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Protein S test results


Guest Liz Peters

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Guest Liz Peters

Hi James

I have just received a letter from my doctor, telling me that I DON'T have protein s now!

My first result showed that my level was (I will type how it looks on the result sheet ok)

R PROTEIN S LO 52% (55-124) SR At the top of the result it says ABNORMAL

This was tested at Burnley General. Then the blood was sent to Manchester University Hospital. The letter I got from them, along with my doctor's letter says:

Free Protein S u/dL 72

Someone has handwritten in Free Antigen Normal range - 56-150 - NORMAL

Does this mean that I HAVE this disorder or not? As I am sure you can understand, I am wondering whether this means for definate that I don't have it. My twin has been told she DOES have it, but now wonders too. Our younger sister has just had a little boy at 21 weeks, who was born and died on the same day, so of course we mentioned protein s to the doctors there - they say they will test her after 3 months, and she has to wear compression stockings for 6 weeks cause of this.

Should we get other family members tested now or not? I have SO many questions now and no-one to answer them.

I had a heparin injection for the surgery on my foot - which has been incredibly bruised since - far, far more than the last surgery I had on the other foot in February.

Is there anyone who can help me with this? I had dealt with the fact that I have this disorder - now I don't know what to think. The heamatologist that my twin was seeing retired last Friday, so there is no-one I can ask.

Sorry for the large post, I do hope that you may have some advice for me.

Best wishes and many thanks

Liz :lol:

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It sounds like good news. Basically the bit you are struggling with is the difference between "test results" and "diagnosis". It is customary to repeat blood tests for a positive diagnosis because Protein S levels vary naturally and there are also operational considerations such as contamination of the sample during testing. Your first result was borderline under the 'normal' threshold and your second test was slightly higher. It sounds to me as though everything is okay. However the job of interpreting your test results and forming a diagnosis rests with the doctor that ordered these tests for you. It is their responsibility to ensure you understand what they mean. If the doctor is unable to do this then ask for a referral. In the UK if you can't get a referral you can try speaking to your local health trust.

It might be a god idea to arrange a family visit, with you and your sister seeing the doctor at the same appointment, so that both of you can get the records set straight. Ordinarily your doctor could argue you don't need a haematologist because you have had a 'normal' result but you could insist on a second opinion because the first test was 'abnormal'. Don't worry about it... just press the doctors for a consultation... and if it is practical think about going together.

Your sister could have Acquired Protein S Deficiency as a result of her pregnancy.

Most of the haematologists I know would be interested in speaking to you because you are twins... it would be of professional interest for them to know more about your genetic makeup.

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Guest Liz Peters

;)

Hi James - thanks for the reply. It has helped me in some ways, but I have also been reading all the posts on this site, so I now have more questions!

I am correct in understanding that there are 3 different types of psd? If that is the case then could that mean we may still have the disorder?

My twin's free protein s is 45 - so surely that must mean she does have it - but the Burnley blood clinic remember a test coming back from Manchester saying normal, but they have no record of that now.

The staff at the blood clinic said it is very rare for the blood test to show abnormal - they remember us both cause of this, but they also said that whenever tests go off they come back normal - even though they have the same quality control!?

My first blood test doesn't say 'free' on it - could that mean that a different test was done? The second, higher one does say free on it.

Am I right in thinking that there are different tests in the UK and America? I have read on this site of tests for Total, Functional and Free - is functional the same as activity?

Do you think that we may be able to be tested for all three of these or not? My twin has had a dvt and 2 pe's - and I am also concerned about trying to get insurance cover etc etc. Or should we now tell everyone that we don't have this disorder now?

Both blood tests I had - in different hospitals - used the same blood - is this normal?

Sorry about all the questions - I'm struggling with all this at the moment!!

Hope you can help!!

Best wishes

Liz :lol:

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It's probably worth having a look at our web pages. Besides the forum we do have web pages covering key topics and one that explains a bit more about the four types of PSD (4th being acquired).

http://www.protein.org.uk/sitemap.php

By the way, I have PSD and a history of DVT and PE but I'm still able to get health and travel insurance, although my pre-existing conditions are excluded.

