What is the INR?

While taking Warfarin the patient will need to get their INR checked regularly. INR is short for International Normalized Ratio. This simple blood test checks to see how long it takes the blood to clot and puts that into a formula to report the INR. The typical person who does not take Warfarin should be at a 1.o. Most doctors consider 2.0 to  2.5 to be therapeutic. Due to my high risk of clotting, I am forced to keep my blood even thinner- a 3.5. Any lower than a 3.0 and I will get a clot without fail. Many times even being at 3.5 I still clot, though they usually break up and go away much quicker.

Until recently the blood test required a trip to the lab, but many doctors can now do the test right in their office using a machine that resembles what a diabetic uses to check their blood. There are no needles involved, only a small stick to the fingertip, and the results are instant.

Many factors can influence your INR, such as diet, sleeping habits, etc. Due to these fluctuations, many people do what we FLVers call the "Coumadin dance", where their INR jumps dramatically in short periods of time.

For these patients, doctors can prescribe a home testing unit. However, most doctors don't recommend this because the margin for error is too great and results are not as accurate. Since the patient's INR is a life or death matter, literally, it is best to have it checked by a professional in a controlled office setting.

Medical Alert Information

Anyone with FVL, especially those on blood thinners, should wear medical alert tags and carry a card in their wallet or purse. The information is vital to those trying to save your life if an emergency should occur.

For those of you not familiar with how medical alert tags work, let me explain. Suppose you are in a traffic accident and knocked unconscious. When the paramedics arrive, one of the first things they will do is check around your neck, wrists, and ankles to see if you are wearing a medical alert tag. Then, if possible and practical, they will check your wallet or purse to see if there is any information pertaining to any medical conditions they should be aware of.

If you are on blood thinners, it is vital they are aware of this. Extra steps and monitoring might be needed to stop or prevent excessive bleeding. Even if you aren't on blood thinners, if they must perform surgery, they should know to keep an eye on signs of clotting after the procedure.

Also, by knowing you have Factor V Leiden, the medical professionals will more than likely run additional tests to rule out any unusual problems. If forces them to think outside the box and not just throw out a typical diagnosis.

An example would be a severe headache normally being diagnosed as a migraine or sinus infection, but if they know you have FVL they might test to see if you have a clot. Chest pains written off as anxiety attacks or indigestion would probably be looked at closer to make sure its not a PE.

I won't mention specific medical alert companies here, everyone should do their own due diligence and select a company that provides the services they need at prices they can afford. However, I will say this- gone are the days of the ugly, thick, heavy, cumbersome bracelets and necklaces of the past. Of course you can still get that style, its the kind I wear, but medical alert tags now come in the form of watches and attractive jewelry. Most are also very discreet but easily recognized by medical personnel.

Because of the appearance of the jewelry, as well as privacy concerns, many people are reluctant to wear medical alert tags. But remember it is in your best interest and can literally save your life.

Warfarin vs Vitamin K

Many foods and medications react to one another with negative consequences. One of the worst for people on blood thinners is vitamin K.

Vitamin K, literally named after the German word "koagulation", is needed to help the blood clot. Since blood thinners help prevent clotting, you can easily see the conflict.

People on blood thinners should limit their intake of vitamin K. However, "quantity" is not as vital as "consistency". As long as you don't intake too much, and keep what you do intake consistent, your medicine level can be adjusted to fit your diet and lifestyle.

What are the Signs and Symptoms of a DVT?

Now that you've learned more about Factor V Leiden and blood clots, you might be looking into your past and wondering if you've ever had a blood clot, or how would you recognize if you got one in the future.

Clots can appear anywhere, but most DVTs are located in the calf area of the lower leg. Another common spot, though must less frequent, is in the upper arm.

