"tripple positive"

I am tripple positive for APS. I have been that since my diagnose in 2002. I have also all that time had very high titres of antibodies

Latest bloodtest this week:

S- Kardiolipin IgG multiplex : > 160 E/ml Ref. < 20

S-Beta2GPI IgG Multiplex: > 160 E/ml Ref. < 20

Also positive for Lupus Anticoagulant but because I take Warfarin they do not take that anymore. Latest in 2011 positive. Also been positive all the time since 2002.

Someone else like me?

Kerstin in Stockholm

49 Replies

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  • Hi Kerstin --You know I am your Buddy with the triple status.

    I had a gal ask about what it was just a few days ago.

    I am losing my PCP and he asked me somethings .. I will E mail them to you !!

  • Hi Jim,

    Thanks I know you are. I wonder if there is anyone else out there.

    Kerstin

  • I bet doctors love looking at your results!!! MaryF

  • Hi Mary,

    Do you think so. They never mention it. The first Neurologist in 2002 said it was very unusual. I did not like that.

    Kerstin

  • I am triple positive too. I'm part of the triple club. My titres are high too.

  • Hi, Welcome to the "triple club"!

    Thanks for answering.

    Kerstin

  • I'm positive for 2 of the tests but not LA.

    My levels have been extremely high every time I've been tested, which is every 3 months for the last 2.5 years

    My cardiolipin igg at its highest was 630 and beta2 very similar.

    My antibodies have never been under 300.

    I'm Interested to see whether they will come down after I've been taking hydroxychloroquine. I've often wondered if the high levels are significant.

  • Hi Tinythepanda,

    I guess my antibodies can be higher but they do not show up. Always that number when they are very high. I remember I had lower antibodies around the time when I started warfarin (as low as 56) and was not at all feeling good so I wonder also if they are significant.

    They cheques the antibodies every year most of the time.

    Thank you for your answer!

    Kerstin

  • I'm glad you are getting good care.

    Now I see why I'm seronegative.

  • Hi and thanks for answering!

    I do not understand what you mean. Could you explain please!

    Kerstin

  • Hi Kerstin--

    I have titers of all the antibodies, but some seem so close to being in the positive range that it has seemed arbitrary to say I'm negative. I've had a hard time understanding why doctors just pick a number and if you meet the number, you are positive, but if you are a number below, you are negative.

    But when I see numbers like yours it makes more sense to me. By sharing your numbers, I get a chance to see it more from a "Dr's" perspective. So thanks for sharing.

    I hope that makes sense.

    Like I said, I'm glad you having been getting good care, so you can live a more healthy life.

  • Hi Ann,

    I hope you also will get good care. Thank you for sharing.

    Kerstin

  • Well Kerstin our Triple positive club numbers and members are growing Ha HA

    I sent you my thoughts and #'s to your E mail.

    What is going on with my PCP and future of my care there is at a cross road .

  • They draw 29 vials of blood when they check my full range of my APS

    they have only done this 3 times in 6 years

    They will cut this down dramatically now when they are looking at just certain things as some things just won't cahange.

  • Hi Jim,

    Hope you get an Expert this time!!!! E-mail me and let me know how it goes.

    Hugs from Kerstin

  • I'm positive on all three tests, although I didn't realise this was of any significance?

    I'll need to double check the numbers but I know they are high and the four repeats of the tests I've had so far this year indicate they are climbing higher for the antibodies.

    I've got my appointment in Manchester with an APS specialist in November which I'm hoping will be good, as the haemetology department at my more local hospital don't have anyone who specialises in it!

  • Hi and welcome to the "triple club"!

    I know you have only had APS for a shorter time. I wish you Good Luck with that Specialsit in Novmeber. Stay on here and let us hear how it goes!

    Kerstin Thanks for answering.

  • Hi Sheride, my experience about triple positive in the younger days was 5 miscarriages. Now in my 48 years i have daily headaches and always tired . i am waiting for the surgery soon to tried improve the daily life.

    I have read that they want to treat pregnant women on the first trimester to help reduce chances of miscarriage.

  • I am also triple positive with numbers off the scale. I am now under B Hunt and they asked if they could take some blood for research purposes.

  • Usually I am give they blood for research purposes ,I hope that one day they will find the cure :)

  • These were my June results

    Since gone higher abdtestedc*ve for LA

    Tests- IgG cardiolipin antibodies of 258 U/ml, IgM cardiolipin antibodies of 42 U/ml and β2GG in excess of 532 U/ml, with β2GM 18 U/ml.

