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Do you have Protein S Deficiency?


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Guest Anne Holmes

Hi Lawrence,

I too have an IVC filter which is filled with clots, and I've only had it in situ 2 years. I was a little concerned that your eldest daughter ,who has been diagnosed as a PSD sufferer is using oral birth control tablets. I personally do not know of any oral contraceptives that are recommended when someone is suffering from a thrombophelic condition. Perhaps she should discuss that with a haematologist. Some sufferers are lucky and go through life without having DVTs and pulmonary emboli, but I personally would not tempt fate.

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It depends what type of hormone is in the birth control pill. I was taking the combined pill (oestrogen and progesterone) when I got my DVT back in 2001. This was most definitely the cause of my DVT.

I am now no longer allowed to take this kind of pill, although I have been told that the mini pill (progesterone only) is ok for people with clotting conditions as it is the oestrogen that causes the problems.

However, I choose not to take the risk at all so don't take any kind of pill.

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  • 4 weeks later...

I am a 29 year old and been dealing with DVT's and Protein S Deficiency for just over three years now...They seem to have tried a bit of everything from Inohep, Lovenoxx, Warfin and hepron.

The intial clot resulted from me tearing my calf and ever since that trama I have been in and out of the hospital numerous times, had a filter put in and have yet to find any consistancy in my daily life or have we been able to mantain a theraputic INR level...Dou you have any suggestions?

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Welcome to the BB. When you have time, read through the various posts and archives, you will find most of your answers there.

Is there a reason why you cannot be on a permanent dose of Wafarin Sodium? Some people find that the generic wafarin Sodium does not help to stabalise their INR, but Coumadin does.

I take Ginko Biloba to keep my blood thinned.

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Guest Ladybugchick

I am 30 years old and living in Auckland, New Zealand. When I was 28 years old, I was made to have a blood test in September 2005 because doctors didn't want to prescribe the pill in any form because my mother had a blood clot when pregnant with me, and my grandfather on her side died of pulmonary thrombosis when I was five. The test came back saying that I was Protein S Deficient, however, the doctors left me with nothing. I was told that they would not prescribe the pill to me in any form because of the risk of blood clots, and that was it. No support, no advice, no follow up, no idea what to do. I felt totally alone and I immediately buried my head in the sand. I have not pursued matters any further with my doctor, but I have taken up more sport and I'm attempting to reduce my weight. I have found this forum an absolute lifeline, it is certainly more informative than my doctor.

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  • 1 month later...

My name is Elizabeth, I'm 36, and I live in Florida (in the United States). I just found out two days ago that I have PSD. My husband and I have been trying to have a baby for 18 months and have been unsuccessful. I had two early miscarriages that ended at six weeks. All this time I've had the feeling that we were getting pregnant, but I wasn't holding it for some reason. We went to a Reproductive Endocrynologist (RE), and he ran us through a whole battery of tests. We had everything done, and we kept turning up perfectly healthy. I was dumb-founded. Finally, I read on the internet about the "Recurrent Miscarriage" blood panel. I went back to the RE and requested that he send me for this; he told me that it would be a waste of time because miscarriages are so common and he wouldn't send me unless I had three miscarriages. I told him that I really feel we're getting pregnant, but something's wrong, but the RE dismissed me. So, I went back to my Gynecologist and asked her if she would please send me for the "Recurrent Miscarriage" blood panel, and she really listened to me, and she agreed. I got my results two days ago. My number is 24. So, THAT explains why we haven't gotten pregnant!!!

My Gynecologist is referring me to a Perinatologist. I hope I get an appointment next week so I can do something about this.

Besides struggling with infertility, I've never suffered anything.

I talked to my mother about it because I'm aware that several people in her family have died from stroke or died of "heart attack." My mother says that unless something else killed them, everyone in her family has died of stroke. :) Now that I know what it is, I'm trying to spread it through the family and telling them about PSD. My mother has never had a stroke or anything that I'm aware of so we just weren't aware.

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  • 2 weeks later...
Guest kbommel

