to tell or not to tell
December 20, 2005 4:41 PM Subscribe
Should I tell my doctor something about my medical history that might keep her from prescribing me the birth control I want?
I have a family history of blood clots, and I tested positive for one gene of Factor Five Leiden (5% more likely than the general population to develop a blood clot). (The other gene is normal - I forget my high school biology, but that's the gist of it.) Something like 5% of the population has 1 Factor Five Leiden gene. I have been on hormonal birth control for about 4 years now, and I have not had a blood clot. The specialist I saw told me that most women who get blood clots from birth control get them in the first year. She also told me that estrogen is the cause of the blood clots. I've been on the Nuvaring for about 2 years, and I LOVE it. I feel like a normal person on it. As I understand, it has 1/3 the estrogen of the Pill, so I'm thinking the risk of a blood clot might be lower too. The problem is, Planned Parenthood refused to continue my Nuvaring prescription once they found out I was on baby aspirin (1x per day). And the specialist I saw kept telling me those facts about blood clots and birth control, but when I asked if I should stay on the Ring she would only say that she wouldn't advise it. Now I'm visiting a new GYN on Monday, new health care coverage too, and I'm wondering whether I should tell her about the Factor Five Leiden and risk her refusing to prescribe the Nuvaring, or not tell her and lower the quality of my health care and also possibly put her at some sort of risk. (Although I would think if I conceal part of my medical history she would be fine, legally, if something happened to me, but who knows.)
What should I do? Pregnancy to me seems like a greater risk - much more likely, and potentially worse altogether - than the slightly increased risk of the blood clot. And I know there are alternatives to hormonal birth control - condoms, diaphragm, temperature, etc., but I've considered them all, and mostly they're significantly less effective than hormonal birth control, and others (e.g. IUD) have their own serious side effects. I don't want to screw the doctor, and I don't want to screw myself.
I have a family history of blood clots, and I tested positive for one gene of Factor Five Leiden (5% more likely than the general population to develop a blood clot). (The other gene is normal - I forget my high school biology, but that's the gist of it.) Something like 5% of the population has 1 Factor Five Leiden gene. I have been on hormonal birth control for about 4 years now, and I have not had a blood clot. The specialist I saw told me that most women who get blood clots from birth control get them in the first year. She also told me that estrogen is the cause of the blood clots. I've been on the Nuvaring for about 2 years, and I LOVE it. I feel like a normal person on it. As I understand, it has 1/3 the estrogen of the Pill, so I'm thinking the risk of a blood clot might be lower too. The problem is, Planned Parenthood refused to continue my Nuvaring prescription once they found out I was on baby aspirin (1x per day). And the specialist I saw kept telling me those facts about blood clots and birth control, but when I asked if I should stay on the Ring she would only say that she wouldn't advise it. Now I'm visiting a new GYN on Monday, new health care coverage too, and I'm wondering whether I should tell her about the Factor Five Leiden and risk her refusing to prescribe the Nuvaring, or not tell her and lower the quality of my health care and also possibly put her at some sort of risk. (Although I would think if I conceal part of my medical history she would be fine, legally, if something happened to me, but who knows.)
What should I do? Pregnancy to me seems like a greater risk - much more likely, and potentially worse altogether - than the slightly increased risk of the blood clot. And I know there are alternatives to hormonal birth control - condoms, diaphragm, temperature, etc., but I've considered them all, and mostly they're significantly less effective than hormonal birth control, and others (e.g. IUD) have their own serious side effects. I don't want to screw the doctor, and I don't want to screw myself.
Generally IUDs are not given to women who have not had children, or so I am told. However, given your medical . . . possibilities . . . it may be something the doctor would consider. IUDs are far different now than they were in the bad old days. My best friend's mom has one, and has had since she got over the birth of my best friend's little sister (twenty years? something like that) and there have been no further children. I would be honest with your doctor, but also be honest about your level of activity and the risks you take in your personal life. It's your doctor's job to know this stuff and help you take care of yourself, so if your doctor is a jerk or gets sanctimonious with you, get another doctor.
By the way, delmoi, a friend of mine had a small stroke because she concealed a health condition from her doctor. See, she's allergic to latex, and she can't use normal condoms, so she really wanted hormonal birth control. Problem is that she was born with a heart issue, and she "didn't think" it would matter, and it did. She's lucky she isn't a vegetable. So be honest with your doctor.
posted by Medieval Maven at 4:59 PM on December 20, 2005
By the way, delmoi, a friend of mine had a small stroke because she concealed a health condition from her doctor. See, she's allergic to latex, and she can't use normal condoms, so she really wanted hormonal birth control. Problem is that she was born with a heart issue, and she "didn't think" it would matter, and it did. She's lucky she isn't a vegetable. So be honest with your doctor.
posted by Medieval Maven at 4:59 PM on December 20, 2005
I know someone who had blood clots while on the Nuvaring. Dealing with it was far more complicated and lengthy than dealing with an unwanted pregnancy if you are ok with abortion.
However, that's not the point--I don't think you should lie to your doctor. Allow her to look out for your health--that's what she's there to do. Discuss your feelings about pregnancy being more serious than blood clots, to you.
That said, have you considered progesterone-only pills? They work slightly differently, but they do not increase the risk of blood clots.
posted by needs more cowbell at 5:05 PM on December 20, 2005
However, that's not the point--I don't think you should lie to your doctor. Allow her to look out for your health--that's what she's there to do. Discuss your feelings about pregnancy being more serious than blood clots, to you.
