Newly diagnosed with coagulant factors

Hello @sherohio, I recently sat down with a physician at Mayo Clinic to discuss bleeding disorders in women and we talked about Factor V Leiden. You can read there here, https://connect.mayoclinic.org/newsfeed-post/clotting-disorders-factor-v-leiden-and-blood-clots/. There is an interesting part from our talk where Dr. Marshall says, “We do not actively treat clotting disorders, unless they have had a blood clot. What we do want to do, is council our patients about how to mitigate the other risk factors like smoking, weight management and living healthy lifestyles.”

Your situation is not necessarily a generic situation though as you mentioned you have other conditions like lupus as well. @sherohio, did your medical provider tell you that you had to be on daily blood thinner medication permanently or until your blood clot is resolved?

Interestingly enough, I was born with a rare genetic bleeding disorder as well, but the exact opposite of yourself. I was born with Hemophilia, which means my blood does not clot on its own and I am susceptible to excessive internal and external bleeding without regular treatments.

Thanks for your response. As I understand it, the lupus anti-coagulant factor is not the same as having lupus. It is an “acquired” factor, as opposed to Factor V Leiden which is inherited. In my case, it may have come from long term use of birth control pills. The other causes, as far as I know, do not apply to me.
I do have the portal vein (liver) blood clot and I have been told I will be on life long Warfarin as a result. There is no follow up scan scheduled by my hematologist because he said the Warfarin is required in cases like mine, and since the clot is contained in the liver, it’s presence is not the concern but rather my tendency to clot elsewhere and have it move to my lungs or brain.
I have finally resolved that this life long Warfarin is going to be me from now on, but my current problem is the issue of combining it with Celebrex to relieve the inflammation from my sciatica. If anyone has info about this I would be most grateful.

Thank you for educating me further on the lupus anti-coagulant and sharing more about yourself. While I am not a medical professional, I was able to find the following information from Mayo Clinic, https://www.mayoclinic.org/drugs-supplements/warfarin-oral-route/before-using/drg-20070945:

"Using this medicine (warfarin) with any of the following medicines is usually not recommended, but may be required in some cases. If both medicines are prescribed together, your doctor may change the dose or how often you use one or both of the medicines." Celebrex (Celecoxib) is listed on the list. It sounds like it is not recommended, but there are ways to manage your dosing if both are necessary. Have you had a chance to ask about working with your physician to find a level that is safe to use both?

No, he told me he was opposed to it, but at the time my pain would come and go, so, although I was disappointed, it didn’t seem to be super important. Now, however, the pain has ramped up and I fear I may need a more long term solution to my back pain. It has completely altered my activities and my ability to exercise. Based on your information I think I will make another appointment and go back to see him to discuss this information.

My doctor told me that nsaids are safe even though he know ive got a bleeding disorder but I am smart enough to know its not safe for me I have factor 2 and factor v leiden im sorry you went through all of that I also get back pain I took a back pain class once and it was led by an occupational therapist theres two different medical departments that could help there is the spine center and then theres the occupational therapist

Hello. I was diagnosed with factor v Leiden heterozygous back in 2021. I have been a wreck ever since.... I am doing my best to cope with it and even though I've had it my whole life and didn't know until I had a superficial clot, I seem to be constantly worried I'm going to get a pulmonary embolism.... I know, crazy... I just can't seem to stop worrying about it a pain I feel is it.

Sorry for the typo at the end there... should say 'if a pain '. Also I'm 40 years old.

Hi @dawn83 Often when we get a new diagnosis it can take over our focus and redefine who we are. Depending on the illness, every little ache, pain, twinge makes us think there’s a recurrence or a worsening of the condition when in reality, if we wait a couple hours we find it was nothing at all.
I think that’s what’s happening to you right now.

It’s so human nature to worry about “what if this happens?” But that type of thinking can such an energy drain and cause undue stress. It can rob you having a normal life. I’ve been there! So instead, it can help to start with “What if everything turns out alright?”

It also helps to learn a little more about your Factor V Leiden diagnosis and how you can live a perfectly normal life without worrying all the time. Knowledge is power. It can help you take control over your life instead of feeling like a potential victim to this blood clotting disorder.
Your doctor doesn’t have you on any blood thinners so they may feel your event with the superficial blood clot was a one-off situation. That doesn’t stop you from being worried about potential clots in the future.

There are some natural blood thinning foods, drinks and supplements you could looking into. It might mentally have you feeling a little more proactive instead of helpless. Though before taking any supplements it’s good to check with your doctor.

I thought this might be a good site for you about blood thinning foods.
https://www.medicalnewstoday.com/articles/322384

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These are two good sites to explain the Factor V Leiden mutation and treatments.

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https://www.stoptheclot.org/wp-content/uploads/2014/02/FactorVLeiden-lw.pdf

Do you know if this mutated gene came from one or both parents?

Thank you @loribmt . It came from one parent.