Introduction
Often times when I meet new people they see the scar on my neck and decide I'm the one to talk to about the thyroid disorders of themselves and their loved ones. This website has been created to address some of their concerns. Certainly I am not a doctor and in no way is this meant to advise or even influence your medical decisions. It is simply my experience.
Who am I?
I will try to describe myself categorically, in case you're wondering. I am female, born in 1980 in northern California. I am multi-ethnic. I am 5'3 and have never weighed more than 120 pounds. I have no academic background in the biological or physical sciences. I have never been a heavy drinker and have very rarely been exposed to cigarette smoke. I have never taken recreational drugs. I am allergic to compozine, and had an appendectomy at age twelve. I have irritable bowel syndrome (very not fun!!!!).
What is the thyroid?
The thyroid is a butterfly shaped gland in the neck. It releases thyroid hormones, which control a person's metabolism. Often times when a person is overweight he is advised to have his thyroid checked for hypothyroidism, or under activity of the gland. In my case I had hyperthyroidism, which is over activity. My thyroid was so oversized that one could see a bulge in my neck. There are other thyroid disorders in addition to hypo and hyperthyroidism.
Not Estrogen!
Many times when I tell people that the thyroid controls hormones their first reaction is, "Oooh! Hormones!" As if women with thyroid problems have estrogen racing out of control, and are possessed by some kind of mythical PMS twenty-four hours a day, while men with thyroid problems may be super viral. The thyroid produces hormones, but not estrogen or testosterone. Scientists classify the thyroid, pituitary and other hormone producing glands in the endocrine system, and these glands and hormones do affect one another, but not to the extent of the myths described above. IE, men and women both have thyroids that work pretty much the same. There are differences though. For instance, thyroid disorders can cause infertility in women. Also, more females are affected by thyroid disorders than are men. Some theories for this disproportion include monthly hormonal fluctuations in women; and possible damage inflicted on the female body by the chemicals in hair dyes, perfumes, makeup, perms, etc.
Cause of my Thyroid Disorder
Ultimately, scientists don't know the root causes of thyroid disorders. This actually makes me happy though, because I am tired of being told (by non-physicians!) I didn't exercise enough or it well enough to prevent disease. For six of the twenty-five years of my life I was a strict vegetarian, consuming loads of fiber. I exercise quite vigorously every chance I get. There were several chapters of my life though, which may have contributed to or caused my thyroid disorder. Also, let it be noted that my aunt (half-sister of my biological father) and paternal grandmother have hypothyroidism. Hyper and hypothyroidism tend to be hereditary.
Possible Causes in my Case
When I was approximately twelve-years old I grew 6 inches within one year. This is abnormal for females. Maximum female growth in one year is usually four inches. Perhaps there was too much strain on my body hormonally. At that time I was strictly vegetarian and did eat large amounts of vegetables, but since I could get away with it I also at large amounts of fried foods.
From age eighteen to age twenty-one I had depo-provera shots every three months. Some endocrinologists believe that this contraceptive can negatively affect the endocrine system.
From age nineteen to age twenty I worked in copy and print. Copy and print is dangerous for the body and is considered a carcinogen.
As a starving student I allowed a drug company to put investigational creams on my body. They paid $150 per experiment to place acne and eczema treatments on my back. I participated in four studies.
At age twenty-two I was bitten by a black widow. My arm swelled up like a balloon and I was given a steroid shot to bring it back to normal. In rare instances arachnid and insect bites have been linked to thyroid disorders.
My Symptoms
Extreme allergic reactions to spider and mosquito bites
Nausea, especially early in the morning, during exercise, and when nervous
Racing heart
Trembling hands and feet
Weight loss
Sleeplessness
Hair loss
Thyroiditis, a debilitating sore throat, which can be triggered by stress
Frequent bowel movements (at least eight each day!)
