Kathleen Howes, Thyroid Thrivers
-42 years young
-Hypothyroidism, Hashimoto’s Thyroiditis, Pendred Syndrome, Hearing Impaired
-Diagnosed in 1998
My journey started at birth: I was born with sensory neural hearing loss, the first in my family! At the time the technology didn’t exist to further diagnose the cause of my deafness. The best they could do was set me up with hearing aids and a speech therapist.
My entire childhood was a struggle. I have always had trouble with reading comprehension and could not retain information. My mind always felt “foggy” for lack of a better word. No one ever tested me for a learning disability or hormone imbalance; this was simply attributed to my being deaf. I did make it through college, although with a lot of help. Looking back, it’s obvious how my hypothyroidism issues and even Hashimoto’s thyroid disease affected me as a child.
My hypothyroidism was eventually diagnosed in 1998, after college graduation. A large lump on my neck was the clue that something was wrong. It took that lump, to discover something I had all of my life. Along with a blood test, my diagnosis was determined.
I had a sub-total thyroidectomy in 1999 due to suspicious cells found during a biopsy of my goitered thyroid. The surgeon left a small piece of my thyroid untouched so that I would still have somewhat normal function.
After my surgery, I lost a significant amount of weight. I was feeling very hopeful and happy. To top it all off, I married my college sweetheart. We have three great children. My middle child was conceived through an IVF protocol because both of my fallopian tubes were found to be fully blocked. The third pregnancy is still a complete mystery to us… 🙂 Next month, we celebrate our 20 year anniversary.
In December of 2012, I learned that I was a candidate for receiving a Cochlear Implant. As a part of the testing, a CT scan was performed on my head to learn more about the cause of my deafness. The results from the testing showed that I have Mondini Dysplasia and an Enlarged Vestibular Aquaduct (EVA) in both ears. The underlying cause of this diagnoses is usually Pendred Syndrome, a genetic disorder that generally manifests itself with deafness and hypothyroidism. Around the same time my endocrinologist diagnosed me with Hashimoto’s Thyroiditis.
Wow! I finally had a cause for everything that had happened in my life. The bad news of course, is that there is no cure for any of this, just management of the symptoms.
The bad news of course, is that there is no cure for any of this, just management of the symptoms. Over the years I’ve had many people—including doctors!—tell me that my symptoms were “all in my head”. I have seen endocrinologists, surgeons, and even a psychologist. So it was nice to get some validation for all the symptoms I suffered, even as a child:
- At eleven years of age I constantly wore a jacket in school. I was always cold and the other kids teased me about it.
- I needed at twelve to sixteen hours of sleep at night, often more. My mother had to wake me so that I would get to school on time.
- My hair would shed during showers and clog the drain every few days.
- I suffered debilitating depression during high school. I did consider suicide in my junior year of high school.
- All the way through college I had what can be described only as “brain fog”. I couldn’t carry a conversation in person with anyone, deaf or hearing. People called me the dumb girl or thought that there was something wrong with me.
- When I walk through doorways and the light is right, I see a halo in my peripheral vision.
- With each childbirth I have lost more hearing. Certain types of physical stress, such as head trauma, mixed with the Mondini Dysplasia is known to have this effect.
In the spring of 2013, things suddenly took a turn for the worse…
Around the same time as my implant testing, the brand-name Levoxyl, from Pfizer, was recalled. Out of necessity, my doctor switched me over to a generic version from Mylan. Over the next six months I started to experience spasms in my neck. After a fair bit of research on my part, my doctor changed my prescription again, this time to brand-name Synthroid. The spams stopped but a host of new symptoms started: I gained weight, had constant bloating, could see a halo in my left eye, had persistent rashes on my lower legs, chronically fatigued, numbness in arms and hands, depression and anxiety.
During that time I received a Cochlear Implant for my right ear. Six months after the surgery I started hearing a “popping” noise, when I wasn’t wearing the processor. I learned that it’s a form of tinnitus, but instead of a ringing or whistling sound, I had very loud bubble wrap popping sounds, going off in my head. Ugh!
After a great deal of research, I learned that Synthroid and Hashimoto’s DO NOT MIX! Many Hashi’s sufferers prefer Levoxyl or even a desiccated medication like Armour. Fortunately name-brand Levoxyl was reintroduced earlier this year (2014) and I eagerly switched back. During the past few months my symptoms receded, but didn’t completely disappear.
To explain the most recent part of my story, I need to introduce you to my husband. He and I have been together since we met in college, almost twenty years ago. He’s been my rock and has never let any of my health problems scare him off. His family has experienced their own health issues: Both of his parents had strokes of varying degrees. His father and uncle had bypass surgery, and the uncle even has a pacemaker with defibrillator. He wants to live longer than them, and has become a bit of a health nut, as a result.
My husband switched to a Primal (Paleo) lifestyle after being on hypertension medication for nearly fifteen years. He was able to eliminate all of his medications and lose much of his “spare tire”! We couldn’t believe it. He encouraged me to give this crazy diet a try. For one, because I was having leaky gut a few months ago. It has actually healed my gut. It worked! Now, I only have to be careful with eggs and carbohydrates. My bloating has mostly disappeared, the halo in my vision is gone, and the rash on my legs has almost completely cleared up. I have also found that my chronic fatigue, anxiety, and depression are more manageable, but the amount of sleep I get (or not) drastically affect this as well. If I eat even a little grain, the symptoms come back pretty quickly, and take another week to calm back down. Diet really does play a role in changing our lives. Being healthy makes having thyroid, and all of my other issues, more bearable. We are all living better because of this change to Paleo.
Probably the most surprising effect of eliminating grains from my diet is that the “popping” tinnitus in my right ear is better. It’s not completely gone, but at least I don’t wake up at two in the morning with firecrackers going off in my head! Additionally, to my dismay, ice cream also causes my tinnitus. Who would have thought!
Am I the only one with all of these issues?
“How do I communicate on a daily basis with friends and family?” is a question I don’t often discuss, but one that plays a role in who I am and what my life is currently like.
I hope that my story inspires others. That it shows them that we all have wings. It depends upon us, whether or not we want to take flight. For me, I chose to use my wings and fly.
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