That said, have you considered progesterone-only pills? They work slightly differently, but they do not increase the risk of blood clots.
posted by needs more cowbell at 5:05 PM on December 20, 2005
My friend in her 30s with no kids has an IUD. This was the best option for her since her nuttiness becomes even nuttier on estrogen.
She loves it, can not tell it is there during sex or at anytime.
You could have mild stroke and get over it or you could have a massive stroke (think: Terri Schaivo), either way I think you need to check into some non-estrogen options. Your doctor should be really responsive to helping you with this, if not find a new one.
posted by TheLibrarian at 5:17 PM on December 20, 2005
She loves it, can not tell it is there during sex or at anytime.
You could have mild stroke and get over it or you could have a massive stroke (think: Terri Schaivo), either way I think you need to check into some non-estrogen options. Your doctor should be really responsive to helping you with this, if not find a new one.
posted by TheLibrarian at 5:17 PM on December 20, 2005
For goodness' sake, tell you doctor. This doctor might refuse to prescribe the birth control you want, but if you shop around, the next might not. Or, if you explain that you are willing to take the risk, the doctor might note that (to potentially save their ass) and prescribe anyway. But while you're doing this, think very seriously about the trouble you're going to to subvert guidelines that are put in place to protect your health.
Don't lie to your doctor. Imagine if you died, and your family brought a negligence case against the doctor, claiming "she had an obvious family history, a proven genetic predisposition, and he/she still couldn't find out the critical information that could have saved our daughter's life!" The doctor would be rather screwed.
You have the full story, and are willing to take a risk on your health. It's only fair that any doctor who helps you has all of the information as well before they take that risk on your health and their career.
posted by teem at 5:24 PM on December 20, 2005
Don't lie to your doctor. Imagine if you died, and your family brought a negligence case against the doctor, claiming "she had an obvious family history, a proven genetic predisposition, and he/she still couldn't find out the critical information that could have saved our daughter's life!" The doctor would be rather screwed.
You have the full story, and are willing to take a risk on your health. It's only fair that any doctor who helps you has all of the information as well before they take that risk on your health and their career.
posted by teem at 5:24 PM on December 20, 2005
My cousin had an estrogen-prompted pulmonary embolism and very nearly died.
Don't mess around.
The modern copper IUD is highly regarded, and while women who have never given birth are not generally considered ideal candidates, your condition will probably be enough to convince a doctor to insert one for you.
Not only should you not conceal your medical history from a new doctor, you should request a records transfer when you change care providers.
posted by padraigin at 5:25 PM on December 20, 2005
Don't mess around.
The modern copper IUD is highly regarded, and while women who have never given birth are not generally considered ideal candidates, your condition will probably be enough to convince a doctor to insert one for you.
Not only should you not conceal your medical history from a new doctor, you should request a records transfer when you change care providers.
posted by padraigin at 5:25 PM on December 20, 2005
If I were you, I'd tell the doctor. Your health and safety are far more important than preferring one method of birth control over a less convenient one.
posted by booknerd at 5:25 PM on December 20, 2005
posted by booknerd at 5:25 PM on December 20, 2005
IUDs are much safer nowadays. I'm 25, never been pregnant and I have an IUD (Paragard) . I am extremely happy with it.
posted by disaster77 at 5:29 PM on December 20, 2005
posted by disaster77 at 5:29 PM on December 20, 2005
Friend's daughter died of a blood clot from birth control. Seeing what it did to them, I can ask you to please consider others health in this decision, in addition to your own. Best of luck.
posted by sled at 5:29 PM on December 20, 2005
posted by sled at 5:29 PM on December 20, 2005
a) Tell your doctor. Christ Jesus almighty on a hotdog bun.
b) Get tested for the genetic prothrombin variation that 'activates' your aberrant factor V Leiden, if you really give a crap. The elevated risk may in fact be minimal, and you might need to educate your doc about this.
c) Consider progesterone-based birthcontrol, like Norplant or Depo-Provera, as Gator mentioned.
d) Nuvaring's not an IUD.
e) Consider an IUD.
Pregnancy to me seems like a greater risk - much more likely, and potentially worse altogether - than the slightly increased risk of the blood clot.
I hope no one should ever get a pulmonary embolus from venous thromboembolism, or, worse, a sagittal sinus thrombosis. But when you do, it is likely to kill you or, worse, turn you into a living vegetable, halve your IQ, and confine you to bed, incontinent and fully dependent, for the next 50 years. If you don't give a crap about your own life, imagine putting a doctor in the position of knowing that her prescription did this to you. And if you don't give a crap about that either, think of the taxpayers who are going to wind up paying for your care if you have a blood clot on their dime.
In short, you have lots of options. Talk to your doctor about these options so you don't screw yourself and the doctor out of taking advantage of the best one.
posted by ikkyu2 at 5:34 PM on December 20, 2005
b) Get tested for the genetic prothrombin variation that 'activates' your aberrant factor V Leiden, if you really give a crap. The elevated risk may in fact be minimal, and you might need to educate your doc about this.
c) Consider progesterone-based birthcontrol, like Norplant or Depo-Provera, as Gator mentioned.
d) Nuvaring's not an IUD.
e) Consider an IUD.
Pregnancy to me seems like a greater risk - much more likely, and potentially worse altogether - than the slightly increased risk of the blood clot.