Lethargic feeling
Muscle Spasms
Depression
Headaches
Big Appetite
Initial Treatment
A general practitioner diagnosed me with hyperthyroidism after an extensive blood work up, known as a thyroid panel. The first step was to control my symptoms. He continued to prescribe higher doses of propranolol hydrochloride, a beta-blocker, to bring down my heart rate. Beta-blockers work by controlling certain nerve impulses, which in turn relieves the amount of work the heart must do. Propranolol hydrochloride never did do much for me. I remained on propranolol hydrochloride until the day of my surgery. This doctor presented me with three medically endorsed options for thyroid treatment: radioactive treatment, thyroid shrinking drugs, and surgery. All have draw-backs, and there is a ton of information about them on other websites. All of them terrified me, and my biggest fear was weight gain. I read testimonial after testimonial about how people who had been treated for thyroid conditions gained weight very easily. I am happy to weigh 112 pounds, a few pounds less than I weighed before my thyroid problems started.
Radiation
The general practitioner referred me to an endocrinologist. The endocrinologist advised me to have my thyroid shrank through radiation. This seemed like the best option, as drugs could have deadly side affects (this is very rare!), and surgery seemed so extreme and so expensive. I made the necessary appointments to have my thyroid radiated. But I had to cancel. I didn't feel comfortable with this endocrinologist, and since I wasn't comfortable with her I wasn't comfortable with her advise. Ultimately, I felt that radiation was unnatural, and knew that my thyroid would grow back to an unhealthy size even after radiation
Terror Drove me to the Holistic
Not wanting surgery, fearing the word "radiation," and terrified of the side effects of drugs, I was determined to find a holistic treatment. Ultimately, I think the scientists are right though. Only those three treatments work. Of course my personal assessment of these treatments is anecdotal and thus not conclusive. During the three months in which I participated in these healing sessions I continued to take propranolol hydrochloride to treat the symptoms.
First, I went to a series of acupuncture and Chinese medicine treatment sessions. The massage felt great, and I was able to follow the no sugar diet fairly easily. The acupuncture didn't hurt, and I felt very relaxed with a slower pulse after each treatment. The traditional healer told me she had cured many people with thyroid conditions and that she would have no problem healing me. The treatments were approximately $200 each, and I was uncomfortable with all of the New Age type of symbolism around me.
Next, I went to a homeopathic healer. Again, treatments were around $200 each, and she guaranteed results. She never examined me physically, and never asked for any blood or urine tests. She asked me to talk about myself and my symptoms for about two hours straight. I would tell her something about me, and she would ask, why. Then I would answer that question and she would ask why. It went on and on. She prescribed dog's milk, which tested like sugar, and ultimately I don't think this treatment helped at all.
A very famous curandera, or traditional Mexican healer came to the U.S. to make some money and I decided a visit to her was worth a try. She prayed with me and rubbed some plants including rosemary on my skin. She massaged the area of my arm in which the black widow had bitten me. She suggested that I continue to exercise with vigor to expel toxins through my skin. She advised me to swallow whole pieces of garlic, and to drink siete azares tea. After the treatment session my heart rate was normal for about twelve hours. I felt the type of calm the acupuncturist had produced in me. I gladly followed the garlic regimen, as garlic consumption helps prevent mosquito bites, and like I said, mosquito bites would generate extreme allergic reactions in me at the time. I only drank the tea when my throat hurt, and it did help.
On several occasions I had Evangelist preachers pray over me. I am not Evangelist. I believe in the power of prayer and I do think some people, regardless of religious affiliation are more powerful in this realm than are others. It made me happy that these individuals were putting their positive energies into helping me heal, but again this did not cure me.
I Don't Think This is Working!
