1. < Blood Cancers & Disorders

Is there a useful test for Leiden Factor V?

Posted by zrbradonkey @zrbradonkey, May 4 6:15am

In 1991 I got a pulmonary emolism. I saved my own life by understanding that my doctor who had si
mply dismissed my description of the pain I had just described to her as "nothing to worry about". I found another doctor who sent to a talented phlebotomist for full blood panel . He found that I had Leiden Factor Five. I went back my new doctor who sent me immediately to Georgetown University Hospital for immediate surgery. They discovered a large bit benign endometrial tumor in my groin pressing fdown on my interior vinacava. They performed a long enormous surgery removing the tumor and then scraping out all the endometrial fibers clinging to my entire bowel and abdominal cavity. They removed the pulmonary emolism Then they redraped me and immediately another surgeon placed a Greenfield Filter somewhere in my upper right chest. That was a six hour surgery altogether. I remained in hospital until I was able to walk again. My full recovery took six months. The surgery included a full hysterectomy and so I immediately began recovering from the full hysterectomy with all the related symptoms of menopause. They advised me to take a Baby Aspirin every day for the rest of my life. Around eight months after the surgery I stopped taking the Baby Aspirin because it caused me a great deal of stomach pain and I thought by then I was safe to do so.
It is now 2024 and I am now 81 years old and have remained remarkably healthy by maintaining a very healthy diet and and exercising vigorously every day by walking 3 miles briskly every day. I now live in an assisted living facility and have developed a lump under my left knee. I have had a sonogram in the ER of the local hospital (now living in Easton Maryland). They determined that I have a Baker's Cyst under my left knee. I was sent to an orthopedic surgeon who in serted hydrocortisone In that knee to reduce pain.
I am now worried that I may have another small embolism as well under that same knee. The nurse in my retirement home is reluctant to believe that I have an embolism. This coming Monday I will call my private physician to set up an appointment to have a look at my knee and have a discussion about what to do next regarding the situation under my knee. I am naturally frightened about the possibility of a second embolism under my left knee. And not sure I should restart taking the Baby Aspirin before seeing my personal physician sometime late next week. Has anyone else had a similar experience?

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 13 12:02pm

The presence of Factor V Leiden is easily diagnosed with a laboratory (blood) test. The test looks at your DNA to see if you are making normal Factor V or the abnormal Factor V Leiden. It also identifies if you have one or two copies of the Factor V Leiden gene.

@zrbradonkey, it sounds like it has already been determined that you have Factor V Leiden and that your main concern is that you have an untreated blood clot. I'm glad that you made an appointment with your doctor who is familiar with your blood clotting issues. What did you find out? How are you doing?

REPLY
3 replies
zrbradonkey | @zrbradonkey | May 13 3:28pm

I have an appointment with a hematologist zThursday June 6. Will let you know. The lump under me has moved to the top of my knee. Seems odd. But maybe the vein damage from my pulmonary embolism in 1991 that went though that same knee is causing some irregularities in veins around that same knee?

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zrbradonkey | @zrbradonkey | May 13 3:38pm
In reply to @colleenyoung "The presence of Factor V Leiden is easily diagnosed with a laboratory (blood) test. The test..." + (show)
@colleenyoung

The presence of Factor V Leiden is easily diagnosed with a laboratory (blood) test. The test looks at your DNA to see if you are making normal Factor V or the abnormal Factor V Leiden. It also identifies if you have one or two copies of the Factor V Leiden gene.

@zrbradonkey, it sounds like it has already been determined that you have Factor V Leiden and that your main concern is that you have an untreated blood clot. I'm glad that you made an appointment with your doctor who is familiar with your blood clotting issues. What did you find out? How are you doing?

Jump to this post

I have an appt with a hematologist on June 6. The
current lump under my left knee has moved to top of that same kneecap.
Seems odd to me and it REALLY HURTS. I'm glad my primary physician decided
to proceed with full blood panel, scheduled for June 6. Kristina

REPLY
zrbradonkey | @zrbradonkey | May 14 5:16am
In reply to @colleenyoung "The presence of Factor V Leiden is easily diagnosed with a laboratory (blood) test. The test..." + (show)
@colleenyoung

The presence of Factor V Leiden is easily diagnosed with a laboratory (blood) test. The test looks at your DNA to see if you are making normal Factor V or the abnormal Factor V Leiden. It also identifies if you have one or two copies of the Factor V Leiden gene.

