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One Parent's Empowerment

I would like to tell the story of my daughter, Emily, now in college, and how she became diagnosed with A T4 to T3 conversion thyroid disorder. I hope that other parents will learn from our experience, although the presenting features of this disorder can vary greatly.

Emily had her first ear infection after a cold when she was seven months old, and was placed on antibiotics. She began having a few every year, and they seemed to becoming more and more frequent. Although medical literature seemed to discount the connection, cold wind often seemed to precede the infection. I made her wear hats in cold weather. Finally, when it could no longer be put off, tubes were put in her ears. That stopped the ear infections. However, at that point, she began having tonsillitis. Strep infections seemed to be the norm. When she was ten years old she had her tonsils removed, and her ENT physician indicated that they were the largest tonsils he had ever seen. She did not want to eat or drink anything after the tonsillectomy. She became weak and thin, and finally I had to take her to ER a week later to get rehydrated. She had lost quite a bit of weight at that point. Another interesting thing happened after her tonsillectomy-- her voice changed (though her doctor called that impossible). She was pretty weak and tired after the tonsillectomy, but I expected that. She slowly began to gain weight, even a little more than was necessary. A couple of months later, she tried to play on a soccer team but almost collapsed from the heat during practice, and she had to quit.

Ear infections and strep infections were a thing of the past. She went on to sinus infections. She also slept more than her friends, and had a fairly early puberty (though it was expected to be late, because she didn't lose all her baby teeth until she was eight years old). Always large for her age, her growth stopped completely with puberty, and now she is rather short. Her best friend had parents that smoked, and I noticed that she often got a sinus infection after spending the night at her friend's house. We used to have battles about whether she should be able to spend the night there. It would always mean a round of antibiotics. She continued to need more sleep than her friends, about nine hours per night. It was difficult to wake her up in the morning. She would sleep through the alarm, and I had to wake her up to go to school by shaking her.

I began to suspect that she was hypothyroid. My physician father had put me on Armour thyroid when I was going through puberty, although when I was older I no longer took it. He did this without the benefit of objective tests, which he said were inaccurate. I really didn't know anything was wrong with me, but I guess I exhibited some symptoms with puberty that he recognized. I would sometimes plop myself in front of the TV and not move. Also I became very achy with my periods. I began taking thyroid hormone before going to camp one year. When he came to visit on Parents' Day, he didn't really say even "Hello" until he looked at me and said, "I was right to put you on thyroid hormone." I had grown an inch and not put on any weight. I had more energy. I also told him that I could tell that there was a counselor who needed thyroid hormone because she moved slowly like I used to, and she was overweight. He said, "You are probably right." So it was not all that difficult to see the symptoms in my own daughter.

I talked to her pediatrician and told him the symptoms, and asked about hypothyroidism. He examined her thyroid gland, but didn't run any tests because he said thyroid hormone kept one's own gland from producing hormone. My son has an endocrinologist and I asked her about Emily. She agreed to run a "screening" test without seeing her. The screening test turned out fine. (I believe it was a T4 test). I had read Solved:The Riddle of Illness by Stephen Langer about subclinical hypothyroidism. But I also trusted our pediatrician and didn't know where to turn. And she wasn't in real distress. However, the sinus infections were becoming more and more frequent, as was the antibiotic use. She "graduated" from penicillin type drugs to Ceclor to Augmentin. She went from a week's use to two weeks, and then two rounds of two weeks each. The day before going away to college she had another sinus infection, after having been free from them for months. Off and on she was at student health, and had referrals to ENT physicians. Finally, toward the end of the school year, she was again rid of the recurring infections for a while. She had adjusted well to college, although, like many college students, had put on about ten pounds which she didn't need. She dieted and lost some weight.

That summer she had a job away from home in a mountainous area (altitude of 7000 feet). Her sinus infections did not recur. She had a good time doing some hiking with her friends and working. But one time she called me in a state of complete emotional breakdown. It had to do with a seemingly minor incident involving her supervisors at her job. However, this caused her extreme distress, and I could tell this distress affected her physically. The next time I heard from her was a couple of weeks later. Because we have a relative with diabetes Emily was familiar with that disease, and had gone to the health clinic to get checked for it. She had begun having frequent urination and thirst. This can be signs of diabetes or other disorders, but I think may be affected by altitude. She also said she was sleeping about eleven or twelve hours per night and then taking naps after work. She was still hiking, etc, but she had to force herself to do it. She was happy because the blood sugar screening came back LOW. In my opinion though, too low. She obviously had some hypoglycemia. I knew that hypoglycemia could precede diabetes, so I was concerned. I made an appointment with an endocrinologist for one of the three days that she would be home before going back to college. This appointment was our first really bad experience with a doctor. He ended up doing only a bare minimum of testing (although I was not familiar with tests at the time), discounted her symptoms, ignored the low blood sugar readings that she had. By that time we had documented several low blood sugar readings. Then it turned out that he ignored his own lab findings of low blood sugar. First he said that the blood had sat around a while before testing and that accounted for the finding. But when I asked him who was going to pay for an invalid test, he discounted the result saying that "normal people often have abnormal readings" and referred her to any family doctor in her college town. I also found out later that her blood pressure had been lower standing than sitting in the doctor's office, a possible indication of mild adrenal problems and neurally mediated hypotension. I had no choice but to send her to college two days later, cross my fingers, and pray.

