Subclavian clot in 24 year old ?coumadin dose and shortness of breath

My daughter developed a clot in her right subclavian vein and is on 10mg Coumadin a day. She has shortness of breath that is quite severe for an athlete. Has anyone else around her age experienced extreme shortness of breath? Her tests have all been normal so it's looking like an Effort-induced Thrombosis (Paget Schroetter Syndrome). She has had lots of tests to make sure it hasn't travelled to her lung so everything is pointing to it being just a side effect of the high dose of Coumadin. Has anyone else had this type of clot and how long were you on Coumadin? Thanks.

Kim, how did they find the clot -- what symptoms was she having? Have they done a CT of her body or just where they found the clot?

Hi Laurie..she was swimming (training for a triathlon) and her arm swelled. The clot was found on ultrasound. CT scans were all normal (just chest/neck/shoulder areas were done though) except this clot in her subclavian vein, under her collarbone. Her INRs are stable on the 10mg but four weeks post-diagnosis she is having such shortness of breath and pressure on her chest that she had some extra testing and repeats of the original tests. Everything is normal but she has some extra fluid in the affected arm/neck area. The pressure is probably due to the extra fluid. We are confident the diagnosis is correct and that nothing else is going on. The question really is whether others her age and fitness level experience this shortness of breath, whether or not they were able to adjust to the high dose of coumadin, and how long they had to stay on coumadin post-diagnosis. The side effects are presumably mostly based on older people who take much lower doses of coumadin. As a Lab Technologist most of the INRs I do are on people taking 1.5-2.5mg coumadin a day, not 10mg! The clot is under the collarbone she broke 11 years ago in hockey...I've seen that listed as a possible cause, bony protrusions due to the healed fracture causing injury to the subclavian vein. Any idea how she can help reduce the fluid acumulation on that side? I've read some of your other posts and know you have the background experience with this, what do you think?

Kim, the only way I know to help rid the body of fluid is by moving around - however, with a clot, you must speak to her doctor to see what activity she can do -- it will depend on the clot- where it is located and if it is lodged or if it can move. Your body also over time will try to rid itself of extra fluid but because it is in a main vein it will take longer. The shortness of breath she is experiencing is most likely due to where the vein is located - it is hard to describe but blood is collected into the subclavian vein through other arteries that supply blood to the muscles surrounding the areas your daughter injured - therefore it could be that the blood is having a hard time getting thru and back to the heart which can cause her to be short of breath. I am no expert here - but this is what I am thinking from how I remember the body works-- I would recommend you speak with a specialist though because I dont know enough about the circulation of all the veins and arteries. I hope this helps a little and if I can help you more let me know but it will take some research :)

Thanks, Laurie. We are waiting to see a specialist but the appointment isn't until Dec 11. I was hoping there would be others in her position who had first-hand experience with high doses like this. She has trouble concentrating and feels her brain is a bit "fuzzy" in addition to this shortness of breath. Young people need much higher doses of coumadin to stay therapeutic so we are assuming it is from this. Everything I have found on the internet seems to point to the high dose as the cause. It isn't listed as a side effect because the overwhelmingly vast majority of people taking coumadin are elderly and take much smaller doses. I am trying to find if there is a study done on side effects among young (under 25 years old) users of Coumadin, or those taking doses above 10mg per day.

Kim, actually, the dose has nothing to do with it. There are many people young and old on high doses and the same with low doses. It is based on how your body metabolizes the medication. I have had alot of experience with managing coumadin and it really has nothing to do with the age of a person to what dose they need. Hope that gives you some reassurance that her dose may appear high but I have had young and old on a lot higher doses and the same on very low doses. I am wondering if the fuzzy feeling she is having is due to the amount of oxygen supply -- if she gets tired or fatigued, ask your doctor to make sure to run a CBC to make sure she has enough oxygen in her blood.

Hi Laurie...I do understand the dosing has to do with how you metabolise the Coumadin, and how much Vitamin K is in your diet, and whether or not you are on antibiotics and have sterilised your gut, etc. As a Lab Technologist I have been running INRs and PTs before that for 31 years. All of the extra testing has been done...echcardiogram normal, x-rays normal...ultrasounds normal...and as Momma Lab Tech made sure, she's had blood work within an inch of her life...all normal!! Everything has been ruled out except anecdotal evidence here and there on the internet that high doses lead to these symptoms.

I am 25 and have the exact same condition. I take 7.5 coumadin/day and I am experienceing the same symptoms that your daughter is.

I have had subclavian DVT's on both sides. The first one at age 29 and the other at age 34. My Coumadin dosage is 12.5 mg a day. I have been on this dosage for 5 years with no problem. As long as the INR stays within range, the higher dosage shouldn't be a worry.

I think people do have side effects from Coumadin, in general that doctors don't always believe. It's not a problem now but when I first started it, I had a great deal of fatigue in my legs. Plus it makes menstrual cycles a real joy---NOT!

Forgot to say . . I think the average Coumadin dosage is about 5 or 6 mg.

Was surgically removing the clot an option given?

Update - after 10 months of specialists we finally have confirmation of what we found by Googling within the first hour of being told there was a clot. My daughter has Venous Thoracic Outlet Syndrome, also known as Paget Schroetter Syndrome and effort thrombosis. Her sub-clavian clot was caused by compression due to her first rib. She is waiting for consultation with a surgeon and removal of the rib. This is a very rare condition and so far none of the Hematologists she saw had ever heard of it. We finally got fed up and e-mailed the medical journal papers to the Hematologist and they admitted they had never heard of this condition. It is easily diagnosed once the condition is recognized. If anyone else has this ask for a positional venogram and positional MRI. Surgical removal of the clot isn't necessary, the medical evidence demonstrates that once the compression is reduced the vein will open.

