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  1. Earlier
  2. I had a very inconclusive meeting with a hematologist to discuss my blood results and recommended action. This followed a stroke 4 months ago. In the most recent test my total protein s results were over 120 but free protein s were 55 (highlighted reference range 74-146). The hematologist seemed unclear whether this was just a low reading or an actual deficiency. I don't believe it is an inherrited thing as there is no real history of clots in my immediate family. The hematologist was also unclear whether I should stick with Clopidogrel or switch onto anticoagulants. I am reluctant to change medication unless there is a clear risk with the free protein s at this level. We reached a compromise to test again in 2 months but assuming the levels remain the same am I exposing myself to unnecessary risk by just remaining on anti-platelets which I tolerate well? Any advice gratefully received and should I request a second opinion? Thanks Dan
  3. Fasting (water only)

    Warfarin can be taken with or without food. Fasting is known to increase the INR of patients taking warfarin. However warfarin dosage can be adjusted to take this into account, so the key point is whether the INR is stable. This varies from patient to patient anyway, however fasting adds a new element into the equation. If this became a problem one option to explore would be having a Vitamin K supplement to help stabilise the INR.
  4. Does anyone have any experience with water only fasting? Currently I'm on Xarelto and that has to be taken with food. I was thinking about having my doctor switch me back to Warfarin to try fasting. Just curious if anyone has tried fasting while on Warfarin and how that effected your INR.
  5. Stroke

    Thanks James. The lab where I was tested showed that my total protein s level was 72 (highlighted range was 75-140) and free antigen level was 55 (highlighted range was 74-146). I am waiting for follow up tests as the consultant suggested repeating before diagnosing anything. I am also wanting to find out whether there is a link between low protein s levels and my stroke - the consultants have been quite vague on this. Thanks. D
  6. I have seen forum posts where it was mentioned as a contraindication on the bottle. After searching I found these... https://www.tabletwise.com/medicine/nattokinase/contraindications http://nattokinasehearthealth.com/26/side-effects-and-dangers/
  7. Yes, I think this is an important topic for people to know about! I've been using the nattokinase as a "fibrin buster" to help address the problems associated with my venous return insufficiency (PTS). There are differing opinions about the use of nattokinase with warfarin. From what I understand, the two work on different parts of the clotting cascade. The nattokinase does not affect my INR, which seems to be my doctor's main concern. Can you point me to the literature that says they shouldn't be taken together?
  8. Does your doctor know that you take nattokinase... I know there are some people who say it works and some who say it doesn’t (I prefer to keep an open mind) however I have read that warfarin and nattokinase shouldn’t be mixed. Maybe it is worth starting a new topic just about nattokinase, your experience with it, and gathering up some of the medical literature?
  9. Thanks James; I appreciate the response! I'm now on Warfarin for life (per doctor's request), so I'm living with the realization that my blood issue isn't something that can be managed with only dietary/lifestyle changes. I am, however, taking nattokinase regularly to help with reducing existing fibrin matter in my circulatory system (leg veins in particular) and preventing further fibrin buildup.
  10. Just to update with couple of comments, even though this topic is from a year or two ago: 1/ If you have hereditary Protein S Deficiency you do not need to be concerned about Vitamin K unless you are taking anticoagulants such as warfarin (brand name, Coumadin). If you are taking warfarin you will be encouraged to manage your natural Vitamin K dietary intake because it interacts with the drug and affects dosage requirements. In some cases, to help smooth out dosage requirements you may be asked to take a Vitamin K supplement but you should only do this if directed. 2/ If you have acquired Protein S Deficiency this may be caused by pregnancy and other health conditions. For example celiac disease, cystic fibrosis, and digestive issues can lead to a deficiency of Vitamin K, which in turn can reduce production of Protein S. Most of our Vitamin K comes from our diet and digestion so it is unusual for the average adult to have a Vitamin K deficiency. A new born baby is given a booster shortly after delivery to make up for the lower level they start out with, bearing in mind their dietary intake will come later when they start feeding. However having too much Vitamin K can be harmful (especially for kidney disorders), so you should avoid taking supplements unless directed. And you don’t need Vitamin K in your diet every day because any that is surplus to your body’s immediate requirements is stored in the liver for future use.
  11. Stroke

