Deep Vein Thrombosis (DVT) Support Group

Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.

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Specialist or Family Doctor?

Hello all! I thought I'd start a new thread here with this question. I am 4 months post DVT diagnoses in my left arm. I have been seeing my family doctor for treatment. She told me early on that I could see a specialist if I wanted to at any time, but that she was consulting with one for my case. So, I've left it at that. My family is concerned that my doctor isn't doing enough for me and wants me to see a specialist. I am thinking that I might need to see one, too. Do you guys see a specialist or just let your family doctor handle your treatment?

Replies

rmb
rmb

For both my DVTs, I saw my primary care doctor, an Internist. I did consult with a hematologist just to see if there was any insight into why I clotted, but otherwise, I didnt feel it necessary to see someone else for treatment.

At this point, I'm not sure if it would change anything for you in terms of recovery but it may be something to revisit with your primary doc if you feel you need someone to reevaluate your arm.

TossNTurn gave a good response to a similar question on the Pulmonary Embolism group which is to consider what you expect to get out of a visit with a specialist.

There may be value in seeing someone if you arent getting answers from your primary doc, or if theres a complexity to your case you feel your primary doc isnt able to handle, or you just want to hear the information from someone who has more expertise in the matter.

My approach has been to see the fewest number of doctors possible, for my own sanity but that's me.
TossNTurn
TossNTurn

I've pretty much just stuck with my family doctor as well. She's available quickly in an emergency and has always been extremely responsive to my needs.

I have, at times, been referred to a hematologist, pulmonologist, and cardiologist, but usually only if I had some sort of exacerbated symptom that we didn't understand or (like RMB) to get tested for clotting disorders. Never turned up anything and haven't seen any of them again past the original testing/results phase. With me personally, the last thing I want is more doctor's appointments.

Here's the thing...lot's of us seem to think that there must be MORE to this recovery thing. But, really, there isn't much more than taking your meds and wearing compression clothes (if possible). It's not like hematologists have got some secret trick to recovery that they aren't telling the other doctors.

Of course, if I remember, you're having increased pain and swelling and it didn't sound like your regular doc was really addressing that. If that's the case, and you think a second opinion might be in order, then go for it. But, really, have a clear idea what you're hoping to get out of the appointment and go in with a list of questions you'd like answers to. Being prepared will help you feel like you're getting the most out of your appointment, for sure.
sandysan5743
sandysan5743

I've seen my Family Doc, a Hematologist, a Cardiologist and a Stroke Specialist. My last visit with my Family Doc I told her - "no more". I will not see another specialist!! They don't communicate with one another. They all have different things to say. The confusion is overwhelming. I don't know how your Family Doc is handling your situation. What is your treatment?
rmb
rmb

But I think your case, Sandy, is a bit more complex than that of the average bear.
deleted_user
deleted_user

I see my family Dr, internist for my dvt. I see a rheumatologist for my raynauds and tested me for clotting disorders as did my internist. None found. My family keeps saying to go to specialist too but I think I 'll wait a little longer to see how things go. best answer is time will tell. I'm 4 months out too with dvt in my right leg and still in alot of pain, I work 6 days a week on my feet and that may be why. Swimming and hot tub help me with pain.

Stay gold. Hang in there I'm right there with you.
deleted_user
deleted_user

I see my primary, a vascular, a hematologist and an interventional radiologist. But I had a pretty complex case -- May-Thurner Syndrome with a case of Heparin-Induced Thrombocytopenia Type II on top of it. And I "gathered" all my doctors because I did end up in the hospital for a month over my DVTs. My doctors do seem to communicate with each other. But I will say, they do sometimes tell me different things. I "trust" my interventional radiologist the most because he specializes in DVTs. And generally my primary just follows my case and does not do much input on what is going on with the DVT.

But I would second what TossNTurn said, if you do go to a specialist -- have a list of questions. I would also say make sure they have all your records, even if you have to carry them in yourself. That would include your Dopplers/ultrasounds if you go to a interventional radiologist or vascular surgeon.
Brooklin
Brooklin

I would seek the advice of a specialist. I loved my internist but when I was diagnosed with my second DVT last November I felt that she could have done a better job. For instance, she never once told me to take Warfarin in the evening. I had a bleeding incident and it would have been very helpful if I had not taken the Warfarin first thing in the morning because I ended up bleeding internally for three whole days.
This doctor is sought after in our neighborhood and I do believe she sees way too many patients and I suffered for that.
There were other "sins of omission" but I am now living in a different state and the doctors here are fantastic. I saw a hemotologist as soon as I got here and I am quite satisifed with her.
So, just for peace of mind, see a specialist!
rmb
rmb

Well I think sometimes it's not a matter of what kind of doctor you see, but finding one who is on the ball and that you feel like you're in a partnership with. My first Internist was crap with the INR management for instance. My second and current Internist is excellent with it. It's not always that a specialist can do it better. It's sometimes that you outgrow your current primary doc now that you've had a serious health issue.
deleted_user
deleted_user

Now I am confused. First I was treated by a Cardiologist and two months later he referred me to a vascular surgeon. I have been thinking that I am seeing a specialist specialized in the study of veins. Now I hear about Internal radiologist and hematologist.

So who is the "specialist" that I am supposed to see now?
deleted_user
deleted_user

Sandysan5743, my treatment is just taking warfarin for at least 6 months. I think there was genetic testing done, but I'm not sure. My memory is pretty crappy, lol. So I can't remember if she said that there was genetic testing done. If I don't write it down right away, then it's gone. :) I did just have cholesterol and thyroid blood testing done last week. I go in to see the doctor tomorrow to go over the results and to talk with her about my increased pressure, constant swelling, some pain, and more bruising in my DVT arm. She has been right on top of my INR this whole time, so I'm happy with that. I'm just not happy with how my arm is doing. I don't know if more can be done to get the circulation to improve, or if I just have to be patient and wait.

