Discussions By Condition: I cannot get a diagnosis.

Warfarin Therapy and PE's

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • July 2, 2008
  • 02:25 PM

5 years ago my health started to fail and no one knew why - increasing fatigue, headaches, body pains, shortness of breath. For over a year I was tested for everything under the sun - thyroid, Mono, West Nile, SARS, but to no avail. I did have type 2 diabetes which was completely under control with diet and exercise. As I continued to become sicker, my blood sugars became less controllable and I had to go on insulin due to allergies with the oral drugs. By the end of that first year I could not walk down the hall to the bathroom. Went to the ER for what felt like the 1000th time, and was diagnosed with a large number of blood clots in both lungs.
Was put on Fragmin (LMWH) and transitioned to warfarin.
After 6 months on warfarin, I came off for some medical tests and genetic screening and had another PE.
Genetic screening all came back negative.
6 months later, while still on warfarin, had another PE (My INR had dropped to non theraputic ranges).

Life Time Warfarin was perscribed. My INR is very unstable and seems to change with the amount of sunlight. Vitamin K is strictly managed. But the funny thing is, it is now 4 years after the first diagnosis and I still have all of the same symptoms (except the diabetes is now gone due to gastric bypass surgery, along with 70lbs).

Fatigue is ongoing
Dizziness is ongoing
Shortness of breath is ongoing, yet pulmonary function tests say ok
headaches all the time (and of course no NSAID's so must live with them)
aches and pains that are continual and move all over the body

Most recently I have a stress fracture of the lesser trochanter (fractured hip) which is probably due to the long term warfarin therapy. There were no falls or injuries associated with this.

Post Gastric Bypass blood work is great.

So what is wrong with me? Really starting to feel nuts and afraid I will either never get better or die from what every has not been found.

Websites say only long term side effects of warfarin is bleeding. I think that there are a whole lot more that have not been documented.

Where do I go now?

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7 Replies:

