Discussions By Condition: I cannot get a diagnosis.

Unexplained blood clots (DVT/PE)

Posted In: I cannot get a diagnosis. 24 Replies
  • Posted By: Anonymous
  • June 21, 2007
  • 09:50 PM

Hi. I am a normally healthy 35 year old female who has just gotten her second deep vein thrombosis (blood clot) in calf and eventtually a PE (pulmonary embolism). The doctors cannot explain why I am getting these. All of my blood tests are in the normal range and I am testing negative for all of the many blood mutation factors that are possible. I am scared because there are so many "bad" diseases out there that can cause blood clots, but I have otherwise felt healthy. The doctors cannot explain it. I am not on Coumadin, the dreaded bloodthinner, for the rest of my life. Has anyone out there experience an unxplained blood clot(s) without any explanation for why it started? Any info will be greatly appreciated! Please email.
Kerri

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24 Replies:

  • hi i am 53 i have had 2 dvts and 1 clot on the lung my first was when i was 19 and the second dvt 10 years later and then 5 years ago 1 on the lungs i am on 7 mg of warfrin to thin my blood i have had all the test but all are normal i donot know why this happens to me , i must say you are not alone there are many people like us that are never given an explanation mybe some day someone will find the cause , some days it gets me down because of all the blood test every 2 weeks for most of my life, but keep your chin up best wishes mary
    Anonymous 42789 Replies Flag this Response
  • Hi...same here. Extensive left leg DVT for no reason (I did smoke cigs) at age 30. All tests normal except a very borderline elevated Igg Anticardiolipin Antibodies result that was not considered significant. Warfarin for a year. Repeated tests off warfarin and everything was normal. After 3 years off warfarin, extensive clot in right leg into liver. Had thromboectomy which was quite an improvement over the previous treatment of just anticoagulation. All tests rerun. Warfarin for life. Went to Mayo for second look and got diagnosis of "Hypercoaguable State of undetermined origin". To make matters worse, for some reason my body chews through warfarin at 15-17.5 mg a day to maintain an INR of 2.0-3.5. Yeah constant blood tests are rough to accept but they keep you alive. Hopefully, as more people succumb to this new and somewhat rare disease, there will be better medicines developed and better science to understand the root cause. I personally beleive that I would be dead if blood clots weren't a complication of pregnancy because when women lose babies, people pay attention.Anyhow, I have read everything I can find on this subject over the past 7 years or so and I still can't be sure if this is a result of something hereditary, environmental, or just plain random. The circulatory system is complex and hemostasis is not completely understood. And it really doesn't matter THAT much because aside from end stage cancer or other such obvious terminal illnesses, the reason for your blood clots won't really change the only treatment there is for the prevention of blood clots....warfarin!The upside is that although warfarin is a nasty poison....it also has quite an extensive history of successful use in this area so it is very likely that if taken properly, you will live to die of something besides the mysterious disease that has caused your blood clots.I am always willing to hear from anyone who has or needs information on this subject. Email me (winsall at gmaildotcom). Put me in your new study! Maybe someday, some common thread will emerge in the case histories of blood clot survivors. Until then, keep wiggling your toes!
    winsall 15 Replies
    • February 4, 2008
    • 08:29 AM
    • 0
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  • the only treatment there is for the prevention of blood clots....warfarin! Im at high risk for strokes and heart attacks due to blood clots. In my case due to I have a MTHFR polymorphism (C677T mutation). Clots are prevented in my case via helping correct the problem my polymorphism causes via some supplements. Without the supplements (folic acid, B12 and trimethyglycine) .. an increase of homocysteine by 5 umol/L increasess the coronary and stroke risk by between 50-80%. So no warfarin for me to prevent blood clots. ................. I suggest you contact hemex laboratories www.hemex.com and see if they can suggest any testing they suggest which your doctors havent thought of. I know this lab is leading the field in some kind of blood based problems in conjuction of some illnesses and it specialises in blood clotting issues. "HEMEX Laboratories is an accredited laboratory specializing in the evaluation of disorders in hemostasis, thrombosis, and special hematology. HEMEX offers more than just reports. We offer a full range of clinical testing, interpretation, pathologist review, and consultation to assist clinicians in the diagnosis and treatment of a wide range of coagulopathies and hematological disorders."
