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?