Signs to watch out for include:

• Swelling- the affected area will swell significantly
• Redness- the affected area will turn red or light pink
• Tenderness- the affected area will be tender to the touch, especially if "brushed"
• Fever (elevated temperature)- the affected area will become warmer than normal
• Pain when moving- when trying to move, the affected area will ache tremendously

When it comes to blood clots, nothing is absolute. The only way to confirm that you have a clot is to have it examined, since many other things can cause these same symptoms. The most common approach is to head to radiology for an ultrasound. An ultrasound has the ability to measure blood flow in the veins. If the blood flow is abnormal or restricted, they can accurately diagnose a blood clot. And if the clot is facing in the right direction, they will be able to tell if its a boy or a girl (joke!).

One bit of bad news for those that have recurring clots is the fact that ultrasounds cannot detect whether a clot is newly formed or simply vein damage from previous clotting experiences. Remember- the ultrasound only measures blood flow, it doesn't actually see a clot. It's the same theory as a black hole in space. No one can see it, but by watching the environment and reaction of things around it, they know its there.

Therefore, if you are like me and have significant vein damage, your blood will always appear to be restricted, and therefore you will be diagnosed with a clot even though you might not have a newly formed clot. In this circumstance the treatment is the same and its off to the hospital you go for the Heparin drip. The doctors will always (should) err on the side of caution.

My Email About FVL and Stroke

This is what I sent our support group. Feel free to join and jump into the conversation, or post a response here.

"In an article Penny posted from the University of Illinois, I read once again that:

"At this time, the data available do not suggest any role between factor V Leiden and arterial thrombosis (stroke, heart attack)."

We discussed this a while back, and I'm wondering if anyone has any additional input, as well as have talked to their doctor about this, to see if they feel it holds any merit.

Honestly, my personal opinion is that it is incorrect to the point of negligence. Anyone with FVL reading this article might not take the necessary precautions to prevent a heart attack or stroke, because they might not believe their chances of one of those two things occurring increases.

If one believes this article, then it would be stated that they believe with all of the DVTs I had in life, plus the black toes, plus the swollen legs, etc., are in no way related whatsoever to my stroke. I just don't believe that. Are they saying it was just a coincidence, that someone with FVL and a major history of clotting, just happened to have a stroke at the age of 32?

Over and over again in this group we state that venous clots are different than arterial clots, and must be treated differently. I understand that, and most people who have it explained to them understand as well. However, dozens of us here have had strokes, and to my knowledge each and every one of us has been told that our chances of that happening are increased because of the FVL.

If this is not the general belief in the medical field, then why would they put someone on Coumadin for life after they have had a stroke? Why not just aspirin? Why put them on anything at all, just because they test positive for FVL? Unless they have had a PE or something? If there is no correlation, then the warfarin isn't needed.

FVL causes the blood to clot more, increasing the risks of the clot doing damage. I can't believe that with all of these dozens, if not thousands, of clots floating around my body could not cause a stroke. And my clotting, "super clotting" as they say, is directly related to my FVL.

So how can that article say that? Can someone please explain?"

FDA Finds Trigger in Heparin Deaths?

The United States FDA has traced a contaminant in the blood thinning drug Heparin to China and ten other countries, including the United States. They believe this contamination could have resulted in dozens of deaths, but no definitive proof has been given. Other countries are skeptical, and both sides are hoping tests over the next few weeks will provide more answers.

The FDA states the cause is Heparin containing oversulfated chondroitin sulfate. The allergic reactions can cause nausea, vomiting, shortness of breath, and a severe drop in blood pressure. The drop in blood pressure is the most common side effect.

Below is a list of countries known to have the contaminated Heparin:

China
United States
Australia
Canada
Denmark
France
Italy
Japan
Netherlands
New Zealand
Germany

Most of the information we are reading online discusses deaths since January 2007, but tonight on CSPAN the date was March 2006 for when the first deaths started being reported.

If you have been on Heparin in the last two years or so, it wouldn't hurt to discuss the situation with your doctor.

Thrombocythemia

Thrombocythemia (primary thrombocythemia) is a disorder in which excess platelets are produced, leading to abnormal blood clotting or bleeding.

Platelets (thrombocytes) are normally produced in the bone marrow by cells called megakaryocytes. In thrombocythemia, megakaryocytes increase in number and produce too many platelets.

