Is Hughes Syndrome the same as having positive lupus anticoagulants?

[nuddle]

hoping someone can shed some more light on this, my drs dont seem to know too much..

10 years ago, I had 4 miscarriages, and after some blood tests was told that I had tested positive for lupus anticoagulants. Its never really been explained as to what exactly it is, I saw a specialist, I think he was an immunologist, who told me to stay away from eostrogen based birth control, take aspirin during pregnancy, take aspirin before flying, and just stay away from anything that could increas my blood clotting risk.

recently my period has gone very bad, long lasting, extremely heavy, had to take medication to get it to stop, the latest the hospital gave me came with a big warning of blood clotting risk, so this brought up the discussion and its made me wonder if the LA is related to the bleeding? I also have an underactive thyroid, which is a recent thing, can that be connected to the LA??

Can the LA get worse as we get older?

And then I just came across Hughes syndrom, is that the same thing?

This is all confusing stuff, I always thought I didnt really have to worry about it, but it now seems that maybe I do?

[Salty]

There are 3 blood tests for Hughes syndrome, also called antiphospholipid syndrome (APS): the lupus anticoagulant=LA (the name is a misnomer as it is actually associated with an increased risk of clotting), anticardiolipin antibody (IgG and IgM) and beta 2 microglobulin (IgG and IgM). Usually APS is associated with an increased risk of clotting, but occasionally it can cause an increased risk of bleeding. APS is an autoimmune disease which can be associated with other autoimmune problems such as Hashimoto's thyroiditis which can cause an underactive thyroid. It is also associated with recurrent miscarriage in some women.

[MaryF Administrator]

Hi this often causes this sort of confusion, the name of the test. Where are you located as it would be best if you were referred to somebody who knows medically about APS, to be given the correct care and guidance. APS frequently also goes hand in hand with thyroid problems and Sjogrens Syndrome. Mary F x

[nuddle]

thanks Mary, I am in Australia, so is APS and lupus anticoagulant the same?

[MaryF Administrator]

Yes, and there are people who know, one such doctor is. Dr Godfrey, St Vincent's Hospital, Melbourne, I suggest you get in contact, as you will find his knowledge very useful, He used to work With Professor Hughes in England. Let us know how you get on. Mary F x

[nuddle]

thanks, I am in Brisbane, but I guess he may be able to recomend someone over here?

[marycath in reply to nuddle]

hi nuddle

I am in Mackay. After asking for such tests,I had positive tests in 2007 after lifelong severe life changing,threatening/cardiovascular problems. Dr Godfrey in Melbourne in 2008 nor rheumatologists in Qld did not help in any way, except for Plaquenil. Luckily I am a researcher, have bought all Prof Hughes books, am in the Hughes Foundation, and all lupus books,and in 2010 here I asked a new Dutch eye specialist if he knew about APS, and he had d/x and studied retinal and catastrophic Aps, so mid 2010, he gave me the referral to see Prof Hughes at London Bridge Hospital, was d/x positive, and a Sydney rheumatologist was suggested. I have flown down several times to see her.

[nuddle]

do you know if symptoms can get worse as you get older? Can this condition get worse?

[MaryF Administrator in reply to nuddle]

The condition being an autoimmune one, can change over time, and it is different with each person, you definitely need to be assessed so that the correct advice can be given, Dr Tim Godfrey is the right person to help you with these issues. Kind Regards. Mary F

[nuddle]

thank you Mary

[jessielou]

Hi hon

I have lupus anticoagulant positive Hughes syndrome. The names are so confusing, their are many. Being autoimmune means the condition does tend to vary person to person and over time.

I avoid hormone meds of any sort because of clotting risk, had a dvt and PE after hormone treatment for prolonged, heavy periods.

We do have a few members in Australia, who will hopefully be along with other docs. Dr Godfrey is a name we hear a lot of good things about.

I agree with Mary, you definitely need to be assessed and have correct care,advice and treatment. Aspirin on the right track though.

Hope you get sorted hon.

Take care gentle hugs love Sheena xxxxxx

[nuddle]

thank you Sheena, I am not on the aspirin at all at the moment, when I was told thats what I have 10 years ago, it was mild enough that I was told not to worry about it much.

Feeling very odd today, really light headed, sore sensitive skin all over my body, and just foggy in my head, been getting lots of dizzyness for the past year and a bit, the drs put it down to the thyroid issue, but thats under control with meds, so is not causing it.

Anyway, yes Melbourne is too far away for me, would be good to find a dr in Brisbane

[Mommaleda]

Nuddle,

I strongly suggest you go get treatment. I was dx in 2002 with Hughes. Docs put me on an aspirin. Dizziness and feeling weird brought me back this year and I am now on Coumadin. My inr was extremely low and they are still having trouble getting above 2.0. So now, I'm looking at traveling as far as 2000 miles away to find a doctor that understands APS/LA& possibly Lupus.

All the best xx

[nuddle]

I year on, googling and found this thread, have since found out I do have hashimotos, and thyroid meds are not working, not being absorbed the way they should. I am on a T3 only meds, also trying low dose naltrexone to try and help with the immune attack.

Was reminded of this LA last night and am once again wondering if this is the issue.

I also have very low iron that I am unable to raise much with tablets and when I do manage to raise it, it just drops again.

I have been referred to a heamtologist in June, are they the right people to discuss this lupus anticoagulant with?