James

Your Protein S level when diagnosed with PSD

What Protein S level did your blood test show?   171 members have voted

  1. 1. What Protein S level did your blood test show?

    • 00-10
      15
    • 11-20
      20
    • 21-30
      22
    • 31-40
      34
    • 41-50
      22
    • 51-60
      10
    • 61-70
      5
    • 71-80
      0
    • 81+
      3
    • unknown
      13

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24 posts in this topic

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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Do you want want free or total protein S? + I was already on Warfarin when I was treated in 1986 so my result may not be relevent. I believe that warfarin reduces the Protein S levels even further.

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Good question! For the basic purposes of this poll please use Free Protein S level results. And yes, warfarin/coumadin does reduce Protein S levels further (although you shouldn't be alarmed because it provides therapeutic cover that counteracts this), so it is always best to be tested without warfarin present (e.g. substituting with LMWH). Please use your best judgement to provide the most relevant test result.

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I note that I am the only one so far with a protein S level of 81% or above. I have type 11 PSD where the levels are normal, but functional Protein S levels are low.

Helleborus

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I am a type II patient as well. Found out from a bad case of vertigo outside of an ER. My wife works as a nurse at the ER and I was taking her lunch when severe symptoms presented. Ended up having a DVT in the right calf and Bilateral PE. Discovery led to finding my mother and uncle has it as well.

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All I know is that when I was fully diagnosed, I was told my level was 35 - but I don't know any more than that. I have two daughters, one has been tested positive and following a phone call, it looks like the other one is tested too

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I'm a little confused about something. :)

Why are there PSD votes in the 58-125 range? Isn't that the normal range?

Mine is 24.

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At the moment 7 forum members have voted in the 61+ ranges, which would indicate normal Protein S levels. This may reflect the broader reach of our membership which includes people with other types of thrombophilia such as Protein C Deficiency, Factor V Leiden, etc.

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Hi Elizabeth,

My dr. said that PSD can be diagnosed by 2 indicators: amount of Protein S in the blood (antigen level) and the activity level of your Protein S. In other words, you may be deficient if you have too little Protein S or the Protein S you have is not functioning as it should. Keep in mind that it depends on when you are tested, as levels normally drop in pregnancy. Here are the activity ranges:

Normal (not pregnant): 60% - 140%

Normal Pregnancy: around 40%

Deficient: 35% or less

When pregnant, I have a normal antigen of Protein S, but my activity levels are low/borderline: 36%. I wasn't tested in between pregnancies.

My doctor also said that there is still little research on PSD in pregnancy so statistics and intrepretations across the industry could differ slightly, so your personal history plays a key role in interpretation of test results and treatment.

Warm regards,

Ufasaha

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hello i have a little green card and my levels on this are total protein s antigen 0.34u/ml and protein s free antigen 0.38u/ml could u please explain these to me i dont know what type psd i have its hereditary from my mums side of the family thanks again Ruth xxxx

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http://www.aruplab.com/guides/ug/tests/0030112.jsp

ARUP's Laboratory Test Directory

National Reference Laboratory

0030112: Protein S, Total Antigen

Test Mnemonic: PROT S

Methodology: Microlatex Particle-Mediated Immunoassay

Performed: Sun-Sat

Reported: 1-2 days

Specimen Required:

Collect: One 5 mL lt. blue (sodium citrate). Refer to the Hemostasis/Thrombosis Specimens section in the front of this User's Guide for specimen collection instructions.

Transport: 2 mL platelet-poor plasma, frozen. (Min: 1 mL) Submit specimen in an ARUP Standard Transport Tube.

Pediatric Collection/Transport: 1 mL platelet-poor plasma, frozen.

Unacceptable Conditions: Serum. Hemolyzed specimens.

Stability: Ambient: 4 hours; Refrigerated: 24 hours; Frozen: 2 weeks

Reference Interval:

1-4 days: 12-60%

5-29 days: 22-78%

30-89 days: 33-93%

90-179 days: 54-118%

180-364 days: 55-119%

1-5 years: 54-118%

6-10 years: 41-114%

11 years and older: Females: 63-126%; Males: 84-134%

Interpretive Data:

Patients on oral anticoagulants may have decreased values. Patients should be off oral anticoagulant therapy for two weeks for accurate measurement of protein C/S levels.

CPT Code(s):

85305

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My levels were 19, 11 years ago, i am currently waiting for re-test results, as when was tested i was on warfarin.

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My results have come back as yes i do have protein s. and i have also just found out i also have antithrombin?! whatever that may be :)

I had built my hopes up to a wrong diagnosis all those 11 yrs ago due to the warfarin, sadly it wasnt to be.

According to the heamo Antithrombin is linked to liver and kidney disease, but thankfully they ruled those out.

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Sorry to hear that Jayne; I hope it doesn't make you feel bad. At least you know for sure now and that can be helpful in the long term.

