Sticky Blood-Hughes Syndrome Support

Kate H @ St Thomas --

Kate is it common to have superficial or shallow vein clotting - when your anti-coagulation is supposedly good { as good as I get }} with my history.

Have you people experienced this with your patients ????

I know you can't diagnose ,just a question in general with all your experience.

Reply as soon as you can

Thanks Casey and jet

11 Replies

Hi Jet

Sorry but I haven't worked at St Thomas' for over three years now, so couldn't really comment on patients I've met recently.

It is possible for APS patients to have superficial clots if their INR isn't high enough. However it's important to keep your INR as low as you can without symptoms.

It sounds like you've had a clot? Hope you're ok and am sending you good vibes xx


Thank you Kate -0 I guess i am kinda out of the lop sort of speaking- hope you are happy with your new job .I have started the process to get my inr range higher, 2.5 to 3.5-- after my surgeries i was said to have had minimal bleeding and i asked the Dc about it - was his comments pertaining to a normal person ,not an APS patient ?? his reply was a normal one // so i am not a bleeder even now i have had some deep cuts and the bleeding was short and quick to heal so i think i could use the higher Inr range . But getting new PCP to raise it is going to take some work. if i am clotting at all. there is no doubt that i am clotting as the results from the ultra sound just done yesterday. this is the 2 nd time in less than a year.and my inr's have been higher than my high range now ?? -- Thank you for your time Kate and if you would like i can keep you informed as to just what is going on . the Dc;s here use me as a training person for the resident Dc's . and i always make myself available to them as it helps to spread the word of our plights . and the nurses and the young residents are the ones that show the most interest in our problems and i send them to the sites to learn even more - as far as i know now that Kristina ha moved away there is only one other APS patient at Concord hospital , according to the nurses. so this helps ..Thanks again Casey and I


No worries Jet - I am still the manager of the HSF, but am not based in a clinical setting anymore - the powers to be decided to move the charities out of the Lupus Unit at St Thomas' three years ago and we had no choice. Still on Guy's campus, but away from the patients. Yes, do keep me up to date with your progress, and I keep fighting your corner - raising awareness and educating your healthcare team is an uphill struggle but should be well worth it x


Hi Jet,

I know you have been on this site for several years and I have also read your inputs for several years. I guess you know everything about anticoagulation. I Think you said you were on love-nox (?) I that warfarin ? You said you took a double dose of warfarin a couple of days ago. Hope you take lab veintest often as "our" INR tend to go up and down (like mine). You said you had "trippel"-antibodies. Wright? Me too. Perhaps that is why it is so difficult to maintain a stable INR. I have bought a Coaguecheque machine. Make my life easier. I know you do not get it for free in England (sorry for that) but try to have lab veintests as often as you can.

I have Heard of people that have clotted even on correct anticoagulation. Or perhaps they did not take lab vein-tests as often as they should and were not aware of too low INR. We are all different and I am not working any more so I can easier control what i put in my mouth to get a constant intake of food.

Give Casey a little hugh from me and take real real good care Jet! Kerstin


hi Kerstin- I live in the U S A - New Hampshire to be more specific.

I was on enoxaparin as a bridging agent for my surgeries and on the first surgery for about 9 weeks to determine how bad my S & C proteins really were . as they were reading extremely high while on warfarin .

and I have it on hand if my INR's drop to low

I can't use the finger tests machines as they don't measure me correctly as I am L.A .positive

I am on Total disability- because of the many problems I have .as far as my diet when I go to the Dc's they ask {what can't you eat in your diet } my reply is { it's easier and shorter and quicker to just list what I can eat } !!!!!!

I have about 25 dia. health issues- it seems some times the list never ends HA

Now you are in SWEDEN??? I think you are the only other Triple that I can remember meeting . But that is putting a lot on my pea brain HA

what is the time difference between us ???

No I don't know everything BUT I have been threw a lot in my 5 years with this disorder.

I just did a test history for one of my Dc's and just in Lebanon alone one of the 4 hospitals I go to for treatment { the hospital where almost all my specialists are} since November 2 of 2011 I have had 110 tests-- in 89 appointments . so I have had the luck if you could call it luck to have had a Dc. that really was into eliminating any and all possible causes for my unusual problems with the APS and all the others.

