My doctor claims that he has never heard of Hughes Syndrome and that what I have only causes blood clots. He thinks my fatigue and pain are due to Chronic Fatigue Syndrome and possibly Fibromyalgia. He did order the tests for B-12, Vitamin D, Iron, and a full thyroid panel. I am also going in for a sleep study to see if my chest pain, tiredness, and other issues are related to sleep apnea. I wanted an echocardiogram and a lung function test, but he says my lungs and heart sound fine.
I asked him if thick blood could be causing shortness of breath and other issues and he said only if I am having an acute clotting event. He also didn't understand what catastrophic APS was, or that I needed to keep a higher INR. I am completely baffled as to why no one understands this disease. He looked it up on his Iphone and only read where it cause clots, but not the other symptoms. It's pretty scary when you think about it. I tried to tell him how my leg pain is better when my INR is higher and he dismissed it. At least he didn't make fun of the blood tests I requested.
He actually thanked me for reminding him about B-12, because he knows that can cause fatigue and muscle pain. He also thinks the thyroid test is a good idea based on my size (being overweight)!. I was then referred to another Hematologist. I hope this new one understands Hughes and will take over my INR. I am just so scared knowing that no one in the medical field seems to understand how serious this disease really is. I bet it is also scary as heck for you guys in the NHS trying to fight for your anticoagulants.
I was explaining to my doctor how some of you guys take Plaquenil to reduce antibody levels to prevent clotting, and the concept just flew right over his head. He said that Plaquenil thins the blood, and that I am already on Warfarin and do not need Plaquenil. He thinks my fatigue is due to CFS and that Plaquenil will not work on that kind of fatigue. I will continue to fight for answers. At least he isn't trying to take me off of blood thinners. At least not yet!