Diary of an Auto-Immune Survivalist

Staring at the Midmark Ritter 204, the examination bed called to me. I craved its soft comfort and embrace. That pristine, crisp paper sheet of protective hygienic covering was what prevented me from making myself comfortable. I yearned to lie my body upon that tan leather table and relax my muscles and close my eyes, if only for a moment. The bed may as well have been encased in glass. The white parchment crumpled at the slightest touch, and lying upon it would crush and tear it to pieces. Disturbing it would be the evidence of the attention-seeking behavior that I was often accused of when seeing a new specialist. That paper stood between me and a few moments of desired rest.

The night before, I had completed the e-check-in forms through the hospital system’s portal. The lousy website kept bumping me off and insisting that I log in again, over and over, costing me an extra hour of sleep. While reviewing the data in my medical file, I happily corrected a lot of outdated information, and sadly, I added my brother’s cancer diagnosis and his recent death. This doctor appointment was one of many that I had made over the years in a futile attempt to uncover the mystery of my illness. Every specialist visit, except for one, was a waste of my time and another mark against me. Today, I was armed with a blood test that could not be ignored and it came with a defined diagnosis of Hashimoto aka Auto-Immune Thyroiditis. My physician’s assistant sent the test over to the endocrinologist that I had chosen, and here I sat, waiting nervously.

In walked the doctor carrying a clipboard and a pen. She was the endocrinologist that the hospital system’s website claimed was a Hashimoto’s specialist. I had been waiting six months to meet the woman that I hoped might be able to change my life, and here she was; tall, lanky, glasses and a posh attitude. She was everything that I had imagined she would be. I waited as patiently as I could for her to prepare for our visit, I was quiet and sat still.

“Do you suffer from fatigue?”

“Yes, I do,” I answered. I couldn’t help myself; I glanced over at the exam table.

“Do you know what Hashimoto’s is?”

“Yes,” I said, interlocking my fingers and fidgeting. “It’s an auto-immune disease.” I bit my tongue, trying to keep myself from blurting out my entire twenty-year dilemma in a manic effort to explain my position. I franticly hoped that she could see the plea in my eyes and would look past the notes she had read regarding Illness Anxiety Disorder.

“Yes,” she said. She sat back in her chair, across the room from me, and looked at me from a distance. She had her right elbow on her table, with her chin resting on her thumb, and her glasses hanging loosely in her hand. She chewed on the temple tip of her spectacles, as she scrutinized me from a fisheye macro lens point of view. “I specialize in the thyroid gland. Do you ever feel hot or cold when other people in the room do not?”

I paused for a moment, to think. This was like a question that I had answered through the hospital’s questionnaire form, except she added more information to the question, “when other people in the room do not”. I had answered NO on the questionnaire, but I wondered if I would have answered differently if this latest information had been included. I recalled moments in which I was hot and cold when other people were not, but I gradually concluded that those moments were not extremes to a degree that were worth mentioning. However, if she had said cold intolerance, I would have had plenty to say.

“No,” I answered.

“Your T-4 levels are normal. Do you understand what that means?”

“Yes, I don’t have a problem with my thyroid,” I said.

“That is correct,” she said, watching my reactions, “you do not have hyper or hypothyroidism.”

“But I have Hashimoto’s,” I said, pushing back at her to acknowledge that.

The doctor sat upright in her chair as she set her glasses down on the table next to her. “Let me explain to you how the thyroid works. The thyroid is an endocrine gland that makes and releases three types of hormones…” She spoke rapidly, with no care as to whether I was able to listen to her words or keep up with what she was saying. This was not a lecture, this was a test of my behavioral reactions, combined with the ignorant misconception that I was not smart enough to understand the words that she was using. My heart sank as I listened quietly to her speech, knowing from experience that her actions were intended to be demeaning. I could see that she was hoping that it would make me respond in a manner that would allow her to force me to leave.

“I’m not a hypochondriac,” I told her. “I don’t want thyroid medication. I am looking for a better solution to the beta-blocker that I am currently using that keeps my convulsions and tremors under control. It’s hard to explain, but I have these seizure-like episodes and the only medication that helps prevent them is a beta-blocker.” I, at once, regretted gifting her more information than I had intended. I was terrified that she would try to use her influence within the hospital to have them stop the only treatment that was currently available to me.