Hi Kim, I'm interested in the outcome of your daughter's rib ressection; how you found a specialist for this procedure; and how you got comfortable that this was the right treatment. Have you tried any other treatments besides anti-coagulants?

Hi Annie...we found article after article online that says this is the right thing to do. I must stress, however, that she has been tested for abnormal clotting factors and hers are all normal. She developed this one-inch partially occlusive clot while swimming, a sport new to her since she normally was too busy with other sports to have time. In this case she was training for a triathlon so the swimming was prolonged and vigorous. Three months later she was cleared to resume non-contact sports and she started rowing. The clot returned, same size, same place but fully occlusive. When we finally e-mailed the articles and asked for the proper testing (positional contrast venogram and positional MRI) the Radiologist doing the venogram told her during the procedure that her first rib was compressing the vein and had she considered the available surgery!! Yikes, considered it? She'd been trying for almost a year to get someone to believe it was the thing to do! With those two tests she was referred to a surgeon who has done about 200 of these rib resections. All of the articles we read said that without removing the cause of the compression the clot will return, the shoulder will become progressively more debilitated, and eventually the nerves will become damaged, and the patient may no longer be able to use the arm. With proper surgery the compression is removed and in almost every case no matter how badly damaged the vein was it will re-open, the shoulder will return to normal and the risk of re-thrombosis becomes zero. Most of the research was done in Dallas by Dr. Urschel over the past 50 years and he has followed patients a long time to be able to state that! Most other treatments cause more harm that good so my daughter hasn't tried any of them. We are fortunate to both be in the medical field so we have access to two big medical school's libraries. This condition is called Paget-Schoetter Syndrome and largely affects young, healthy athletes. Again, you have to rule out the abnormal clotting factors first but if they are normal it's wise to have these positional test done. Positional shows what is causing the compression. In my daughter's case she has no pulse when her arm is over her head. The veins and arteries are completely closed off between the collarbone and the first rib. We were lucky in getting her referred to the right guy first time (hopefully) but I have been haunting the American Thoracic Outlet Forum to find suitable other surgeons if this guy wasn't one. Surgery is scheduled for the first week of December!

i had a blood clot in my right subclavian artery out of the blue only thing i know was that the tip of my finger on my right hand turned black

i had a bypass of the artery to save my right hand but 5 hrs after op i had a clot in the same place dont know why i had clot but i am on warfarin for life

Hi, I am 27 years old right now. At the age of 25, I developed a blood clot in my groin area that traveled to my right lower lung. Thankfully, I felt it with shortness of breath and severe pain. I was on coumadin at 15 mg a day for 6 months, but was never therapuetic. In February 2009, I gave birth to my baby boy and developed another blood clot in my right lung. I am now on 16 mg of of Coumadin and still never within the right ranges. I have developed 2 more clots, one in my right leg and one in my lung, while on the coumadin. I am now in the process of trying to get some diagnostic assistance to try to figure out why this is still happening, why I am never therapuetic and why there is no REASON for any of this. The doctor's just keep saying they don't know why it is happening this way, but there has to be a reason. I know it is frustrating. The shortness of breath is not from the Coumadin. It has to be from something else. I have continued shortness of breath, but it is likely from scarring from the clots. I would have to say that your daughter probably had a clot at some point that traveled to her lung and was taken care of by the blood thinners. She likely has residual shortness of breath from the scarring. That is the only thing I can think of and only because that is what has happened to me. It is a scary thing, especially when it happens to young people. I can tell you this all started because of BIRTH CONTROL in me. They are the worst things for young people. It raises the amount of estrogen in the system and causes clotting problems, especially when we are already prone to it. However, we never know until it happens whether we are prone or not.

Hi Leyna...I'm sorry that you are going through this too. In my daughter's case her clots were caused by compression in her shoulder and she is having surgery in December to relieve the compression. Her scans for lung clots were all negative so we think it must have been something else causing the shortness of breath. You need to have the full coagulation workup to see if you have any abnormal factors in your blood.
In your case with the INR not being therapeutic...it has a lot to do with what you eat. They say eat normally and they will dose around your diet but it can be really variable. The therapeutic levels are really affected by leafy green vegetables and alcohol. If my daughter has a couple of beer/wine her INR will be high the next day. If she has those same drinks with a big salad she's fine. Likewise if she has the big salad and no alcohol her INR will be low. The best list of Vitamin K foods we found was at: http://www.nal.usda.gov/fnic/foodcomp/Data/SR...
It has actual numbers rather than the very vague "High, Medium, Low" designation usually given.
I hope you find an answer...it's no good to think of Coumadin for life.

I am 27yrs old and have got a blood clot in my right subclavian artery. Blood test is being done to determine if I have tendency of developing clot. i never have such problem before. Am on warfarin. I don't have any heart problem. Wonder how I got this...

Update - my daughter had her surgery and it was completely successful! The surgeon removed her first rib and one of the muscles. She is 6 weeks post op and said her shoulder feels better now than it has in a year. She is also off Coumadin and feels completely re-energised!
Nazir, have you asked about the positional testing to see if it is caused by compression?

My son is in hospital with symptoms that suggest a sub clavian thrombosis. Dizziness pain in left arm cold fingers with pins and needles, chest pain ectopic beats different blood pressre in one arm to the other. He has had a positive d dimer test and ct scan which says no pulmonary embolism.
They have done a treadmill test which shows ectopic beats. He has suffered a major headache during hte night. pain through shoulder up neck into head.
They are supposed to be sending him home saying he has flu. He had a very bad collar bone break some years ago with surgery for that and a shoulder reconstruction, My feelings are that he has a sub clavian thrombosis. Anybody think this might be so.

They have not done a doppler test.