After approximately three months (April 2002), I conceded that these holistic treatments would not help me. My heart was racing out of control. I began seeing one of the best endocrinologists in the state. He congratulated me on not having the radiation therapy. It was his feeling that this radiation could damage my reproductive organs. He prescribed propythiouracil (PTU) to shrink my thyroid gland. PTU is one of two thyroid shrinking drugs available in the U.S. It is the less likely of the two to damage a fetus. It was prescribed to me on the off chance that I, a married woman might get pregnant. Being pregnant while having thyroid disorders is very dangerous though, and thus trying to get pregnant while having these medical problems is ill advised. PTU causes thyroid shrinkage in approximately 30% of patients. It can also cause drops in a person's white blood cell count. If a person taking this drug feels a severe soar throat he needs to get immediate medical attention because this can be a sign of the white blood cell drop.
A Turn for the Worse
In approximately March, 2004 I was going through a particularly stressful time in my life. The pain in my throat became debilitating. I visited a general practitioner and she tested me for strep throat twice. Both tests came out negative, she couldn't figure out what the problem was. She prescribed vicodine for the pain, and it made the pain worse by inducing vomiting.
I feared the worst and went to my endocrinologist. Before he even took a look at me his nurse told me I had thyroiditis. He confirmed this diagnosis, and explained that whenever I had extreme stress in my life this condition would come about. Luckily, my white blood cell count was fine. I was very frustrated with the situation because I had been taking thyroid shrinking drugs for two years, but to no avail. I couldn't imagine living my life with that pain every time I got stressed out. I couldn't imagine running to an emergency room each time I got a severe bug bite and I was tired of my heart racing night and day. Pregnancy would be very dangerous for my baby, and I was tired of nauseous mornings. I avoided traveling because of the poor medical care in some countries. Surgery was my answer.
Waiting for Surgery
The wait to have surgery was several months long. In the meantime my throat was killing me. I decided to participate in a particular Native American healing ceremony. The whole time I had had thyroid problems I had known that the ceremony was accessible to me, but I was hesitant to participate. The ceremony is approximately twenty-four hours long and is hard on the body. I went though because I really needed it. I consumed the sacred medicine and my throat felt like it was on fire. The pain was ten-fold. Then, it suddenly ceased, and from May to August, at which time I had my surgery I was pain free. The next time I saw my endocronologist blood tests confirmed my thyroid was still ill. He was very surprised though about the way my pain had suddenly disappeared.
Pre-Surgery
Approximately ten days before my surgery I was supposed to take Lugol's solution in order to shrink my thyroid. Lugol's solution is liquid iodine. I only needed to take a few drops, but its sold by the liter, so I ended up with a liter of something I couldn't use. Very few pharmacies have Lugol's solution and even fewer will sell a liter, considering that only a few drops are needed. I found communicating with my surgeon and his nurse to be very frustrating. When I started sending them communications through the mail "return receipt requested" they sure jumped though.
Surgery
My surgeon had informed me that there was a small possibility my voice would end up coarse, either temporarily or permanently, and that there was a very small chance that I would end up with no voice at all. The first thing I did when I woke up from surgery was speak and my voice was intact. I felt normal after surgery and rejected all pain medicines. The only irritation I had was caused by the tube they put down my throat for me to breathe during surgery. It caused a tickle for several days and I didn't want to cough too much, as not to disturb my wound. My parathyroid glands remain and my calcium intake and processing, which is associated with these glands was fine after surgery. My heart continued to race for approximately two weeks. In total the surgery cost $22,000, including only one night in the hospital. My family and I paid approximately $1,500 out of pocket. My scar is two inches long. When the surgeon removed my thyroid he noted that it was four times larger than what is considered normal and very bruised. He informed it was, "a diseased organ that needed to come out." I know I made the right decision.
It's been almost a year...
My general practitioner continues to raise and adjust the amount of synthetic thyroid I take. I feel great, but at times I'm a lot more sleepy than what I would consider normal. Controlling my weight is not a problem. I did have one major scare though. Three months after surgery I completely lost my voice for three days. This was not related to the surgery though. The ear-nose and throat specialist I consulted believes that perhaps the pressure of the abnormally large thyroid caused some vocal chord damage, but ultimately my vocal chords are healing on their own. Technically I now have post-surgery hypothyroidism. I give thanks for my life and my health.
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