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!
I am glad you are having the extra tests done, make sure he looks at your vitamin D and Iron also. Please take a look at this list, you might have to seek further help: apsaction.com/ Also other members on here, may have more localized knowledge, as your GP needs a consultant to help guide him. I seem to remember you are in the USA? The other thing you can do is email him some articles, such as this. hughes-syndrome.org/about-h...
Regarding Plaquenil many patients are now on this as helps many with fatigue. Of course it is not classed as an anticoagulant but is though to maybe help with this.
ps I have been known to buy books and give them to the various doctors managing myself and children for this disease, in my local area! Have a look through the list on the charity website.
Thanks for the links Mary. I am going to forward them to my doctor. I think he is willing to read them if I send them to him. At least he did not laugh at me for asking for the Vitamin D and B-12 tests. This doctor is not a bad doctor, he is just old school. My mom has a younger doctor and she immediately knew what APS was. Oh, I also found out that one of my cousins has APS. I now have a family link. It runs in my family. Mary, you and the professor do great work trying to educate doctors and patients about this disease. I am very grateful for the work that you do. Thank you for all of the support.
You can also send this, so he can see that Professor Hughes is still working, he and his colleagues may know the condition as APS or Antiphospholipid syndrome. londonlupuscentre.co.uk/hug...
Also that we had a recent debate in the House of Lords here in the UK to improve the diagnosis and treatment of this condition. publications.parliament.uk/...
Also here are the films from last year's patient's day, broken down into very easy to watch segments: youtube.com/playlist?list=P...
Wow. This is tricky. You'd like to think that professional pride wouldn't cloud diagnosis, but equally lots of people must come in and say "I've read about this, I think I have it".
Presumably you've been diagnosed with APS? You used both terms in your post, if the doc is not a specialist, would that confuse the issue?
I only had shortness of breath with low iron and with a PE on the lung. But...everybody's symptoms can be different and everybody reacts differently. The more I read on here, the more I wonder whether the treatment I receive for the underlying issue, is actually complicated by my APS treatment (warfarin, keep INR 2-3). What if one of the other anti-coags worked in a different way and didn't react so much or interact in the same way...
Keep at it, it sounds as if he will read about a subject - he can't possibly know everything, but seems prepared to research. Our GPs can be the same - General Practitioners. Base (clearly high a base and way more than me) knowledge that can require referral to a specialist for complicated issues.
Just out of interest, when I mentioned Hughes Syndrome to my (UK) GP, they had never heard of Prof Hughes or Hughes Syndrome, but they knew what APS was. I'm not sure how much they knew exactly in terms of range of symptoms. They didn't say.
Only the medical profession could call something Antiphospholipid Syndrome which is part diagnosed by the presence of Lupus Antibodies to really confuse EVERYONE else and when it gets call Hughes they look at you blankly....
Have you tried Arixtra as a blood thinner? I've done the oral blood thinners and the finger stick testing and watching the Vitamine K on oral thinners. Arixtra is a sub-Q injection taken daily. It works differently than coumadin and warfarin.
APS can attack heart valves, and kidney's and that accounts for alot of your listed conditions. There are doctors out there who do know APS and if they don't, can send you to someone who does.
L.
recommend you try to find an MD who understands Autoimmune Disorders(Rheumatologist).....there are some good Medical Centers in the US within driving distance .....HSS has "links" call them
Also the Mayo CLinic specialies in Autoimmune DIsorders and I believe they have
medical centers in the midwest, south west and elsewhere
best of luck
re: B-12 before I was properly diagnosed I was tested for B-12/given shots and Cortisol etc. etc, nothing to do with "sticky blood"
Just to confirm what a previous poster wrote. Here in the UK, I mention Hughes Syndrome to GPs, including friends, and they look at you blankly, like it's some type of faddy 'alternative' illness. Once you mention Antiphospholipid Syndrome they know it immediately.
One consultant renal specialist here at the University Hospital in Birmingham even said, "Ah yes, Professor Hughes, the man big headed enough to name a disease after himself". To this day, I regret my quietude, and not putting him straight.
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