AspectRain

I’ve started using this blog to think out loud and gather together resources in one, easy-for-me-to-find place. In this particular article, you’ll see what happens when I am given a mystery from doctors who withhold information.

Today, I’m going to research my blood. Specifically, the blood in my veins that refuses to be normal, but has instead opted for a genetic malfunction that, like a seductive whisper from inside your head, influences it to do wrong things. In this case, clot.

There is a funny term for this twisted inclination. Thrombophilia, like Thumbalina’s less lovely sister, or a disturbing perversity. According to the wikipedia article I just linked, I share this with 5-8% of the population.

Many of these have some known cause, like surgery or other situations which required a great deal of immobility. Then there is a wide array of subsets of all the different types of genetic disorders that could be to blame. In my case, I recall that they told me I had elevated levels of anti-cardiolipin antibodies.

Unless you are a medical student, most of that article sounds like latin gibberish. It even has a colorful diagram of what I assume is supposed to be what an antibody looks like. Or something like that.

What I have just told you is exactly the extent of what any doctor has ever told me. They don’t seem to understand that I don’t go to them because I am looking for more medications, but just explanation. I’m an adult, and I want to understand what’s going on inside me, in as much detail as it takes. Is having this elevated level of anti-cardiolipin antibodies a mutation/blood disorder? Or is that one aspect of a blood disorder who’s name I just didn’t catch?

I was also told: Lupus anticoagulant. This was another term dropped by one of the doctors.

In a Common Questions section of Lab Tests online for a Cardiolipin Antibody test, it says, “The [anti]cardiolipin antibodies represent a risk factor but they cannot predict whether an individual person will have recurrent blood clots or other associated complications. And, if a person does have blood clots, the presence of the antibodies cannot predict their frequency or severity.”

Another interesting tidbit: ” Occasionally, cardiolipin testing may be ordered to help determine the cause of a positive VDRL/RPR test for syphilis. The reagents (chemicals) used to test for syphilis contain phospholipids and can cause a false positive result in patients with cardiolipin antibodies.”

Okay, so if I ever am screened for syphilis, then there is a small chance that I may get a false positive because the chemicals used in the test react in patients with cardiolipin antibodies.

Good to know.

Some more from that site: There are “three classes (IgG, IgM, and/or IgA) of cardiolipin antibodies. Produced by the immune system in response to a perceived threat, these proteins are the most common form of antiphospholipid antibodies. They are acquired autoantibodies that can affect the body’s ability to regulate blood clotting in a way that is not well understood.”

Alright, so cardiolipin antibodies are something we all have and need to regulate blood clotting in a magical and mysterious way. Apparently, having elevated levels of whatever class of anticardiolipin antibody I have makes the blood prone to clot.

Is there a difference between cardiolipin and anticardiolipin? It’s used interchangeably throughout some of these articles.

“Cardiolipins, and other related phospholipids, are lipid molecules found in cell membranes and platelets. They play an important role in the blood clotting process. When antibodies are created against cardiolipins, they increase an affected patient’s risk of developing recurrent inappropriate blood clots (thrombi) in both arteries and veins.”

Let me see… Cardiolipins are molecules in cell membranes and platelets that do something magical regarding blood clotting regulation. But these guys have an evil nemesis, cardiolipin antibodies, which want to cause great clotting havoc.

“Cardiolipin antibodies are frequently seen with autoimmune disorders, such as Systemic Lupus Erythematosus (SLE), and with other antiphospholipid antibodies, such as lupus coagulant.”

Autoimmune disorders, by the way, “are diseases caused by the body producing an inappropriate immune response against its own tissues. Sometimes the immune system will cease to recognize one or more of the body’s normal constituents as “self” and will create autoantibodies – antibodies that attack its own cells, tissues, and/or organs.

Ohh.

Okay. So I have an autoimmune disorder in which my immune system is not recognizing my cardiolipins as part of ‘me’, so develops crime-fighting (not villains anymore) antibodies to go and take care of them.

Back to the lupus anticoagulants.

