Some advice for a newbie please?

Hi,

I'm a noob and not very up to speed with Hughes so please bear with me!

I had a DVT in my right leg in 2004; this was put down to lots of long haul flights and I had a brief course of warfarin and was then taken off it.

I was on and off warfarin for a few years, I had several borderline, negative and 'definitely positive' lupus anticoagulant results but my specialist thought my very poorly thyroid was probably the reason behind my rather erratic test results.

After a few years I was tested again and after more rather confusing results I finally got diagnosed with Hughes and was put back onto warfarin. I was then taken off them by my new consultant as she also thought it could be my thyroid and not actually Hughes.

I recently had another positive test and now my consultant wants to start me back on anticoagulants next week. I've had a pain in my lower right leg for the last few days and although its nowhere near as painful as when I had my DVT it is enough to worry me. I had a blood test last week and the nurse couldn't get any blood out of me at all - she laughed and commented on how thick my blood must be. Eek! My period is also nearly 2 weeks late (which never happens) but I have had 2 negative pregnancy tests.

If I did have a clot would something show up in the lupus anticoagulant test? A d-dimer wasn't done although my consultant did request one. I'm sorry if that's a really dense question but I have a very foggy head and flu so I'm not really firing on all cylinders at the moment. I really do need to try and understand this condition and its very, very complicated tests!

Thankyou for reading my rather complicated post!

Mish

14 Replies

oldestnewest
  • Hi there and welcome, firstly, do please familiarize yourself with the charity website which contains lots of information about the disease in it's entirety. Also do please free to ask us all questions. Firstly if you have a pain in your leg, please deal with that fairly swiftly, and push them to get your anticoagulants prescribed and investigate your current soreness. Your history and path to diagnosis is not unusual, the trouble being that at times some medical staff only know half the story and do not understand all the manifestations of the disease or how to manage it. Our charity website contains a list of medical staff who understand the condition across the UK. If not in the UK we can at times help with other names and members can also suggest things. MaryF

  • Thankyou for your reply Mary, I'll go to my GP tomorrow :)

  • Hi Mish,

    I agree with what MaryF have suggested. No, a clot does not show up on the test for Lupus Anticoagulant. Good that you are going to see a Doctor with your leg tomorrow.

    Best wishes from Kerstin in Stockholm

  • Tack, Kerstin!

  • Hughes and APS often go hand in hand so its not unusual to have both. Please dont let your Consultants to make it an either or thing. Also antibodies come and go so if you have had positive tests plus a clot I would be looking to find an APS specialist, someone who really understands the condition rather than a Doctor who treats it amongst other conditions and dose not specialise in it.

    Once someone has had a clot with Hughes and be started on anticoagulants they normally stay on them for life.

    I hope you get things sorted out soon as you need to be protected if you do have APS.

  • I have understood that Hughes and APS the same thing?

  • Yes. Funny story: I was once on a trans Atlantic flight. I was late for my originally booked flight so I was assigned to another one, but my request for extra leg room seating ( I am 5'10") did not get relayed to this later flight. And I was seated In the middle of the middle row. The guy in front of me lowered his seat. . . And I knew I was going to have a clot before I got back to the States.

    So I tried to politely ask the stewardess for an alternative seat. She was most rude to me, ( it must have been a horrid day for her!) and she basically accused me of lieing to get a better seat. ". You're making this up. There is no such thing as " Hugh's Syndrome, or an "Amy's Syndrome," or a "Marks Syndrome."

    Here I interrupted her. "It actually has many names: Antiphospholipid Syndtome, APS, APLS, Hughes Syndrome, Sticky Blood Syndrome, and -my personal favorite, Sludge Blood."

    The stewardess was not convinced, replied something quasi-insulting and turned . . .

    As a woman from some rows behind me raised her hand, stood up, and identified herself as a co-worker of " Dr. Graham Hughes, who first described and so named, this real syndrome. and Miss? She wouldnt know all the names it goes by unless she actually had it. Her fears about a blood clot are real. She needs more leg room!"

    I thanked the woman who tried to intervene in my behalf, but the stewardess remained unconvinced. I spent most of those hours laying on the floor outside the bathroom with my feet propped up against the fuselage. I did not get a blood clot, thankfully, though a tiny part of me kinda hoped I would so I could have the pleasure of confronting the stewardess, "SEE! I told you!". Thankfully I never got that pleasure.

    And now I never travel without a signed, handwritten script from my hematologist detailing my need for leg room!

    ( and Dr. Hughes co-worker checked on me many times as I lay there on the floor, with those charming bathroom odors wafting by, and apologized frequently that I had ended up in this ( literal) position.)

    But it's a rite if passage --when you learn all the names that means you have become a Hughes Syndrome Insider.

  • Hi Gina, You write so extraordinary good and wellexpressed stories that I (Swedish is my language) almost think I am there. You do it with so much humour also. The co-worker of prof Hughes was a kind woman and probably told the Professor.

    Best wishes to you from Kerstin

  • Amazing story that there was this person who really knew this syndrome! I am glad that you got help in this difficult situation, like God sent! And now these stewardesses who also know when another person comes with this syndrome.

  • Yes it is. Sorry a typo meant to say Hughes and autoimmune thyroid often go hand in hand but antibodies come and go! Once you have had positive tests a dx should be forever you can't not have it just because a blood test comes back negative that just means inflammation levels are down.

  • Thanks for clearing!

  • I do agree to all that APsnotFab has said. Try to find an APS-doctor. So few doctors understand APS!

    Are you from Sweden by the way? "Tack" !

    Kerstin

  • Hello everyone, just a quick update - I'm definitely not pregnant! I had a d dimer this week but was told there was a huge backlog at the lab so the consultant didn't know when my result would be back. I've been put on Elequis and I'll see my specialist in 3 months. So really I'm none the wiser..

    Gina, that's quite a story! I got my first DVT after a flight to Denver - I wish that lady had been on my flight!

    Thanks again everyone, I'm off to have a good read of the site.

    Good health to you all :)

    Oh, and I'm not from Sweden, just a huge fan of Abba!

You may also like...