I hope no one should ever get a pulmonary embolus from venous thromboembolism, or, worse, a sagittal sinus thrombosis. But when you do, it is likely to kill you or, worse, turn you into a living vegetable, halve your IQ, and confine you to bed, incontinent and fully dependent, for the next 50 years. If you don't give a crap about your own life, imagine putting a doctor in the position of knowing that her prescription did this to you. And if you don't give a crap about that either, think of the taxpayers who are going to wind up paying for your care if you have a blood clot on their dime.
In short, you have lots of options. Talk to your doctor about these options so you don't screw yourself and the doctor out of taking advantage of the best one.
posted by ikkyu2 at 5:34 PM on December 20, 2005
Please, please tell your new doctor about your Factor V Leiden. I also have the single mutation and was on birth control for 6 years. While I was on the pill, a girl in the city where I lived died of a clot. It still happens and your risk is much higher than other people.
I didn't know I had it until I got a clot while I was pregnant with my first child. Let me tell you it sucks dealing with months of blood thinners, a leg that aches regularly and the knowledge that I can get another one at any time, just for sitting too long. And I was lucky that I didn't DIE! Any doctor that treats you needs to know. If you ever choose to get pregnant, you will need to be on blood thinners, and even so your chance of getting a clot is elevated. Anything that raises your estrogen level, like pregnancy and the pill, greatly increases your risk for a clot. My 3 yr old daughter also tested positive and her pediatrician has told me that she shouldn't sit in the car for more than an hour, even at her age. The doctor also wants to test my newborn son at some point, since if he has it and if he has any type of surgery he'll have to be on blood thinners. Don't put your life at risk, find another alternative for birth control.
posted by Buck Eschaton at 5:44 PM on December 20, 2005
I didn't know I had it until I got a clot while I was pregnant with my first child. Let me tell you it sucks dealing with months of blood thinners, a leg that aches regularly and the knowledge that I can get another one at any time, just for sitting too long. And I was lucky that I didn't DIE! Any doctor that treats you needs to know. If you ever choose to get pregnant, you will need to be on blood thinners, and even so your chance of getting a clot is elevated. Anything that raises your estrogen level, like pregnancy and the pill, greatly increases your risk for a clot. My 3 yr old daughter also tested positive and her pediatrician has told me that she shouldn't sit in the car for more than an hour, even at her age. The doctor also wants to test my newborn son at some point, since if he has it and if he has any type of surgery he'll have to be on blood thinners. Don't put your life at risk, find another alternative for birth control.
posted by Buck Eschaton at 5:44 PM on December 20, 2005
yes, you should tell yr doctor.
period. nuff said!
it should be up to yr physician to learn enough about what's going on and help you make a well-informed decision when it comes to birth control. now it's likely that most physicians will simply say "no way, man," without doing any sort of reading or self-education re: factor V leiden defects/deficiencies, but you should implore him to help you out.
all that said, it's very likely that you won't receive scripts for any sort of hormonal birth control. blood clots just aren't worth it. play with the probabilities any way you'd like, but the fact is you may die. there's absolutely no way to predict what kind of clot you'll develop, or where it'll form or go.
all the stuff about percentages and symptom-free period is moot. even if you're heterozygous for the mutation, you still have a much, MUCH higher risk of developing clots. if, for whatever reason, you do end up developing a clot, anywhere, for any reason, you're going to be on blood thinners for at LEAST a year! and being on coumadin is no cup o tea.
it seems like you're against IUDs. but IUDs are coming back into the fray, and the ones on the market now are pretty darn safe. but whatever you end up doing, i implore you to tell yr new doc about yr diagnosis. not only will it help you two figger out what birth control options are safe, but it'll also help with any future medical care. for example: pregnancy itself is a hypercoagulable state, and any genetic clotting disorders put you at a high risk for miscarrying. tell yr doc. it's fair for both parties, but that's pretty damn minor compared to the possibility of you dying. a "i wouldn't advise it" answer ain't good enough for me. ask hard questions! best of luck.
onprev: what ikkyu2 says. as usual!
posted by herrdoktor at 5:45 PM on December 20, 2005
period. nuff said!
it should be up to yr physician to learn enough about what's going on and help you make a well-informed decision when it comes to birth control. now it's likely that most physicians will simply say "no way, man," without doing any sort of reading or self-education re: factor V leiden defects/deficiencies, but you should implore him to help you out.
all that said, it's very likely that you won't receive scripts for any sort of hormonal birth control. blood clots just aren't worth it. play with the probabilities any way you'd like, but the fact is you may die. there's absolutely no way to predict what kind of clot you'll develop, or where it'll form or go.
all the stuff about percentages and symptom-free period is moot. even if you're heterozygous for the mutation, you still have a much, MUCH higher risk of developing clots. if, for whatever reason, you do end up developing a clot, anywhere, for any reason, you're going to be on blood thinners for at LEAST a year! and being on coumadin is no cup o tea.
it seems like you're against IUDs. but IUDs are coming back into the fray, and the ones on the market now are pretty darn safe. but whatever you end up doing, i implore you to tell yr new doc about yr diagnosis. not only will it help you two figger out what birth control options are safe, but it'll also help with any future medical care. for example: pregnancy itself is a hypercoagulable state, and any genetic clotting disorders put you at a high risk for miscarrying. tell yr doc. it's fair for both parties, but that's pretty damn minor compared to the possibility of you dying. a "i wouldn't advise it" answer ain't good enough for me. ask hard questions! best of luck.
onprev: what ikkyu2 says. as usual!
posted by herrdoktor at 5:45 PM on December 20, 2005
Well if ikkyu2 were your doctor, you'd have your answer now :)
ikkyu2 - what might be more helpful than the "doctor knows best on a holy hotdog bun" (or whatever) routine is some input from you on the following: will doctors advise their patients of the risks, but allow them to take certain risks if they so choose? Many health risks can be quantified to a percentage risk. Is there a point past which it's really your choice? Or will most doctors simply refuse to participate in anything that has any level of risk? That seems unlikely. So where's the line drawn?
