Monitoring

[ehc918]

Hi it's me again, Elke from Southern California.

Are there ways to monitor the "stickiness " of blood? If I'm correct APS affects the fibrin in our blood which makes it sticky. I know there are other clotting factors besides fibrin, and since I do NOT take Coumadin, I wonder if there are ways I can monitor symptoms and compare it to lab work. I don't want to increase my current blood thinners unless necessary...

Thanks for all of your insight and info...

E

[Tranquility1]

Yes, the blood test Prothrombin Fragment 1+2 (also written Prothrombin Fragment 1.2). I don't know why so many doctors do not know about this test. If you put the below studies in front of your doctor, it's highly likely that she will authorize this blood test.

For example, in this study the researchers found that: "Prothrombin fragment 1 + 2 measures treatment effect in patients with antiphospholipid syndrome." "These results suggest patients with APS are in a hypercoagulable state. Plasma levels of F1 + 2 significantly decreased following treatment with either aspirin, or aspirin plus warfarin." ncbi.nlm.nih.gov/pubmed/973...

My prothrombin fragment 1+2 blood has always tested high (has been flagged on blood tests) performed at Labcorp and three hospitals. It's always around 330 - 390 pmol/l. When my hematologist added a second baby aspirin a day, that was the first time it dropped below 300. Hooray!

Having a high Prothrombin Fragment 1+2 is a clear indicator of being in a hypercoaguable state. Here are some other related studies on Prothrombin Fragment 1+2 and how they are being used to assess hypercoaguable patients.

Study: “Elevated levels of prothrombin fragment 1 + 2 indicate high risk of thrombosis.”

Clin Appl Thromb Hemost. 2008 Jul;14(3):279-85. Epub 2007 Dec 26.

Link: ncbi.nlm.nih.gov/pubmed/181...

“When cutoff values of more than 300 pmol/L for F1 + 2 were used for the diagnosis, more than 50% of the patients were thus found to have thrombosis. The findings showed that F1 + 2, soluble fibrin, D-dimer, and thrombin-antithrombin complex have similar diagnostic ability. The plasma concentration of F1 + 2 closely was well correlated with thrombin-antithrombin complex, soluble fibrin, and D-dimer. Finally, F1 + 2 is one of the most useful parameters for the diagnosis of thrombosis.”

Study: “Prothrombin fragment 1+2 is a risk factor for myocardial infarction in treated hypertensive men.”

J Hypertens. 1998 Apr;16(4):537-41. (Women were not assessed in this study.) “levels of prothrombin fragment 1+2 and C-reactive protein were independent predictors of major coronary events. The other measured haemostatic variables were not significantly associated with major coronary events during follow-up. Fibrinogen and prothrombin fragment 1+2 levels were independent predictors for mortality. CONCLUSIONS: Among treated hypertensive men, levels of prothrombin fragment 1+2 and C-reactive protein were independent predictors of major coronary events.”

Link: ncbi.nlm.nih.gov/pubmed/979...

Study: “Preoperative plasma levels of prothrombin fragment 1 + 2 correlate with the risk of venous thrombosis after elective hip replacement.”

Acta Orthop Belg. 1999 Mar;65(1):39-43.

ncbi.nlm.nih.gov/pubmed/102...

“Better preoperative identification of those patients at high risk of developing a deep vein thrombosis (DVT) after hip surgery could reduce the incidence of this postoperative complication, which still occurs despite prophylaxis. …….. A high correlation (p < 0.001) between the preoperative plasma levels of F1 + 2 and the risk of postoperative venous thromboembolism was detected. The performance of TAT and D-dimer levels in predicting DVT was lower. These findings support the hypothesis that preoperative measurement of coagulation activation markers might be useful in predicting DVT following a total hip replacement.”

Study: “Elevated levels of D-dimer and fragment 1+2 upon central venous catheter insertion and factor V Leiden predict subclavian vein thrombosis.”

Haematologica. 2005 Apr;90(4):499-504.

ncbi.nlm.nih.gov/pubmed/158...

“Subclavian vein thrombosis is a well-recognized complication following central venous catheter insertion. We studied whether the determination of D-dimer levels, fragment 1+2 levels and factor V Leiden can identify patients at high risk of developing subclavian vein thrombosis. ….. The levels of D-dimer and fragment 1+2 were significantly elevated in the patients who developed thrombosis. Five patients tested positive for factor V Leiden and all 5 developed subclavian vein thrombosis. Patients with high D-dimer levels (> 1300 microg/L measured by latex agglutination and >350 microg/L measured by ELISA) had a 7.0 and 6.0 times higher risk of developing subclavian vein thrombosis, respectively. A 5.5-fold increased risk of thrombosis was observed in patients with a fragment 1+2 level higher than 1.300 nmol/L. This resulted in positive predictive values of 0.78, 0.80 and 0.83 for the fragment 1+2, D-dimer and D-dimer latex agglutination assays, respectively. ….. We conclude that the measurement of D-dimer and fragment 1+2 levels after central venous catheter insertion, as well as factor V Leiden determination, can be used to identify patients at high risk of developing symptomatic subclavian vein thrombosis.