Thanks for the awesome feedback! It gives me something to think about. :) I do hate all the doctor appointments. More doctors means more appointments...but I want to make sure that everything is being done that can be done.

Now, time to work on that list of questions for my doctor. :)
deleted_user
deleted_user

San455, a hematologist will check to see if you have an underlying genetic reason to clot. They will also check into the possibility of lupus and a few other things. If you are on a blood thinner that requires close monitoring they may also do that. You normally cannot get accurate genetic testing when on Warfarin -- usually need to be off it or 3 weeks. Xarelto can also interfere with accurate testing.

When you are first diagnosed with a DVT a vascular surgeon or interventional radiologist might decide that you need a thrombectomy to remove your blood clot. Both professions do this.

As a side note, There have been some very recent studies to suggest that maybe even small blood clots should be removed surgically and that there should be less reliance in having the body do it. But these are recent studies, and around half the people with blood clots do dissolve blood clots completely without surgical intervention. Right now, in the United States, there is a large study called the Attract Study funded the NIH that is looking into the benefit of expanding the use of surgical intervention. To have a thrombectomy or not to have a thrombectomy still varies from doctor to doctor.

If you have a blood clot older than 6 months (sometimes 3 months even) then patients are often told nothing more can be done surgically This is because the clots are hard and attached to the vein wall. Even most vascular surgeons seem to say this. I was told by my vascular surgeon that nothing more could be done. But there are some interventional radiologists that have shown in some very recent studies that these clots can be removed and that patients show marked reduction in swelling, pain and other symptoms. I wished to pursue the removal of my chronic clots, so I went to an interventional radiologist.

So part of who you would see depends on your symptoms and also what you are willing to accept or do. Some people would have found the swelling and pain I had acceptable and not have pursued more surgery. I had a fear (maybe even irrational) of eventually ending up with very severe PTS so I decided I wanted more surgery and I wanted my chronic clots out.

My advise for anyone would be is that if you are concerned things are not going the way it should and your doctor is not being open to your concern then get a second opinion. Either from a specialist or from another internist. If you have insurance you are just out your copay and some time. And even if the new doctor says what the original doctor said, then you hopefully will have some peace of mind that all is being done that should be done. That peace of mind could be priceless.
rmb
rmb

April, sometimes too the more doctors involved, the more you start to think more is wrong with you too.

San, not everyone who has had a clot sees a hematologist. People usually see a hematologist when there's no explanation for their clots. You have an explanation- lack of mobility. Sometimes the specialists are called when a specific condition is suspected, like MayThurner. An interventional radiologist is one who performs vascular procedures, ie inserts vena cava filters, catheters etc. I don't know that you need that, considering your clot is resolved, from what I remember you saying.
rmb
rmb

I also don't think people who've not see 60 specialists should feel like they have received substandard care. Everyone's clot situation can vary in severity and the extent in which specialists are needed.

First and foremost, be comfortable and confident in your primary care doctor or whomever is treating the DVT. If not, then find a new doc, and work together to get a plan in place for your care, any specialist needs, etc. Just going from one specialist to another without knowing what your needs really are is often a waste of time and money. Hone in on what you are hoping to gain from seeing a specialist. And I say this as a someone who has a hematologist and a cardiologist due to my clots. So it's not that I object to seeing a specialist, but I think it involves some rational thinking as well. Just my two cents of course.
deleted_user
deleted_user

Aicirtapj, thank you for all the information you provided. That is great. As I was reading it, I got more bummed when you said that the clots are usually removed before 3 months. But then I remembered that one of the doctors in the hospital said that it couldn't be removed because of its location in my arm and being too close to my lungs. It was too dangerous.

My family doctor told me that there was no known cause of my clot, and that most people never find out why they got one. She also told me that if I was to develop another one in the future, then I would be taking warfarin permanently. I've never been one to like that kind of an answer. I like to be in control and know what is happening all the time. It's a struggle that I battle with all the time. But, I'm trying to be patient through this.

Thanks for the advice rmb. I just might seek a second opinion, just for piece of mind. :)
deleted_user
deleted_user

I know what you mean about the control. That is one of the worst things in the beginning is the feeling of not having control and that somehow your body betrayed you. I'm not one for drugs either (I actually refused pain meds the first 48 hours in the hospital), but sometimes I think we should all be given Valium or something else to keep us calm because of all the worry we seem to have as our bodies heal. It is the one thing our doctors don't ask us about very often -- how we are holding up. I'm using Xarelto now, but my goal is to get off it so I don't have to worry about falling down the stairs or slipping in the shower -- I can be a klutz sometimes.

And even if the clot is still there your body can build collateral veins and your arm can go back to normal. When I got out of the hospital my right leg felt worse than my left. My right leg feels normal now and it still has clots. So see, every DVT is different, even on the same person at the same time. And 4 months still gives you plenty of time to heal more. I saw a big difference from 3 months to 6 months.

rmb is right. You really do have to trust your doctor and come up with a plan. I only ended up with all my specialists because I gathered them at the hospital and I really didn't have a choice. I had a crazy complex case - with one thing going wrong after the other. Even with the interventional radiologist, the only one I gathered outside the hospital, I went to with very specific goals and with the support of my vascular surgeon. And I knew from the beginning that the IR couldn't make my leg normal again. What he did do was give me a new "normal" I can live with. My husband and I were discussing our Fall vacation this morning and we were discussing what limitations I might have. And I told him I may never be able to climb to the top of St. Paul's again, but I can still easily get to the whispering gallery and I can still stroll the streets of London so that is good enough.