You know I appreciate your professional opinion, but come down and talk to us on this one :)
IUDs are far different now than they were in the bad old days
Indeed. If you haven't done any research into this lately, you should.
posted by scarabic at 5:54 PM on December 20, 2005
ikkyu2 - what might be more helpful than the "doctor knows best on a holy hotdog bun" (or whatever) routine is some input from you on the following: will doctors advise their patients of the risks, but allow them to take certain risks if they so choose? Many health risks can be quantified to a percentage risk. Is there a point past which it's really your choice? Or will most doctors simply refuse to participate in anything that has any level of risk? That seems unlikely. So where's the line drawn?
You know I appreciate your professional opinion, but come down and talk to us on this one :)
IUDs are far different now than they were in the bad old days
Indeed. If you haven't done any research into this lately, you should.
posted by scarabic at 5:54 PM on December 20, 2005
I have a friend that also has that gene, and got a blood clot while on birth control. Fortunately she caught it and was unharmed, but the experience was extremely unpleasant, as she had to undergo a huge amount of testing and blood drawing etc for months afterwards.
Because of this, she got a copper (non-hormonal) IUD, and is quite happy with it. She was young, unmarried, and never had kids when she got it, so if someone tells you no, keep asking.
posted by ch1x0r at 6:01 PM on December 20, 2005
Because of this, she got a copper (non-hormonal) IUD, and is quite happy with it. She was young, unmarried, and never had kids when she got it, so if someone tells you no, keep asking.
posted by ch1x0r at 6:01 PM on December 20, 2005
The way you frame the question makes it is impossible for any sane person to give you any answer short of "Please, tell your doctor". Unless, as noticed above, you are having suicidal thoughts lately, and then you should tell that to a doctor too (albeit a different kind of doctor).
Look, I am not a doctor and I am a man but I think I manage to keep myself mildly well-informed about things. I was under the impression there are many chemical birth-control options nowadays (and that the physical birth control options had also advanced a bit). I understand it may be stressful to substitute a drug your body is used to for another with (from your point of view) unpredictable side-effects (I went through this with my wife once or twice). But a good doctor will present you with all other options available and it is quite probable that you two together will be able to find method both safer and comfortable for you.
posted by nkyad at 6:01 PM on December 20, 2005
Look, I am not a doctor and I am a man but I think I manage to keep myself mildly well-informed about things. I was under the impression there are many chemical birth-control options nowadays (and that the physical birth control options had also advanced a bit). I understand it may be stressful to substitute a drug your body is used to for another with (from your point of view) unpredictable side-effects (I went through this with my wife once or twice). But a good doctor will present you with all other options available and it is quite probable that you two together will be able to find method both safer and comfortable for you.
posted by nkyad at 6:01 PM on December 20, 2005
Do not lie to (or withhold information from) your doctor. You may be underestimating the health risks for one thing, but also your doctor may be able to recommend a better solution that doesn't endanger your health.
Don't you watch House? Every week the team has to take extraordinary measures to save some patient who lied about their symptoms or medical history.
Or put it another way, if you were on trial for a capital crime (one with the possibility of the death penalty), would you lie to your lawyer?
posted by zanni at 6:09 PM on December 20, 2005
Don't you watch House? Every week the team has to take extraordinary measures to save some patient who lied about their symptoms or medical history.
Or put it another way, if you were on trial for a capital crime (one with the possibility of the death penalty), would you lie to your lawyer?
posted by zanni at 6:09 PM on December 20, 2005
I had an IUD for 5 years before I took it out and got pregnant for the first time. No hormones, very few risks (if you're in a committed relationship and std free) and you never ever ever had to think about it. The pregnancy prevention rates are second only to surgical sterilization. I had the copper t - can't recommend it enough.
When I read your question my first instinct was to tell you to fib (I understand feeling like you are more in tune with your own risk tolerence and wanting to have things your way) - but reading all the anecdotes about ending up a gork because of birth control really puts it in perspective. It seems like a ridiculous risk to take when there are so many alternatives.
posted by Wolfie at 6:31 PM on December 20, 2005
When I read your question my first instinct was to tell you to fib (I understand feeling like you are more in tune with your own risk tolerence and wanting to have things your way) - but reading all the anecdotes about ending up a gork because of birth control really puts it in perspective. It seems like a ridiculous risk to take when there are so many alternatives.
posted by Wolfie at 6:31 PM on December 20, 2005
Tell your doctor. You could die. If you don't die, you could end up incapacitated. If something happens, your health insurer may investigage, find out you witheld valuable information and refuse to cover you. And then you'd have a crushing amount of debt.
