How to Trust Your Instincts When You Feel Your Diagnosis is Wrong

”For all those people whose doctors told them (and keep telling them) it’s all in their head”

This quote has stuck with me from the moment I read it. The quote is found on the dedication page of the greatStephen Harrod Buhner’s “Healing Lyme: Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsioses”. Harrod Buhner is a true pioneer and expert in treating Lyme disease, herbal medicine, and emerging diseases, and I would give up coffee for a year to pick this man’s brain. In all seriousness, if I could sit down with any human for one hour… it would be him. His knowledge is unparalleled.

Let’s re-read the quote…”For all those people whose doctors told them (and keep telling them) it’s all in their head”

First of all, it’s not. It’s real. Whatever you are going through, whether acute or chronic, it’s very real. Chronic fatigue is real. Chronic lyme is real. Mold toxicity is real. Heavy metal toxicity is real. NeuroInflammation is real. I could go on and on. 

I want to share my story with you.

“You have Hypothyroidism”, they said..

When I was 22-years-old I moved to Florida upon graduating college – yes I followed my boyfriend for his job but, hey, we’re married now with two kids- so it’s fine, right? I had an odd gap year before entering grad school so I took a job as a medical scribe in a pediatric emergency department. I was working random shifts. Some days 12pm-12am, some 7am-7pm, some 5pm-5am, and some 7pm-7am. A few months later, my hair started to fall out. I remember taking showers and balling my eyes out afterwards because of themassive clumps of hair that I watched being flushed down the toilet. I remember feeling drainedall the time, driving and constantly spacing out, laughing less often. I was living in sunny South Florida with beaches, palm trees, and never ending sunshine and all I wanted to do was sleep. 

Medical professionals, myself included, are the WORST patients. It took me a good 3-4 months of experiencing these symptoms to finally go see a doctor. I went to a family medicine practice near our apartment at the time. The doctor listened, drew my blood, and a few days later diagnosed me with Hashimoto’s Disease. Hashimoto’s is an autoimmune disorder that causes hypothyroidism (i.e. an underactive thyroid). When you have Hashimoto’s, your own immune system views your thyroid as something ‘foreign’ and attacks it as such. When this happens, your thyroid becomes damaged and it can’t make enough thyroid hormones (T3 and T4). In turn, this causes your thyroid stimulating hormone (TSH) to skyrocket.

This diagnosis did explain my symptoms at the time. The most common symptoms of hypothyroidism are fatigue, hair loss, sensitivity to cold, and poor concentration – all of which I was experiencing. At this point, my antibodies (proteins produced in response to that ‘foreign’ substance) were “>800”. The lab literally stops quantifying antibodies after 800. I was told by this doctor that there was nothing I could do to bring those antibodies down. They would be there forever. I was put on Synthroid and told that I would have to take it for the rest of my life. I was also told to follow up with endocrinology who would prescribe that rest-of-my-life Synthroid.

Keep in mind, I was 22. To put it into perspective, Hashimoto’s is most commonly diagnosed between the ages of 40 and 60 years old.

So, I did what I was told. I took the Synthroid. For the next few months I routinely saw the endocrinologist who drew my blood every 4 weeks to adjust my dose of Synthroid until we found the perfect dose. Even then, what stuck out to me was that the endocrinologist never acknowledged the fact that I hadHashimoto’s. Meaning, she never addressed the antibodies or the entire autoimmune aspect of what wascausingthe hypothyroidism. She never asked about it nor did she ever test my antibodies. She only looked at my TSH and T4 levels. And once my T4 was in range, I was officially granted my perfect dose of Synthroid.

Let’s back up a little bit. The thyroid makestwohormones: T3 and T4. T4 is solely produced by the thyroid gland whereas the majority of T3 is formed when an iodine atom is removed from T4. That process typically occurs in the liver and kidney, however, T3 is also produced in many other tissues throughout the body. Both T3 and T4 are regulated by TSH, which is secreted by the pituitary gland. When T3 and T4 decrease, there is an increase in TSH production, which stimulates the thyroid gland to produce more T3 and T4 in order to raise levels in the blood (this is called a negative feedback loop). Once the T3 and T4 levels rise, the pituitary gland then decreases TSH production.