@zrbradonkey, it sounds like it has already been determined that you have Factor V Leiden and that your main concern is that you have an untreated blood clot. I'm glad that you made an appointment with your doctor who is familiar with your blood clotting issues. What did you find out? How are you doing?

Jump to this post

Still waiting to see hematologist on June 6. My knee is hurting a lot.
Waiting. Trying not to speculate to much. Too scary.

REPLY
jrw8580 | @jrw8580 | Oct 31 10:13am

I'm glad you got help in time. I'm a factor v from both parents. At 30 I had a dvt in my left leg. I've had one in my Lung and then even in my right leg. They can cause extreme pain and will also cause long lasting damage and pain. I'm 44 now and probably had roughly 5 or 6 blood clots. When in doubt please go to the ER, I didn't know how serious this is but it was explained to me that this can be extremely dangerous. I tale xarelto 20mg daily for life. So be ready for simple cuts to bleed a lot. You should also get you a bracelet that informs medics that you are on blood thinners. If you need someone to talk to about how living with it goes other than a medical professional telling you the scientific side goes, I'm an message away. Doctors only know the medical side not the emotional toll it takes on your daily life.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 31 2:42pm
In reply to @jrw8580 "I'm glad you got help in time. I'm a factor v from both parents. At 30..." + (show)
@jrw8580

I'm glad you got help in time. I'm a factor v from both parents. At 30 I had a dvt in my left leg. I've had one in my Lung and then even in my right leg. They can cause extreme pain and will also cause long lasting damage and pain. I'm 44 now and probably had roughly 5 or 6 blood clots. When in doubt please go to the ER, I didn't know how serious this is but it was explained to me that this can be extremely dangerous. I tale xarelto 20mg daily for life. So be ready for simple cuts to bleed a lot. You should also get you a bracelet that informs medics that you are on blood thinners. If you need someone to talk to about how living with it goes other than a medical professional telling you the scientific side goes, I'm an message away. Doctors only know the medical side not the emotional toll it takes on your daily life.

Jump to this post

Welcome to Connect, @jrw8580 Thank you for sharing your experience with having Leiden Factor V and for offering to answer questions for anyone with this condition that leaves you vulnerable to blood clots.

Having Factor V from both parents is a bit of a rarity. How were you diagnosed initially? Was it after your first blood clot at 30? Was anyone in your family aware that they had this condition prior to your symptoms?

REPLY
ageter | @ageter | Oct 31 8:32pm
In reply to @colleenyoung "The presence of Factor V Leiden is easily diagnosed with a laboratory (blood) test. The test..." + (show)
@colleenyoung

The presence of Factor V Leiden is easily diagnosed with a laboratory (blood) test. The test looks at your DNA to see if you are making normal Factor V or the abnormal Factor V Leiden. It also identifies if you have one or two copies of the Factor V Leiden gene.

@zrbradonkey, it sounds like it has already been determined that you have Factor V Leiden and that your main concern is that you have an untreated blood clot. I'm glad that you made an appointment with your doctor who is familiar with your blood clotting issues. What did you find out? How are you doing?

Jump to this post

I have had two different test for Factor V. The first came out negative. ( saying I didn't have it) The second and most recent saying that I do have it. Now currently on warfarin trying to keep from getting more clots. But for some reason no matter what I take I still end up with a clot. Have been to several Dr and specialist.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 6 5:32pm
In reply to @ageter "I have had two different test for Factor V. The first came out negative. ( saying..." + (show)
@ageter

I have had two different test for Factor V. The first came out negative. ( saying I didn't have it) The second and most recent saying that I do have it. Now currently on warfarin trying to keep from getting more clots. But for some reason no matter what I take I still end up with a clot. Have been to several Dr and specialist.

Jump to this post

@ageter, these are some of the treatments that are listed on Mayo Clinic's page here: https://www.mayoclinic.org/diseases-conditions/factor-v-leiden/diagnosis-treatment/drc-20372428

Have compression socks been suggested for you? Or leg wraps that inflate and deflate to keep blood moving in your legs? Are you able to stay active?

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