I get what he's saying but I do think just assuming you have a genetic clotting factor and that the tests will cause anxiety are not reasons to not order a test. The reason to not order a test should be for medical necessity reasons, not that he thinks it makes people anxious or based on his assumptions. I mean there are so many of us who could have swore we had a genetic clotting factor and yet everything is normal. To a degree that does make you feel a little crazy, but then you have to accept that it may never be known.

The tests are expensive and so in some cases, depending on the country's health care system, even those that require some type of insurance but have a national health care program, cost may factor into those decisions, but I don't know.

However, I understand him not ordering the tests if his recommendation is to be on life long anticoagulation because it's true. The treatment would be the same. Do you need a hema to order these tests or can another doctor order them for you?

I'm sorry you had a visit like this where you just leave frustrated and dismissed. Sometimes though in order to get closure, we have to do that ourselves, take things for what they are and decide to move on from it. It's hard, I know. But I see so many people here chasing an answers, going doctor to doctor and I honestly think it holds people back in a lot of ways. So I would say, pursue answers to the extent it doesn't keep you stuck.

rmb, thank for your answer.

Sorry, I have not mentioned that the therapeutic recommendation for me was to stop taking blood thinners after these 6 months. This is also why I think that taking the tests is the best thing to do, since we don't know for sure that the pill was the only cause.

When I spoke to my GP during my recovery a couple of months ago, he told me that for the screening he would need to refer me to a hematologist. However, after this appointment, I would like to ask him if he can do the prescription directly. Another thing I plan on doing is speaking with somebody at the DVT/PE clinic where I am an outpatient.

If I then receive "no" and "no" again, I think I will go back to my own country for the screening, although there I will have to pay for it in its entirety.

Yeah I don't know that I'd left that appointment feeling any sort of satisfaction either. I mean if his protocol is to not test, so be it, but the reasons given kind of make you scratch your head.

I hope you get some answers and some peace of mind.

It does sound like a frustrating appointment. I'm the opposite camp right now, myself, in that I've had several doctors suggest a screening for a different type of genetic issue (related to cancer) and I've been resisting doing it.

However, that being said, I have done all the thrombophilia screenings three times with two different doctors (my GP once and a hema twice) and I've been negative for everything.

Personally, I don't think it is up to the doctor to decide what will and won't stress you out. He doesn't know you and maybe you're the type of person who wants facts to work with, not conjecture. Totally ridiculous for him to refuse to order it based on how he thinks you'll wind up feeling in the long run. Why should it matter to him? He's not you and he's not paying for it. I'm with you in feeling annoyed and irritated.

Also, he really hasn't dealt with many clot patients if he thinks not knowing means you won't be anxious. Many of us feel stalked by the possibility of clots and clotting and knowing/not knowing won't change that part.

Also, for many people (especially those with children or who are planning to have children), knowing about a genetic issue can be a really big deal. It means they can be much more proactive going into dangerous situations (long trips, surgery, pregnancy) and make sure that their family is aware of a possible genetic issue that could affect them. Also, I think doctors in general are more proactive if you can come in and say "I have Factor V" versus "I get blood clots." They generally respond well to facts and should be more mindful of helping you avoid more clots.

I mean, yes, you might come back negative on everything and you would have to just look at the BC as your cause, but then you'd have that information to work with. It could help you move forward and accept everything that has happened. And he's somehow feeling righteous in throwing a stick in all that.

I think your plan of action is a good one. Check with your GP and check with your DVT/PE clinic. Hopefully, you can come up with a plan that you are comfortable with. Best of luck to you!

I think it's a good plan to have the tests done, in spite of what your hematologist said. Thank goodness my GP didn't have that kind of attitude. The plan was for me to go off warfarin after three months. Because I have a family history of DVTs, she agreed with me to do the screening. I never saw a hematologist, she ordered the tests and then consulted with a hematologist after the results . She told me before testing that she was fairly confident that I probably didn't have a strong thrombophilia, since I didn't clot till I was over age 60. It turned out that have 2 copies of FVL, which means I'll be on warfarin, "indefinitely". Being homozygous FVL is very uncommon, as opposed to having a single copy FVL. I'm so glad that I had the testing done. Would I have been a little anxious if I somehow could've had this info before I clotted? Maybe, but then knowing that I had a thrombophilia, probably would've made me think twice before driving 13 hours, to get home because I really missed my cat. : )

That seems so silly to me. I would like to know for sure. I suppose if the treatments are the same, it technically doesn't matter but for my own piece of mind I need to know what's going on with my body.

