I've been seeing a number of posts lately regarding unfortunate experiences with doctors, poor treatment protocols and severe symptomaic APS sufferers. Most of my posts focus on addressing causes and not symptoms. And I would like to once again encourage members of this forum to take a holistic approach to this very challenging condition.
First and foremost, I would like to reiterate that although we are positive for the APS anti-bodies, we do not really have just APS. What we have is systemic immune disregulation. This is why so many of us experience so many disturbing symptoms. Having APS or any other autoimmune condition means that, at best, your body remains in a constant state of inflammation. At times it may be acute inflammation, but very often it is just persistent and chronic.
A chronic inflammatory state will destroy your health. And very frequently, treating only the APS will do nothing more than keep you from clotting. And what I have found with myself, is that despite being fully, reliably anti-coagulated, I still experience a broad range of symptoms that I previously attributed to "having APS," to which a doctor will say, "But you're perfectly anti-coagulated; so you should not be symptomatic."
To a certain degree, a doctor who would say this is correct. But what he/she has failed to do is understand that Warfarin and/or Heparin (my strong drug of choice), only addresses the clotting; it does not address your overall inflammatory state. As such, you continue to endure the stress of constant chronic inflammation.
Most doctors do not bother to do a full range of labs that would get an accurate snapshot of your overall systemic health (or lack thereof). But when my doctor finally told me what tests to get to do that, what I found out was very revealing.
For one, I have adrenal issues. The constant stress of autoimmunity can place a chronic burden on the production of cortisol. This can lead to adrenal insufficiency, either at the adrenals themselves, in the pituitary or even at the hypothalamus, depending on the details of etiology. And if you add on other autoimmune diseases like many of us do (Hashi's, Lupus, Arthritis, etc.), then you are just compounding the stress. Then add on work, school, family, traffic, poor diet, etc. and you have a recipe for disaster.
So it is very important to find a doctor who is going to treat you as an entire human, not just one disease state. And I see here that many of us take the approach of trying to find a doctor who "gets it" with regard to APS. But that is only part of the puzzle. Because he may understand you need a higher INR, a different experimental med, or some other targeted therapy; but he may still fail to address your overall autoimmunity, in which case, you may end up running in place, or not making the type of health progress you hope for.
Best of health to all.