I'm a mutant! But not the cool kind . . .

Last December, I was hospitalized two weeks for bilateral pulmonary embolism. They tell me I almost died but because of my young age (39), it helped me to pull through. I was on Coumadin for six months and then taken off. Whether I’d have to return to it depended on blood tests. Well, the blood tests determined that I have some kind of genetic mutation that causes my blood to clot abnormally. Leave it to me not to have a cool mutation, like being able to see through brick walls or burn things with my eyes. I also have to take rat poison to live (which is what Coumadin is) which makes me sound like some kind of supervillain in a comic book.

So apart from the jokes to lift my depressed spirits, I’m not really keen on having to be on blood thinners for life. But I’m probably more unhappy about the fact that I could get blood clots, too, if I don’t take them.

Due to the magic of Google, I’ve learned about countless people who have numerous side effects due to Coumadin. While doctors say such side effects cannot be caused by Coumadin, nevertheless no one can really discount what a patient goes through. However, whether these adverse effects are imagined or real depends is subjective, too, unless there are specific quantitative results to measure. For example, it’s hard to discount a hundred people who all can show you that they’ve gained fifty pounds in two weeks. However, those who talk about memory and hair loss may just be imagining it. But who’s to say that it can’t happen.

My doctor told me that he’s never noticed any weight gain in any of his patients taking this stuff. And I believe him. But I also figure that he’s not really looking for that, since his job is to concentrate on the blood. And even though I’m not an expert in chemistry or biology, I don’t know how a blood thinning medication would cause weight gain anyway.

The last thing I need to be doing now is going on Google and reading about patients that I’ve never met who are saying that everything that’s ever gone wrong since they’ve been on this or that drug is due to that drug. Maybe some of them or right but I’m probably just making it worse by thinking too much about it. But what else can I do?

If there’s anyone here who knows about this stuff (either professionally or as a patient), I’d appreciate feedback.

So does your blood clot too much or not enough?
Are “The CLOTTER!” or “the BLEEDER!”

It clots too much, Coumadin keeps it thinner and less ‘sticky’.

This is a rough diagnosis Tony, but I’m very glad you lived! I’m not familiar with long term use of Warfarin etc… Maybe that’s good, anyone I know who takes it doesn’t have side effects worth complaining about.

My grandmother was on blood thinners for over 20 years. The only side effect we noticed was surviving until age 86 rather than dying much sooner. “Bad circulation” (in her case, a combo of low BP and too much clotting) was her main health issue through all her life.

So you’re like wolverine! Instant “healing”, kind of.

You’ve got mutant superpowers.

There was this Cracked.com article about lame Batman supervillains. I’m pretty sure I fit in there somewhere! :smiley:

Thanks for the replies so far. I hope they keep coming. It already makes me feel better. All I’ve been reading so far from some sites are from the poor people who have been gaining weight and unable to take it off. Damned if you do, damned if you don’t. It’s been really depressing me all day today after my doctor called me and told me to see him on Monday to discuss the medication I need to take and I’ve gone online to read these horror stories. But that’s the way the internet works: it’s both a blessing and a curse. I mean, if you have a bad result, you’ll be more likely to go on a forum and complain. If it goes okay, you won’t and people like me won’t know about it.

And you didn’t notice any significant weight gain? Also, there were no significant complaints, besides from having routine blood checks?

I definitely can live with that. I wish it wasn’t such a hot day. I could get away from Google for a while and go for a walk.

Have you considered working for Orkin or Terminix? You might be able to get an employee discount and save on medical costs.


It’s Friday. I’ll be here all week.

How do you get real science and not anecdotes? I assume that is what you are asking. I just typed this into google:

science based medicine coumadin

and got many hits, many from the appropriately named “sciencebasedmedicine.org”. Check these out to learn what the real science is about coumadin.


My Dad was on Warfarin for about 15 years. If I had any advice to offer, it’d be to memorize the dosage amount that your doctor prescribes and NEVER vary from it. Check your prescription label as well to make sure the pharmacist doesn’t screw up and give you a higher dose.

Short story: My dad had his regular appt with the doc, but the doc wasn’t there that day and a different doctor examined him. Well, the different doc decided taht dad needed a slightly higher dose and told him to take one and a half pills instead of just the usual one pill. A week later, dad’s in the hospital ICU for four days while they bring him back from death’s door. The increased dosage almost killed him.