I have had and still have most of the 27 Dc's that are or have been involved with my treatment's-- some I see as needed others every year - some every 2 weeks - so it can depend on 1 my condition 2 time lines 3 combination of all other Dc's --I have 5 I call my heavy hitters ----- Rheumy , pain care , eye Dc. ,PCP ,Nureo , and also my diabetes - dietician so they alone keep me busy :-) :-) :-0

Casy and ME


I myself am confused on this issue. The doc who diagnosed me in 2001, -- the out-of-WVa-doc my concerned high school friends set me up with -- says that most APS patients clot on either the veins or the arterioles, as the antibodies are targeting a component of platelets, or a capillary wall. Mine, he said at that time, are unusually talented and they have learned to recognize both as the "enemy which must be attacked."

He did not offer, at that time or in subsequent visits, a more scientific explanation then that.

Time passed, and having an out of state doctor try to manage my INR became more and more frustrating, so eventually, I was transferred to a local hematologist who has an A+++ rating among local docs.

And THEN last fall when I saw a hematologist at Duke as a condition of my getting my hip replacement there, that hematologist pointed to the sink in corner of the treatment room and said that my attributing DVTs and migraines/mini strokes/TIAs all to APLS made no sense; that it was like attributing a clog in a drain to the same mechanism which leads to a clog in the hot or cold water faucet.

I looked confused at this point, and asked for a more detailed explanation, but I did not get one.

Then, just yesterday, at a follow up with my local hematologist I described this sewer clog/hot water clog analogy to him and he responded with "Exactly! Exactly! That's why your symptoms don't make sense!"

Again, no follow up beyond that.

I did get one explanation from the local heme as to why my diagnosis with APLS has been called into question. Its not just that my current antibody numbers are "boringly normal." It also has to do with the 2 bone marrows I had in 1986 and 2001. Both showed that my then excessive platelet numbers were due to my profound anemia. Now I had been anemic since age 4 and to me, the breathlessness and low endurance levels were "normal," and I hiked, biked, swam and ran a lot, so I had learned to cope with the anemia.

But nobody ever told me that my anemia was causing the platelet problem! (And therefore, the DVTs I had in the 80s.) Nobody put me on iron pills, or suggested any absorption problems with my tummy.

Then I accidentally went gluten free. For the first time in my remembered life, as my gut healed and I once again absorbed the Fe and the larger B vitamins, I felt wonderful! Better then I had ever felt before! The platelet count returned to normal; all the antibodies returned to normal (cardiolipin IgG is currently borderline normal at 15,) and so the hematologists speculate that it was the anemia and the gluten sensitivity that was driving all this. And I should discontinue the warfarin.

But, since I have an a fib and mitral valve prolapse with moderate regurgitation I am on warfarin for life for those conditions, albeit at a lower INR. We decided to lower the INR a tad and see what happens.

Wish me luck.

But again, I still can not mentally reconcile what the first hematologist told me about APLS effecting arteries and veins with what the plumbing analogy used by subsequent hematologists to explain why this is impossible. -- much less what that first hematologist, neurologist, opthamologist and internist all told me; that with an autoimmune condition, once positive means always treated. (Today's doctors, without actually laying their eyes on that now discarded blood work, all say the opposite -- that now that the #s are fine, I"m well, can discontinue treatment and will remain well.)

And I wish you good. luck.

(Could the scientific thinking about APLS effecting platelets and/or capillary walls have changed since 2001?)


Your were positive once - have the other underlying problems-- Why would you be put at risk !!!


Hi Jet,

Stockholm - New York a difference with 6 hours.

I am also Lupus Anticoagulant and I use a Coagucheque-machine. There is a discrepance between the lab veintest and the machine but always about the same difference. My doctors know me and I can cheque every second day. If I have to-day 3.9 on the machine I know that I have 3.0 or 3.1 if I took a test at the lab in a vein.

If I have 5.0 one day I have perhaps 3.9 on a veintest. The higher reading the higher difference. Hope you follow me. I have to be careful but I have the same drugs almost every day (about 10 different each day).

So perhaps you could try a machine if the doctors let you do that. I am on 5 mg of warfarin each day.Some here on this site have tried Fragmin. Have you thought of asking the doctors to try that drug?.

I have Heard of one more trippel-positive. I am trippel-positive with high titres for 12 years now. I feel rather good.

My eldest daugher is type 1 diabetique.

A hug to you and to Casey from me, Kerstin




Hi Jet, What about Fragmin? No diet only weight (I have heard here). My Rheumatologist says I am a "special" APS case (obviosly because all my antibodies in high titres) and probably you are also a "special" APS case.

Take care anyway. A Little hugh to Casey. Kerstin


I am not a candidate for any of them even Enox on long term , we use it just for bridging and on occasions when i plummet. The warfain and the hydrox are my thinners-- and some home remedies that the Dc's don't like but it works :-) . my blood is so bad , and INR'S just crazy most times and the simple amount of all the meds i need for the other 25 problems ????????????


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