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Is anyone diagnosed with Protein S deficiency?

Posted by chelle23 @chelle23, Aug 5, 2023

I am a 56 year old female, was never sickly all my life. My mom passed away from congested heart failure and my two brothers has heart stents so due to family history I went and had a CT scan done in Jan 2023. The scan incidentally showed I have blood clots on the lower of my lungs. They also did a sonogram of my right leg and said the blood clot started above my calf. I did not have any chest pain or shortness of breath symptom so I was not aware I had blood clots.. The only symptom I have was tingling in my legs and muscle cramps which I thought had to do with menopause.. I was exercising daily, like jump ropes , walking and aerobics.
I am currently on Eliquis blood thinner.
I am negative for factor V Leiden my protein is level is 56 and normal is 60 -140.. The hematologist is not sure why I have the blood clots and think that it is hereditary but not quite sure.
I passed my lung function test but the pressure in my lung was a little elevated.
I was just wondering if anyone else on here is living with protein S deficiency and how can I increase the level?.

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sbt19 | @sbt19 | Aug 6, 2023

Hi Sheila,
My husband at age 43 had a large DVT in his upper right leg. He had been driving back and forth to his grandmother's house (1 1/2 hour drive each way) for several days because she was dying. The vascular doctor said he tested positive for Protein S deficiency and that it was hereditary (his father had had several blood clots during his lifetime). The doctor said they only recently were able to test for it so his father probably had it too. He told us there was no cure, but taking Coumadin (the only blood thinner available at the time--1994) for the rest of his life would prevent any more blood clots due to the condition. It was somewhat of a pain because of the monthly protime testing. As well, he never had a consistent protime so the doctor was always adjusting his dose of Coumadin. Fortunately, the new blood thinners came out around 2005 and my husband was switched to Xarelto, which required no protime testing. As far as I know, there is no way to increase your protein S. It is a metabolic process that does not work correctly in your body due to a hereditary condition. My husband never had another blood clot until he had covid in 2022, so if you keep taking the Eliquis, you should be okay.

REPLY
1 reply
chelle23 | @chelle23 | Aug 9, 2023
In reply to @sbt19 "Hi Sheila, My husband at age 43 had a large DVT in his upper right leg...." + (show)
@sbt19

Hi Sheila,
My husband at age 43 had a large DVT in his upper right leg. He had been driving back and forth to his grandmother's house (1 1/2 hour drive each way) for several days because she was dying. The vascular doctor said he tested positive for Protein S deficiency and that it was hereditary (his father had had several blood clots during his lifetime). The doctor said they only recently were able to test for it so his father probably had it too. He told us there was no cure, but taking Coumadin (the only blood thinner available at the time--1994) for the rest of his life would prevent any more blood clots due to the condition. It was somewhat of a pain because of the monthly protime testing. As well, he never had a consistent protime so the doctor was always adjusting his dose of Coumadin. Fortunately, the new blood thinners came out around 2005 and my husband was switched to Xarelto, which required no protime testing. As far as I know, there is no way to increase your protein S. It is a metabolic process that does not work correctly in your body due to a hereditary condition. My husband never had another blood clot until he had covid in 2022, so if you keep taking the Eliquis, you should be okay.

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Thank you so much for your feedback explaining it so well. It was very helpful for me to hear that it is a metabolic process and I now realize that I have no control over it..The hematologist did not even explain it that clearly.... Thanks again

REPLY
patlori | @patlori | Aug 16, 2023

I also deal with low protein s. In 2017 I ended up hospitalized with dvt PE blood clots for no apparent reason. My father, sister, and brother all had strokes from blood clots years earlier. Luckily I did not have a stroke. The hemotologist figures it has to be hereditary. I did the hereditary tests, but did not show positive for any hereditary tests that they have as of now. The only odd thing found was single digit protein s and protein c. I was on Coumadin until my body got these back up to normal, about a year. Then I was taken off it. I went six years, and ended up with the blood clots again. My protein levels were in the low end of normal this time. Coumadin for life now. My family had not had any genetic testing or protein testing done with their clots, but we were all in our late 50's when we had the clots. My doctor said that maybe someday they will have more testing available to find the hereditary link. I sure hope so.

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