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Hello everyone,

I am new to this site and PSD. I was diagnosed positive for PSD in Feb/09. My levels were as follows:

Antithrombin III - 92% (normal)

Protein C - 98% (normal)

Total Protein S - 28% (normal 70-120)

Free Protein S - 20% (normal 50-130)

Functional Protein S - 38% (normal 65-132)

Prothrombin Mutant Gene - negative

Factor V Leiden Gene - negative

In the past 12 months I have had a DVT in my right leg and underwent anticoagulant treatment for 3 months and then had superficial clots in both my legs and my right arm. I am now permanently on anticoagulation therapy. I am hoping this site will help me stay healthy through experiences and ideas from other members. Thank you for allowing me to join your team!

Sincerely,

Dee :blink:

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Hello when I was pregnant my level was 16 it's now dropped to 14. Just has my son tested and his was 69 which is one off normal range 70+ so they are saying it indicates he hasn't got psd! As if your child inherit PSD there levels are normally around the same as yours if they have it. Noah was only one when I had him tested so it will be repeated when he's older if he wishes. X

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Hello! My name is Kristi, I'm 27, and I'm in the military. My brother was recently diagnosed with PSD, he recently had a DVT and PE (his level was 15), and due to our family history (grandfather, brother), his doctor thought that it would be a good idea if my sister and I got checked too, even though we are both currently w/o symptoms. I just got my results back yesterday and my Protein Free was 46, Protein Total 63. Everything I've read suggests it's a mild case of Type 2, but my doctor is telling me I'm fine, but then also said that he didn't know much about this. From the research I've done, it's my understanding that this is a condition that typically gets worse with age, and I'm still relatively young. He also said that the reason it's normal is because I'm a "menstrating female.". But I haven't read anything that even refers to menstration as being a possible reason why my levels would be low. I asked him to refer me to Hemotology to completely rule it out and his response was, that he had already spoke to Hemotology and they said I was fine. I'm just wondering if this is something I should continue to follow up with in the future, or if any of you can provide me more information or speak to any of this from your experiences? Any help you can provide would be greatly appreciated!!

Edited by Kmcc

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If you haven't had any thrombosis events then you are fine. About half the people with low Protein S levels don't get any thrombosis and as far as I can tell the actual level doesn't appear to be the main determining factor for thrombosis. PSD doesn't get worse with age or get affected by menses but natural Protein S levels do vary by age group. It's mainly a concern from late teens onwards.

All you need to know is that there is an increased risk of thrombosis for you because of your family history and you should remain vigilant for symptoms. It also means it is advisable to reduce risk factors (smoking, contraceptive pill, obesity, dehydration, immobility, long-haul flights) and if you are concerned about things to get them checked (a simple d-dimer blood test is usually all that is needed to do a quick check). Your doctor doesn't sound as though he's fully up to speed with PSD but he doesn't have to be - there's nothing to do unless you get thrombosis and the best way to avoid it is reducing risk factors rather than medications. If you want to consider family planning then ask your doctor to refer you to a high risk obstetrician (not because of a high risk but because they will be more knowledgeable about PSD than your basic obstetrician).

If you haven't done so already please add your results to the poll - it will help to build up a better idea of how to compare our results with one another.

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James,

Thank you for the info. You were much more helpful than my doctor. I asked him if I should stop taking my birth control, and he replied that it wasn't necessary and I was fine. He told me that I do not have any Protein S deficiency, said my levels were normal and that I was fine. He also said that if I "really had it" my levels would be less than 5, which as we all know is not true. When I tried to dispute what he was saying, he replied that there is Protein S Deficiency and Protein S insufficiency. But once again, I've never read anything about Protein S insufficiency... I have very little trust for military doctors so that's why I have been reading so much and why I wanted to come on here.

I know I will probably live the rest of my life symptom free, which is great, but it's good to know because I plan on having another baby and I had a rough first pregnancy. Not sure if that was related or not.

Do you think I should get my daughter checked as well? She's 6... When I asked the doctor, once again, he said It wasn't necessary.

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And I shouldn't have said gets worse with age, but that your chances of getting thrombosis increases with age if you have PSD. At least that's what I have read in the studies on uptodate.com.

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There are different types of PSD - see http://www.proteinsdeficiency.com/psd.php

There's no need to get your daughter tested at this stage. There is a low risk of thrombosis until late teens, and youth testing isn't so reliable, so she can wait until she is old enough to understand the issues and decide for herself. A downside for diagnosis could be eligibility for some types of health insurance because of a need to declare existing conditions. Some people do test their children and get very obvious low Protein S levels but it doesn't put them at any advantage... all you can do is reduce risk factors and watch out for signs of thrombosis. I think you should ask to see a haematologist - he can set you straight on the facts as they relate to you. He can also advise you on contraception, since your circumstances have changed since your original medication was prescribed.

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Thank you for being so helpful! I have an appt with hematology on the 28th.

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Hello my level is 20 could some one tell me if I'm 1 2 3 they say that there 3 degrees of psdĀ 

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