I knew my daughter, and I knew that her problems were not emotional in origin, as the doctor had hinted. She was very well adjusted and outgoing. She had never had emotional problems at all, except for a couple of panic attacks in high school. The emotional outburst over the summer was very atypical, and I thought had worsened whatever physical problem had been there at the time. But I had no idea where to turn. In a way I am grateful that the doctor she saw was so terrible that I decided to take matters in my own hands. Also, I had a good role model in my own father, who had been an MD (deceased five years at this point). I also had another daughter who had insisted on getting AOL for whatever reason. I decided to click on the better health folder one time and actually found messages about hypothyroidism. Cool! I could ask people things. Someone might help me! I quickly found out that the doctor had been far from thorough in his testing (only tested the TSH). I had actually asked the doctor if the TSH was a good test, and if a normal number precluded hypothyroidism. He said "Well, look at the name-- it is called ultra-sensitive, isn't it?"

About this time, Emily started calling me from college with her symptoms. "I want to sleep all the time." "I hate living in the sorority house." Atypically, she let a few girls bother her. She began actually having lunch in her room to avoid them. This was very strange behavior on her part. "I couldn't go to class today, I slept through it." "I go to sleep, but when I wake up I am still tired." Finally, crying, "I want to drop out." I said fine, if she needed to drop out, that was fine with me, that the problems that she was having had an answer, and that we would find the answer. When she began eating a hypoglycemic type diet (close to the Zone Diet, but she couldn't make it that stringent) she started doing somewhat better, forgot her idea of dropping out, and began attending class again.

In the meantime, someone posted in the AOL folder that I was reading, something about Wilson's Syndrome, a T4 to T3 thyroid hormone conversion problem that is rarely diagnosed or treated, but actually common, according to Dr. E.D. Wilson, MD. I ordered the book and recognized my daughter in the pages. One full page was about onset with tonsillectomy, although any stress, physical or mental, could trigger the disorder. Emily also has strawberry blond hair and had much Irish heritage, which fit a typical profile (although these are not necessary at all). She had average temperatures lower than 98 degrees. She made an appointment with an endocrinologist in her college town. I wrote a four page introductory letter on why she had this disorder (which the endocrinologist had never heard of). But this was a good, traditional doctor that cared and listened. Although he thought she was "healthy," he talked to her a long time, focusing on her mother (like, is she nuts or something), her stresses at college, etc. It is clear that he was going to refer her to a psychiatrist after her tests came back normal. And he ran a lot of tests! As it turned out, though sufferers of WS often have all normal blood tests, her T3 levels were barely below reference ranges. The endocrinologist prescribed Cytomel, a T3 medication, but refused to follow the WS protocol. By that time, I had found out by e mail that a doctor that I knew and trusted in my original home town was a referral doctor from the Wilson's Syndrome Foundation. We made a Christmas trip to visit my family, and she was eventually put on the protocol. She has not yet been able to cycle off the medication as Dr. Wilson says is possible, but she has been off and on the medication (sustained release T3 medication made by a compounding pharmacist). It is obvious that this is the treatment that she needs. She has much more energy, needs less sleep, has lost weight (she had been getting "apple" shaped), and her colds don't turn into sinus infections! (unless she is on the down part of the cycle). The "story" isn't over yet, because she has not been able to cycle down completely.

I have learned some things about Wilson's Syndrome from the Internet. Here are a few of the things I have learned-- 1. It is a controversial diagnosis and a controversial treatment. Most traditional MDS are unwilling to consider it. 2. Dr. Wilson may have caused some problems by renaming "sick euthyroid syndrome" "Wilson's Syndrome." This gives the appearance of being somewhat self serving. The disorder is well known by endocrinologists, but not thought to exist outside of severe illness. 3. Dr. Wilson had his license suspended one time in Florida for practicing the protocol. 4. The prevalence of psychiatric type symptoms in this disorder is really eye opening. I even heard of one child with obsessive suicidal thoughts having this disorder. 5. Cytomel is now in generic form, is very inexpensive, and therefore subject to none of the marketing promotions typical of psychiatric drugs such as Prozac. 6. Those with all normal blood tests may have peripheral thyroid hormone resistance, rather than a T4 to T3 conversion problem. 7. All kinds of disorders in children may be related to hypothyroidism, including ADD.

I can still recognize hypothyroidism in people. I can name three children and young adults that probably have this disorder. One is 15 years old, short, overweight, and has not yet started having periods. Since there is no doctor in my home town that treats it, I have not tried to "diagnose" or tell them of my suspicions. My disgust at this situation has led me to be a frequent poster to thyroid newsgroups. I am still rather computer illiterate, but I have composed an "Alternative Hypothyroid FAQ" for people willing to make the leap beyond traditional medical advice. I would hate to think where my daughter would be had I not had my own prior experience with hypothyroidism, and I would like as many people as possible to know about this disorder.

~~DISCLAIMER~~
This website has been designed to help empower individuals with thyroid disorders. This page contains one persons personal experiences, do not try to diagnose and/or medically treat yourself or family member by reading the contents of this page without consulting your physician and/or endocrinologist. No one individual or company connected with this website assumes any liability or responsibility for its contents.

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