  • Hi Fusch,

    As we live in separate countries the results differ. We can see however if we have high or medium high or low results. At least i can.

    Yes, before I started Warfarin my APS-Specialist asked me if they could use my bloodtests for research purpose.

    I am eager to give any info about this curious, rare, under-diagnosed illness ito help others to live a good Life.

    Good luck with your operation. Now you have prof Hunt which must be good.

    Tanks for your answer /Kerstin

  • The doctor said there is no correlation between level of antibodies and actual symptoms, but I am not so sure. When my inr drops below 3 I feel as if I am having a stroke

  • I have not found that either. Perhaps we can ignore the high antibodies. As I said when I was feeling very bad, just before I started Warfarin, I had low antibodies but when I had my TIA/stroke in 2002 I had high antibodies.

    INR has nothing to do with antibodies. That is when we have too thick blood we feel bad. That is important to keep them within range.

    Kerstin

  • Triple positive with high titers here too

  • Hi and also welcome to the "triple club"!

    Hope you are feeling ok. Please stay with us!

    Kerstin

  • Hi Kerstin, I'm also triple positive and I'm glad to have learned about this club and to join it...

  • Hi danapu,

    Yes, this site is fantastic. This "triple club" started this morning and I thought that I was very unusual with three different sorts of antibodies but now I am not feeling so lonely. Thank you for your answer and take care!

    Kerstin

  • Hi kerstin , i feel a bit silly really,i don't know exactly what my titres are,ecxept that they are very high.i never thought of asking .i think i will ask the prof. next visit. Keep well . Elfie

  • Hi Elfie,

    I am almost sure I answered you yesterday ..........! Where did it go?

    I always ask to have copies of everything.

    In the 80th when my girls were small and my husband was at home, I worked some evenings at the Acute-Surgery Clinic for childen at Karolinska in Stockholm and wrote journals for the Doctors and talked to the parents when they came in with their children. I then learned how important it is to have everything written down.

    Kerstin

  • I tested positive in February after a late term pregnancy loss and had a stroke in June. I hope to get my levels tested again at the hemo on Monday. Praying they went down. Thanks for the welcome. I thought I was unusual too.

  • Was I have mentioned before, I may have once been a member, but . . .

    Back in the day when I was doing nosed the beata2 was not run, but I was strongly positive on the cardiolipin and moderately positive on the ANA. But that blood work was lost.

    All my bloods became " boring" after I went gluten free in 2004. Subsequent Beata2s have also been boringly negative. My energy levels soared on the gluten free diet and now, the local and the Duke hematologist - who both claim to have never seen the positive blood work( even though I handed over all my copies to the local hematologist) insist I should come off warfarin.

    I do not share their beliefs. For the time being, I'm staying on warfarin as well as that gluten free diet.

    So . . . I guess I'm ( maybe.) a retired member? 😳😀though again, I never had the Beata2when my blood was still " interesting."

  • Hi Gina,

    Perhaps this was a very stupid question from me. I know how much all here a struggling to have a diagnose and positive antibodies. I understand it so well and feel for you. I know how difficult it is to get a diagnose as I have been on this site for several years.

    Perhaps I should feel joy to have all three; Kardiolipin, Beeta2Glycoprotein1 and Lupus Anticoagulant, but I only feel very unusual and have heard negative aspects of having high levels. I was curious to know if there were any more with all three.

    I can not understand how he can be thinking of taking your Warfarin away as you fell good now!

    What are you going to do?

    Kerstin

  • No, i do not think yours was an inappropriate question. Quite the opposite.

    And i do agree with the Duke heme that given confusion regarding the rapidity of my bloodwork becoming " boringly normal" that perhaps i really could and should go off warfarin. he did not directly answer my ? as to whether had he would seen the pre 2004 positive blood work would he make the same recomendation of stopping warfarin. He did not answer my ? Which makes me wonder if he thinks i made up the whole story. Which is why i travelled to Lentucky to consult with the heme who diagnosed me in 2001. He wants me to stay on warfarin.

    The antibody levels do fluctuate. A lot. Do these varying levels have any signifigance? Your original question addressed this question. And that is important!

  • I have seen many posts about gluten free almost reversing autoimmunity. Any resources on how to begin would be appreciated!

  • I have had some trouble with my stomach lately and I have just asked my Rheumatologist and she will take some bloodsamples. She knows what bloodsamples to take.

    It is important you take the bloodsamples before you start to avoid special food etc.

    Kerstin

  • Well.