For an introduction to the finer points of PSD go to our links page and scroll to the bottom of the page... click on the last link on the page for the recommended article by Makris et al.

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Just to add to what James said - I have no trouble getting health/travel insurance with my PSD. James's history may be more severe than mine but I have PSD and I have had one DVT and I've still managed to get life insurance for my mortgage and travel insurance with the conditions covered.

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Guest monamom

I just came across this site yesterday and have been reading through many of the "posts". I have been on coumadine for almost four years. I take 2.5 mg each day and get my INRs tested every four weeks to keep them at 2.5--3.5.

I was diagnosed as having PSD after a blood clot was found on the back, left ventricle of my heart and then later having surgery on my left leg to remove two blood clots. They made the diagnosis from a series of special blood tests that were sent to a special lab.

I guess my question is should this test be done periodically to make sure the diagnosis was correct or is it something that is done once and determined a lifetime condition? Can it show the lack of protein "s" in one testing and then another time show that it is present?

My diagnosis was four years ago and until a recent problem with my right shoulder I have not questioned anything. But I have two torn tendons in my rotator cuff and my joints are deteriorating from arthritis which is why they say the tendons are tearing. It is terribly painful and they are telling me surgery is not a good option because of the PSD.

I am 60 years old and other than the above mentioned situation with my heart I have never had any problems. I had four children with no complications whatsoever. I had a hysterectomy with no complications.

Has anyone else had any of the same situations and if so how did you handle them? I just feel that doctors do not talk enough to a patient about PSD and just say you have it, take the medication and that is it. Am I wrong for feeling this way?

Hopefully someone will have a bit of wisdom for me. Thank you!!

Monamom

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Guest Marc

I'm no doctor, but I do believe Protein S levels can fluctuate slightly from test to test. However, if your doctor says the test shows you are deficient, then take his/her word. Protein S deficiency can be "acquired", but this would mean you have major liver disease like hepatitis or cirrhosis. Cure the liver disease and your low Protein S levels will go back to normal. However, "inherited" Protein S is a lifelong affliction. Most users of this forum (if not all) have inherited Protein S.

I myself have been on Coumadin almost 20 years taking 12.5-15mg daily to keep my INR at 4.0. This is certainly higher than most, but I have had DVT's at 3.5, so they have upped my range.

Surgery is certainly tricky, but I have had rotator cuff surgery as well as back surgery in the past 15 years. Both times I was taken off Coumadin almost 10 days before surgery and had to inject myself with Lovonox instead. After surgery you start Coumadin again, as well as the Lovonox, until your INR is back to your normal range. This is common practice. My mom, who also has Protein S, has had a couple of major surgeries herself and this is how they treated her too.

I feel your pain when you talk about your shoulder, but I have never regretted my surgery. I am 36 years old and didn't want to be restricted by it in any way. You need to seek out a very experienced shoulder specialist at a major hospital who can work hand and hand with a hemotologist, but Protein S should be no reason that your shoulder can't be fixed. I did run into some resistance 15 years ago when it came to my back surgery, but I searched and searched until I found a Nuerosurgeon at a major hospital in Boston and he did work with the hemo department and all went VERY smooth. Protein S deficiency is serious, so search until you find a doctor willing to spend the time necessary to work with you and certainly don't stick with a doctor who doesn't seem to know much about it or one who just blows it off as if it's no big deal.

Where are you located?

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Guest monamom

Thank you for your reply, Mark. I was diagnosed in Florida and now live in South Carolina. My husband is retired USAir Force and I have been seeing an orthopedic surgeon on base. I go for a third steroid injection July 25th and he is going to start sending me to civilian surgeons to see what kind of a response I can get from them.

This will probably sound ridiculous but I never even thought of PSD as being hereditary until my son asked me to please find out. I know of no one in my family that has ever had any issues with blood clots other than myself. So that is why I finally decided to start searching and find out some answers from others with PSD.

That is so interesting to know that you have had shoulder surgery and the proceedure that was used. One reason I have felt so frustrated is because my husband is on coumadine and has had several surgeries going through much the same process that you mentioned. He has never been told he has PSD--he takes coumadine for a metal aortic valve they replaced in his heart 11 years ago.

