Kathleen Howes, Thyroid Thrivers
Thyroid Nation

-42 years young
-Massachusetts, USA
-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.

KH-weddingAfter 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!

Hearing-Impaired-Since-Birth-And-My-Hashimotos-Thyroid-JourneyAfter 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?

It’s hard not to feel alone sometimes, even with wonderful support. I figured I’d get on twitter to see if anyone had the same thyroid and/or Hashimoto’s problems as I have. I was shocked. I’m happy to know I’m not alone, but am also sad for ALL those who are suffering as well. The numbers are astounding.
“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.
Honestly, I live my life like it is normal to me. Sometimes I get frustrated and angry. Especially when I realize that some people are being unkind and acting like idiots. Thankfully, instead of letting it be hurtful, I’ve learned to just let it go. I picture my loving family and am grateful for what I do have. I remind myself how lucky I am, to have them in my life.  The fact that they love me for who I am, flaws and all, is just a bonus.
I was born hard of hearing, as I mentioned and wore hearing aids since I was 3. I went to school for the deaf until middle school. At that point, I desperately wanted to challenge myself, with other hearing children, in public school. So, I enrolled. WOW! It was a real cultural shock for me. There was a small deaf program in the public school system and they provided American Sign Language (ASL) interpreters and note takers for every class. It took me a year to get used to the system, but I did. I continued to stay in public school all through high school. I didn’t really have hearing friends, but they always said, “hello” with a big smile. I stayed with deaf people because we used ASL to understand each other and it was just easier.
When I was at school for the deaf, I had a speech teacher and she was a nun. I remember 9 years of strict speech training with her, before changing schools. As of today my speech is pretty good. Although people can tell I have a very nasal voice (deaf voice). 🙂 Some people realized that I was deaf by the way I talk. They would graciously slow down for me. Especially inside of hospitals, they’re really conscientious about that.
I met my best friend and husband at college, RIT in Rochester, NY. He has his hearing and we found each other through the bulletin board system (BBS) on the computer. Remember that?! We found that we have common interests, obviously. He did not know that I was deaf, until I typed “SK” meaning stop keying. This is normal for deaf people who have or who have had TTY (telephone device to communicate through typewriter with a phone). Pretty old now. Everyone uses email and chat programs it seems. We became instant friends in person. I taught him sign language and he taught me how to improve my English.
My three kids are hearing as well. My oldest daughter is 11 and she uses sign language with voice, since she was about 6 or 7 years old. My hearing loss has progressed at the time. I took it hard. But, I started teaching my children sign language. My second daughter is 5 now and she uses full time sing language with no voice. So cute!  My son uses few signs like: milk, water, cookie, food, potty (pinching nose…LOL!) mommy, daddy, I love you. Not quite perfect but getting there, with voice.
I use my voice full time with little bit of sign language with my family.  I am very close with my mother. She is the only person I can understand over the phone! I use the phone with my hearing aid side, not the cochlear implant side. Forty + years ,I know my mother’s voice very well. I have cochlear implant and I have a hard time distinguishing sounds and words because they sound so different from what I remembered, many years ago. From what I understand and have recently learned, it takes years of practice!  It’s only been a year for me now, so I have a long road.
Having Hashimoto’s thyroid disease really stinks sometimes. But, I am learning more and getting more and more healthy with each passing day. I do get tired from time to time and have occasional brain fog moments. But I’m a mom, so that comes with the territory. I take it all in strides. I learned to do that a long time ago.
All in all, I’m doing pretty well. I have a wonderful and loving husband and 3 fantastic children. They keep me smiling on hard days. I am lucky that I do have some hearing. I’m also learning to manage my Hashimoto’s thyroid disease pretty well. Not to mention my  fabulous support system and amazing mother. My life is simple, in some ways, hectic in others, but it is more than complete.

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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