    Furst, if you go gluten free any disgnostic blood work, which is the gluten transglutinase test (GTT) may show a false ngative. So if you want official medical recognition of a possible gluten sensitivity, talk to your doctor first.

    Second: all you need to know about following a gluten free diet can be found at celiac.org or celiac.com.

    Third: you must be diligent about scrutinizing food. But you will get the hang of it within a few months.

    Whether you devide yo give the diet a whirl or not --good luck!

  • Hi everybody

    I am triple positive too, have been since diagnosed in 2011 every time I am tested. I have been told that there is no correlation between level of antibodies and risk of thrombosis, but being triple positive in itself might increase the risk of having more incidences. I have had one PE and numerous DVTs, both on Warfarin within target and whilst on Fragmin. I am now on lifelong Fragmin as I could never get a stable INR and I do better with my other symptoms on Fragmin. I have also tried Rivaroxaban but after 21 days of migraine I gave up – not for me! Until something better is on the market, Fragmin seems to be my best option although not perfect.

    Take care,

    Helene

  • Hi Helene,

    I know you selftested and was pleased with that. I selftest every second day since 2012 and I have had no miniclots or microembolies what I know of, and stay in range which I think is important. You are on Fragmin now.

    Welcome to the "tripleclub" which is not too unusual and thank you for answering my question! Stay well!

    Kerstin

  • Since some of your antibodies have gone up, and it has been a year since I have been tested, maybe I should ask to be tested again.

    I had to beg for them just to take my ANA again. Since I'm on Medicaid (poor peoples health care, but not bad in NY) they are a bit stingy with their blood tests. I'd like them to test me for everything to find out what is going on!

  • They do say, it's important to get tested regularly. But there are people who would not make so much antibodies and have v bad symptoms. I also hear about some healthy people have high antibodies (read somewhere) so not sure what these actually mean. I don't know enough what these antibodies are made against. I know what these antibodies are called but why some people's immune system make these particular antibodies - not sure - Drs ought to run more research.. it's interesting to read some blood samples are taken by dr for "research purpose", next time it might be worth asking what you would be checking for.

  • I got all my blood text back but do not understand them say high antibody but don't understand rest of them x

  • Hi Lesley, You must ask your doctor to have an explanation and a copy of the bloodtests done.

    Also you can learn a lot on this website

    hughes-syndrome.org/abo

    Thank you for your answer!

    Kerstin

  • I told him they did not make any sense to me the page you put up goes to a blank page but thanks for your help kerstin x

  • Hi Kerstin and everyone,

    I am also triple positive-nice to know that I am not alone and also part of the club! I have learnt so much since discovering this site late last year-wish I had found it sooner.

    I have tested positive to all 3 since 2008 when I was diagnosed (at 10 weeks 1st pregnancy). I don't have my blood result numbers from back then but the ones from last 5 years are not huge (around 40 for Beta 2, 54 for cardiolipin IgG and 32 for cardiolipin IgM). They have been enough to affect both my pregnancies (even with Clexane and Aspirin I only made it to 27wks and 33 weeks). My specialist checks all levels etc every 6 months. Results do seem to be getting better over time (ie., the longer I am not pregnant levels are dropping if that makes sense).

  • I am double positive. I have Lupus Anticoagulant and 98 positive for Anti-Beta 2 Glycoprotein. I think that being double and triple positive increases your risk for clotting events. I don't have nearly as high of antibody levels as most of you guys but I have had large saddle PE's. Some healthy people do have the antibodies from what I've read, but usually they are only weak positives. Ann, they get the normal cutoff antibody levels from sampling hundreds of healthy people. In most healthy people under 15-20 positive or under is probably found in many healthy individuals. Also, some healthy individuals can have transiently elevated antibodies due to an acute infection. Older age also causes antibody levels to become higher. That is why only moderate to high level positives are considered clinically significant.

  • Hi ema 35,

    Thanks for your answer and welcome to the"triple club"!

    Very nice picture you have of your Children (I guess it is) -. They look a bit like my grandchildren a couple of years ago.

    I do not think the numbers of the antibodies and the symptoms have any connection what so ever. If it is more likely to get tromboses with high antibodies I am not sure but could be.

    Kerstin

  • Hi Sirclotsalot,

    Where did you find this info? Please tell us!

    Kerstin

  • Hi Lesley,

    It says: the link in broken (in Swedish)

    If i click on huges-syndrome.org again I can see the page. Try you also. Hope you can see it.

    Kerstin

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