Question about Hughes Syndrome!

Hello everyone, I have a few questions about Hughes Syndrome. I've been going over my lab results and it is all so confusing. I have tested on two separate occasions, over a year apart, to have a high level of Anti Beta 2 Glycoprotien 1 1gG Antibodies. On the first round of tests after I had my first blood clot in 2012, I tested positive 98 percent. On the test I had a few months ago, I tested 85 percent. On both of the tests I took it stated that a Lupus Anticoagulant was detected, but it is not valid if the patient is on blood thinners. Does that mean that I do not have the Lupus Anticoagulant. I am worried about having the (LA) and the high amount of Beta 2 Antibodies as that will put me at an even higher risk for clotting in the future. These antibodies have been in my system in high levels for years now. I however do not have Anticardioliphin Antibodies.

Another thing that has been troubling me is how could I have been living all of this time with such high level of the disease and no real symptoms other than some bad shortness of breath in 2009, a few years before my DVT/PE? Looking back I can recall times when I felt thing zipping and popping in my right calf all the way back to when I was a teenager (which looking back could have been possible blood clots moving through my veins) I also had a lot of stabbing pains in my lungs before, just never thought anything of it. I also have never been able to walk a lot, or run. My legs always start burning and become very fatigues after I walk more than half a mile. Yet I never had headaches, I never had Levedo Reticularis. I don't recall having any of the classic symptoms of the disease. I do have severe ringing in both ears and I have a lot of fatigue, but no TIA's. The MRI of my brain came back clean. Could it be that this disease decided to just jump out and cause havoc at a later time in my life. I was 35 when I had my DVT/PE. They were provoked by a bad leg injury.

Also, my Rheumatologist tested me for Lupus (SLE) and my bloods came back negative, so he discharged me back to my Hematologist. He claims that what I have is a blood disorder and not an autoimmune disorder and that I do not need to be treated with Plaquenil. I thought APS was supposed to be treated by a Rheumy. I am in the states, so this doctor might not know a lot about APS. He is also an older doctor. He has been practicing for 45 years. I'm very concerned about developing new blood clots while I'm on Warfarin. I had an incident last year where I had severe chest pain and they didn't find any new clots in my lungs, but they could not tell of the clots in my bad leg were chronic or new. They were not able to effectively rule out an acute clot. I have been having a lot of chest pains lately - but I have them all of the time since my PE.

I sometimes have this feeling like I'm going to die when I feel these burning pains in my lungs like a squeezing feeling, and sometimes like someone is pouring hot liquid into my lungs. My current Pulmonologist claims that the lungs do not feel pain. Despite the rise of pain in my chest, I always have a low to medium grade level dull aching pain in the left side of my chest. I also have been diagnosed with Post Thrombotic Syndrome and I have a severely damaged section of vein in my right leg - my hematologist said even without APS, if I were to come off of blood thinners with my vein being that damaged, I would clot up within 10 days. This all makes me feel like I'm doomed. I feel like there is a loaded gun to my head each and every day. I either clot to death, or I bleed out from the blood thinners. Any how, I appreciate any advice or support you guys can provide. Thanks for your time.

[Hidden]

Please forgive my typographical errors, and my failure to use question marks where they needed to be used. I'm not a very thorough typist these days. I have mental fog now due to the Warfarin. I know this because I was never this mentally slow before I began taking blood thinners. My doctor also said that Warfarin does not cause brain fog. lol. I guess the doctors are always right.

[Lure2]

Hi and welcome to this friendly site!

I will try to answer some of your questions; I have read you live in the US. We have several members on this site from the States. What state do you live in?

First of all you have to have an APS-doctor and I suggest you look at apsaction.org (APS-specialists in different countries) I am sure others on here can help you also.

You shall not worry about the antibodies. There are persons here that have no antibodies and the APS-doctor has to look at the symptoms to make a diagnose.

We usually get a fog if the INR is too low. Most of us feel best when we have an INR over 3.0 and around 3.5. We have sticky blood and when the blood is at the correct INR we do not get clots and TIAs and PEs etc. There is very little risk to have a bleed with this illness but the doctors (especially those who do not understand APS) are afraid sometimes to let us be at higher INR-range where we feel best.

It is good that you have a diagnose (which you must have with those antibodies)! I have all those antibodies there is for APS and in high titres and have had those always positive for 13 years now.

I do not care about it. They take them twice a year and we do not talk about them at all. I am OK with doctors that care about me.

I wonder if you have high bloodpressure? Have you done an Echochardiography with doppler on your heart?

My advice to you is to find a doctor that understands this illness and it must be an APS-doctor!!!!

There are many books for sale on Hughes Syndrome Foundation charity website. I prefer "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes of different symptoms and explains how it is to live with this illness. I have it here in Sweden in pocket.

If you get a Specialist and get the right anticoagulation you will feel much better. Do not be afraid but see to it that you get the RIGHT care.

Best wishes and come back here whenever you like!