Study: “D-dimer and prothrombin fragment 1 + 2 predict venous thromboembolism in patients with cancer: results from the Vienna Cancer and Thrombosis Study.”

J Clin Oncol. 2009 Sep 1;27(25):4124-9. doi: 10.1200/JCO.2008.21.7752. Epub 2009 Jul 27.

Link: jco.ascopubs.org/content/27...

“High D-dimer and F 1+ 2 levels independently predict occurrence of VTE in patients with cancer.”

Study: “ACQUIRED CANCER-RELATED THROMBOPHILIA TESTIFIED BY INCREASED LEVELS OF PROTHROMBIN FRAGMENT 1 + 2 AND D-DIMER IN PATIENTS AFFECTED BY SOLID TUMORS

Experimental Oncology Vol. 24, No. 2: 108-111

Link: exp-oncology.com.ua/article...

“Alteration of haemostasis are common during oncological disease and thromboembolic complications have been recognized as one of the most common cause of morbidity and mortality of these patients. This study was designed to identify thrombophilic markers in cancer patients affected by solid tumors, in order to prevent thrombotic events….. We found a significant increase in plasma levels of prothrombin 1 + 2 fragment of cancer patients compared with control subjects and d-dimer plasma levels were increased in 89% of cancer patients compared with control subjects. In conclusion we can assert that cancer patients with solid tumors are at risk for thrombotic event as demonstrated by increased concentrations of prothrombin 1 + 2 fragment and d-dimer. In particular, prothrombin 1 + 2 fragment showed a sensibility better than d-dimer in the identification of cancer-related thrombophilia. However, a screening of these markers of hypercoagulable state could help to prevent a thrombotic event in cancer patients if just interpreted.

Thought: In this last study, high Prothrombin Fragment 1+2 was again found to be even more predictive of identifiying thrombophilia and hypercoaguable state than d-dimer. While only one of these studies had to do with antiphospholipid syndrome, all of these studies found that a high prothrombin fragment 1+2 means hypercoagulable.

I hope this helps!

[Offcut]

There is a self test unit called coagucheck used by those on Warfarin etc. not sure if it tells you if it is thicker though?

[Tranquility1]

Coagucheck is a home self-use INR test for people on Warfarin (Coumadin). I understand it gets good reviews from many people taking Warfarin (Coumadin). However, it doesn't help those of use who do not take Warfarin (Coumadin).

For people who are on Warfarin (Coumadin), you may also want to occasionally get a Prothrombin Fragment 1+2 blood test. Studies show that when we age, this test might be able to provide "information regarding anticoagulation intensity in addition to that reflected by the INR." ncbi.nlm.nih.gov/pubmed/918...

For example, a prothrombin fragment 1+2 blood test result that goes higher over time will be a good indication of hypercoagulability going up. Unlike the INR, it doesn't jump around as much.

I find when my prothrombin fragment 1+2 is over 300, I am tired all the time and I feel like I have sludge blood. I can't get anything accomplished during those times and my migraines are worse, my raynaud's acts up, brain fog is brutal, and I can't get rid of the pins and needles in my feet and hands. During those days, I also get the odd symptoms that come with micro-clots (from vision issues to neurologic troubles).

When I can keep my Vitamin D high, and my prothrombin fragment 1+2 lower (around 250 through two baby aspirin a day), and my cholesterol level lower, and I get in my 3 mile walk, that's when I seem to do much better.

[ehc918 in reply to Tranquility1]

Oh Wow!!!! THANK YOU SO MUCH for your reply!!! I have never had any coag tests other than my CBC which has a platelet ct. I have worked in the medical field for a long time and it has primarily been through my own research and investigation and faith in myself that I even have this diagnosis.

I have never had a clot that I know of, but get painful, super bad brain fog, fatigue, bad headaches, dizzy, light headed, etc mostly neuro and cognitive stuff. This went on for years, progressing in intensity until I had a second positive ANA and APS popped up on a rheumy panel.

Tranquility have you had events or are you a "milder" form like me.

Thanks again for the info...

[Tranquility1]

Like you, I had to put it together myself through my own research and investigation. Dozens of trips to the hospital over the decades and unusual symptoms which could never be pinned down to a cause.

