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Discussion Starter · #1 ·
I am a healthy 28 year old female who recently had a pulmonary embolism. My blood tested positive for Lupus Anticoagulant. I am told this does not necessarily mean I have Lupus. I googled that online and it said something about HIV patients often having lupus antibodies! I know I don't have HIV but it still freaked me out! I have Hashimoto's Disease (hypothyroid) and have had that since age 13. My mother had Toxemia while pregnant and apparently that is linked to Lupus and Lupus antibodies have a genetic component. Also, I was recently put on high blood pressure meds (despite being a size 8 and excercising and eating right, my blood pressure is high) and right after I started taking the blood pressure meds I had the Pulmonary Embolism. I read that the BP meds they put me on can often cause Lupis Antibodies to "act up" if they are already there and dormant. Needless to say I am scared out of my mind. I see a hematologist on Monday but I am really, really worried :(
 

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Even if you don't have lupus, it looks like you need to be treated with meds for the coagulation issue you have. A pulmonary embolism is definitely worrying, but there is an excellent chance that with treatment you won't have another serious clotting issue again.

Do you have any other symptoms of lupus such as arthritis/joint pain, fatigue, rashes? If you don't then there's probably not too much to worry about. However, you mention that you have high blood pressure at such a young age - I would ask the doctor on Monday to order a urinalysis to check for possible protein in your urine. If you have protein in your urine then you will really need to be seen by a rheumatologist and/or nephrologist. If you have any of the other symptoms of lupus then I'd ask for a referral to the rheumatologist too.

Good luck with everything on Monday!
 

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Discussion Starter · #3 ·
Hi Maia. No , I have no symptoms of Lupus. No swelling, rashes, swollen glands, joint pain, fatigue or anything! I know my mother had protein in her urine while pregnant...but I just had a urine test a week ago and it was normal..not sure if they tested for protein though. Anyway, thanks for the advice!
 

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HI there,

The lupus anticoagulant test is one of the tests performed to check for APS or Hughe's syndrome which is a clotting disorder.
As Maia said with relatively simple treatment you may never have another incident.
It can exist alongside lupus but also without, so is rather confusingly named.

As Hashimotos is also auto-immune your docs should be extra careful and check any auto-immune disorders as having one increases your likliehood of having another.

I have lupus, APS and hashimotos, so you're not alone.
Do be careful when googling, you can give yourself an awful fright :lol: it's amazing the weird and wonderful things you "might have" if you type certain things in!!

bye for now,
Katharine
 

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Hi there, I think, from what you posted, that you will get a lot of answers from a hematologist. I have one that I see regularly, and he is a genius with blood. Let us know how you do. I wish you the best, and I know you will do fine.
 

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Hi,

From what you write it does sound a lot like you may well have APS (hughes syndrome or sticky blood).

Read up a bit about it before your haematologist appointment.

The majority of people with APS have it as a primary disease - ie just APS. It is possible to have it as a secondary disease to another autoimmune problem. About 1/3 or people with lupus also have APS (hence that confusing name lupus anticoagulant).
If you are concerned that there is more going on than just APS, ask for a referal to a rheumatologist.

Let us know how you are getting on,

X C X
 

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I'll tell ya my story, but don't panic and read too much into it. I've had Phlebitis, DVT, and Pulmonary Emboli. This was all about 2-3 years before I started having MANY other troubles that my Doc. chalked up to a "bad phase" I was going through (all in my late 20s-early 30s). Well eventually my Kidneys started putting out blood and protien which finally resulted in my diagnosis of Lupus (and a year and a half of chemo to get it under controll). I've been on blood "thinners" ever since the clots (Warfarin) and have never had any other troubles with clots. On thinners you do have to get regular blood tests (I go monthly) and occasionally the dose needs to be adjusted, but for the most part they are not all that hard to be on. I'm guessing that you'll probably end up on thinners if the hemotologist confirms you have a tendancy to clot. As for Lupus, I'd read up on it, know the symptoms, and if you ever start showing any of them let your Doc. know. It's a difficult disease to diagnose (there is no simple test,as with HIV), it took MANY years of suffering before I was diagnosed. I spent my Teens and most of my 20's the picture of health, probably didn't see a Doc. in 20 years, then things really hit the fan. You at least know more than I did, when my doc. finally agreed I had a problem and told me I had Lupus I'd never heard of the disease. At least if you show any other symptoms in the future you'll have an idea of what could be causing your troubles. As I said, don't panic, just be aware.

Best Wishes,
Eric
 
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