Tell your doctor about your situation. They will sometimes recommend an IUD. I haven't had any trouble with mine.
posted by acoutu at 6:37 PM on December 20, 2005
Tell your doctor about your situation. They will sometimes recommend an IUD. I haven't had any trouble with mine.
posted by acoutu at 6:37 PM on December 20, 2005
will doctors advise their patients of the risks, but allow them to take certain risks if they so choose? Many health risks can be quantified to a percentage risk. Is there a point past which it's really your choice? Or will most doctors simply refuse to participate in anything that has any level of risk? That seems unlikely. So where's the line drawn?
this isn't addressed to me, but i'd like to respond. hope you don't mind!
the way things are supposed to work is that all patients are supposed to be in complete control of their medical care. or: "patient autonomy" is a principle we should respect. of course there are instances where this isn't feasible, such as when someone's deemed incompetent or looking to harm themselves.
that said, it's still up to the physician to offer the medical care any patient requests. they can always choose to not go with what the pt. wants.
the problem with quantifying things is that risks seem to be trivialized. it becomes easy to fixate on numbers such as "90-95% no sweat" and "5-10% bleeding, which could lead to seizures most of the time or death." then, a period of time is factored in: "5-10% bleed risk each year," and explanations are requested and given about whether or not the risk is cumulative, etc. finally, most interventions or treatments are going to have some risk as well.
mix all this together and a lot of times people with significant medical problems come up with: "well, i'm ok now, i'll probably be ok later, and if i do anything about it, i might have other complications." and this without the denial that's typically manifests itself after bad medical news is delivered.
if someone similar to the orig. poster's situation were to come to me, i'd out-and-out refuse to write a script for hormonal birth control. i'd relay what information i know about clotting disorders (which i feel comfortable with), and other birth control options (which i know comparatively less about). additionally, i'd promise to read up on other options, and suggest that she see an OB/gyn (which i am not), and fully disclose her medical history.
posted by herrdoktor at 6:54 PM on December 20, 2005
this isn't addressed to me, but i'd like to respond. hope you don't mind!
the way things are supposed to work is that all patients are supposed to be in complete control of their medical care. or: "patient autonomy" is a principle we should respect. of course there are instances where this isn't feasible, such as when someone's deemed incompetent or looking to harm themselves.
that said, it's still up to the physician to offer the medical care any patient requests. they can always choose to not go with what the pt. wants.
the problem with quantifying things is that risks seem to be trivialized. it becomes easy to fixate on numbers such as "90-95% no sweat" and "5-10% bleeding, which could lead to seizures most of the time or death." then, a period of time is factored in: "5-10% bleed risk each year," and explanations are requested and given about whether or not the risk is cumulative, etc. finally, most interventions or treatments are going to have some risk as well.
mix all this together and a lot of times people with significant medical problems come up with: "well, i'm ok now, i'll probably be ok later, and if i do anything about it, i might have other complications." and this without the denial that's typically manifests itself after bad medical news is delivered.
if someone similar to the orig. poster's situation were to come to me, i'd out-and-out refuse to write a script for hormonal birth control. i'd relay what information i know about clotting disorders (which i feel comfortable with), and other birth control options (which i know comparatively less about). additionally, i'd promise to read up on other options, and suggest that she see an OB/gyn (which i am not), and fully disclose her medical history.
posted by herrdoktor at 6:54 PM on December 20, 2005
Seems like most everyone has given you the answer I'd give you: tell your doctor. As a doctor (not your doctor!) who deals with clotting, bleeding, prothrombotic tendencies, and all that jazz every single day, I'd say that you're messing with fire; 3.2.3 put it succinctly by saying "don't tell your doctor if you don't mind dying." The risks are real (the minimum quoted risk for someone with factor V Leiden and combination estrogen/progesterone birth control methods (like NuvaRing) developing blood clots is 1 in 500 women, which is seven times higher than the risk for women taking combination birth control without having factor V Leiden, and 25 times higher than the risk for women who don't take oral contraceptives). Your invulnerable feelings will change quickly if you get a huge embolus that leaves you permanently debilitated or dead.
(And one point of clarification to ikkyu2's first comment above -- the prothrobin mutation he mentioned, prothrombin 20210A, is an independent risk factor for thrombosis, not a risk factor linked to factor V Leiden. In other words, if you have factor V Leiden but have normal prothrombin, it's not like your factor V Leiden mutation is somehow negated. Of course, the converse isn't true -- having both mutations definitely creates a multiplied increase in the risk of thrombosis.)
posted by delfuego at 7:29 PM on December 20, 2005
(And one point of clarification to ikkyu2's first comment above -- the prothrobin mutation he mentioned, prothrombin 20210A, is an independent risk factor for thrombosis, not a risk factor linked to factor V Leiden. In other words, if you have factor V Leiden but have normal prothrombin, it's not like your factor V Leiden mutation is somehow negated. Of course, the converse isn't true -- having both mutations definitely creates a multiplied increase in the risk of thrombosis.)
posted by delfuego at 7:29 PM on December 20, 2005
I need to Echo Ikkyu. In clearest possible terms, you should be on oral contraceptives assuming you have a death wish. And not telling your doctor? Do her a favor - call the office tomorrow and tell them you are leaving the practice. Because if you're willing to put her practice livelihood, and your own life in jeopardy for a birth control prescription, you're a medicolegal nightmare waiting to happen. Don't think she would be protected because you lied - any attorney hired by you're estate would nail her to the wall for not reviewing your old records.
posted by docpops at 8:11 PM on December 20, 2005
posted by docpops at 8:11 PM on December 20, 2005
As the recent recipient of my 5th blood clot, I will tell you quite frankly that you don't want one. While a typical clotter may not have these circumstances, here's what I have had in the aftermath in roughly chronological order:
Clot 1 (superificial):
Bad pain, huge swelling, naprosyn and 1 week of lost work and 2 weeks of walking on a cane
Clot 2 (deep vein thrombosis):
Unspeakable pain, 3 weeks of hospitalization (1 in the ICU where I was pretty much unable to move without severe pain), 4 weeks of recovery at home, needed a walker for a while, permanent damage to my circulation, daily pitting edema, post thrombitic syndrome, 1 year of coumadin
Clot 3 (superficial):
See clot 1, 1 year of coumadin
Clot 4 (superficial):
See clot 1, coumadin for life, added a Medicalert bracelet to my daily wear
Clot 5 (superficial):
See clot 1, not as severe part of a complication of having cellulitis probably due to a bacterial infection transmitted through microtears caused by the pitting edema, caught early, now wearing support hose. When my hematologist told me that I would be likely to get superficial clots because of all the venous damage, my response was, "Well...fuck."