“Lupus anticoagulant is a protein that increases the risk of developing blood clots in both the veins and arteries… found most frequently in those with autoimmune diseases… The antibody is thought to be present in about 1 – 2% of the general population and may develop in people with no known risk factors… The lupus anticoagulant is one of three primary antiphospholipid antibodies that are associated with an increased risk of thrombosis. The others are anticardiolipin antibodies and antibodies against beta-2 glycoprotein 1 (less common), and together they form the antiphospholipid antibody syndrome (also called Hughes syndrome). A person may have one or more of these phospholipid binding antibodies. Each interferes with the clotting process in a way that is not well understood and singly or together, increase a person’s tendency to clot.”

(Also, apparently both these anticoagulants as well as the anticardiolipins can cause a false positive on a Syphillis test.)

“The doctor may also want to test for the lupus anticoagulant when a patient has a positive anticardiolipin antibody, to evaluate whether ther person has antiphospholipid syndrome.”

Okay! I think it’s coming together now.

Where both are elevated, then the person has antiphospholipid syndrome (also called Hughes Syndrome), which is “a type of hypercoagulability. Common presentations of APS include, venous thrombosis (usually blood clots in the deep veins of the legs), arterial thrombosis (usually blood clots in the brain), recurrent pregnancy losses, and low platelet counts. Other presentations include chorea and transverse myelitis” (according to the AARDA’s article on it).

I’ve got the clots in the leg. I don’t think I have ever tested low in platelets, nor had any of that other stuff (nor do I ever want to - chorea is an involuntary movement disorder and transverse myelitis is a neurological disorder involving much spinal inflammation and nastiness).

“Other common findings, although not part of the APS Classification Criteria, are thrombocytopenia (low platelet count), heart valve disease, and livedo reticularis (a skin condition). Some patients report headaches and migraines. Antiphospholipid syndrome can rarely mimic multiple sclerosis with an estimated 10% of patients misdiagnosed.”

Livedo reticularis, by the way, is indicated by painful ulcers on the lower legs. I don’t have those. But they are believed to be caused by clots in the small veins of the legs, so it’s possible that in the future I may get those in my left leg.

I do have headaches and dizziness/light-headedness (there is a difference, and I get both).

Thromophilia, in any form, is a risk factor for strokes. I don’t have high blood pressure, my cholesterol levels are good, I don’t smoke, my heart is in good shape (I know because each time I go into the ER for a possible pulmonary embolism [blood clot going into lungs], they do a heart test), and I don’t [yet] have diabetes though my mom does and my blood sugar has so far always tested normal.

But I do get migraines with and without auras (visual oddities before the onset of a headache).

Okay, so I think I understand a bit clearer what’s going on. This also helps me accept what the doctors said in terms of treatment: Anticoagulant medication, indefinitely (’indefinitely’ is the word doctors use when they don’t want to say ‘for the rest of your life’).

This means warfarin (or brand names Coumadin, Jantoven, Marevan, and Waran), aka rat pesticide, the original chemical for which came from plants (now synthetically derived). It acts as Vitamin-K inhibitor (Vitamin K helps with blood clotting), has lots of fun potential side effects, and goes with pregnancy like gasoline and flame. Of course, having any sort of Thrombophilia makes pregnancy scary enough. On the upside, during pregnancy I would be taking low-weight Heparin instead.

Heparin is not particularly kosher, being drawn primarily from the intestines of slaughter animals. Among China’s other questionable exports is raw heparin from pigs (another article here), which is currently under question because it is entirely impossible at this time to say which exact animals each ‘batch’ is made from, and exactly which farm that animal came from, or even whether it was given the usual barrage of piglet immunization shots. So there have been contaminations that are sometimes lethal.

But if the source is good, then Heparin (in daily subcutaneous injections, no nice pills like Warfarin) can be used during pregnancy without affecting the fetus, and thereby help prevent those potential miscarriages.

Ultimately, I need to go back on warfarin. I’ve been voluntarily off it for about a couple years now, though I take aspirin (but not regularly enough). Aspirin works differently, but still has anticoagulant benefits, though I know that for the long term I need to move to warfarin.

Hm.

I’m done talking for today.