I agree with what the others have said. Before I got my screenings, I was nervous all the time about if I had genetic problems. If they came back positive, I was fine with that; I would know how to take care of myself. If they came back negative, that's awesome! Luckily they came back negative, but either way, the screenings just sort of help with closure and getting more information. I wish you luck!

Thanks everybody for your support.

Later this week I will go to my GP and ask him what he thinks about what the hematologist said and whether he can prescribe the screening himself. I will let you know!

Getting the screening is beneficial for others in your family as well. While in the hospital with my PE they did the testing and I have Factor V Leiden. I quickly let all my female cousins know so that they can make decisions regarding birth control. I wlll also have my daughter tested when she is older so that she can make informed decisions regarding birth control, as well. Keep trying to get the testing!

Thanks brittgilla.

I had a bit of a trouble with the prescription of the screening. I became completely dissatisfied with the Dutch health system, also after hearing experiences that other people had (related to other kinds of illnesses).

To make a long story short, I did go to my GP after writing my last message here and he was fine with prescribing the screening. He told me that first he wanted to consult another hematologist to have the most correct list of tests.

For some reason he got in touch with an hematologist that works with the very same one that would not allow me to get tested. One day before the appointment in which I was supposed to pick up the prescription, the GP wrote me an e-mail writing that he could not make a prescription for me because it would go against an expert's advice and that he was sorry for that.
I replied that I was not happy with the way my case was being handled and that I would consult a specialist in my country anyway.
My sister is a medical trainee, and every colleague kept on telling me that it was absurd I could not get tested in the country I currently live in.

A few days after I took my boyfriend to the GP because he fell and hit his head (nothing serious luckily). I did not even talk about my issues, but suddenly the doctor said he was very sorry for the reply he gave me and decided to give me a prescription for these tests: factor V Leiden, lupus anticoagulant, APC, anticardiolipin antibodies and antithrombin III deficiency. He said that this list is incomplete and we agreed that after my (second) hematological consult in December we will make the necessary adjustments.

What I am seeing is that many physicians really do not know how to deal with patients on the psychological side. Probably they have no idea about how bad it is when they take away from you the right to decide what is best for yourself. Fighting so hard for a "stupid" thing like a blood test made me feel stressed and frustrated, but nobody seemed to care.

Well, the good thing is you're getting somewhere and it does sound like your GP is trying to make things right and the fact that he did apologize is AMAZING. That doesn't happen every day.

I agree that some doctors could be more sensitive to the psychological side of things but I think that's a tall order when they're really putting their clinical training and expertise first, which they should. I bet some probably think, if a patient is stressed and having a hard time mentally or emotionally about the recommendation, the patient should see a therapist. But I do know a lot of doctors who are sensitive to the emotional side of health care. I have to say, my current doctors (my internist and my GI doc) are both very good at listening to me about my concerns and fears and involve me in some decision making, but not always. There are times where they take a hard line, but at least they explain to me why they're taking the approach they're taking. And so at least if I'm heard and I can get my mind around it, I'm ok.

The tests you're requesting are expensive so if you're using a health care system that is cost containment based, which I suspect most national health care systems are, then this may be what people are up against. Health care utilization is super costly when you look at it not on an individual basis, but by population. So I'm sure that plays in a role in some of the decision making, particularly if the test or procedure isn't deemed medically necessary.

Anyway, sorry. I work in the insurance regulatory industry in the US so I'm talking way too much shop here.

Glad you made some progress on this!

rmb, thanks for your reply.

i have a private health insurance that covers the expenses (I have already consumed my "own risk" for this year). Such insurances are compulsory here in the Netherlands.

I went for my tests last Thursday, results will come in 3 weeks or so.
On Dec 30th I will see an hematologist in Italy and see whether he advises further testing, so that I can (hopefully) complete the screening once I get back to the Netherlands.