Thrombocythemia is rare, affecting about 2 to 3 of 100,000 people. It usually occurs in people older than 50 and more frequently in women. The cause of thrombocythemia is unknown.

Often, thrombocythemia does not produce symptoms. However, an excess of platelets can cause blood clots to form spontaneously, blocking the flow of blood through blood vessels, especially smaller ones. Older people with thrombocythemia are much more likely to form clots than are younger people.

Symptoms are due to the blockage of blood vessels and may include tingling and other abnormal sensations in the hands and feet (paresthesias), cold fingertips, headaches, weakness, and dizziness. Bleeding, usually mild, may occur, often consisting of nosebleeds, easy bruising, slight oozing from the gums, or bleeding in the digestive tract. The spleen and liver may enlarge.

A doctor makes a diagnosis of thrombocythemia on the basis of the person's symptoms or after finding increased platelets during routine screening of the blood. Blood tests may be used to confirm the diagnosis. In thrombocythemia, the platelet count is usually 2 to 4 times higher than normal. In addition, a microscopic examination of the blood reveals abnormally large platelets, clumps of platelets, and fragments of megakaryocytes.

To distinguish primary thrombocythemia, whose cause is unknown, from secondary thrombocythemia, which has a known cause, a doctor looks for signs of other conditions that could increase the platelet count. Removal of a sample of bone marrow for examination under a microscope (bone marrow biopsy (see Symptoms and Diagnosis of Blood Disorders: Bone Marrow Examination) is sometimes helpful and can exclude chronic myelocytic leukemia as a cause of an increased platelet count.

Thrombocythemia may require treatment with a drug that decreases platelet production. Such drugs include hydroxyurea, anagrelide, and interferon-alpha. Treatment with one of these drugs is typically started when the platelet count becomes exceedingly high or when bleeding or clotting complications develop. The age of the person, the other risks present, and previous history of thrombosis determine the need for such treatment. The drug is continued until the platelet count falls into a safe range. The dose must be adjusted to maintain an adequate number of platelets and other circulating cells. Small doses of aspirin, which makes platelets less sticky and impairs clotting, may also be used.

If drug treatment does not slow platelet production quickly enough, it may be combined with or replaced by plateletpheresis, a procedure reserved for emergency situations. In this procedure, blood is withdrawn, platelets are removed from it, and the platelet-depleted blood is returned to the person.

Factor V Leiden vs Factor V Deficiency

Many times people with FVL will mistakenly refer to the disorder as "Factor V Deficiency". This is an extremely dangerous mistake to make and could possibly be fatal. There is a big difference between the two. Simply put, FVL is blood clotting disorder, Factor V Deficiency is a bleeding disorder. They are total opposites and should be treated differently.

The Factor V Deficiency was first recognized in 1944 and affects men and women equally. The role of the factor V protein is to be a catalyst or “accelerator” in the process by which prothrombin is converted to thrombin. People with the deficiency however, are prone to nose and mouth bleeding, and bruising. Newborns are also more prone to head bleeds and joint bleeding as well.

As you can see, the symptoms, and therefore the treatments, for the two disorders are just the opposite. The common "factor v" in each in no way means they are related, beyond specifying the particular mutated gene.

Controlling Complications of FVL

There is not a cure for Factor V Leiden, but once you are diagnosed there are precautions and treatments you can take to minimize your risks of complications. These treatments vary greatly from individual to individual and are based on your medical history, future risk factors, and current condition.

The typical treatment is to take a daily dose of Warfarin. Many people are more familiar with the brand name of this drug- Coumadin. Warfarin is a drug that thins your blood and therefore helps prevents clots from forming and lodging in the veins. It is taken orally and usually advised by your doctor to take it at night before going to bed. Sometimes your daily dose will vary. For example, you might take 7.5 mg every other day, rotating with 5 mg on the other days. Your doctor will prescribe whatever it takes to keep your INR steady.

