I think (think being the operative word) that I have recently been diagnosed with Hughes, and have had no real help or information from my GP and thankfully found your website, where I'm hoping that I can find out more info and receive support from members on here.
I went to my gp after having suffered from mottled skin for years but having got fed up with my father nagging everytime he saw me that there was "something" wrong.
The gp did ask if I was having any other symptoms as "LR, is very common and nothing to worry about". When I explained that I had been having reoccurent headaches, some that I could only describe as migraines, constantly have cold feet, extreme tiredness, the question was asked if I had a history of miscarriages or blood clots? The answer to both of those was yes but thankfully only 1 of each.
I then explained that I sometimes had the feeling of 'being drunk' when I wasnt i.e., feeling unstable and wobbly, slight memory loss, fumbling words or not being able to remember what I was talking about in the middle of a sentance. But alot of these symptoms I had put down to being a mother of 4 young children, the last having just turned 1 and having had ALOT of complications following the last C-Section, whether or not it is relevant I do not know but have had to have 4 c-sections due to being "odd" and having a unicornate uterus.
So the torture and what can only be called complete mess of blood tests began. I had the first batch of 15 tests (to cover everything) was taken on the thursday, received a letter on the saturday morning saying that I needed to go back and have the tests re-done asap - no explanation as to why. Went back monday and had all 15 repeated, had a phone call tuesday morning, "very but these have again been rejected could you come back in again", went back tuesday afternoon and had another 15 taken. Wednesday morning the same thing but this time it was only the bloods for the APS, went back wednesday afternoon and had some more taken. Yes you guessed it Thursday morning same telephone conversation, as "the blood tests for the ApS have to be exactly on the line otherwise they'll rejecedt at the lab" NOT a happy bunny at this point but dutifully went back again and them taken. On the saturday I received another letter.
This one stated that I had slightly raised cholesteral and could I contact the GP regarding results of other tests taken. Worried all weekend about what had come back, and as instructed called GP surgery first thing monday morning and had a telphone conversation which resulted in me being told that :-
My APS blood results showed levels slightly raised but not much cause for concern yet and to commence taking a dose of asprin everyday if I felt the need and that they would monitor me again in 3 months. The GP then went on to tell me that they had no real information on Hughes and that I would probably be able to find out more on the internet.
This was all last month that I have supposidly recieved this 'diagnosis', and as you can expect I have no idea whether I have or have not actually got hughes and where to go from here. So please please please please if anyone can actually help me I would be so gratefull.
Im this was such a long post but I really have no idea where i'm going and what to do and on top of it all still feel so ill all the time
Thanks in advance
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dragtalav
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HI, poor you for having such a tough time of things - have you checked out the Hughes website? hughes-syndrome.org/ - it has some very useful information, which you may also want to share with your GP or practice nurse to help them understand.
Try taking the aspirin as your doctor suggested, this I believe does help some, for me I take warfarin after having DVT, PE's and several miscarriages - but on this site we are all in the same boat, just at different stages and of course different stories. The one thing you can be sure of is friendliness and support.
APS/Hughes/Sticky blood to give the names most common, comes in many forms, some people show negative on the blood tests, yet do have the condition - so don't despair, I am sure you will find many answers here.
Thanks for replying to my post I have just registered with the hughes-syndrome.org and have been reading there information. Its all so confusing some things seem relative and others dont but I suppose that not everybody has all and the same symptoms of APS.
I have been taking the asprin but havent felt any effects of it yet, especially today as I am finding it impossible to get warm so i'll keep my fingers crossed.
Thank you again and I look forward to chatting to everyone
Hi there, at least your GP has some notion of this disease many have not heard of it and do dismiss it. I don't know where you are located, but if possible he needs to send you urgently to St Thomas' however other's on here may no somebody closer. in the mean time do stay on your aspirin, (taken on full stomach), and use the Hughes Syndrome Foundation website to find the relevant papers to down load or email for your GP.. they will see how many names on them crop up at St Thomas'. Keep going you are nearly there, and lots of us on here have overlapping conditions. Hope you find us helpful and welcome. Mary F x
Hi Drag- Sorry to read what you are going through, but know you are not alone-First and foremost- Hughes, Aps,Sticky blood is an Auto immune disease and because of this so many of us have so many different ailment but yet we are all connect in some way- Hence "Syndrome" look up what that word means-It is very important- just know you are not alone......We are here, there are many of us and we feel and know what you are going through!
Another thing educate your Doctor, if not find one who is willing to learn or find a Doctor who knows about APS, and all of its connective disorders-
Myself and other have what is called"Connective Tissue Disorders" APS being one of -them-Others include ailments such as other autoimmune issues such as Lupus, Fibromyalgia, Raynuards and others- This site is a great weath of help and knowledge!
