Sketcher198011 years ago

thanks, that info helps, I dont need to go to him for another 2 months and I feel awkward calling about random questions, so I just wanted to get some comfort in the meantime.

Sorry btw I meant my doctor is 75 and that in his long career he hadnt seen a number that high.

As for the INR some people with LA get inaccurate INR #'s, to the point where I could take a test 3 times in the same visit and theyd all come back different and sometimes very high , like 15 but they'd always be inaccurate so they came up with another test which i have to take at the office and has to be tested right away.

He did tell me just stay on the meds and it should be normal, I guess i got concerned when he said i had a high level on the antibodies and if that increases the right of clot reoccurence, even if im on a blood thinner, im in NY, USA btw. thanks!

strawberryblonde11 years ago

I have Lupus Anticouglant and APS and I'm on warfrain get my blood test done every 10 days to 2 weeks an INR which is for your warfrain level and recently I asked GP for an PTT which is called a partial thromboplastin time to test for the Lupus Antiouglant hope this helps a little

Sketcher198011 years ago

i think ptt is what I get, I go every 6-8 weeks (since ive always been stable knock on wood)

jessielou11 years ago

Hi hon,

I have lupus anticoagulant positive Hughes syndrome along with other conditions, having trouble with Inr at the moment, very unstable etc.

I hope you remain stable hon,

Take care gentle hugs love Sheena xxxxx

tassie11 years ago

Some people with antiphospholids get a false high reading with the machines ...I'm one of them so we need to have our INR checked via a venous draw. many others can get fairly accurate results with the coag machines.

The numbers for the Lupus anticoagulant often don't mean a lot other than you have them. Some people can have very low levels and lots of symptoms and others can have very high numbers and few if any symptoms and vice versa.

The Factor V Leidon is a completely separate blood clotting disorder and is genetic. It is treated with anticoagulants just like APLS. The main symptoms for that are blood clots and miscarriages whereas APLS or Hughes can give you a wide range of other issues.

I also have Factor V Leidon and Hughes along with a myriad of other issues.

Basically if you have had a positive result for antiphospholipids on more than one occasion and have had a major clotting event you will probably get a diagnosis of Hughes or APLS.

Not sure I've made any sense but hope so.

Sketcher198011 years ago

"The numbers for the Lupus anticoagulant often don't mean a lot other than you have them. Some people can have very low levels and lots of symptoms and others can have very high numbers and few if any symptoms and vice versa."

Thanks tassie, you were very helpful, this is what I was most worried about. I was worried that since my level of antiphospholids was so high that i was at a much higher risk of another dvt or worse.

I guess im lucky the ptt test seem to work for me although the only annoying thing is that i dont have a number to go by like the inr. Its either working or not working and its been so consistent I sometimes worry its not accuraate. But Ive been to 2 hemos over the year who've both suggested the same treatment and dosage level so I guess Im good.

I had an odd episode last year where I got double vision for a couple of minutes which led them to believe i may have had a tia but the MRI was clean. But going through that experience has given me a bit of health anxiety which flares up a little when my doc mentions stuff like that.

Thanks again for all the responses!