  • what colour (dose) warfarin are you on? and when was the last time the dose was changed/increased?
    hollyparrott 3 Replies Flag this Response
  • I have had DVT with warfarin, I have leg pain , shortness of breath, headaches, get very dizzy and have left chest muscle pain. i found a whole list of side effects o nthe Mayo Clinic's website. I also read that you can still get blood clots on it. I was on it and had a stable INR they added asprin. I don't feel well most of the time try the Mayo Clinic's site
    Anonymous 42789 Replies
    • October 14, 2008
    • 09:17 PM
    • 0
    Flag this Response
  • Warfarin is a really tricky drug in the first place. Even if you take the SAME patient, on the SAME dose, with the SAME diet/exercise/alcohol/tobacco, the INR will vary on a daily basis. That's why patients are controlled on a RANGE of INRs. Usually there is a set target (most times 2.5) that would be perfect, with a range that is also very good (most times 2-3).Do you know about the food interactions with it? That can really affect INR levels. Anything green and/or leafy can interact with it (broccoli, spinach, lettuce, kale, mustard greens, etc). Essentially anything with Vitamin K in it counteracts what warfarin is trying to accomplish - this includes multivitamins. If you take a multivitamin you should check on the ingredients and see if Vitamin K is in it, and how much. There are also lots of other foods that contain Vitamin K other than just green leafy vegetables, check out http://www.dietitian.com/vitamink.html for more information. The take home point about how your diet can affect your INR and warfarin is that YOU NEED TO BE CONSISTENT. This is very important! These foods don't have to be cut entirely out of the diet.As mentioned above, exercise, alcohol, and tobacco can also change the INR levels. These need to be kept consistent as well. When you exercise, you increase your metabolism, so naturally warfarin will be broken down faster. So, exercise decreases your INR. Alcohol and tobacco both have 2 different effects on the INR. If you're a chronic alcohol drinker, your INR will be lower due to upregulation of liver enzymes that break it down (alcohol normally suppresses the enzymes, but your body compensates by making more of them). If you binge drink, this will increase your INR because the alcohol inhibits those enzymes. The situation is similar with tobacco. Chronic tobacco users will have lower INRs, but people who quit will have an increase in their INR.There are A LOT more side effects of warfarin than just bleeding. Bleeding is the most common side effect, yes, but not the ONLY side effect. Some others, that might be causing some of your other problems, include: low blood pressure, dizziness, fatigue, headache, lethargy, weakness, muscle pain, joint pain, stomach pain, anorexia, diarrhea, nausea, anemia, difficulty breathing, and cold intolerance.*Also, there is an association (ONLY, not cause and effect) with long-term warfarin use and osteoporosis. You might want to talk to you doctor about this. There are other medications that you can take to prevent this.I hope that helps as far as the warfarin questions go.
    soccurgurl903 1 Replies Flag this Response
  • Warfarin is a really tricky drug in the first place. Even if you take the SAME patient, on the SAME dose, with the SAME diet/exercise/alcohol/tobacco, the INR will vary on a daily basis. That's why patients are controlled on a RANGE of INRs. Usually there is a set target (most times 2.5) that would be perfect, with a range that is also very good (most times 2-3).Do you know about the food interactions with it? That can really affect INR levels. Anything green and/or leafy can interact with it (broccoli, spinach, lettuce, kale, mustard greens, etc). Essentially anything with Vitamin K in it counteracts what warfarin is trying to accomplish - this includes multivitamins. If you take a multivitamin you should check on the ingredients and see if Vitamin K is in it, and how much. There are also lots of other foods that contain Vitamin K other than just green leafy vegetables, check out http://www.dietitian.com/vitamink.html for more information. The take home point about how your diet can affect your INR and warfarin is that YOU NEED TO BE CONSISTENT. This is very important! These foods don't have to be cut entirely out of the diet.As mentioned above, exercise, alcohol, and tobacco can also change the INR levels. These need to be kept consistent as well. When you exercise, you increase your metabolism, so naturally warfarin will be broken down faster. So, exercise decreases your INR. Alcohol and tobacco both have 2 different effects on the INR. If you're a chronic alcohol drinker, your INR will be lower due to upregulation of liver enzymes that break it down (alcohol normally suppresses the enzymes, but your body compensates by making more of them). If you binge drink, this will increase your INR because the alcohol inhibits those enzymes. The situation is similar with tobacco. Chronic tobacco users will have lower INRs, but people who quit will have an increase in their INR.There are A LOT more side effects of warfarin than just bleeding. Bleeding is the most common side effect, yes, but not the ONLY side effect. Some others, that might be causing some of your other problems, include: low blood pressure, dizziness, fatigue, headache, lethargy, weakness, muscle pain, joint pain, stomach pain, anorexia, diarrhea, nausea, anemia, difficulty breathing, and cold intolerance.*Also, there is an association (ONLY, not cause and effect) with long-term warfarin use and osteoporosis. You might want to talk to you doctor about this. There are other medications that you can take to prevent this.I hope that helps as far as the warfarin questions go.Ask your neurologist to do a doppler of the arteries of the neck ( vertebral arteries as well as carotid arteries) If these are partially blocked and reduce blood flow to the brain it can result in dull head aches and even visual disturbances, chronic fatige and shortness of breath. The fact that you are on warfarin may be the saving grace.
    Anonymous 42789 Replies Flag this Response
  • 5 years ago my health started to fail and no one knew why - increasing fatigue, headaches, body pains, shortness of breath. For over a year I was tested for everything under the sun - thyroid, Mono, West Nile, SARS, but to no avail. I did have type 2 diabetes which was completely under control with diet and exercise. As I continued to become sicker, my blood sugars became less controllable and I had to go on insulin due to allergies with the oral drugs. By the end of that first year I could not walk down the hall to the bathroom. Went to the ER for what felt like the 1000th time, and was diagnosed with a large number of blood clots in both lungs. Was put on Fragmin (LMWH) and transitioned to warfarin.After 6 months on warfarin, I came off for some medical tests and genetic screening and had another PE.Genetic screening all came back negative.6 months later, while still on warfarin, had another PE (My INR had dropped to non theraputic ranges).Life Time Warfarin was perscribed. My INR is very unstable and seems to change with the amount of sunlight. Vitamin K is strictly managed. But the funny thing is, it is now 4 years after the first diagnosis and I still have all of the same symptoms (except the diabetes is now gone due to gastric bypass surgery, along with 70lbs).Fatigue is ongoingDizziness is ongoingShortness of breath is ongoing, yet pulmonary function tests say okheadaches all the time (and of course no NSAID's so must live with them)aches and pains that are continual and move all over the bodyMost recently I have a stress fracture of the lesser trochanter (fractured hip) which is probably due to the long term warfarin therapy. There were no falls or injuries associated with this.Post Gastric Bypass blood work is great.So what is wrong with me? Really starting to feel nuts and afraid I will either never get better or die from what every has not been found.Websites say only long term side effects of warfarin is bleeding. I think that there are a whole lot more that have not been documented.Where do I go now?well i was waiting for spinal surgery and on th NHS waiting list for two years,during this waiting period my legs got hot and swollen.conctacted my GPwho telephonically diagnosed GOUT and perscribed meloxicam,while this was actually DVT, six mouths later and still not on a blood-thinner,had difficulty breathing, and again diagnosed by my GP telephonically i had bronchitus and perscribed anti-biotics,which was actually the clots moving to my lungs, sixty days later i had a pre-op for my spinal op, and they rushed me into intensive c are, that was fours ago, no spinal op warfarin for life,numbness around waist,numbness in legs feet siatica,23 stone, 47 years old, blood in strolls sore gums headaches shortness of breath,no sex drive,depressed lonely tired legs ache, INR everey two weeks inr at 3....on 80 mg MST morphine dizipan lactalose fibregel and headche tabs.enjoy every day for what it brings as you never know when the end is near,ive become a hermit and with no family friends and kids just 3 cockateils for company, and still not seen my GP IN THREE YEARS,as they just couldnt be bothered........keep smiling
    Anonymous 42789 Replies Flag this Response
  • That is so crappy that your GP keeps giving diagnoses without even seeing you!! Your post makes you sound like you are in England as I wonder why else you havent just changed doctors unless you are being made to stay with the same one, i think they have one of the most worst medical situations there.
    taniaaust1 2267 Replies Flag this Response
  • Keep in mind that this is a one in a million guess, but there is a chance that the underlying cause could be Paget-Schroetter syndrome. On occasion this relatively rare condition can present intially as multiple pulmonary emboli and coagulopathy. To seriously consider testing for this, it sounds as if you absolutely will have to find another physician. At the heart of it, paget's is a disease of the bones, and it may involve only one or several, and can also have profound effects on the vascular and nervous system. Paget's is relatvely rare, but is most common in the the UK, Ireland, Scandanvia. There is debate about what actually causes it, and both genetic and enviromnental factors have been implicated. Diagnosis is typically made on a combination of symptoms, radiographic images of bone changes, and raised concentrations of bone turnover markers( urinary hydroxyproline excretion, total serum alkaline phosphatase, bone specific alkaline phosphatase), with normal concentrations of serum calcium, phosphate, parathyroid hormone, and Vitamin D metabolites. If all else fails in the diagnostic department, this may be a possibility.
    gregtfish 67 Replies Flag this Response
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