    If you look at the test result it should give you a range for a normal result. Usually this is 58-125, which would mean that 72 is normal, and therefore not a cause for concern. The other thing to bear in mind is this test was after your stroke, not before, and clotting can affect the outcome of results.
  12. Stroke

    Hi, Is there known to be a link between PS deficiency and stroke? I had a stroke in September and the only thing that came up was a very mild reduction in my protein s levels (72). None of the classic causes of stroke were found for me such as high blood pressure, PFO, atrial fribulation. I've been advised to have another protein s test to see whether it was just a temporary reduction. Any thoughts appreciated. Thanks. D
  13. Sandie, the photos you uploaded showed: Protein S Ag Free Result 20 Range 50-160 Your result is low. Total Protein S Antigen assesses the Protein S deficiency as either Type I or III (IIa). (source)
  14. Rest in Peace Bela, our thoughts are with you and your family.
  15. http://www.bendbulletin.com/obituaries/5790875-151/bela-lain-moynier Feb. 10, 1979 - Nov. 19, 2017 Bela Lain Moynier passed away suddenly at his home in Bend, Oregon on November 19, 2017. He is survived by his mother, Jo Ann Moynier Barnum; father, William (Bill) Moynier; step-father, Ed Barnum; grandmother, Verla Stidman; aunts, uncles and cousins. He is also survived by close friend and housemate, Ron Paradis. Bela was born in San Diego, California, on February 10, 1979. He attended grade and middle schools in Eugene, OR. He graduated from Bakersfield High School. He studied at Lane Community College and COCC. At age three Bela wowed his audience playing violin Suzuki style, his music talent inherited from father and father's parents. He loved the martial arts, was a ninja at heart and had natural abilities with art. He had a passion for baseball, also inherited from father and paternal grandfather, and was an avid Dodgers fan. He excelled in basketball and soccer. His mother primarily raised him in his early life, supporting him in every way. He would often have half dozen friends sleep over at his home, where he also interacted with many foreign students who lived there. At age eleven, he lived six months in Australia with his dad, who shared a teacher exchange. He sky dived and scuba dived with his mother. Belas family invite their friends to join them at the home of his mother and step-father at 65859 White Rock Loop on Saturday, December 2 from 1-5 p.m. to celebrate his life. Donations may be made in his name to the charity of one's choice with suggestion of helping the homeless and research for a cure for protein 'S' deficiency. Please visit the online registry for Bela at www.niswonger-reynolds.com
  16. Hi, all, I am a 45-year-old female and was diagnosed as PE in September this year and since then I have been on Eliquis. They didn't find any clots in my legs when I was in the hospital. I was told that I had unprovoked PE. My doctor ordered some genetic tests 30 days after my PE and my labs showed that everything is normal except a low protein S Ag-free (16%). After searching some information online, I think that I have PSD. But my hematologist told me that my labs are not diagnostic of PSD and he will repeat the test after I stop taking Eliquis for a while. But I got some information online saying that Eliquis does not affect protein S levels. Does anyone have similar situation?
  17. So was I was born with a Protein S Deficiency? A mutant gene I inherited?? Thanks in Advance, Deb
  18. Hi Jill I know this has been some time since your post, but did you get any answers to your question? Like you I'm wanting to take supplements for perimenopause and everything I try seems to increase my inr... Agnes castus, rhodiola, green tea etc. I'm not on any blood thinners and don't really want to just to take supplements but wondered if you have found anything? caroline
  19. You said her INR was always too low, so I assume she has been taking Coumadin or warfarin. The dosage of this medication depends on the response by the patient, some people take 2mg and someone else takes 20mg and gets the same response. What was her last INR result and the dosage she was on? How long was it in days/weeks between INR tests?
  20. My name is Brandi and my mom has Protein S Deficiency. She had her first stroke at the age of 18 and has had many more through out the years. My mom is 60 and just recently had a pretty bad stroke on 4/8/2017 that seems to have taken the use of her right side and Aphasia. She has always been extremely blessed after her strokes to have gotten back some kind of independence and we are not as confident after this one. My mom and I reside in AZ. Seems we are having trouble getting her the help she needs. Her INR’s are always low and there is very little knowledge of how to help her get back on track with this disorder or even how to treat her to minimize or prevent future problems. I am told she is on as much blood thinners as possible with no results. I am reaching out to anyone that might be able to educate me on what this is and how I can help my mom. In addtion to my moms’ stroke my dad passed on 4/24/17—this has been a rough two months and I would like to keep my mom around as long as possible and help her with this disorder.. Any help is appreciated.. Thanks!
  21. Testing Children for PSD