    taniaaust1 2267 Replies
    • February 4, 2008
    • 08:43 AM
    • 0
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  • Excellent post. Although I have heard of MTHFR, I was not aware that the treatment did not involve warfarin. Thanks for setting that straight.I also have looked at the hemex site a number of years ago and your post reminds me that I need to keep up with their progress. I am now motivated to get my hemo involved just in case there is a new test we can try.Thanks for taking the time to post. You never know what kind of difference it could make.
    winsall 15 Replies
    • February 4, 2008
    • 08:57 AM
    • 0
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  • There is also something called Factor V Leiden that should be looked into. This may be one-in-the-same with MTHFR-- I'm not sure. Try here: http://www.genome.gov/15015167
    aquila 1263 Replies
    • February 4, 2008
    • 03:13 PM
    • 0
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  • blaze. maybe think more about things before you post.. if the person has a problem with melatonin hence what you are saying by your post as you are saying the EMFs may be affecting that person via affecting melatonin.. that person would have OTHER symptoms too eg sleep issues etc The person DONT mention any other issues, nothing at all to say that low melatonin is involved. So what in earth makes you think the person has a problem with low melatonin???? It makes no sense......... appoligies to the original poster, blaze tells everyone they have a EMF problem no matter what their problem is.
    taniaaust1 2267 Replies
    • February 5, 2008
    • 00:43 AM
    • 0
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  • Although I am not the OP....I have a similar problem as outlined above. I have had high exposure to EMF in my job occupation (computers). What kind of sleep issues would low melatonin cause? Am I really to believe that melatonin supplements could affect my tendency to clot? If so, what mechanism would explain this effect? I am not aware of any effect of melatonin on the INR measurement so I was wondering what logic we are talking about here.I have always found that I was more awake and active in the evening hours and have a tendency to burn the midnight oil so I am not sure if that qualifies as a sleep issue. Also, I have long felt that a 20 awake and 8 asleep has worked better for me than the 16/8 sleep cycle. Thanks for the discussion.
    winsall 15 Replies
    • February 11, 2008
    • 09:25 PM
    • 0
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  • Hi. I am a normally healthy 35 year old female who has just gotten her second deep vein thrombosis (blood clot) in calf and eventtually a PE (pulmonary embolism). The doctors cannot explain why I am getting these. All of my blood tests are in the normal range and I am testing negative for all of the many blood mutation factors that are possible. I am scared because there are so many "bad" diseases out there that can cause blood clots, but I have otherwise felt healthy. The doctors cannot explain it. I am not on Coumadin, the dreaded bloodthinner, for the rest of my life. Has anyone out there experience an unxplained blood clot(s) without any explanation for why it started? Any info will be greatly appreciated! Please email.Kerri The most obvious question- are you taking birth control pills or do you have an IUD?DOM
    acuann 3080 Replies
    • February 12, 2008
    • 00:55 AM
    • 0
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  • Kerri, I am a Kinesiologist (European - here's it's holistic health) and work a lot with unexplained health issues. You are a teacher? Do you have a lot of computers in your classroom? Also fluorescent lighting, of course cell and cordless phones, and other sources of EMF's? In Germany there is a much greater awareness of the effects of EMF's on health and the blood. EMF exposure can cause the formation of chains of bloodcells caused by a change in the electrical charge of every blood cell (also called a coin roll phenomenon). Even if you can't do much about your work environment, clearing your sleep area of EMF's can help. No box spring mattress or metal in the bedframe which picks up electrical fields from wiring in the walls - use a wooden bed with foam or air mattress.. Until then, move your bed out from the wall by 1 ft, and keep all extension cords/lamp wiring 1ft away from the bed. No clock radio, "radio" controlled clock, cell phones etc. in bedroom. For supplements you could consider 3 Flax seed oil capsules per day (omega 3) which is better for most women than fish oil. Natural source vitamin E (d'alpha tocopherol) is also a natural blood thinner..normally 400iu/day but check with your doctor.This should help. Karen
    Anonymous 42789 Replies Flag this Response
  • Hi Kerri,I'm 38 years old and had my first PE last Nov. '07. No DVT (at least that was detected). I had the textbook symptoms of PE. MD's say it's impossible to develop a PE without DVT. They ran Heparin for three days and discharged me on Coumadin. Last May, I ended up with GI bleed with a hemoglobin of 6.5 (norm runs 12-15). They stopped the Coumadin thinking I would be fine. Two weeks later, they ran all the labs ie Factor V, etc and all came out normal. During this time, I developed DVT in my left leg (traffic of clots). I was again hospitalized and developed another PE (BIG according to my physicians) while in the hospital that same evening.The doctors told me my clots came back with a vengeance. My Hematologist told me most physician's don't agree that an individual can develop clots two weeks after Coumadin is stopped. Well, anything is possible (with me, at least). My Hematologist ran all testing that all came out normal as well. No one can figure it out.. There is another testing my primary doctor wants to run, and for the life of me, I can't remember which one it was. She said it was brand, brand new that most doctors don't really know about. I, myself, would like to have answers. I have 3 little ones and need to move on for them...