For example, a few years ago for a week I had a growing pain at the bottom of my left lung. Every breath I took caused more and more pain. By the end of the week, I couldn't get out of bed (it hurt my lung to just stand) and I was taking very shallow breaths in order not to exasperate the pain. Then late at night I took a breath, it hurt terribly, and I coughed up bright red blood (really bright red blood) from deep in my lung and the pain went away. I now have scar tissue on my lung in x-rays at the location of that pain. The doctors believe it could have been a pulmonary embolism. However, unless they see it at the time, then they won't stand by it. I didn't even know what a pulmonary embolism was at the time (or for years). I didn't know about my clotting disorder at the time and I was so tired of going to doctors for the weird symptoms that would come up such as: slurring my words, or my leg going out while walking, or my face drooping on one side, or leg pain, or severe migraines. I would run through cycles where I would get so exhausted from the medical circus and the odd symptoms that would appear out of nowhere. The medical establishment made me feel like it was all in my head and therefore often I would just ignore the symptoms. I also have lesions in my brain that could be from TIA's, but again the doctors don't like to give labels.

Now my doctors take my clotting disorder more seriously. But for decades I wasn't taken seriously. I had to do the research and put it in front of them, then I had to push to run the tests, and even when I was proven right (only then) was there a beginning of being taken seriously. Nobody wants to have medical issues. But my health issues impact my ability to function. I had to become an advocate and learn to stand up for myself. Trying to find balance between tranquility (being content in any situation) and being an advocate for myself does challenge me.

Doctors now look for the major issues DVT, pulmonary embolism, and stroke. The problem is that micro-clots can be just as debilitating because they can end up affecting any organ or system. For example, micro-clots in eyes can cause eye pain and one's sight to go awry and then to clear up, micro-clots in hips can cause osteonecrosis, micro-clots in ears can cause tinnitus or hearing loss, micro-clots in brain can cause mini-strokes, ...

So while doctors are on the look out for the big issues, the micro-clots can do a ton of damage. For me I know I have to stay healthy, eat right and exercise. I'm afraid I've been bad in this department. I need to increase the priority of my exercise routine and eating right. How about you? What do you find keeps you healthy and feeling better?

[ehc918 in reply to Tranquility1]

Sorry for the delay.

Wow you sound just like me! It has been a full time job trying to figure out why I felt like crap for so long. With such vague symptoms it was hard to pin down. Plus I've moved out of state two different times in the past 5 years and have to restablish with each new doctor and work within the confines of each new insurance type.

Having to go outside western medicine and seek alternative treatment with acupuncture and chiropractic and supplements and diagnosis of anxiety and depression and allergies and possible seizures and gut issues and food intolerances and nutrient deficincies... I've had X-rays and multiple MRI's, a 5 day video EEG for seizures, a stress echocardiogram, and pretty much every poop and blood and saliva test known to man...

I had a positive ANA in 2009 but routine rheumatology tests (lupus, arthritis, sjogrens, etc) were normal. I have had a positive IgM/IgG to a virus called cytomegalovirus (CMV) for years. When you get a virus, the IgM is the acute antibody that elevates initially, but it's supposed to normalize. Mine never does. Not despite time or multiple rounds of prescription antivirals. CMV and Epstein Barr cause mono and some people get sick and some people don't, but both have been implicated in "chronic fatigue syndrome" . So for several months my dr thought this was my issue. But then another dr ran an ANA this past May, I got a bunch of rheumatoid tests which were normal, and then some more tests and the cardiolipin was elevated.

I found the Hughes Syndrome website and have basically, by a process of elimination, deduced that I must have the mild form of Hughes.

Never having a stroke or DVT or anything it's controversial whether or not I truly have Hughes, but it makes too much sense.

I still feel so alone and scared. I don't really have a knowledgable doctor on my side. Since starting blood thinners I have actually had major improvements in symptoms, but 2 weeks ago they came back and I just don't know what to make of it or what to do.

Sigh...I apologize for the rant.

Thank you again for the info re: the fragment 1.2 tests. I'll have to bring that to my primary.

And to answer your question, what makes me feel better is good sleep (which I never get), exercise, warmth (from exercise, shower, sauna), drinking lots of water.

I have been pretty healthy in terms of lifestyle for several years. I quit drinking and smoking 10 years ago. I eat very healthy, organic and cook from scratch as much as possible. Do gluten free and dairy light. No soda and keep sugar intake low. Follow a paleo-ish diet. I am naturally very slender and have never had kids so in that regard I'm in good shape...

I hope you have been doing well and thanks again!

Elke

[Lure2 in reply to Tranquility1]

Have you spoken with an APS-doctor? What has he said?

It is very interesting to read what you write.

Kerstin