Hello my name is Kristina from California, USA. Well I can start off when I found out that I had PSD was in Feb 2007. But before that, my left leg was swollen as it was on the superficial vein. I couldn't barely walk. It was so painful. The doctor couldnt figure it out why I was having the clot on my left leg. So they put me on Motrin for the inflamation while the other doctor said that was crazy for them to give me Motrin but they didn't know what was wrong and didn't even bother taking a blood test. It took them 3 weeks to decide to give me a blood test. The reason they decided to give me a blood test because the clots weren't getting better as it was getting worst!! So I had an ultrasound to find out where the clots were located so it was moving up close to my deep vein so they sent me to ER because it didn't look good. I was also having some breathing problem as it felt like I was having Asthma. I was having the breathing problem for more than a year. I couldn't believe I surived that long because the doctor said I could have died. So they did a Cat Scan to check my lungs. They found clots on both lungs so admitted me to stay in the hospital to monitor me. I was terrified because they told me I won't live due clots in both of my lungs. I haven't seen the Cat Scan to see what it looks like. I was in an emotional roller coaster because I am deaf and no one is telling me what was going on.. I don't even know what type of PSD I have. I had a paper from the doctor saying about DNA. I don't understand why would they want to check me for my DNA.. I am still confused after 3 months.. I go in for a blood test almost every week because my INR is always up and down. They told me to eat the same food every week so it will stay stable.. I am a vegetable eater and love protein bars. The problem is I don't eat it often as I only like it when I am in the mood. Why is it so complicating to keep it stable. Also I excerise a lot on my job as I am a letter carrier for the post office. I hate to eat but doctor said I have to eat to keep up with my INR. I have lost 35 pounds. Also after I went home and there's an Clinic for Coumadin, for who is on Coumadin contact them to let them know whats happening with themselves. It's good to have but I am not really satisfied with them. I have no idea where I got the PSD from as they said it's an genetic abnormality as it's from the family. I wanted to know 25 years ago, would they know about the blood disorder as my mother had a blood clot on her leg but don't know which veins as she died 2 years ago of congestion heart failure in her sleep. My father said she was on Coumadin as long as he remembered. I always wondered if my mother knew that PSD can be pass on to a family member. I also knew that my mother had a couple of miscarriage before she had my sisters and brother. I had two healthy pregnancy but I was so sick for 9 months vomiting as I couldn't keep the food down. I don't know if that related to it. Again I still don't know what's going on with me because doctors aren't telling me anything so that's scary.. I will be seeing my doctor this Friday and I got a list of questions that I will be asking.. I wanted to thank you for your time reading this and it would be great to hear from you and can answer some of my questions here..

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Hi Kristina and welcome to the forum.

The reason your doctors ask you to be consistant with your food intake is because most green vegetables have a high amount of Vit.K. This interferes with your dosage of Wafarin Sodium(Coumadin). It is fine to eat the greens you want to, but it is also important to be consistant with your intake.

PSD can be acquired or inherent. In your case, I am guessing it is inherent as your mother probably had it.

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Guest kbommel

thank you for responsing this as I really appreciated.. I felt so alone out there til I found this forum, I felt so grateful that I am not alone what I have been thru and see others of what they have gone thru. I will find out what type of psd i have. am still overwhelming because its like controlling me and everything changes overnight. I am trying to get use to accept my condition of blood disorder. The only thing I am concern right now is my two daughters as one of them is 18 years old is taking Birth Control Pill. I have warn her to get tested to make sure that she doesn't have PSD. She refuse to get a blood test as she hates needles.. Any suggestions?

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Guest artgirl

Hi Everyone,

My name is Sara, I am 31 years old and live in N. California . I just learned last Monday that I had a PSD.

I went to my eye dr. when I noticed a black spot and slight blurry vision in my left eye. He saw something abnormal and set me to a Eye specialists. Who explained to me that I had CRVO, Central Retinal Vain Occlusion (a blood clot in the center vain in the back of my eye that was causing bleeding. and in turn affecting my vision in that eye). The Eye specialist sent me to a retinal specialist, who confirmed the CROV. The big question was what caused it. I?m a normal healthy adult female, I was on birth control but that was the only factor I had. (My retinal Dr. told me to stop taking the pill that day)

I did a bunch of blood work and my results showed a low amount of S protein.

So last week I started treatment: 4 days of Lovenow shots (hated them) and now I?m on Warfarin.

As far as we know, I am the only one I?m my family who has PSD.

I have been reading thru this site and I have not noticed anyone else with CROV? Is there any one else who have developed a clot in their eye? How rare is this clotting location associated to PSD?

Im So glad I found this web site, I have been reading every site I can find on PSD and CRVO. However is this the only one I found that has a forum. I like being able to read others stories and questions. Its nice to know I have a place to go and get info from other who have the same deficiency I do.

Its been a interesting, frustrating, and very hard month sence this whole thing started, but im getting thur it. Im just trying to take it one day at a time and do what I can to educate myself on PSD.

Take Care

sara

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  • 3 weeks later...
Guest baberuth162

i was diagnosed with psd in 1993 i am now 21yrs old and my mum also has psd she was diagnosed in 1987 6months after giving birth to me and getting thrombosis.my grandad had psd also but took no treatment for it and died of blood clots to the brain in 1997.i am not taking any treatment for psd yet but i may need to in the future as the hospital told me.anyone else had psd since they where small. thanks Ruth xxx

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Guest kimead

I am 43 years old. My 63 year old mother just had a blood clot in her leg, and was diagnosed with PSD. She lost 2 sisters to blood clots when they were in their 30's. Her brother also suffers from PSD and has problems with his legs. All of them had PSD. My mom was never tested, but thought she had "dodged" the PSD since she has had no problems - wrong! I just requested my own test from my doctor. I did not even speak with the doctor, the lab drew my blood and had it tested. I told the nurses my family history, and said that I wanted to be tested for Protein S Deficiency. They just called with my results, and said that my "activity levels were normal." Now I am worried that I wasn't specific enough, and didn't request the right test.

