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James

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  1. When you are travelling on anticoagulants you are in a better position than other passengers. They may have an undiagnosed risk and they have no protection at all. Whereas you have medication to protect you, and you are aware of possible symptoms, and can take additional precautions seriously. https://www.proteinsdeficiency.com/lifestyle/air-travel.php I have flown from UK to Australia on my standard dosage of Warfarin... there is no need for anything more than usual however if you a doing any long distance travel it helps if you can visit your doctor beforehand to confirm you are fit to fly. Let the doctor do their job and advise you what is best for you based on your medical history.
  2. Full article available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2752078/
  3. As an update to my previous post we took out a joint policy with LV (Liverpool Victoria). I declared my health history and PSD and was given cover with an extra premium to pay. A ten year policy for £80k costs us £25.51 per month. This doesn’t pay off the mortgage but it ensures that after debts and funeral costs the amount left for the other person to pay would be affordable.
  4. Early Identification of Protein S K196E Mutation in a Patient With Cerebral Venous Thrombosis: A Case Report https://www.sciencedirect.com/science/article/pii/S1052305718305627 Background Mutation of protein S K196E (PS K196E) is a genetic risk factor for venous thromboembolism; however, there are few reports on cerebral venous thrombosis (CVT) with this mutation. We report a case of CVT that was diagnosed as having PS K196E mutation at the initial thrombotic event. Methods A 54-year-old man suddenly developed generalized seizures after headache and nausea. Brain magnetic resonance imaging showed cerebral edema, and angiography revealed CVT. Blood examination revealed that protein S activity was low (44%) despite normal free protein S antigen levels (81%). Sequence analysis revealed a heterozygous PS K196E mutation. We treated him with warfarin with the international normalized ratio maintained at 2.0-3.0. After 1 month, he was discharged without any neurological sequelae. Results Early identification of the causes of thrombophilia is important for the long-term management of CVT. However, detection of PS K196E mutation is difficult because its only feature is a moderate decrease in the activity of protein S, which is influenced by environmental factors. Conclusions The possibility of PS K196E mutation should be considered if other causes of CVT are ruled out and if protein S activity is decreased.
  5. I thought your concern was about his sporting career? Protein S Deficiency is either hereditary or acquired. Identifying the finer details of what type of PSD your son may have doesn’t change anything relating to his sports activities. Doctors will roll all causes under the blanket heading of thrombosis and treat him the same as any other person with thrombosis, so you don’t need specialists. The focus should now be on prevention and adjusting that to his lifestyle (sports activities).
  6. It is unusual for protein s deficiency to trigger a thrombosis event at his age, so there may be other risk factors. Without the familial testing to confirm the diagnosis it may help to run the screening process again. For example protein s levels are naturally reduced after a clotting event, and warfarin reduces them too, so you need to be clear of both to get a reliable natural reading. Factor V Leiden is often misdiagnosed as Protein S Deficiency. Regardless of the cause, if he has only had one clot then normal procedure is for warfarin for 3 months, then to come off anticoagulants. This would allow him to play contact sports as normal. However if he has an injury, is laid up, has a broken bone etc, then there is a higher risk of another clot unless he receives anticoagulants. A second clot would put him on anticoagulants for life. Apart from checking the screening I would suggest contacting a trade body for rugby and asking for support from their medical advisors. There may be professional players dealing with the same issue already.
  7. There is not much point in determining the type of PSD. Doctors prescribe anticoagulants to reduce the risk of thrombosis. They don’t do anything to treat the PSD. Unless you are facing a situation which significantly increases the risk of clotting it is unlikely they will prescribe anything unless you have previously suffered from thrombosis. There was no history of DVT in my family apart from myself. However my mother, sister and niece all have PSD like me. Only blood tests of family members will tell you for sure.
  8. Anticoagulants are normally only prescribed if you have a history of thrombosis. Many people have low Protein S levels and do not get a clot. I do not know about microangiopathy but I can see it relates to the endolethium. The endolethium is known to play a role in production of Protein S. So maybe it is the other way around, the problem with the endolethium is causing a reduction in your Protein S levels. Family testing would probably be helpful in understanding whether anyone else in your family has low Protein S levels like yourself. If anyone does then it would indicate a hereditary cause, rather than caused by a health condition.
  9. 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.
  10. 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/
  11. 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?
  12. 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.
  13. James

    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.
  14. 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)
  15. Rest in Peace Bela, our thoughts are with you and your family.
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