Really, you don't want a blood clot if you can avoid it.
Now, as a lifetime member of the coumadin club, I need to avoid aspirin, ibuprofen, most over-the-counter cold remedies, all non-steroidal anti-inflammatories, my vitamin K intake, and I get to get stabbed at least once a month for blood a blood test.
Now, besides talking to your doctor you should make it clear that you want to assess the risk here. You already have one risk which is factor 5V Leiden. You should consider asking about tests for (and if your hematologist is worth his/her salt you should have had these anyway):
G20210A
Protein S
Protein C
Activated Protein C Resistance
Lupus
Cardiolipoprotein (IIRC)
Antithrombin III
If it were me, I wouldn't do it and I'm a stock holder in the company that makes Nuvaring.
posted by plinth at 8:18 PM on December 20, 2005
Clot 1 (superificial):
Bad pain, huge swelling, naprosyn and 1 week of lost work and 2 weeks of walking on a cane
Clot 2 (deep vein thrombosis):
Unspeakable pain, 3 weeks of hospitalization (1 in the ICU where I was pretty much unable to move without severe pain), 4 weeks of recovery at home, needed a walker for a while, permanent damage to my circulation, daily pitting edema, post thrombitic syndrome, 1 year of coumadin
Clot 3 (superficial):
See clot 1, 1 year of coumadin
Clot 4 (superficial):
See clot 1, coumadin for life, added a Medicalert bracelet to my daily wear
Clot 5 (superficial):
See clot 1, not as severe part of a complication of having cellulitis probably due to a bacterial infection transmitted through microtears caused by the pitting edema, caught early, now wearing support hose. When my hematologist told me that I would be likely to get superficial clots because of all the venous damage, my response was, "Well...fuck."
Really, you don't want a blood clot if you can avoid it.
Now, as a lifetime member of the coumadin club, I need to avoid aspirin, ibuprofen, most over-the-counter cold remedies, all non-steroidal anti-inflammatories, my vitamin K intake, and I get to get stabbed at least once a month for blood a blood test.
Now, besides talking to your doctor you should make it clear that you want to assess the risk here. You already have one risk which is factor 5V Leiden. You should consider asking about tests for (and if your hematologist is worth his/her salt you should have had these anyway):
G20210A
Protein S
Protein C
Activated Protein C Resistance
Lupus
Cardiolipoprotein (IIRC)
Antithrombin III
If it were me, I wouldn't do it and I'm a stock holder in the company that makes Nuvaring.
posted by plinth at 8:18 PM on December 20, 2005
I don't know about the birth control, but one of my best friends died of a blood clot (pulmonary embolism) at 28. It was 10 years this fall and I miss her every damn day. Although your circumstances are not hers (she had no family risk factor that we knew of and was not on birth control), I wish she were back with me today. She'd tell you to be upfront with the doctors. I will, for her.
posted by GaelFC at 8:19 PM on December 20, 2005
posted by GaelFC at 8:19 PM on December 20, 2005
I think the bottom line is that if you're lying to your doctor, you might as well not go at all. You're putting both lives and careers at risk for stupid reasons. Shit, I don't even lie to my dental hygienist.
posted by Optimus Chyme at 9:13 PM on December 20, 2005
posted by Optimus Chyme at 9:13 PM on December 20, 2005
Don't take the pill with your history. Seriously, just don't. I was on the pill when I had a stroke at age 27. Trust me when I tell you, that is a life experience you should avoid at all costs.
I have an IUD now. A copper Paraguard, no hormones. If you do a search there have been three threads on AskMe about IUDs. I have no children, and am in my mid-30s. It rocks.
posted by astruc at 9:42 PM on December 20, 2005
I have an IUD now. A copper Paraguard, no hormones. If you do a search there have been three threads on AskMe about IUDs. I have no children, and am in my mid-30s. It rocks.
posted by astruc at 9:42 PM on December 20, 2005
Metafilter: Christ Jesus almighty on a hotdog bun.
I really can't offer any more than anyone here has. I'd say dying is a bit more serious than an unwanted pregnancy, in most cases. Sure, you haven't gotten a blood clot YET, but all it takes is for one to settle in your brain and that's it, story over.
posted by antifuse at 2:34 AM on December 21, 2005
I really can't offer any more than anyone here has. I'd say dying is a bit more serious than an unwanted pregnancy, in most cases. Sure, you haven't gotten a blood clot YET, but all it takes is for one to settle in your brain and that's it, story over.
posted by antifuse at 2:34 AM on December 21, 2005
Hmmm.
Decades ago, I lost consciousness and rolled out of a chair onto the floor. I called the doctor, who told me I'd had a stroke and would probably never have another one, don't worry about it. (Yes, medical care was a lot more casual in those days.) Come to think of it, it was during a time I was taking birth control pills. Those were stone age BCP, a lot stronger than they are today. (That's so you won't compare apples and oranges.) It sounds like I was lucky it wasn't something a lot worse.