    Anonymous 42789 Replies Flag this Response
  • The most obvious question- are you taking birth control pills or do you have an IUD?DOM Have to ask this question again. DOM
    acuann 3080 Replies Flag this Response
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  • This applies only to the patients who develop DVTs only in the left leg. It could be caused by iliac compression syndrome (May-Thurner Syndrome), where the left common iliac vein is compressed by the right common iliac artery against the spine. The only way to examine this thoroughly is by intravascular ultrasound (IVUS).Good luck all DVT people! Don’t give up!
    Felsen 510 Replies Flag this Response
  • I found this for you: Hypercoagulable States AssociatedWith Venous ThrombosisMutation in Factor V geneMutation in Protein C geneProtein S deficiencyAntithrombin III deficiencyAntiphospholipid antibodies* Elevated concentration of Factor VIII at: http://www.medstudents.com.br/medint/medint4.htm
    aquila 1263 Replies Flag this Response
  • Hi, I have had massive pulmonary elmoli from unexplained cause last march, 2008. Still recovering now - blood tests were normal. Docs suspected two possible causes - having thhe flu and in bed for two weeks prior / or/ possilby from having a fibroid putting pressure on a pelvic vein. They could not find a sure cause after many tests. I was otherewise in good health and no family history of clotting. Any info out there? Thankyou, Curious.
    Anonymous 42789 Replies Flag this Response
  • Hi Bodymind,I just wanted to say that the cause for PE is often May-Thurner syndrome, which is difficult to discover. The compression of the iliac vein gives big thrombi that can cause deadly PE, because a DVT which forms in a big vein like iliac vein can be big enough to block the big veins in your lungs. The only reliable way to diagnose this compression is by IVUS (intravascular ultrasound).
    Felsen 510 Replies Flag this Response
  • I find this topic interesting. 01-07 I was misdiagnosed with an infection due to "Smoking" causing PAD. My ankle(s) swole so bad I could not stand. Then the skin split open and lymphatic fluid drained by the cups fulls. After 4 mos. of chasing an infection that didnt exist, diagnosed Hypetensive, and being launched into a allergic reaction to the antibiotics, a vasocular surgeon diagnosed "Chronic Venous Insuffiency". 07-08 I was admitted to emergency with "pulminary embolisim". 08-26-08 A sleep study determined Central Apnea. My conclusion is Cheyne Stokes except I was born with it. During the sleep study my O² went to 88% 1L. O² was applied again my O² dropped and 2L. O² was applied, the cpap was cancelled. This has been documented in ICU, recovery, and the Sleep Study. IMEG? I am a walking, talking Coma hence my Nic... TxComa
    TxComa 2 Replies
    • August 28, 2008
    • 08:02 PM
    • 0
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  • I'm having the same exact problem, 2 dvt's and 2 PEs I also threw a clot to my brain last year and had a CVA (stroke) on lovenox injections not theraputic ever and same with coumadin, 10mg for 2 months INR of 1.All tests negative. i'm only 23, I'm scared. Please help me! I dont know what to do... Hi...same here. Extensive left leg DVT for no reason (I did smoke cigs) at age 30. All tests normal except a very borderline elevated Igg Anticardiolipin Antibodies result that was not considered significant. Warfarin for a year. Repeated tests off warfarin and everything was normal. After 3 years off warfarin, extensive clot in right leg into liver. Had thromboectomy which was quite an improvement over the previous treatment of just anticoagulation. All tests rerun. Warfarin for life. Went to Mayo for second look and got diagnosis of "Hypercoaguable State of undetermined origin". To make matters worse, for some reason my body chews through warfarin at 15-17.5 mg a day to maintain an INR of 2.0-3.5. Yeah constant blood tests are rough to accept but they keep you alive. Hopefully, as more people succumb to this new and somewhat rare disease, there will be better medicines developed and better science to understand the root cause. I personally beleive that I would be dead if blood clots weren't a complication of pregnancy because when women