Her eyes swept over me, from head to toe. “Healthy food and exercise would be a good place to start.”

I nodded my head, acknowledging her statement. Damn, I thought to myself. When all else fails, they always play the fat card. It didn’t matter if I was 120lbs or 200lbs, it was always my weight to blame. My weight fluctuated so often that I had four varied sizes of clothes in my closet; Small, Medium, Large and XL, and a few XXL tossed in for those “just in case” months. I had hit a whopping 220 lbs while taking the duloxetine for my nerve pain. They measured me at 5ft 1 inch. Now that I had stopped the medication I was dropping the weight quickly. I did not offer her that tidbit of info, I did not want to lose that script before deciding that I was not going to need the medication.

The doctor turned the conversation back to Hashimoto’s, picking up and wagging her glasses at me. “We don’t treat Hashimoto’s,” she said. “We only use the Thyroid Peroxidase Antibody test to decide who is at risk for developing hyper and hypothyroidism. There is no treatment for Hashimoto’s, we only use the test as a marker.”

I bit my lip and chewed on it. This office had the highest recommendation for Hashimoto’s specialists in the area. They patted themselves on the back in their advertisements about their forward and progressive healthcare.

“Have you ever heard of Mast Cell Syndrome?” I asked.

“Yes,” she said, gently smiling back at me. Her social skills were impeccable.

“Is there a test for that?” I asked, nervously massaging my hands in my lap.

“Yes,” she said, once again observing my body language, as she gathered information for her “psych” report that she would later add to my file. She kindly evaluated me as having “anxiety”.

“What is the test called?” I tried not to sound desperate. This interested me and I perked up at the possibility. It is rare to find any specialist that has ever heard of, or acknowledged, the existence of Mast Cell Syndrome, I did not know there was a test to diagnose it.

“I don’t know,” she said.

This was turning into a game of cat and mouse. She enjoyed teasing the emotion out of people. “Who would know?”

“A specialist, I suppose,” she said.

“What sort of specialist?”

“I don’t know,” she said, smiling. “Maybe an allergist.”

“I’ve been to different allergists,” I said, she would have known that. “None of the allergist that I have seen in this area test for Mast Cell Syndrome, they don’t even recognize it as a real illness.” My shoulders slumped and I continued massaging my hands and chewing on my lip. There were other things that I could have been doing today. A parade of tasks were trotting through my head, and it included snuggling with yipping puppies with tennis ball addictions.

“I see in your chart that you have anxiety and depression,” she stated. She had put her glasses on and she was typing away on the computer, signaling the end of our visit.

“I do, but I don’t,” I said, I shifted about in the uncomfortable, stiff chair. “My ovary ruptured, because of an ovarian torsion. It went untreated for sixteen years, because no one believed me. The pain was unbearable, it damaged my nervous system, so, what I feel isn’t normal anxiety, it’s nerve damage. It looks like anxiety, but, to me, it’s excruciating nerve pain. I’m depressed because I lost two decades of my life because doctors ignored me, and my pain, and I didn’t receive the medical care that I needed in time.” I screamed inside my head, at myself, to shut my mouth; Shut up! Shut up! Shut up!

“Ooh. That sounds awful,” the doctor said. She bit her lip in mock sympathy as she continued tapping away at her keyboard while looking at the computer screen. “Must have been painful.”

“Yes, it was. It was awful,” I said, sinking into my chair, wishing that I had a coach to help me through this, even a cheerleader would do. It was a loss and I was past any opportunity I may have had of winning any help from this doctor. I regretted not allowing my husband to accompany me.

“Have you lost any weight without intending to? Within the last few months?”

I took a moment to ponder the question. I considered saying NO, but I was losing weight without trying to, possibly from the medication change.

“Yes,” I said. “I lost about 20 pounds in the last eight weeks, but my weight is always fluctuating, especially with medication changes.” I should have said NO.

“20 pounds in two months,” she said, feigning surprise, as she ushered me out the door. “Now, that’s concerning! And something you should be talking to your doctor about right away. That is definitely something worth seeking out attention for.”