Getting Diagnosed with my Autoimmune Disease

Getting diagnosed with Hashimotos and PCOS was one of the most surprisingly relieving things I’ve experienced. I began losing hair in a small patch in February of 2015. I noticed more hair than usual coming out in my hairbrush, but I didn’t think much of it until I discovered a bald patch the size of a quarter on my scalp. First, I panicked. I legit lost my shit. In a world that is so focused on health and beauty, here I was losing my goddamn hair. After a bit of a sob sesh, I started doing some research. I quickly learned that while research is helpful, it can also invoke a hopelessness inside you upon looking at all the worst case scenarios. Alopecia totalis? “Omg I’m going to lose all my hair!” Treatments for alopecia? “Steroid injections” or “nothing” or “eliminate stress.” HUH?

I had begun working my first “real” job out of college as a volunteer coordinator at a local animal welfare organization. The job was everything I had hoped for, though I found the workload stressful and the pressure from my boss extreme.  There was no way I saw that changing unless I quit. I decided to start seeking opinions from healthcare providers. The first doctor I saw drew my blood but told me it was unlikely there was anything we could do but wait for my hair to grow back. The second healthcare provider I saw drew my blood and said there’s absolutely nothing wrong with me and I should probably see a dermatologist so they could give me steroid injections. The third doctor I saw was not a doctor at all, but an ultrasound technician. I talked to her about my struggle and after looking at my thyroid, she said I should probably look into seeing an endocrinologist ( a big no-no for techs, but I’m so glad she offered that advice). The fourth doctor I saw (the endocrinologist) told me that I have Hashimotos antibodies. She said she could not diagnose me with Hashimotos until more of my thyroid was destroyed and it was upon that destruction that I would need to start treatment. She said I could go on hormone medication if I wanted to, but that my T3 and T4 were still within a healthy range.

First of all, what kind of doctor says “let’s wait until your thyroid is destroyed to start addressing this problem?” What doctor says “you can take meds if you want to, but I don’t think it’s necessary?” We go to see healthcare providers because we believe they understand our bodies better than we do and that they will help us find a solution, not leave us waiting for our bodies to malfunction. Every time I received test results from doctors who would not help me find answers, I wound up in my car sobbing uncontrollably. I knew there was something wrong and I wasn’t going to take “wait and see” for an answer.

K, back to volunteer coordinating. Part of my job was to interview potential volunteers and find a good spot for them in the shelter.  One of these interviews found me in front of a young woman explaining she had to leave her job, school, and most of the things she loved because she was so sick from her autoimmune disease. She was finally starting to feel like herself again and wanted to volunteer in the community. Ding, Ding, Ding! I started telling her a bit about my journey navigating the health care system with what I thought was an autoimmune disease. Boy, could she relate. She had been going through the same thing a year ago. She mentioned the Autoimmune Paleo diet was what helped her begin to heal her body. I was a vegan at the time and asked if I might be able to heal my body that way. “No way,” she said. She suggested I visit the Autoimmune Paleo (now Autoimmune Wellness) website to explore more about autoimmune disease. I went home and did just that.

Within a week, I was holding Mickey Trescott’s Autoimmune Paleo Cookbook in my hands. My husband and I were heading off on a road trip and I read him the introduction to the book out loud. We were both surprised to learn how parts of Mickey’s story mimicked my own hopeless journey of finding a diagnosis and a means for healing. We knew what I needed to do and, after reading the list of foods you CAN and CANNOT eat, realized this was going to be a challenging journey (more on transitioning from vegan to paleo later).

I went on the diet for about 3 months and noticed that my bald patch began to grow back. WOOT-WOOT! It was thrilling to see the fruits of my labor (or whatever). I was so excited that I immediately switched to a gluten-free diet, assuming my body had healed. In all honesty, I knew this wasn’t the right way to go about things, but I was so tired of the isolation and loneliness that came with the AIP diet that I gave up.

I was doing fine for quite some time, though I began losing hair again and always found myself exhausted. I decided to go back to the same doctor who said “wait and see” to get a follow-up blood test and ultrasound. When I arrived, they basically told me everything was fine and refused to do an ultrasound to see if my thyroid had changed. They also said the AIP diet was ineffective and they were tired of patients trying to change their diet to improve their thyroid. More tears. More frustration.

I had recently joined an autoimmune paleo support group on facebook. I reached out to see if anyone could suggest a local practitioner who understood autoimmune disease. YAS QUEEN! Nearly everyone suggested going to Roots Medical. I made an appointment to get my bloodwork done and within two weeks I was sitting down with Tracy and diving into my bloodwork results. Not only did I have Alopecia, she said I absolutely had Hashimotos (we didn’t need to wait for my thyroid to die) and I also had Polycystic Ovarian Syndrome (PCOS). I believe most people outside of our community would expect me to be sad by hearing these things, but it was quite the opposite. I felt like this was something to celebrate! First, I had met a healthcare practitioner who believed me! Second, they could put a name on all of the things I had been experiencing. Third, they believed that I COULD heal and suggested working with a nutritionist is the best way to get started.

I cannot stress how important it is to advocate for yourself. If you aren’t hearing what you need to hear from healthcare providers (as in, everyone is just saying you’re too stressed), keep jumping around until you find someone who will LISTEN. We know our bodies best and we are our biggest advocates when it comes to healing. If you think you have an autoimmune disease and you don’t know where to start, check out Paleo Mom and Autoimmune Wellness to get a better idea of what may be happening in your body. Join an autoimmune paleo support group on facebook, ask who those people use for their healthcare practitioners, and find someone who can help you navigate your symptoms. I know it is easy to feel helpless and alone in this process, but there are so many of us out there who have found help and hope, and you can, too.

Blog Posts Coming Your Way Soon:

Transitioning from Vegan to Paleo

Hair Loss: Advice for Making Your Hair Look Decent

Navigating Autoimmune Disease with Your Partner