Kerstin in Stockholm

[MaryF Administrator]

Hi please do check your Thyroid out, as this if causing problems can cause terrible brain fog! Also if you doctor is doing test, get your iron, b and D tested also as if any of these are low they will add to your physical symptoms also. MaryF

[Hidden]

Hey, I am from California. I did have high blood pressure before I started taking blood thinners and pain killers. When I come off my pain killers for my leg pain, my blood pressure goes up to 170 over 110. It was that high just a few weeks back. I also have two different EKG's that show abnormal readings. They say non-diagnostic Left Ventricular Hypertrophy. I have a partially collapsed lung, and a nonspecific right Hilar Lymph Node. All of my doctors say this means nothing as is says non-diagnostic. They also discredit my higher blood pressure at times, saying it is just a fluke thing. Should I ask my doc for a cardiologist? I really hate to bother them after they have just sent me to quite a few different specialists for different things. Any how, thank you guys for all of the help. I really appreciate it!

[Lure2]

Do try to get to an APS-doctor. He will help you to distinguish the different symptoms and tell the GP to refer you to the right doctors. It is obvious that your doctor does not understand APS.

I also had very high bloodpressure. I have Pulmonary Arterial Hypertension because of that and my high bloodpressure was caused by APS. It affects also my heart .It is also important that your warfarin is high enough and with a stable INR.

The APS-doctor will refer you to the different doctors and probably also to a cardiolog.

On this site we all have APS and have also been through all the different doctors that do not understand how to treat APS. That is why we know that it is so important to be obstinate. It is a FIGHT really.

Good books are availabe on Hughes Syndrome Foundation charity website. The best in my opinion is "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the different symptoms and how to understand this illness. That is a very good and social book also for relatives.

You write that you feel as if you were doomed. Believe me; find that doctor and you are not feeling doomed. I can understand you feel desperate as you do not know what to do next.

Did you not find someone on "apsaction" that I wrote about? Hope others on here will help you. Stay on!

Kerstin

[goofus241]

I was not diagnosed til I was 42 and do not have high blood pressure but have low thyroid which I take medicine for. My ob tested me for several things after 2 miscarriages and that is jow I found out. Luckily I tested negative for the Lupus. I had no other symptoms. So right now I am administering generic of Lovenox shots daily as we are still actively trying and also 1 baby aspirin daily.

I did check out the website the lady above was talking sbout before and was very informative as seems to not be as much information in the US . I live in Chicago

[Sandrapanda]

So sorry you are dealing with so much pain and worry. It's easy to fall into a pattern of feeling doomed when you cannot find a Dr. that will listen or take your pain/concerns seriously. I am a worrier by nature, and a very risk averse person, and it took me a lot of time after this diagnosis in Feb. to "give it up to God" so to speak and relax a bit. When my pain acts up from my past DVT or I feel "off"...the worry ensues, but I try to tell myself that I can only do the best I can, and no more...so to make the most of the days when I feel well, and keep trying to get the Dr's to pay attention in a non-condescending way. Many are quick to prescribe anti-depressants b/c of the anxiety and chronic pain we may suffer from with this disease...but who wouldn't feel anxious when they have no control over things like blood clots on a regular basis?! For those of us in the US with APS, it is very challenging to find an APS specialist. I am in one of the best states in the country good medical care (Massachusetts) and you would be amazed at how few Dr's here know what APS is, how to treat it, and what preventative care is the best. Even the doctors I have found leave something to be desired in terms of their true knowledge of this condition. The site for "apsfa", the APS foundation in the States is terribly outdated, and quite sparse in terms of Dr's that specialize in APS...but there are a few names under Hematology and Rheumatology that may be of help to you. See the following link: (apsfa.org/apsfadrlistwest.h... As for your question on how you may have walked around for so many years with this disease but now all of a sudden it decides to act up...the same is true for me. I did start feeling like in my thirties things just weren't right. I was tired all the time, and had difficulty concentrating. However I did not actually clot until after a traumatic ankle injury at the age of 43, which in the midst of treating infertility with a lot of estrogen in my system. I often wonder if I ever would have clotted had I not fallen or taken estrogen? Who knows...but we cannot control our health/fate, and you can only do the best you can to get through each day...try not to worry too much b/c it only makes the good days do you have less enjoyable. Find something to smile about each day, and be kind to yourself on a regular basis. Hope you feel better, and get a Dr. that will pay better attention and not be so dismissive of your condition.

[Lure2 in reply to Sandrapanda]

Well said!

Regards from Stockholm and Kerstin

[Lure2]

Well said !

Kerstin

[Mojo55]

Hi I've been having same symtoms too stabbing pains in my ribs thought I was having heart attack, has anyone had like a electric shock pain in there gums, I also been having stabbing pain in my head, is this all to do with hughes syndrome.

[Lure2 in reply to Mojo55]

Have you been refered to an APS-doctor yet?

As this illness attacks most parts of our body and also the heart and lung, I suggest you shall go to an Emergency-clinic if you have pain around your chest. Do not wait in that case!

Best wishes and Good Luck from Kerstin in Stockholm