I will certainly do more "questioning" in the future and see if I can get some results. Once again, thank you so much for your reply. :D

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Guest Marc

Funny, my PSD was inherited from my mother's side of the family. She was from South Carolina and I have a hand full of relatives still in SC who also have PSD. Being a genetic disorder, I guess we are all related on some level. Nice to finally meet you.

BTW, I hope the steroid shot works on your shoulder. I didn't find much relief from it, which is why I opted for surgery. It did take almost 18 months to get all my range back and to be pain free, but now things are great. It is a very painful recovery the first few days. I was warned, but it may have been a bit worse than I expected. I had to sleep sitting in a chair for almost 2 weeks. Other than that, it was all good. I can play baseball again!!!

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Guest Liz Peters

Hi James

Thanks for the reassurances - sounds like we should be ok then.

My twin contacted the blood clinic yesterday - they told her they test for Functional (mine was 52, hers 45) and Manchester test for the Antigen (mine was 72, no records for Jo).

They did say that most of the others that turn out low usually have a reason - hrt, pregnancy, liver problems etc. I think we have given them something to think about regarding protein s anyway!

They told her that the new haematologist IS interested in seeing us together - I will be the guinea pig for the tests, as Jo is on Warfarin after having a dvt and 2 pe's. Jo has been told she would have to go onto injections for 6-10 weeks in order for her to be tested, so at least this way we can find out without her going through that for nothing. So hopefully everything will turn out ok and if so then Jo will be able to reduce the range she has to keep her INR at. At the moment she is between 3 and 4, and has a struggle to maintain that. She has just got a coaguchek too, as her veins have collapsed.

It will be great to have a definate decision made. We have told our Mum not to have her blood done yet, she is nearly 70 and we don't want her to have to have it done for no reason.

Anyway, thanks for this site - we have learnt a lot (the heamatologist wants any info we have found out too!) I will let you know at some point in the future how things turned out.

Take care everyone who is dealing with this disorder - I feel for you, having to live with it in your lives constantly.

Liz :D

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Guest Jo888

well i am in the dark about all this low protein s stuff.

i am told by a consultant haematologist that i have

low protein s thrombophilia, and now i am told that

i may not have because a result was sent back from

a manchester hospital a year ago, but no one can

find the result from this, which may have said that

the result of one test was normal. i thought at least

3 things were tested, and if one was abnormal then

you had a certain type of low protein s. my mind is

not being put at rest by any replies as yet. as my

first dvt and pe were due to falling from a faulty

stool at work 2 years ago, and due to this i am starting

litigation, the correct diagnosis will have an immense

effect on the outcome of my case. i am taking warfarin

to keep an inr of 3-4 and it looks like i am wasting my

time in doing this, as only one test is abnormal. can

anyone shed any light on this as i feel like giving up,

stopping warfarin, no more blood tests, coz i have

struggled for months to get coaguchek strips, and then

i may have my life back instead of constantly being

at the doctors surgery, for blood tests on my one

remaining vein as the rest have collapsed. this is no

way to live and is making me feel very low.

please help if you can, jo :D

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It is possible to have your tests carried out privately. Besides the obvious blood tests it is possible to have a DNA profile carried out. I'm not sure if the DNA profile is any more accurate than the blood test although I understand it would cost you several hundred dollars. I don't know who would do the test for you but I've seen it mentioned on the web.

As far as your claim goes I don't know whether your pre-disposition would have any bearing. For example on my health insurance I was covered for treatment of a kidney stone even though it became a lot more complicated because of my medical history. DVT is a pre-existing condition on my policy so I can't claim if the cause is thrombosis related but if the cause it something else it doesn't matter if the thrombosis comes afterwards. So, if you have a valid claim for your injury under normal circumstances I don't think it would make much difference if it turned out to be more complicated or expensive to treat because of a pre-disposition. If you were aware of a pre-existing condition and failed to disclose it to your employer they could say they aren't liable because they were denied the opportunity to accommodate looking after your condition... its a standard tactic used in disability claims and I'm sure your lawyer can advise you further.

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