Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hi Everyone,
I saw my doctor yesterday to get the results of my blood tests. Everything came out clear except my Factor VIII levels were high. The doctor told me that could be caused by anything: fighting a cold, inflammation and such but there was some literature that suggests if these levels remain high one could be at greater risk for recurrence. She didn't seem too concerned about it though and she said some doctors would think she was doing "overkill" with me (which I found comforting). She said I had very clearly provoked clot because of pregnancy.
She told me she would like to retest me in three months and see how the levels are. I asked her would I have to go back on anticoagulants if they were high again and she said she wouldn't put me back on them but maybe on a baby aspirin.
There wasn't much about this on the internet (i know! I'm not supposed to read the internet) but what was there suggests that high levels mean a much higher risk of recurrence and consideration of anticoags for life.
My doctor didn't seem worried at all. She actually said she wasn't worried. And I asked her if I was her sister (thanks to RMBs suggestion) would she keep me off anticoagulants and she said yes.
Does anyone have any information about this? It seems like this is all good news but my anxious mind is going to worry about these high levels. Any advice would be greatly appreciated.
I saw my doctor yesterday to get the results of my blood tests. Everything came out clear except my Factor VIII levels were high. The doctor told me that could be caused by anything: fighting a cold, inflammation and such but there was some literature that suggests if these levels remain high one could be at greater risk for recurrence. She didn't seem too concerned about it though and she said some doctors would think she was doing "overkill" with me (which I found comforting). She said I had very clearly provoked clot because of pregnancy.
She told me she would like to retest me in three months and see how the levels are. I asked her would I have to go back on anticoagulants if they were high again and she said she wouldn't put me back on them but maybe on a baby aspirin.
There wasn't much about this on the internet (i know! I'm not supposed to read the internet) but what was there suggests that high levels mean a much higher risk of recurrence and consideration of anticoags for life.
My doctor didn't seem worried at all. She actually said she wasn't worried. And I asked her if I was her sister (thanks to RMBs suggestion) would she keep me off anticoagulants and she said yes.
Does anyone have any information about this? It seems like this is all good news but my anxious mind is going to worry about these high levels. Any advice would be greatly appreciated.
I don't know much about Factor VIII, except to know that I think problems with it are more commonly connected to anemia than clotting. So you kind of have the opposite problem from normal with it. I did look up more information about it (online) myself when I saw your question, and I'm sure that I've read in the past that Factor VIII wasn't considered a big huge clotting risk; however, now that I read a little bit more, I'm not 100% sure whether what I had initially read was regarding arterial or venous clotting. From what I was just reading, the risk seems to be relatively low when connected to heart disease, but is considerable when connected to DVT (and hence, PE).
Some of the things which I liked that the article I just read did mention (and I'm sorry I accidently closed it so I don't know which, specifically, it was - but it was also just a scientific paper early in the Google results), but it talked about the cumulative effect of risk factors. I know that we here talk about that all the time, just knowing that anecdotally most of us are aware that when we got DVTs or PEs, there was more than one risk factor involved, which we talk about being the "perfect storm". Anyway, I liked that the paper specifically mentioned that being true - clots are usually the result of several things together more than one particular thing.
Yours happening during pregnancy makes that the "big culprit". Even if you have a consistently elevated Factor VIII, if you hadn't gotten pregnant, you may have never gotten a clot in your whole life. Pregnancy was the thing that kind of tipped the scales. I sort of agree with what your doctor said, that what she's doing is "overkill" in searching beyond pregnancy, because there are a lot of doctors who would just consider that the reason, leave it at that and not do thrombophilia testing. However, she actually found something, which then, to me, makes it not overkill. So I'm not saying that I'd take the pregnancy completely out of the equation of deciding what to do, but I think it puts it into a little bit different perspective, like instead of pregnancy being 99% responsible, now it's maybe 49% responsible. Or whatever, I'm just making numbers up to illustrate the way I would understand the information. I don't know if I'm making sense, though, and I hope I'm not confusing you.
In any case, to be more clear, I think you're well within your right to question the treatment or lack thereof. Because the thing is, even if you never get pregnant again, additional risk factors for clotting are pretty much a part of everyone's lives, so from time to time you'll take a long car ride or plane trip, or be stuck in bed with the flu for a week, etc.
I don't know what protocol is regarding prophylactic anticoagulation for Factor VIII, so you might try to see if you can find information regarding that specifically. Because I don't think just jumping immediately to staying on warfarin is necessarily the right thing to do since there are other, different, risks staying on it. However, you have this (maybe) constant risk factor present, which is just going to amplify any other risk in your life.
So you kind of have to figure out what you really feel most comfortable with, and why, and talk to your doctor about it. You're just getting over PE, so in a way, that's probably the easier thing for you to feel safe with, staying on anticoagulants. However, if you had experienced a severe bleed of some sort while on your treatment, then you might prefer to get off of it as quickly as possible. My point in saying that is, different experiences will give us different perspectives, and at the end of the day, you're the person best qualified to make the decision for your own health, because like it or not, whatever you do has a risk. At this point, it's basically a risk analysis you have to do, getting whatever information you can from your doctor(s) and in your own research.
I always say this, but every treatment option which I've been given since getting PE, I always asked my doctors risks and benefits for proceeding with or refusing treatments, and then I just have to weigh that information and decide what feels right to me. If I know the decision is mine, then I take responsibility for whatever happens after. I think that's the best any of us can do.
If I find any other helpful information, I'll try to post it here for you.
From the New England Journal of Medicine:
"Recurrent venous thromboembolism developed in 38 of the 360 patients (10.6 percent). Patients with recurrence had higher mean (SD) plasma levels of factor VIII than those without recurrence (18266 vs. 15754 IU per deciliter, P=0.009). The relative risk of recurrent venous thrombosis was 1.08 (95 percent confidence interval, 1.04 to 1.12; P
The most important thing of everything I said, though, was that actually the results of this study showed that the higher someone's Factor VIII levels, the higher their chance of recurrence. So while you're seeing that 37% chance or whatever, that risk was only among patients with the very highest levels of Factor VIII. People with a low elevation had only like a 3% risk or recurrence, and even among the entire study group, there was only an overall risk of 10.6%.
What I would guess is that your doctor is seeing low levels of elevation, and that's why she's comfortable having you stop anticoagulation. But when you see her again, you could ask her specifically what your levels are and how they compare with the information from this study; basically, where do you fall in that? Knowing the specific information there could make you more comfortable with the decisions moving forward.