So why would the endocrinologist not want to see my T3 levels as well? Side note here- T3 is responsible for 90% of energy for our power houses- mitochondria. So again I ask, why? Because Synthroid is synthetic T4. If my T4 is fine, the Synthroid dose is fine, job done. 

Not so fast, ma’am.

About two months into my perfect dose, I was still tired no matter how much sleep I got. I was still out of it all the time. I still had to force myself out of a flat mood. I didn’t feel right. I didn’t feel likeme. But hey, my hair stopped falling out. When I expressed this to the endocrinologist I was told that my thyroid levels were fine (again – meaning TSH and T4only). That I had to give it more time.

Alright, bet. So I gave it more time.

Another few months went by and I felt worse. I decided to try another endocrinologist. When I went to see him, I was hopeful that he could help. Boy, was I wrong. Once again, after only reviewing my TSH and T4 levels and re-upping my Synthroid script, I was told that I was fine. There was nothing more to be done and, let’s refer back to the original quote,it was all in my head. 

At 23-years-old I felt forced to accept that this was my new normal. 

About a year later I had enough. There HAD to be something more to do. I went and saw 4 more doctors with various specialties. With the first two, I was met with the exact same answers as before. With the second two, I happened to be early on in my pregnancy with Ava. So, both doctors placed blame on my pregnancy for feeling like I was. It is true, pregnancy is one of the most intense immune-activators that us women can possibly experience (i.e. amplifying any autoimmune or immune dysfunction issues). But how did that explain the past year and a half of severe symptoms I was experiencing? When I was taking the medication every single day; the medication that was supposed to help me?rhetorical question, it didn’t explain that

All I kept thinking was “this isn’t right”. I knew it wasn’t all in my head. I knew my symptoms were real. I knew there had to be some explanation. I knew it wasn’t normal for me to feel so dang exhausted all the time at 24. But no one was listening. I felt defeated, discouraged, belittled. Even thoughmy intuition was telling me to press forward, I didn’t. I was done trying. I lost hope. I was tired.

Throughout my pregnancy with Ava and onwards as the days morphed together with a newborn,  I continued to take Synthroid. Then life happened, a second baby happened, and I pushed my health aside for the next few years. 

By this point, I was 27 and just had my son. My head felt like it was 500 miles from my body. I had zero energy. I had to read the most simple sentences over and over again to comprehend them. My short-term memory was slipping. I had trouble retrieving words. My vision was getting blurry. My joints were locking. I had severe insomnia. I was just. so. tired. I remember apologizing to my husband because I didn’t have the energy to move my mouth to talk to him. I remember apologizing because it would take me 45 minutes to get out of bed every morning due to my ankles locking – leaving him to take care of both kids. I remember apologizing to Ava because I didn’t have the energy to play with her.  

It was time to seek a different path.

My mom had been seeing a functional medicine doctor and begged me to see him. I had a phone consultation with him, he ordered some blood work, and 3 weeks later confirmed what my intuition told me all along. There was something else. There had been something else for quite some time. There was an explanation.

I had Lyme Disease. 

6 years.

It took 6 years!

The journey to that diagnosis was a long, frustrating, disheartening one. I felt unheard. I felt unimportant. I, honestly, was made to feel flat out stupid. I questioned medicine. I questioned my own journey to becoming a nurse practitioner. It really messed with my head.

But I’m a better practitioner because of it. 

All this to say… if you’ve ever been told “it’s all in your head”, if you’ve ever felt unheard, skipped-past, or unworthy of the all-mighty doctor’s time… I’m here for you and I understand. I encourage you to be an advocate for your health or your children’s health.Trust your instincts. Keep pushing until you find a practitioner who will genuinely and seriously listen to you; one who will value what you are saying; one who will dig deeper to find the root cause. I promise, we do exist! 

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The Discovery Doc – Dr. CeCe Brooks – Atlanta Holistic NP