I think I'd take the attitude that it's fortunate you know you have risk factors, and can make appropriate decisions. knowledge is power, and you have the power here to take good care of yourself.
posted by deep_cover at 5:15 AM on December 21, 2005
Decades ago, I lost consciousness and rolled out of a chair onto the floor. I called the doctor, who told me I'd had a stroke and would probably never have another one, don't worry about it. (Yes, medical care was a lot more casual in those days.) Come to think of it, it was during a time I was taking birth control pills. Those were stone age BCP, a lot stronger than they are today. (That's so you won't compare apples and oranges.) It sounds like I was lucky it wasn't something a lot worse.
I think I'd take the attitude that it's fortunate you know you have risk factors, and can make appropriate decisions. knowledge is power, and you have the power here to take good care of yourself.
posted by deep_cover at 5:15 AM on December 21, 2005
Tell your doctor.
That said (and well covered by other people), I want to elaborate on what Medieval Maven and then scarabic said:
IUDs are far different now than they were in the bad old days
Yes!
I had heard the "IUD's do scary things to women" meme and had never really considered them. But when I had problems with several brands of the Pill, I decided I wanted a non-hormonal solution. Reading the comments of MeFi women who loved their IUD's convinced me to research the option.
When I talked to my doctor she told me that there was just one brand (Daikon Sheild) back in the 70's that caused so many problems and had all the lawsuits and gave IUD's a bad name. But 30 years later, the technology has advanced. The risks are very low - not zero - but substantially less than what the doctors in this thread are suggesting your risks from hormonal birth control are. Of course, they aren't YOUR doctor, and your doctor should have a lot more complete picture of your medical needs. But in order to help you, you doctor needs to have a complete picture.
I ended up deciding to use the copper IUD. I love it. It's a lower failure rate than typical Pill use or typical condom use. I don't have to remember something every day, or always have something with me when I want to have sex. I'm free of the side effects I suffered with hormonal control. And it's super cheap. Now that I've found the method that works for me, I wish I'd considered it years sooner.
Please do not rule out the IUD without looking at current research on currently available IUD's. Here's somewhere to start.
That said (and well covered by other people), I want to elaborate on what Medieval Maven and then scarabic said:
IUDs are far different now than they were in the bad old days
Yes!
I had heard the "IUD's do scary things to women" meme and had never really considered them. But when I had problems with several brands of the Pill, I decided I wanted a non-hormonal solution. Reading the comments of MeFi women who loved their IUD's convinced me to research the option.
When I talked to my doctor she told me that there was just one brand (Daikon Sheild) back in the 70's that caused so many problems and had all the lawsuits and gave IUD's a bad name. But 30 years later, the technology has advanced. The risks are very low - not zero - but substantially less than what the doctors in this thread are suggesting your risks from hormonal birth control are. Of course, they aren't YOUR doctor, and your doctor should have a lot more complete picture of your medical needs. But in order to help you, you doctor needs to have a complete picture.
I ended up deciding to use the copper IUD. I love it. It's a lower failure rate than typical Pill use or typical condom use. I don't have to remember something every day, or always have something with me when I want to have sex. I'm free of the side effects I suffered with hormonal control. And it's super cheap. Now that I've found the method that works for me, I wish I'd considered it years sooner.
Please do not rule out the IUD without looking at current research on currently available IUD's. Here's somewhere to start.
Women with certain medical problems that contraindicate other forms of contraception are actually ideal candidates for IUDs. A history of venous thromboembolism (blood clots), severe blood lipid problems, liver disease, estrogen dependent tumors, poorly controlled hypertension, and even smokers over age 35 would be well advised to strongly consider the IUCD as a form of contraception.posted by raedyn at 7:01 AM on December 21, 2005
I would think if I conceal part of my medical history she would be fine, legally, if something happened to me
Nope. A medical malpractice lawyer will ask her why she didn't question you about every single coagulopathy in existance when taking your history & physical, given the proven and significant connection between oral contraceptives and clot development.
I second the IUD recommendations. I have one (the Mirena) as a childless woman, and I chose it because systemic hormonal birth control makes me feel like I've got uber-PMS all the time. The small amount of progesterone in the Mirena IUD (we're talking micrograms) hasn't produced any of the craziness regular birth control pills did. I've had no mood swings, no breast tenderness, no bloating, no breakouts, no weight gain, nothing.
A joyous side effect: because of the action of progesterone locally on the lining of my uterus, I haven't gotten my period in two years because there's been no endometrial lining build-up to shed. It's the best thing ever. I couldn't possibly overstate the positive effect this IUD has had on my quality of life.
posted by jesourie at 7:06 AM on December 21, 2005
Nope. A medical malpractice lawyer will ask her why she didn't question you about every single coagulopathy in existance when taking your history & physical, given the proven and significant connection between oral contraceptives and clot development.
I second the IUD recommendations. I have one (the Mirena) as a childless woman, and I chose it because systemic hormonal birth control makes me feel like I've got uber-PMS all the time. The small amount of progesterone in the Mirena IUD (we're talking micrograms) hasn't produced any of the craziness regular birth control pills did. I've had no mood swings, no breast tenderness, no bloating, no breakouts, no weight gain, nothing.
