How to Advocate for Yourself in the Western Medical System

I’m not a doctor. I’m not a nurse. “Patient” used to be my title. I now refer to myself as “advocate.” I am my own advocate. My experience in the western medical system left me disheartened and sick. I think that many people swim along without stopping to question the standard of care. But the standard of care doesn’t address the root of chronic symptoms. The standard of care often belittled my observations and left me without answers. If I were to be in a serious car accident or otherwise have an acute injury, there’s nowhere in the world I’d rather be than an American ER. In my opinion, western doctors handle acute injuries well. However, from my experience, the outcomes for people with chronic conditions are not the same. Let me share with you what I’ve learned. This is how to advocate for yourself in the western medical system.

WHERE MY SELF-ADVOCACY BEGAN

When I first became ill in 2015, my primary symptoms were weight gain, constipation, extreme fatigue, hair loss, and severe brain fog. My mother has Hashimoto’s Thyroid Disease. She caught my pattern of symptoms right away and told me to see my general practitioner. I made an appointment. He rans labs, notably looking at TSH only. (TSH is a measure of how much thyroid hormone the pituitary gland is requesting. It’s an indirect measure of thyroid health as it does not show how much thyroid hormone is actually circulating and available to cells in the body.)

At my follow-up appointment, I was told that my thyroid was “normal.” Meanwhile, my hair was falling out in handfuls. I was so fatigued, I couldn’t maintain my normal routines. My brain fog was so thick that I struggled to read. I told the doctor that every woman on my mom’s side of the family has Hashimoto’s, going all the way back to my grandmother. He continued to call me “fine.” When I asked about the weight that I could not lose, he told me that I’d “been pregnant too much.” (I had just suffered my second miscarriage in a year….also a sign of low thyroid hormone.)

This was a doctor who was adamant about following the standard of care. He did what he’d been taught to do in medical school. He ran TSH. His failure, in my opinion, was his unwillingness to consider my family history, or look at any other lab markers. When I requested that he run FreeT3 and FreeT4 to look at circulating hormones, he flat out told me that was “unnecessary.” I left that appointment feeling broken, belittled, and confused.

MY PUSH FOR ANSWERS

Here’s one thing that I learned very quickly. If you don’t push for answers, and continue to seek help, your healthcare needs are very likely to fall through the cracks. At the beginning of my journey, I didn’t know how to question a medical office before booking an appointment, so I booked doctor after doctor after doctor until I finally found one who would run a full thyroid panel as I requested. Lo and behold, while my TSH was “normal,” my FreeT3 and FreeT4 were the very lowest possible “normal” value. Meaning, a drop of just .1 would cause me to be officially “low” in circulating thyroid hormones.

Even with these lab results, I had to push for treatment. The doctor who had agreed to run the labs wasn’t confident that I needed to take thyroid hormone. I asked for a trial dose and she agreed, but here’s the thing. When you first begin to take thyroid hormone, you need to retest your values every four weeks or so to see if you’ve leveled out at the right dose. While this doctor agreed to put me on a low dose of thyroid hormone, at retest, she would not raise the dose high enough to actually make my symptoms go away. Once again, I had to seek out another doctor. The western standard of care leaves thyroid patients sick and fatigued. Had I stopped pushing, I fully believe that I would still be sick today.

MY PERSONAL PATH TO OPTIMAL THYROID CARE

I had to leave the western medical system to find a doctor who would fully relieve my thyroid symptoms. I found an integrative doctor who was willing to push my dose high enough to put all of my thyroid symptoms in remission. This doctor began in the western medical system. She had many years of ER experience. She earned a functional medicine license and opened an integrative practice when she realized that the standard of care for chronic conditions does not actually treat or heal patients.

To this day, I see a similar practitioner, though I’ve moved and no longer see the one who first helped me. My recommendation for thyroid care is to see an integrative, naturopathic, or functional medicine doctor. It might be possible to find someone in the western medical system who properly handles thyroid care, but I think it’s very difficult because the standard of care does not look beyond the value of TSH. Whether you choose to stay in the western medical system or stay, use the questions below to help you find a physician who will look beyond the customary (failing) standard of care.

DO YOUR OWN RESEARCH

Looking back, I now know that toxic mold exposure was at the root of my many, many symptoms. During the five years that I lived in that toxic house, I was diagnosed with a new autoimmune disease or condition every three months on average. I saw a rheumatologist, oncologist, hematologist, gastroenterologist, and neurologist. If there was an “ologist,” I likely saw them. At the beginning of that time, I would go to a doctor’s office and list all of my symptoms, many of which seemed unconnected. One doctor said to me: “You can’t possibly be feeling all of that.” Another said: “I think it’s all in your head.” When I couldn’t get the help I needed, I began to research, almost obsessively.