    Q: If you have Protein S Deficiency and have children, when should you get them tested? A: There is no need to test them, unless there is another risk factor for thrombosis. The statistics show that about half of the people with a deficiency of Protein S stay clot free throughout their lifetime. The other half tend to experience their first clot in late teens or early twenties. Medication, in the form of anticoagulants, is only given to people with a history of thrombosis. So until you have your first clot, you don’t know which half you are going to belong to. And until you have your first clot you aren’t going to be taking the anticoagulants that would have prevented it. This seems a bit bizarre until you consider the cost of blood testing, medication side-effects (and risk of uncontrolled bleeding), and how health services tend to operate. Most of the time health services are responding to a change in health, then diagnosing and treating. It is very rare for a health service to extend to preventative actions unless it is cost effective or save lives (e.g. vaccinations). The cost of treating a few patients with thrombosis is cheaper than testing the whole population for the all the different risk factors. However things are slightly different if you already know someone related to you has already been diagnosed with Protein S Deficiency. But a blood test isn’t going to tell you whether you will or won’t go on to have thrombosis, and so you won’t be put on anticoagulants. So all a blood test will actually do is cause you to worry more about the future, and perhaps exclude you from health insurance or force your hand into declaring it as a pre-existing condition. So why bother? If you are a teenage girl considering birth control measures, then testing is advised before you take any pills. There is an increased risk of thrombosis with some contraceptives, so if there is any family history of PSD or thrombosis then get your PSD status checked first. If you are teenage girl and are planning to, or think you may be pregnant then also get yourself tested because it is relevant to the care of your baby and the doctors will want to know about it. Other than that, assume that it is good and healthy and sensible to take precautions in certain circumstances, such as if you have an extended stay in hospital (e.g. a broken leg) or taking a long journey (plane, train, whatever). Precautions means staying hydrated, avoiding alcohol, exercise normally, staying the right side of obesity, and maybe wear some compression stockings. Everyone can do this, you do not have to be diagnosed with PSD to reduce the risks of thrombosis. If you are under twenty and want to get yourself checked then by all means do so. However even if you are given a PSD diagnosis the doctor isn’t going to give you anticoagulants. And without them you may find out the hard way whether you are one of those people that gets to experience their first thrombosis event. But do so, knowing that the symptoms can be recognised and treatment is available. Not getting tested is probably the most practical way forward... it makes no difference to your actual risk of thrombosis... but at least you can keep your medical history to yourself and gain the benefit of insurance cover. A simple (D-Dimer) blood test can rule out a false alarm... so always get yourself checked if unsure. If the blood test comes back positive they will do an ultrasound to see what is going on, then give you a drip with some heparin (an anticoagulant) and you’ll probably be back home in a week or two. Life goes on, and then you start reading about it on the Internet. It affects some people worse than others but generally it is a health condition that can be managed, there is nothing to be worried about, and what will be, will be. Of course, with hindsight, I would like to have been diagnosed correctly after my first episode of thrombosis. Had that been done then I could have avoided the (more serious) Pulmonary Embolism (clot in the lungs) I experienced a year later. For accurate testing you need to wait 3 months, come off warfarin/Coumadin and have two blood tests (twice, as a safeguard against lab error). And of course, understanding risk is a personal thing. If you want to get tested please go ahead and do so. But be aware that the result is unlikely to change the risk of thrombosis but you may find yourself declaring the tests when applying for medical cover and travel insurance.
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