Hi dragtalav - so sorry to hear what you have gone through. You have more patience than me as I would have been stamping my feet after a couple of days!!
As Mary says you are nearly there and at least your GP has put a name to your problems, many don't especially when blood tests are not clear or negative, they don't make the association. You should ask for an urgent appointment to St Thomas's, Prof Khamashta is the specialist in seronegative APS so if your bloods are not strong he may be the person to ask to see. Alternatively if funds will allow you could go to London Bridge and see either him or Prof Hughes privately to get a quick diagnosis and advice.
In the mean time we will offer as much support and advice as we can as we have all been where you are at some point or other. Be brave you will get there and above all you are going to be ok
So sorry to hear you going through all this, certainly sounds like you have symptoms of Hughes syndrome. I'm sorry to for your loss, so much pain, heartache and then stress of not knowing, so many of us have been there!!
As others have said St Thomas's or London Bridge, should be able give some answers, in the meantime we are all here and will help if we can!!
Though his labs seem to have had bad luck with your bloods that week, at least it can be said that asking you to return in 3 months is consistent with a familiarity of Hughes: a classic diagnosis requires 2 positive cardiolipin antibody tests separated by 12 weeks interval.
Good luck, and I hope that the draw in 3 months is handled better!
I really understand when you described feeling "drunk"...that's how I felt + feeling like I had the flu .....I was initially prescribed 4 80 mg aspirin tablets...
my APS level was also + but on the low side..28...after 3 months on the Aspirin my APS level were in the "normal range"....in the US less than 10.....even though my blood was no longer "sticky" I began to feel ill again....Rheumatologist prescribed 200mg Plaquinil 2x day....and this was the "magic" potion....I also take 1 Ibuprofen daily....to address any inflammation...
So good luck....I consider myself lucky because the med regiment I am on is relatively benign.....
Hi again...just a thought....I am not a medical professional.....I have discussed diagnosis w/ my Rheumatologist....she says exact labels are difficult....and that people usually have several autoimmune disorders....in my case the "sticky blood" measure appears normal now....but my ANA goes up and down....and although I do not have RA (she said the "number " is 18....and I have a "13")
she monitors this....ANyway when I see her every 90 days....she sends blood to the lab for a lot of things....not just APS...... I decided on my own to take Ibuprofen and she thought this was a good idea......and I don't thing 320mg Aspirin a day could hurt you.......but as I say I am not a medical professional
Gosh ever time I read your post I think about one more thing.....re: Labs
I live in the US....my private insurance only covers testing at LabCorp....my Rheumatologist uses a lab called Quest....I decided to pay this cost on my own..anyway 1x she sent the blood to LAbCorp and showed me the comparison.....the following is a portion of an appeal letter I sent to my insurance company :
" I Have been diagnosed with Primary Antiphospholipid Syndrome (AKA "sticky blood") apsfa.org plus Unspecified Mixed Connective Tissue Disorder. So certain markers are remaining steady....but others, like my inflammation marker has gone up.
I am enclosing the blood tests done by LABCORP -December 2011 and the tests results completed by QUEST - March 2012. LABCORP does not meet the testing requirements needed by my MD to ensure I remain healthy. I believe it has to do with the
That's a good point Luisa St. Thomas's hospital don't rely on other hospitals tests, preferring to have there own done as labs all differ some being more sensitive than others!
Blood tests and autoimmune conditions, errrrm nightmare!!!!
20 years ago, I was told I had an "elevation of antibodies" after having 8 miscarriages. I was told to take 1 baby aspirin once a day during my next pregnancy. That one miscarried at 10 weeks. Then another doctor came in that was an endocrinologist/infertility doctor that redid all the tests done previously and again "an elevation of antibodies" was found. For my next pregnancy, I was given heparin along with the baby aspirin & I had my son. So what is this "elevation of antibodies?" I am trying to find out since I found this website a few months ago. I think I should have been referred to a hematologist after my son was born. I have been lucky to not have a stroke or blood clot although I was examined for a stroke when I had vertigo. Also went through a bunch of heart test when it looked like I had signs of angina on a stress test--what could that have been? I don't know but am trying to get a referral to a heumatologlist to get some answers before I have something that disables me. My granddad had a cerebral hem. at 61 & his niece had a blood clot in her lung that damaged her lung @ 72. Could any of this be related? So I'm in the same boat as you trying to get answers, but my answers have been 20 years in coming. Didn't know I had anything to worry about -- thought my tiredness was coming from stress and keeping busy, but since having back surgery can't get rested, extremely tired.
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some things seem relative and others dont but I suppose that not everybody has all and the same symptoms of APS.
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