I joined Facebook groups of people who experienced similar symptoms. This helped greatly, if only in that it sped up my research because resources were freely shared. I learned to read and search for pubMed articles. In truth, the only way that I reached any headway at all was to identify a suspected diagnosis on my own. I would then make an appointment with a doctor and request specific tests. This is how I diagnosed myself with SIBO, Celiac Disease, Colitis, Carbohydrate Malabsorption, and Mast Cell Activation Syndrome. Every single time, the doctor would doubt the diagnosis, agree to the tests, and then act surprised to find out I’d been right.

To advocate for yourself in the western medical system, you really must do your own research. This is not just for diagnosis. Understand the drugs that are being recommended to you. Never ever was I given a full list of side effects other than fine print. Also, know that drugs used in the western medical system are designed to alleviate symptoms, not heal.

KEEP A RECORD OF SYMPTOMS

Along the way, I learned to keep a detailed record of symptoms. Keep a journal with dates, times, and specific symptoms. Look for patterns yourself before you take the list to a physician. When you’re ready to go to an appointment, condense your list into one, short note. I found that my mind would often go blank in a doctor’s office. (Thank you brain fog.) But if I had a printed list or note, I could more accurately voice my concerns. Also, I found that doctors were more likely to take me seriously if I had documentation of my issues.

ALWAYS ASK FOR A COPY OF LABS

In the beginning of my health journey, I would wait for a call from the doctor’s office. This was generally done by a nurse who would say, “Your labs look great! We’ll see you next year.” The things is, often my labs were not “great.” They weren’t even “good.” That was just the spin that was placed on my labs by the office. Always ask for a copy of your labs. Most hospital systems have an online portal now. Be sure that you can log onto your account and view your records. Often, what someone deems “good enough” is actually not ideal.

Learn to read your own labs. Research functional lab ranges. “Optimal” is not the same as “normal.” You can advocate for yourself in the western medical system when you know how to read basic labs.

STAND UP FOR YOURSELF

You know your body better than anyone else. If you feel that something is wrong, stand up for yourself. Don’t allow your concerns to be pushed aside. It may be that you need to find a different doctor. I have no respect for a physician who belittles my advocacy. I once walked into a doctor’s office and saw a doctor drinking from a mug that said, “Please do not confuse your google search with my medical degree.” Whoo. I left and never went back. That kind of snark reveals the doctor’s attitude toward patients who advocate for themselves.

Had I not researched my symptoms and conditions on google or pubMed, I would 100% still be sick. Look for a physician who will work with you. Stand up for your dignity. Do not be bullied or belittled. I think some people were taught that disagreement is equivalent to disrespect. That’s not the case. It’s okay to stand up for yourself.

HOW TO FIND A “GOOD” DOCTOR

In the beginning of my journey, I went to a lot of different doctors. I have since learned to ask questions over the phone before I even book an appointment. This is necessary to advocate for yourself in the western medical system. These things have proved useful in my search for a “good” doctor:

• Look for recommendations in like-minded online groups
• Ask questions BEFORE you make an appointment (see examples below)
• If the practitioner has a social media page, follow them
• Be willing to move on if you are not served by a particular physician or office
• Ask questions before you book an appointment
  • Does the practitioner incorporate nutritional and/or lifestyle counseling?
  • Does the practitioner look for a root cause of inflammation and disease?
  • Does the practitioner test for vitamin or mineral deficiencies?
  • Does the practitioner rely solely on medications to treat disease?
  • Does the practitioner allow patients to request tests?
  • How much time does the practitioner spend with each patient on average?
• If looking for a thyroid doctor specifically, I ask:
  • Does the practitioner routinely run a full thyroid panel or only TSH? (A full panel is TSH, FreeT3, FreeT4, TPO Antibodies, Thyroglobulin Antibodies, ReverseT3.)
  • Does the practitioner prescribe LDN (Low Dose Naltrexone)?
  • Dos the practitioner prescribe NDT (Natural Desiccated Thyroid) or only Synthroid?
• If specifically looking for a functional medicine, integrative, or naturopathic practitioner, I ask:
  • Can I pay by appointment?
  • How much are appointments?
  • On average, how much do patients spend on supplements each month?
  • Are supplements patient specific or do all patients end up with the same recommendations?
  • Is care expected to be finite or ongoing?

I hope that you can use this information to advocate for yourself in the western medical system. Be brave. Be bold. And above all else, don’t give up!