Spasmodic Dysphonia Caused by Thyroid Condition

by Julie Melody

julie@bni-mi.com as of October 10, 2009

Once I was stricken with SD I found talking in general exhausting, but it was especially difficult on the phone. Had I not been self-employed I am convinced that it would have cost me my job. It certainly cost me sales, and put a strain on my relationship with my business partner. I am an insurance agent, and am constantly on the phone. In my spare time I have loved being involved in community theater, storytelling and singing, so my voice not only helps me to make a living, but is an integral part of the things that I do to bring joy into my life. I had just turned 40 when I began to notice that I was having a problem with my voice. I had been through a period of extreme stress and had gained some weight. I decided to change my eating habits and to get fit, and I began an intense exercise program and dieted for the first time in my life. At the end of twelve weeks I was in better shape, and felt healthier than I had ever been in my life.

Shortly after that I noticed a problem with my singing voice. I was scheduled to sing and woke up the morning of the performance unable to hit and sustain a pitch. Within two weeks I started having a problem ordering in a drive through. It seemed that I couldn't speak loud enough, without having my voice start breaking up. Then I noticed that I had to think extremely hard to speak, and my voice started to cut out. The only way that I can explain it is that I could only get parts of words out, and I could not link words together.

Over the next few weeks my vocal condition continued to deteriorate, and in a short time I got to the point where I could not even say my name. I went on the net and discovered information about SD, but hoped that was not what I was dealing with. Although I'm not one to run to the doctor, I sought treatment immediately. After ruling out more serious life threatening problems, an ENT diagnosed me with SD. He simply handed me a piece of paper that said, dx=spastic dysphonia, rx=speech therapy. He was quite uncomfortable when I asked him why he hadn't prescribed Botox injections, because he realized at that point that I knew what he was telling me. My husband didn't understand why I was weeping once we got out to the car, so I explained it to him what the diagnosis meant. We decided to get a second opinion.

It took me 4 months to get into the voice clinic at University of Michigan. When I saw the voice specialist there he initially told me not to worry. He thought I had a functional dysphonia, which essentially meant that my voice wasn't working for some unknown reason, but he assured me that speech therapy would solve my problem fairly quickly. I trusted what he was telling me, and did everything that my speech therapist told me to do. After a month of treatment the speech therapist told me that he had never seen a patient who was so compliant, with so little result. He told me that my lack of progress meant that I really did have SD after all, and he recommended Botox. He gently tried to prepare me for the life long challenges that I would face. I was desperate to be able to speak normally, so I got on the Botox schedule as soon as I could. After my injection I was able to link words together and actually have a conversation for the first time in months. I was happy, but disappointed that my voice didn't sound like it had in the past. Shortly after my six-week check-up with the voice specialist, I started to notice that I had to think hard to talk again. Within two and a half months my voice had again deteriorated to close to what it had been before the injection.

It was then that I decided to withdraw from speech therapy and Botox treatment, and to seek another solution. It just didn't seem logical to me that almost overnight with very little warning I could permanently lose my ability to speak. For six months I was convinced that I had a psychosomatic problem and tried working on my head and getting in touch with repressed rage to no avail. I then embarked on alternative treatments such as acupuncture, relaxation, deep breathing, subliminal tapes and nutritional therapy to name a few. They really did nothing to improve my condition. Also, I noticed that there were things that aggravated my voice such as exercise, lack of sleep, and getting upset emotionally. I was beginning to lose hope. One emotional evening after crying and begging God to let me know what I needed to do to get better, I somehow got an answer. I can't explain how I knew, but I was absolutely convinced that I was in touch with what the problem was. I went to my doctors and asked to have my thyroid tested. My test results were mostly normal, but I did have indicators of autoimmune thyroid disease. Because I had all the symptoms of hypothyroidism and also had low body temperature, my doctors agreed to treat me despite normal thyroid blood levels. They did not believe however, that my thyroid problem had anything to do with my vocal problems. They first put me on Synthroid which is synthetic T4, the raw material that the thyroid manufacturers. I almost immediately began having horrible side effects. Then they wanted me to try Armor Thyroid, which is a natural form of primarily T4 with some T3. (T3 is the converted form of thyroid hormone) I tolerated it slightly better, but still had horrible side effects. I ended up in the ER thinking I was having a heart attack on more than one occasion. It turned out that I was building up toxic levels of T4 in my system. T4 was not what my body needed.

Finally after months of feeling like I was banging my head against the wall, I was on the web and made an interesting discovery. I discovered a thyroid condition that was the result of the body's inability to convert T4 to T3, which produces the same symptoms as hypothyroidism and then some. Basically it happens mostly in certain ethnic groups, to people whose ancestors have survived famine. Apparently Irish/American Indian is the worst combination which is what I happen to be, but any ethnic group with a history of dealing with famine can have this problem. Ironically, the same survival mechanism that allowed my ancestors to live through times of famine is my Achilles' heel today. The way it works is that during or just after a time of severe physical, emotional or mental stress (pregnancy, loss of a loved one, dieting, serious car accident, intense prolonged physical exercise, etc.) the metabolism basically runs in reverse. This is the same coping mechanism that allowed my ancestors to need less food than the people who died during the famine. Unfortunately, people with this trait today can get stuck in that reverse mode, and as a result become hypothyroid on a cell level.

I take 120 micrograms of T3 (liothyronine) twice daily which is the maximum dose. It took some time to build up to that dose, but once I did I had complete relief from my vocal problems and also from the other physical problems that I had been having within two months. I was able to speak normally for about two years; had a relapse when I significantly reduced the medication that I was taking, and have had a normal voice for a year now since I am taking the dose that proved to be therapeutic for me in the first place.

My doctor is in the process right now of determining if an iodine deficiency is contributing to this thyroid disorder. He suspects that if indeed it is, that I can significantly reduce the amount of medication that I have to take by supplementing iodine. He was amazed that my vocal problems resolved due to this treatment. He has agreed to gather information to document other SD patients who eventually have success stories similar to mine. If there truly is a thyroid connection to SD that other people can benefit from it I feel responsible to spread the word.

More detailed information about this thyroid disorder is available at www.wilsonssyndrome.com. The site also provides a list of physicians who recognize this problem, and who know how to administer treatment. Interestingly, vocal problems are not listed as a recognized symptom of the disorder on the website, however traditional medicine does acknowledge that hypothyroidism can cause deepening of the voice and thickening of the vocal cords, resulting in slower speech patterns. Also it is interesting that this is a stress driven thyroid disorder, and that so many SD patients have histories of severe stress.

Should you decide to try this treatment, I would be happy to be a resource for you. I am happy to address any questions or concerns that you may have along the way. I am committed to getting the word out about this, and to gathering documentation about other SD patients who benefit from this treatment. With permission I will pass along any information that I receive to my doctor who has agreed to help me with this task. I can't begin to express what a difference this treatment has made in my life and my families' lives. If I can help even one more person by sharing my story, all of the suffering that I went through during that dark time will have been worth it. There is hope, so hang on.

My love to all of you who are afflicted with this terrible disorder,

Julie Melody