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  2. 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.
  3. Thank you for your reply. At least after my MRI I'll have a clearer picture. Tracy x
  4. I know that ECG results can detect a history of PE, but I am not aware of any issues caused by PSD, other than the increased risk of clotting and its pregnancy issues. Your INR nurse has probably assumed that you have a heart related issue because you are taking warfarin. Some people incorrectly believe we have thicker blood. Apart from the Protein S levels it is like the difference between a cup of tea with one sugar and a cup of tea with two sugars... pretty much the same as normal. There is believed to be some kind of role for Protein S in immunological issues, and blood vessel growth (which may actually swing as a benefit against some cancers) but otherwise there are no known health conditions associated. We all have other health conditions besides our PSD, and although they aren’t linked, it is sometimes necessary that the treatment for other conditions is modified to take account of the clotting considerations of PSD. For example with kidney stones we may not be suitable candidates for sonic-breakup and have to pass them instead. Any consultant that works on heart conditions will already be very familiar with clotting conditions like ours.
  5. Hi. I'm new to the forum but not to PSD. I was diagnosed 26 yrs ago. I've had 2 DVT and 2 PEs. I'm on warfarin lifelong now. Recently I had an ECG and it picked up some irregularities, I'm due to have an MRI. When I told my INR nurse there might be a problem with my heart she said she wasn't surprised as I had PSD. Does anybody know of any longterm effects as I can't seem to find anything. I feel a bit like Princess Leia..... I can normally find the answers out but your my only hope!!
  6. Hello my level is 20 could some one tell me if I'm 1 2 3 they say that there 3 degrees of psd
  7. Protein S Deficiency increases the risk of venous clotting (blood moves slower in the veins). Clopidogrel is an anti-platelet medication and better suited for prevention of arterial clotting (blood moves faster in the arteries). Aspirin falls into the same category. Maybe your doctor has other reasons for recommending Clopidogrel - warfarin is usually used for people with PSD and a history of clotting. When I was in my early twenties I worked in a call centre on a graveyard shift (BT ASO Grade 2) and found it affected my appetite. Warfarin is affected by diet so this is probably something to watch out for if you start taking it. It’s also difficult to stretch your legs when you are hooked up by your headset so make the most of your breaks.
  8. Hi i was diagnosed with protein s defficiency last march this year. I've been reading forums and been browsing google about this. My dr prescribed me with clopidpgrel bisulfate 75mg. And i'm working at 11pm to 8am a day, five times a week in a call center. I just want to know if working on this hours will affect me more?
  9. Don’t bother with aspirin. Aspirin will not prevent you from getting thrombosis. Please speak to your doctor before making any changes to your routine medication.
  10. I have recently been transferred to Rivaroxaban and have experienced the most horrendous hair loss. I have lost 70% of my hair's density and am now considering a wig. My hair also thinned on warfarin, but not to the same extent. Has anyone else experienced hair loss? Anna
  11. I have recently been transferred from warfarin to Rivaroxaban in order to control my blood due to PSD. In the last 6 months I have experienced the most horrific hair loss and have currently lost 70% of my hair's density. I found that I experienced a degree of hairloss from warfarin exposure, but nothing like the hair loss I am currently experiencing. I have done a somewhat brief online search (before finding this website) and have found that I am not alone in my hair loss. Has anyone here experienced hairloss from either warfarin or Rivaroxaban? I'm so upset about this that I am seriously considering stopping my therapy and taking aspirin instead. If anyone has any experiences or thoughts on the matter, please do let me know. Anna
  12. Anyone taking rivaroxaban yet? I've been referred to the consultant and it looks like I may go on to this drug seen as people like us are now covered with it! My INR is totally uncontrolled and I currently take sinthrome, ATM I'm taking 7.5 which I believe is a high dose. Would love to hear if anyone is on this wonder drug? I have to admit not having an INR taken weekly is a very nice idea
  13. On 11th January 1996 my blood test results were given to me and I was diagnosed with Protein S Deficiency. My results were as follows:- Free Protein S <10 (normal lab range 58-125) No lupus antic Normal Protein C (Act) Normal PLASM Normal AT III No abnormality in APC resistance On this topic I would like to invite you to answer the poll question and record the results of your Protein S levels that were given to you when you were diagnosed with Protein S Deficiency. Mine was recorded as <10 so my vote is in the 00-10 category. Thanks for participating.
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