Another blood thinner, Lovenox, is used frequently but not typically for long term treatment. Instead of taking it orally, like Warfarin, Lovenox is injected, usually into the stomach next to the belly button. While the pain is minimal, it does sting, and tends to leave horrible black, brown, and green bruises in the area of the injections. Lovenox comes pre-measured in the syringes, all you have to do it remove the cap, jab, squeeze, and scream. Most pharmacies will provide you with a biohazard waste container to dispose of the needles. When its full you just return it to your doctor's office or pharmacy for disposal.

Lovenox goes to work quickly and disappears from the system just as fast. This makes it the perfect replacement for Warfarin when someone must have surgery and go off their blood thinner. Typically the Warfarin will be stopped five days before surgery and replaced by two daily injections of Lovenox. The day before the surgery the morning dose can be taken, but the evening dose will be skipped. After the procedure, Lovenox will be started again as soon as the danger of bleeding passes, and will continue to be used until the patients INR is back up to a therapeutic level (normally three to five days).

Many people with FVL that have had complications are put on blood thinners for life. While there are risks involved, as with any drug, the risks don't come close to comparing what could happen without it. I can tell you first hand that a stroke is not fun, it is painful and can do horrible damage. Others in our support group who have had PEs will say the same about them.

For patients that have never had complications, Warfarin and other blood thinners can be used temporarily after the patient has experienced one or more risk factors for a clot. An example would be a patient put on Warfarin for 90 days after having surgery, or taking Lovenox injections a few days before and after an international flight.

People taking Warfarin for life hope that better medications will one day become available. How nice it would be to be able to take a pill once a month instead of daily. Or to have a medication that you could take daily that wouldn't require regular blood tests or constant oversight by a doctor.

The side effects of Warfarin are minimal. Of course there is the chance of excessive or internal bleeding. Also, fatigue and hair loss are frequently associated with its use and the impact increases as your INR count goes up. For me, I can usually judge where my INR is at by how my bad clotting leg looks and feels, how easy it is to shave, and how exhausted I feel when doing any sort of physical activity. Other side effects include the possibility of liver problems, low blood pressure, swelling, low red blood cells, fever, rash, and paleness.

Genetic Discrimination Bill

The Senate on Thursday passed the Genetic Information Nondiscrimination Act, with 95 vote for, and 0 against. This act will protect people who learn through genetic testing that they might be susceptible to devastating diseases from losing their jobs and health insurance.

The bill bars health insurance companies from using genetic testing information to set premiums or determine enrollment eligibility. However, it does not prevent them from using the actual diseases to set premiums or determine enrollment.

This is wonderful news for individuals with Factor V Leiden. In our support group, we have already had a few members be denied health insurance because they tested positive for FVL. And many members have opted not to have their children tested because of such fears. And the fears are legitimate. Not only are they worried they will be denied health coverage, like some members have had happen, but that employers will also use the testing to discriminate in hiring. A Texas railroad has already done this in the hopes of shirking responsibility for employees who complained of carpal tunnel syndrome.

This bill has been passed twice before, once in 2003 and once in 2005, but both times it was stalled in the House. Its also seen its share of hostility in the Senate.

Hopefully our respectable representatives will be more for the working class American and less dictated by the powerful insurance lobbyists this time around. But sadly, I know where I'd put my money if I was a gambling man.

Compression Stockings

Many people who have recurring DVTs or other issues with the veins in their lower legs will have compression stockings recommended to them by their doctor. Compression stockings fit tight around the ankle and loosen up slightly as it gets higher, usually going all the way to the upper thigh. Compression stockings help circulate the blood in the legs and prevent clots from occurring.

Even with all their benefits, compression stockings are not for everyone. For one, they are extremely uncomfortable and difficult to wear for long periods at a time. They are hot, usually itch, and cut into the skin around the edges.

A good compression stocking will do just as the name implies- "compress". Which by definition is as unpleasant as a wasp sting. Toss in someone like me with hairy legs, and you can imagine the discomfort.

However, not wearing it, even for a short period, counteracts the good that it would provide. Therefore, most people who don't wear them exactly as they should don't usually wear them at all. Most doctors will tell their patients to put it on when they wake up, before they ever get out of bed.

