Never heard of this Hughes syndrome

[Dianecells]

I've got the blood disorders but never been told I was tested - and pretty sure not been tested fir this syndrome.

[Puska]

Just wondering what you mean by the blood disorders? DVT? PE?

[MaryF Administrator]

Hi, if you have been tested you can ask for the results, but your history of clots and or symptoms would be useful, and easy enough to do the tests again, how can we help? MaryF

[Lure2]

I hope you are treated from a very competent Doctor who also knows about APS.

Read about APS in "Sticky Blood Explained" by Kay Thackray. Many members have bought that book. She has APS herself and writes about all the different symptoms. It is a book to understand what it means to have this rare illness.

Very few doctors know about it. That is our big problem as the main cause is too thick blood that has to be thinned and treated with anticoagulantia of some sort. You also have Factor V Leiden etc. Stay with us here please!

Best wishes from Kerstin in Stockholm

[Lure2]

I think you should put a new question on here and tell a little more about yourself and who is treating you and your present and earlier symptoms and where you are situated.

As Mary says you can ask for the result. You talk about Lupus Anticoagulant. The antibodies can go up and down but still have the blood-disorder.

Kerstin

[Dianecells in reply to Lure2]

My cardiologist manages my PT/INR testing. My first occurrence of DVT & PE was in 2003. I was put on warfarin fir 6 months. At the end of that period I had my 2nd bout with both DVT & PE. I was sent to a hematologist who did many tests and told me about the factor V Leiden, lupus anticoagulant & protein C deficiency. At about this sane time I had fibroids and terrible periods so needed a hysterectomy. It was decided to give me a venacava filter before the hysterectomy. I've not had any issues with clots since 2003. I've not been tested again fir any of these deficiencies. I am having trouble with lymph nodes very swollen. Have had 2 biopsies and they are benign - but no answer fir why they are not working properly. But, my veins are just awful especially the left leg. So if your veins are not flowing correctly your lymph nodes won't either. I've had to do congestive wrapping on left leg twice this year to get fluid off the leg.

That's about the best I can do to describe my issues.

[Dianecells]

I don't know. I just cane across this site and I'm very interested in learning about this. No Dr has been able to explain or discover why I've had these things happen to me. So I'm always searching!

[Lure2]

I thought you said that you had Lupus Anticoagulant together with Factor V Leiden?

Kerstin

[Dianecells in reply to Lure2]

Yep that us what I was told. Was tested very long time ago.

[Lure2]

Try to talk to that Doctor who did the tests and/or ask for copies of the blooddraws.

As you probably know the antibodies (in your case Lupus Anticoagulant) can sometimes be negative but you could also be diagnosed by symptoms and a familyhistory of autoimmun illnesses and also if your symtoms reduce after anticoagulation.

Did you have DVTs and Pe when on Warfarin or was it after the period of 6 months?

Did you stop anticoagulation and now restarted again ? What is your therapeutic range of INR? You perhaps know that we feel best when the INR is over 3.5. I am primary APS and you have factor V Leiden etc so our symptoms may not at all be the same.

If Warfarin does not work you could perhaps ask your Cardiologist if you could try LMW Heaparin if it does not interfere with your other illnesses and drugs of course.

Hope you get good help from your Cardiologist who should know about APS if you have got that illness also. If it was me I would like to know if I have got APS or not before my operation or perhaps you have already done the Hysterectomy.

Kerstin