgery. I am always being told they have to carefully weigh the risk of bleeding versus the anti coagulant requirement. And prescription rules for Government subsidy of drugs is strictly enforced. These links are for X only as I am not on warfarin but warfarin is being prescribed less and less in the public hospitals
In all the prescribing guidelines that Doctors must follow there is strong enforcement of anti coag use for initial treatment and prevention of recurrence or only as prophylaxis post some kinds of surgery. There is no room for prescribing anticoags without a dvt presentation. That's it.
And even though I have had a jugular vein DVT that was unprovoked (very rare) AND tested positive for LAC a (dreadful) Rheumatologist here told me to stop taking X.
We have a way to go down here but the Government has tied up the prescription guidelines so much there isn't much Drs can do.
Anti coag treatment is regarded as high risk here I guess.
Wow thank you for your replies! Let me give you a little more background. Back in 2011 I had joint/ muscle pains and muscle wasting in left hand. Apparently, and I only just found this out, I was positive then but docs didn't think it relevant. I had ulnar nerve reduction for hand ( did no good) and muscle pain was blamed on low iron. ( I have reacuring low iron stores. I'm vegetarian) fast forward through the Reynards and Graves diagnosis and treatment and unresolved back/ shoulder pain to July this year. Blood test showed positive. 13 weeks later still positive. Referal to haematologist last week. She said APS is likely but wanted to rule out other things so took 6 more vials of blood. .
The only thing in brackets on my results Is AAJ3375 and after the IgG results it says 0.00-10.00gplu/ml and after IgM it says 0.00-10.00mplu/ml. Again, this means nothing to me, sorry.
Haematologist said treatment will be discussed if necessary at my next visit at end if Jan. Seemed unconcerned about my symptoms at the present time...wish I was unconcerned! Pins and needles, numbness and chest pain concerns me!
Again thank you all for your time in reading and replying. After a while you start ignoring symptoms coz you get used to them. Then you doubt that you are Ill and start to think your a hypochondriac. You are my confirmation that I'm not loosing my marbles!
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Magic? :)
Some advice for a newbie please?
I have MS, but I think it might be Hughes
Discharged from Lupus unit !