Also, compression stockings a lot of times are not recommended for someone who continually has clots in their legs. The fear is the stocking itself will cause the blood clot(s) to rise and cause severe problems. I happen to be one of these people.

For those that wear the stockings, momentous strides have been made recently in making them more comfortable and less of an eyesore. Most stockings are now available in a variety of colors and styles and look as regular as typical stockings.

Pregnancy & Factor V Leiden

After they become pregnant, many women find out they have FVL or Pregnancy Aquired Thrombophilia. When they are given this diagnosis, there are many questions and fears that come to mind-

Does having FVL automatically make this a high risk pregnancy?

What if I'm put on Lovenox shots? How do I stick myself in the stomach?

Could FVL contribute to a lost pregnancy?

For pregnant women who join our support group, or members of our group who become pregnant, we usually recommend they join the FVL-PG support group.

In existence since 1999, this group provides support and information for women who have FVL and are pregnant, and never have we had any negative feedback about the messages or management.

Factor V Leiden Online Support Group

After being diagnosed with Factor V Leiden, I began to research the disorder online. While I was relieved to finally have a diagnosis of why I kept clotting so much, it was still very scary to learn it was a disorder that would affect me for the rest of my life. I wanted to find out as much as I could about it, especially after being misdiagnosed so many times in the past. Never again would I simply rely on the doctors. I would do my own research and help manage my care.

But where would I turn? At that time there wasn't a lot of information available, and what was out there wasn't nearly as detailed as what I wanted, nor was there a good way to ask questions and get feedback from people like me, the ones who have it. So I began to look to other places besides websites, and that is how I stumbled upon the Yahoo support group Becky started a few years earlier. At the time it was called LeidenFactorVSupport.

The group sat dormant for a while, but as it began to pick up I became an active member. I enjoyed the fact that it was very interactive. I could ask questions and get responses from people who had the answers because they had already been through it. I could get different opinions on treatments from regular folks just like myself. And most importantly, it was a place where I could post my fears and anxieties and people would take a moment to just tell me it would be okay and they had the same feelings as I was experiencing.

Since I was staying at home and recovering from my stroke, I had all the time in the world to work on the group, so Becky asked me if I would help as a moderator. Her time was becoming more limited and she needed help moderating messages and adding new members. I told her I would love to.

Shortly thereafter, Becky needed to step away from the group and asked me if I'd be interested in taking it over completely. Since the group had been so helpful to me, and because I had a vision of what it could become, once again I affirmed that I would be glad to help her out.

Over the years I've implemented a lot of changes. We've added some additional moderators, changed how messages are distributed, added new welcome messages, updated the links, and more. We've even changed the name to make it less confusing- FactorVLeidenSupport. And the group has continued to grow at a steady pace.

Now over nine years old and with nearly 1,000 members from every country and walk of life you can imagine, we still try to support one another just as we did when it was 15 members.

If you or someone you know has FVL and you are looking for a place to post your questions, find some friends, share your fears, and find out more information, then we hope our group will be for you. Click below to join, we'd love to have you.

Click to join Factorvleidensupport

What is "Coagulation"?

Coagulation is the blood's natural tendency to plug an injured blood vessel to stop bleeding. It does this by coagulating and causing clots to form. Blood clots are made up of blood cells and fibrin strands, which work together to keep you from bleeding to death even from the most minute cut.

When you are injured, blood flows to the area and from the injured vessels. After just a moment, the body begins the clotting process and platelets gather to the site and start sticking together to form a type of plug. After the platelets are in place, the fibrin forms to create a stronger bond and clot.

With most people clots are naturally formed then reabsorbed by the body. They pose no significant risks. However, when they form inside of the walls of arteries and veins, they can cut off blood flow to parts of the body and cause things such as strokes, heart attacks, PEs, and other circulatory problems.

People with FVL have blood that hyper coagulates. That is why we must take anticoagulants and keep our blood thin, flowing, and clot free.

Relieving Discomfort in a "Clot Leg"

If you have suffered from DVTs, especially in your lower leg, there are several ways to help the swelling go down and to return color to your leg.

