Have you not been feeling well and glossed-over visits to the physician's office aren't helping you get to the bottom of your problem? Do you suspect you may be suffering from an autoimmune disease, but are not sure how to go about getting tested?
These days it is absolutely necessary that you be your own health advocate and be proactive about your health needs, especially when it comes to the management of an autoimmune disease or trying to diagnose one you suspect.
The following is a list of tips and steps you need to take to get the health system working for you so that you can be healthy and well!
Know your insurance coverage…whether is privatized or state-provided
a. This might sound silly, and if it does you probably don’t have insurance; because if you do, you know how difficult it can be to track your coverage. Regardless, this is the first step you can take to ensure positive outcomes at your healthcare visits.
b. If you need an exam or test that is not covered by your insurance, know that ahead of time and start saving to pay for it yourself.
i. Call the office’s billing department and let them know your situation. Request a payment plan structure even before you are billed for the service.
ii. Also consider looking in to a Health Savings Account (HSA). These personal savings accounts are tax-exempt and are meant to be used to pay for health services (and sometimes products) that your insurance will not cover.
Document all of your symptoms, even the ones you think don’t matter. Sometimes people mistakenly think that a symptom is unrelated to the disease about which they are concerned, so they never mention it to their physician, which can be a big mistake. Celiac, for example, can be the root of a number of symptoms that people often overlook because they do not fall in to the always talked about Gastrointestinal-upset category.
iii. If you start noticing clusters of symptoms that occur together or in a particular order, make note of that too. For example: Each day or most days you wake up with headaches, upon trying to get out of bed you feel nauseous, you feel lightheaded soon after being up and around, etc. Try to document these trends and patterns.
iv. Take that record in to your physician to use as evidence as to why they need to pursue a particular disease or cluster of diseases.
Know your health history
c. When you’ve been feeling ‘under the weather’ for a period of time or just come down with a really aggressive short bought of the flu, it’s easy to lose track of the days during which you were sick. Take a minute between naps or trips to the bathroom to punch the dates, the season, and the diagnosis (if you got one) in your phone or write them directly in your personal medical record. You might look back and see that you’ve had strep-throat 4 times in 6 months or that every year during the month of August you come down with a ‘random’ cough and very dry throat.
Know your family health history
d. A family history of a disease and/or health issue is one of the most powerful tools you have when it comes to getting the services and ‘attention’ you need. In regards to autoimmune diseases (and a host of other chronic diseases) Physicians and insurance companies cannot deny their genetic component.
e. Be specific and give as much information as possible: their disease diagnosis, your relation to the relative(s) (1st cousin, great-aunt, maternal grandmother, etc.), year of their diagnosis, any event or illness that occurred as a result of that disease, and if they are no longer living – the cause/year of their death.
Know what to ask for
f. Know the steps that a physician would take to diagnosis the disease. In regards to Celiac: a blood test is the first diagnostic tool, if the results indicate Celiac Disease, an Endoscopy is performed to confirm the diagnosis and to evaluate the extent of the damage. There is also a genetic test available for Celiac, but insurance providers often do not cover this test.
g. Also note that a good majority of people with Celiac Disease are deficient in (their bodies do not make) one of the antibodies (IgA) that labs use to diagnose Celiac via a blood test. In those cases their blood test results will come back "negative" for Celiac Disease but that does not mean that they don't have it! Another test can be run to determine if you are IgA deficient. Genetic testing is your best option in this case.
h. Ok, so now that you’ve done you’re homework and have comprehensive information that supports your desire to pursue testing for a particular disease, etc. then your next step is to: ASK to be tested for it! If you provide enough credible information that demonstrates why you should be tested, your physician and insurance company will have a hard time trying to convince you otherwise.
Record & follow-up
i. Perhaps most importantly, you MUST follow-up after having tests done. Again, know what you have been tested for and what results you are waiting on. After having a blood draw for potential Celiac Disease, I called to follow-up about my results. The staff informed me that my levels were only “slightly” indicative of Celiac. What? What does that mean? I knew something wasn’t right, so I asked them to send a paper copy of the results. When I received them in the mail I noticed that they had only sent 2 of the 4 markers. When I called to inquire they realized that the other 2 markers came in later from the lab (which can sometimes happen) and reported that, in fact, my levels were “off the charts”…a Celiac Diagnosis. Could you imagine how I’d be feeling today if I didn’t follow-up and know what I was looking for?
Build your case, be knowledgeable,be diligent & ask for what you need.