So yeah, it’s serious stuff… pay attention to how much your supposed to take, don’t vary from it, and question any suggestion or direction to increase your dosage.

Also, my dad seemed to bruise very easily as well, although that may have been a result of his old age or the malady that caused him to need warfarin in the first place. But to answer your concern, dad never gained any appreciable amount of weight at all.

I’ve heard some people say you should avoid leafy green vegetables because they contain vitamin K, which acts as a counteragent to Coumadin’s effects. (that’s what they gave dad while he was in the ICU). I’ve got no cite for this, but you may want to ask your doc if you need to limit your intake of those vegetables.

Good luck!
Lastly, my first post! Greets to all!

I love leafy green vegetables and salad so it’s unfortunate that these things are not recommended. However, from what I’ve been told, it’s not so much that you can’t eat them so long as you eat the same amount every day. So if you have spinach every day, that’s fine. If you have a certain amount of salad every day, it’s fine. But the beauty about not having dietary restrictions is the change from one meal to the next. Having spinach every day would get boring really fast.

A little of each is important in its own way, I believe. Of course, it’s also possible that what happens when an online forum asks, “Did you gain weight on Drug X?” anyone who suffered this side effect will respond, while others might ignore it. So it’s not the most scientific method. However, their stories can’t be ignored either.

I have an hemangioma on my liver. Everybody I talked to, including what I read online, even general practioners’ opinions were that it may explode: Be careful! I was seen by a liver surgeon and he told me not to worry about it, come back in a year if you want or if you don’t come back, that’s fine too. And that was that. The internet can be both a blessing and a curse. I’m pretty sure if I type into Google: myopia eyeglasses diabetes there will be someone talking about the link between eyeglasses and diabetes.

What mutation? Factor V Lieden? Prothrombin? I used to do tests for some of them, so I know the molecular biology behind them.

I’m just relaying the information from the test results here but have no real idea what they mean. But a basic summary is:

Factor XI is 152 when the range should be 50 to 150.
Protein C Functional is 237 and the range is 70 to 130.
For Factor V Leiden, it just says “Wild Type.”
For Prothrombin (G20210A), it also says “Wild Type.”

My 2-year-old is a mutant, too. Only her superpower is moderately-impaired hearing.:dubious: Maybe you two could start a team or something.

Sorry about your diagnosis. My recommendation would be to listen to your doctor and not the unqualified medical advice of random strangers on the internet. If you want a second opinion on your medication, I would suggest you seek out another doctor. The Internet is full of whackos who think routine vaccinations gave their kid autism. These are not people you should trust for medical advice.

IF coumadin is associated with an increase in weight, I’d hypothesize it’s for two reasons. One is that it tends to be prescribed to people who have or will develop heart disease, and, mutants aside, those are people who tend to be overweight and put on more weight as the years go by, no matter what medication they’re on. But more importantly, this:

Not picking on you, Buffalo Bilious, this is very commonly believed, and it *used *to be common medical advice, but it’s now some years out of date. As **Tony **says, the current recommendation is to keep your intake of foods rich in Vit K consistent, and to let your doctor and/or pharmacist adjust your coumadin to your INR (blood test) levels.

But you can see how this old advice might steer people into eating an unhealthy diet. Avoid lettuce and spinach and kale and collards and broccoli and tofu and low fat yogurt and whole wheat, and you’re likely to be eating a crappier, weight promoting diet.

Check again with your doctor. Most docs and pharmacists I know want your Vit. K intake to be consistent from week to week, but day to day isn’t vital. That’s even more flexibility to help you account for special events and favorite meals.

I had a bout with clots and blockages in my legs. Doc put me on Coumadin (warfarin) for a period of a few months… Had to go for blood test every week until they got they dosage right then once a month to make sure dosage was still applicable and working correctly.
On my last visit he recommended that I switch to Pradaxa. He explained that it would work like Coumadin but the monthly blood tests were not necessary. That’s is what I have been on now for about 6 months.
I have gained a few pounds, but as I have always been skinny, Putting on about ten pounds didn’t make much difference. Might be a coincidence or the medication. I am getting older(63) and it’s about time for the middle age spread to begin.
You might check with your doc .

The last two are the only genetic tests, and you came back normal for both. The other two are functional tests measuring how well the proteins work. Your protein C is out of range, but these tests don’t explain why.

Be careful about reading about drugs on the Internet. Some wacko will probably tell you that you are taking rat poison.