As discussed in an earlier post, one of the best ways is to swim. But what if you are in an area with no pool, or the weather prevents you from swimming regularly? Or maybe you don't know how to swim. If so, there is another wonderful way.

Turn on the hot water in the bath, then lay down on your back. Put your foot and leg under the running water for approximately two minutes, then move it over and put your foot on the wall as high as you can and elevate your leg for approximately two more minutes. Then put it back under the water.

For me, about 15 to 20 minutes of this ritual will usually do the trick. Normally when the hot water starts running low, I know its time to get out.

This will usually keep my leg white and get rid of the swelling for at least a few hours. It doesn't last long, but just that little bit of relief will either let me walk around better that day, or sleep better at night.

Does Aspirin Therapy Prevent DVTs?

One question that is consistently asked by new members of the Factor V Leiden support group is "Does taking aspirin, Plavix, or other related drugs help prevent DVTs?".

The answer is NO, it does NOT do anything to prevent DVTs. Aspirin is effective in preventing arterial clots, but has no effect in preventing venous clots (DVT = Deep VEIN Thrombosis). Aspirin also does not affect your INR.

Venous clots are mostly made up of proteins, whereas arterial clots are due to platelets. If you have Factor V Leiden and DVTs, you need a medication such as Lovenox or Warfarin to prevent those specific kind of clots.

If your doctor tells you aspirin will prevent DVTs, and many do, get a second opinion or go see a specialist such as a hematologist. Of course, don't stop taking aspirin if your doctor prescribes it because their intentions might be to stop arterial clotting for whatever reasons. Arterial clots can cause heart attacks and strokes.

But realize aspirin will not prevent you from getting DVTs or having a PE, or stroke due to a DVT clot.

National Alliance for Thrombosis and Thrombophilia

Tom Hogan, one of our support group's long time members, is the Secretary of The National Alliance for Thrombosis and Thrombophilia (NATT). NATT is made up of patients who have clotting disorders, as well as health care providers. Their mission is to help prevent, diagnose, and treat thrombosis and thrombophilia through research, education, support and advocacy.

To learn more about NATT, visit their website here. To make a donation to NATT, click here.

DNAdirect Clinical Genetic Testing Online

While researching about FVL tonight, I stumbled across an interesting website.

DNAdirect will do clinical genetic testing for FVL for $380.

I have never used this service and don't know anyone who has, so I am unable to recommend them or discount their results. But, if you are interested in finding out more, here is a link to their website:

DNAdirect

What is Factor V Leiden?

Factor V Leiden (FVL for short) is a hereditary genetic disorder that causes the blood to clot more than it should. While FVL in itself is harmless, it significantly increases the chances of life threatening complications such as deep vein thrombosis (DVT), strokes (CVA), heart attacks, and pulmonary embolisms (PE). In women it also increases the chances of having miscarriages.

Factor V Leiden affects 4 to 5 percent of Caucasians but only 1 percent of blacks. And even though it affects such a large population, many people live their entire lives never knowing they have it, or they will know yet it will never have any negative impact.

Since FVL is a hereditary disorder, people with it are considered to be heterozygous (one good gene and one bad) or homozygous (a bad gene from both parents). Homozygous people are much more likely to have complications due to FVL. But even for heterozygous individuals, chances are significantly increased when other risk factors for clotting are applied, such as smoking, obesity, surgery, birth control pills, air travel, etc.

My hematologist explains it like this- People with FVL fall onto a scale from 1 to 100. A person without FVL would be a 1 and have minimal risk of clotting Heterozygous people rank a 25. They are at minimal risk of clotting but should take precautions if they have an invasive surgery or other risk factors. Being homozygous increases a person's rank to between 50 and 75. These individuals have a high risk of clotting and should be closely monitored by a doctor when other risk factors are present.

My doctor labeled me at a 125..... way off the chart. I unfortunately have reoccurring DVTs and have had one, possibly more, CVAs since I was 32. My first DVT was when I was 18 years old.