Acquired factor V deficiency with no known cause

Welcome to Connect, @gracefilby. Factor V is a protein made in your liver that is an important step in the blood clotting process. If you don’t have enough of this protein, it can interfere with your blood’s ability to clot properly if you’re injured or after surgery. It’s not the same as the inherited factor V Leiden mutation which you may have come across in your searching.

Below is a link to a good informational article which helps explains Factor V deficiency. It also goes on to discuss tests that are used to diagnose this condition and potential causes such as certain medications, underlying medical conditions, or an autoimmune reaction.

From the information I’ve found there’s nothing you can do personally to increase the Factor V protein deficiency. But if necessary, after surgery or prolonged bleeding, patients can be treated with infusions of fresh frozen plasma (FFP) and blood platelets.

Is this a fairly new condition for you?

Yes, I had hip surgery 3 year ago and it has showed up in my INR and they have done more test and my factor V is at 4%. I’m worried.

What does your hematologist say about your factor V number? Are you having any serious bleeding incidents like prolonged blood loss from a nose bleed or cut?

No, bleeding and they couldn’t tell me, said, “this is one for the textbooks”. But to watch for bleeding and tell them if I need an any procedures. I wonder if it will correct itself? They didn’t want me to go to Florida for the winter because I live near the Cleveland clinic in Cleveland.

I don’t understand why you can’t travel to Florida. If you’re not having any ongoing issues, all your other bloodwork is fine and don’t require treatment except if you have surgery, you should be able to travel. This doesn’t sound like an condition where you have to live in fear.

There are plenty of medical facilities in FL who accept out of town patients. I go to a clinic near where we stay in FL. They have a walk-in lab when I need blood work. My doctor at Mayo sends orders via my portal, I print out the orders and take it to the lab. There’s never an issue. Is this something that might work for you?

I need a thrombograph blood test and I will have to find someplace in Florida who can do this blood test, can you help with that. I’m in Stuart, florida. They say all labs don’t do this test. Thanks so much for your help

@gracefilby There is a Cleveland Clinic-Florida, in Stuart, Florida. You could talk to your coordinator at your Cleveland clinic to see if their counterpart in Florida is able to run the same test. That way you could still be down there and have your labs run. https://my.clevelandclinic.org/florida/locations/martin-north-hospital
At one point I needed specific tests which my lab in Florida wasn’t able to run. Mayo provided me with specialty shipping boxes so that the lab in FL could send the samples back to Mayo for testing. This may be another option for you.
This gives you a couple options worth trying. The winters are long and cold in Ohio. ☺️ Florida is calling…

Thank you so much. You have been a great encouragement. Thank you

I know what it’s like to get a diagnosis that can ‘put your life on hold’. But it doesn’t need to define you. Try not to live with the thoughts of ‘what if’…just live! “If” something happens then you can deal with it. But going through life wondering what if this happens, or what if that happens just robs us of precious time. ☺️ I hope you can make arrangements that allow you to get back to your regular routine and enjoy a warmer climate for the winter. Hugs!