lose babies, people pay attention.Anyhow, I have read everything I can find on this subject over the past 7 years or so and I still can't be sure if this is a result of something hereditary, environmental, or just plain random. The circulatory system is complex and hemostasis is not completely understood. And it really doesn't matter THAT much because aside from end stage cancer or other such obvious terminal illnesses, the reason for your blood clots won't really change the only treatment there is for the prevention of blood clots....warfarin!The upside is that although warfarin is a nasty poison....it also has quite an extensive history of successful use in this area so it is very likely that if taken properly, you will live to die of something besides the mysterious disease that has caused your blood clots.I am always willing to hear from anyone who has or needs information on this subject. Email me (winsall at gmaildotcom). Put me in your new study! Maybe someday, some common thread will emerge in the case histories of blood clot survivors. Until then, keep wiggling your toes!
    bonitadreama 1 Replies
    • December 12, 2008
    • 10:15 PM
    • 0
    Flag this Response
  • Are you taking birth control? I had dvt and pulmonory emboli at 19, due to protien c deficiency mixed with hormonal birth control. I'm not a smoker, and am very active. It's amazing the amount of young women who aren't aware of the serious side affects BC can cause!!
    Anonymous 42789 Replies Flag this Response
  • I was diagnosed with severe cramp by three different doctors over a 12 month period of chasing the swelling in my leg. In February 2009, my doctor said again this was caused by severe cramp and there was no sign of DVT present in the leg. From what I have researched and actually know myself now. The only way in which one can determine and probability of a Blood Clot is to have a D-dimer Blood Test. This was red flagged as being a possible DVT. Seven days later, I had a Doppler Scan which confirmed what I already knew, and was not shocked at the news at all.I'm still Being evaluated at the moment until my INR results balance out so they know how much warfarin to giv me. I'm 38 and one of the youngest people on the INR clinic? The problem I have is I wad diagnosed with Fybromyalgia two years ago, and with the DVT now my energy is low, last month I was an energetic healthy fit 38 year old, now I cannot even walk up a hill without the left calve tighten.I get out if breath by just doing small tasks. I've had to go on incapacity longterm sickness because I cannot work with thus DVT because it's a big one at the back of my knee down the back of the calve towards the calve. It's amazing to think, you never know what turn your life is going to take, last month I would jog every morning, cycle 10 miles every weekend and attend the gym, now I cannot do any of this.
    Anonymous 42789 Replies Flag this Response
  • I'm 30. In the past month and a half, I've had 2 PE's. The first time, I had a blood clot that traveled from my right leg to my lung. I was put on coumadin 2.5mg and within 3 weeks, I had another PE even though my blood was therapeutic. This second time, I had so many clots in both my legs and lungs that they could not count. I spent 3 weeks in the hospital. I now have an IVC filter to prevent any large clots from hitting my major organs. I had a thrombectomy but they couldnt remove all the clots due to many of them scarring themselves into my tissues. I can barely walk, my legs and hips are swollen and I have to wear compression stockings for the rest of my life as well as take Lovenox twice a day for the rest of my life. There is no explanation for this happening, the doctors are at a total loss. Im scared that even with Lovenox, it wont help and it will happen again. To everyone asking the obvious question of birth control, I'm sorry but that's a silly question. It's frustrating yet it cracks me up that after telling people that the doctor's cant figure out the cause, that the first thing people do is ask if you're on birth control. Don't you think the doctors already asked that question along with a million others?
    Anonymous 42789 Replies Flag this Response
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