A joyous side effect: because of the action of progesterone locally on the lining of my uterus, I haven't gotten my period in two years because there's been no endometrial lining build-up to shed. It's the best thing ever. I couldn't possibly overstate the positive effect this IUD has had on my quality of life.
posted by jesourie at 7:06 AM on December 21, 2005
No, no, no, no, no! The form of hormone (desogestrel) in Nuvaring is novel, and it actually may increase the chances of blood clots and other side effects. Nuvaring hasn't been completely studied for side effects because it's so new on the market. Given the recent fiasco with the patch, I would be especially wary of both new delivery forms of hormal contraceptives and new hormones.
posted by footnote at 7:12 AM on December 21, 2005
posted by footnote at 7:12 AM on December 21, 2005
Also, it's cool to hear from IUD supporters on this thread -- I think it's the ideal form of birth control.
posted by footnote at 7:14 AM on December 21, 2005
posted by footnote at 7:14 AM on December 21, 2005
scarabic: I think some level of risk is acceptable to me, if I can be convinced that the patient really understands what they're getting into.
For example, a 5% elevation of the risk of clot is not the same as a 5% risk of clot per year on OCPs, and I think people who are confused about what the difference between those statistics might mean do not get to gamble in my prescription-pad casino.
On the other hand, I'll prescribe a nicotine patch for folks who are hospitalized under my care, for their comfort - only after they understand that it's not a safe alternative to smoking and that it carries risks without health benefits.
I cause it to occur that some of my epilepsy patients lose their driver's licenses, because that's state law here in CA and because neither I nor anyone else on the road wants to share the road with someone who can lose consciousness without warning.
However, I tell the same patients, "You shouldn't ride a bike, sit on the roof, or swim in the ocean without understanding that a seizure in that setting should kill you."
I am fully aware that patients will do whatever they please; I view my role as being a person who is going to give reliable, sound advice that they could use to maximize their health outcomes if they so chose. I try to be flexible enough and smart enough that I could work with my patients so that my concerns could dovetail with their choices in most cases.
I also find that talking to my patients, educating them as to why I feel as I do, often changes their mind. For instance, after reading plinth's comment above, how could anyone in their right mind compare the risks of a pregnancy to the risks of a leg DVT?
I've had a patient with serious leg DVT's have his clot break up and travel to the right ventricle of his heart, lodging in the tricuspid valve; a heart surgeon then had to crack his chest and cut his heart open to pull the clot out. Is that an 'acceptable risk'? No.
posted by ikkyu2 at 9:18 AM on December 21, 2005
For example, a 5% elevation of the risk of clot is not the same as a 5% risk of clot per year on OCPs, and I think people who are confused about what the difference between those statistics might mean do not get to gamble in my prescription-pad casino.
On the other hand, I'll prescribe a nicotine patch for folks who are hospitalized under my care, for their comfort - only after they understand that it's not a safe alternative to smoking and that it carries risks without health benefits.
I cause it to occur that some of my epilepsy patients lose their driver's licenses, because that's state law here in CA and because neither I nor anyone else on the road wants to share the road with someone who can lose consciousness without warning.
However, I tell the same patients, "You shouldn't ride a bike, sit on the roof, or swim in the ocean without understanding that a seizure in that setting should kill you."
I am fully aware that patients will do whatever they please; I view my role as being a person who is going to give reliable, sound advice that they could use to maximize their health outcomes if they so chose. I try to be flexible enough and smart enough that I could work with my patients so that my concerns could dovetail with their choices in most cases.
I also find that talking to my patients, educating them as to why I feel as I do, often changes their mind. For instance, after reading plinth's comment above, how could anyone in their right mind compare the risks of a pregnancy to the risks of a leg DVT?
I've had a patient with serious leg DVT's have his clot break up and travel to the right ventricle of his heart, lodging in the tricuspid valve; a heart surgeon then had to crack his chest and cut his heart open to pull the clot out. Is that an 'acceptable risk'? No.
posted by ikkyu2 at 9:18 AM on December 21, 2005
I think an important thing to keep in mind is that while most of us rationally understand that we're at some level or other of "risk", it is very common for people to not really believe they're at risk. I was disabused of this notion at 26 when I was diagnosed with cancer, but I can say with certainty that before that I just did not really "get" health risks. They were abstract, and on some level happened to people on made-for-TV-movies or something, not to me.
The thing about an experienced physician is that they will believe the risk. They have seen it happen to someone just as young/healthy/normal/etc as you. They have seen people die from things which invariably started out as minor issues - a funny cough, a lump on the neck, an ache in the leg. They have also seen people freak out over nothing or be cured and live to 100, etc. But the point is, they have a good sample size, and a real sense of what is or isn't a risk. You don't. Give the MD all the facts, and listen to her judgment. If you strongly disagree, find a second opinion. But if every doctor comes to the same conclusion, there's a reason for it.
posted by mdn at 11:50 AM on December 21, 2005
The thing about an experienced physician is that they will believe the risk. They have seen it happen to someone just as young/healthy/normal/etc as you. They have seen people die from things which invariably started out as minor issues - a funny cough, a lump on the neck, an ache in the leg. They have also seen people freak out over nothing or be cured and live to 100, etc. But the point is, they have a good sample size, and a real sense of what is or isn't a risk. You don't. Give the MD all the facts, and listen to her judgment. If you strongly disagree, find a second opinion. But if every doctor comes to the same conclusion, there's a reason for it.
posted by mdn at 11:50 AM on December 21, 2005
This thread is closed to new comments.
posted by delmoi at 4:55 PM on December 20, 2005