What exactly should I be looking for on the lab results. I plan on getting a copy of the results from my doctor, but I don't know for sure if "normal activity" means that I don't have PSD. My 17 year old son is about to take a Mission Trip from Indiana to Brasil, and I am worried about the long flight for him. However, if I don't have PSD, then he can't have it either, right?

Please let me know what test I should be requesting from my doctor, and what I should be looking for in my lab results. I am still too worried to be "relieved" at my "normal" activity report.

Thank you,

kim

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Rather than directing your doctor to carry out tests I think you should ask for referral to a haematologist. That way the tests and results will be comprehensive and can be correctly interpreted. Some people have more than one type of thrombophilia (e.g. Protein S Deficiency and Protein C Deficiency) so just getting one test isn't going to give you all the answers.

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  • 2 weeks later...

Hi my name is Lonnie i am 47. I was diagnosed with PSD 2 years ago. 3 years ago i was going to donate a kidney to my brother who had at the time been on dialasis for 3 years as his kidneys packed up (Diabetes) . After 4 months of tests at the lister hospital stevenage i was told that i only had one kidney the other was to small and shrivelled and also to expect heart attack at any time as tests showed colestrol of 9.25, 2 stone overweight, and a smoker i was put on lipitor 20mg per day. 4 weeks went by i had chest pains saw doctor and told i had a small leak on lung possibly torn it ? as i lift heavy loads as i worked on maintenance of old churches woodwork etc then heavey chest pain. 2 weeks later taken to hospital after three days they found i had a Pulmonary Embolism multiple clots on the right lung two and a half weeks in hospital and i was put on daily dose od warfarin 4mg,Tramadol 400mg, Co Dydramol 60mg, and lipitor 20mg. I was still suffering chest pain months on and sent to papworth lots of horrid painfull tests with cameras and diagnosed with heart disease left anterior descending which although now stented still gives angina pains. Then came the results of the protein s deficiency this really hit home as i new it would make this a life long sentence as i now to date take 21 tablets a day as well as the rest i have to take aspirin and clopidogrel 75mg along with the warfarin, atenolol 50mg and isorbide monitrate 90 mg.co dydramol and tramadol. I cannot work out on site any more and can only work two days a week in a carpentry shop (with all them saws and machines) to tell the truth i am knackered and cant seem to get going i am always heavilly bruised and dare not cut myself on work tools etc. I married 28 yrs ago and wife is so careing three lovely daughters 4 super grandchildren and like a fool i prefer my own company have turned into a grumpy old git with a short temper i don,t like what is happening i cant control it and i want to stop medication is it just me????

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You just have to hang in there, there is life after PSD, PCD and FVL. Read the archives, I do not take Wafarin Sodium. I maintain myself on Ginko Biloba, 40mg a day. I started with 40mg 3 times a day when I had a stroke 2 years ago, but am now on it just once a day and doing alright.

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  • 1 month later...
Guest ESL2979

Hi, I'm a 28 year old female and I just found out I have PSD a few weeks ago. I have not had any blood clots. I found this web site and am glad I did because my doctor didn't really give me very much information on the topic. My father has PSD as well and we think his father may have had it (died young from a blood clot). The issue I have is, I'm not on any medication, but am worried how my case is compared to others I've read about. My doctor told me a number of what is normal and what I am. She said I'm a 57 and normal is 60. How much do I have to worry about PSD? I was on the pill for 12 years and was taken off it once I was told I had PSD and told I can never take it. I'm just trying to get some information, especially because I will be looking to start a family sometime in the very near future. I'm worried about pregnancy and miscarriages. If anyone can help me in any way, please feel free to e mail me (ESL2979@aol.com). Thanks.

Ellen

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Guest lorenahv1

Hello Everyone My Name is Lorena Harrington im 25 years old and was diagnosed with PSD since November of 2001 in Oct 21st 2001 i had my son after having him i started with severe headaches in oct 31st 2001 i had a stroke which partially paralyze my right side doctors diagnosed me with protein c and s defiency and would be on warfarin coumadine for the rest of my life. its great to have found this website to gain more information about PSD. as it appears im the first and only one with PSD.

Lorena H

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  • 3 weeks later...
Guest proteinsgrl

Yes, I was just diagnosed with PSD during my current pregnancy because I have had 2 miscarriages. I am 37. I have been very scared not having anyone to talk to about this because it is SO rare and even more rare in my case because it is not hereditary, which is usually the common finding. They don't know why I have it. What is even more scary is that 7 years ago I was diagnosed with low platelets, again, not for the common reason of having it which is possesion of the anti-platelet antibody. They don't know why I have this either. So, a bleeding disorder paired with a clotting disorder and having to take blood thinners on top of it...scary! I will be having my first baby in January providing everything goes well. Please pray for us. I want to know if there is anyone with these 2 conditions combined, I can't find solid info. How are you coping? Do you know anyone else with this? We are special...that's for sure.

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