Welcome

I have suffered from autoimmune disease since the age of 17 and I have several relatives who are also fighting autoimmune diseases. I have been diagnosed with Autoimmune Hepatitis (AIH), Lupus, and the Antiphospholipid Syndrome (APS). Family members have been diagnosed with Rheumatoid Arthritis, Dermatomyositis, Grave’s, Hashimoto’s, Vitiligo, and Type I Diabetes.

In the search for my diagnosis, I have seen doctors in six states, from every medical specialty, seven of whom were Rheumatologists. I had an extremely difficult time finding a doctor to take my symptoms seriously because most of my blood work was normal and I did not look sick. I have a Master’s degree in Aerospace engineering and solve puzzles for a living as a systems analyst. I resorted to reading medical journal articles to try to put my own pieces together when the doctors were finished looking. I ended up being a very complicated case and had the unfortunate luck to end up with the rarest and oddest of symptoms, as if all autoimmune symptoms aren’t bizarre enough! It took me 13 years to finally find a doctor who understood my body.

As a result of my search for a diagnosis, I’ve learned a lot about the immune system, doctors, and the medical system. I’ve been asked by numerous people who have heard my story how did I find out certain facts, or how did I find a certain doctor because they also have a friend who the doctors don’t seem to be able to help? Over time, I’ll post all the knowledge I’ve gained over the years, to give someone else having troubles obtaining that elusive diagnosis some other options to consider when you hit a brick wall.

Email: autoimmunediagnosis@gmail.com

Medical Disclaimer

This website is for informational purposes only. Readers are encouraged to confirm the information contained herein with other sources. Patients should review the information with their professional health care provider. The information is not intended to replace medical advice offered by physicians. Remember I’m a rocket scientist not a doctor.

Saturday, October 31, 2009

Invalid INR tests in APS patients

Most doctors don’t realize that INR tests may not be accurate in patients with APS or Lupus patients positive for Lupus anticoagulants. It was a nightmare to regulate my INR levels while I was on Coumadin for a DVT. I had to take a fairly large dose of Coumadin to get my INR within therapeutic ranges. Just when everything would seem stable, my INR would drastically spike to a high value. My blood work was like a rollercoaster and I had to have my INR checked weekly. After I was diagnosed with APS, the doctor explained that the antibodies themselves can cause the INR test to read too high or too low. Sometimes the finger stick machines will actually display an error when testing a patient with APS. Looking back, I was probably the patient that was really supratherapeutic (blood was thinned too much) even though the tests showed that I was subtherapeutic. This is another example of how lab tests are not always correct and if doctors are not aware the consequences could be dangerous. Below are some journal articles explaining the INR test issues. Their results showed that the chromogenic factor X and prothrombinproconvertin time assays were the most accurate methods to monitor coagulation in APS patients.

Monitoring Warfarin Therapy in Patients with Lupus Anticoagulants

INR Monitoring in Patients with Antiphospholipid Antibodies with Finger Stick INR Devices