The List of Symptoms
Are you suprised to see many or all of the symptoms you struggle with day after day on this list?
If so, you're not alone:
Energy
Cognitive/brain
Hear, mails, eyes & skin
Mood
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Body Temperature
Periods (women)
Digestive Tract
Blood
Frequent Infections
Muscles and Joints
Other
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Some sufferers have a “Wow” reaction the first time they see the list. Some experience tears of relief. Others feel both hopeful and cautious at the same time. Often upon seeing the list for the first time visitors to this website think “I certainly have some of these, but not all. Can I still have Wilson’s Syndrome?”Yes. Thankfully no one with Wilson’s Syndrome suffers all of the symptoms on the list. A typical Wilson’s Syndrome sufferer has between 5 and 15 symptoms varying in degree from minor difficulty to very significant difficulty. What makes symptoms of Wilson’s Syndrome different from the symptoms experienced by people with numerous health problems?First, one of your symptoms will be a chronically low body temperature. You have to test your temperature to know whether this is true for you. Some people know. Others are surprised by the results of the test. Second, there is a pattern to the symptoms. Most people affected by this condition (though not all of them) will be very aware that most of their symptoms began at pretty much the same time - coincident with a major life stressor like the birth a child, a death in the family, a divorce, etc. A smaller number of sufferers will not be able to remember when their symptoms started, it was so long ago. The speculation is that they too may have been caused by a trauma, but one that happened so long ago it is forgotten. Some symptoms do come on very slowly, but this seems to be less common. Another characteristic of the pattern of symptoms for Wilson’s Syndrome is that not only do they usually ”come on” together, but also they persist together (they don’t come and go independently). If they get worse, they usually get worse together. And finally, although new symptoms may join the group, almost never do any disappear. They are connected by the same cause, and they act that way. Did the core of your symptoms arise at a time you can identify? Or have they been around for a long time? Have they been increasing in number and severity? How can so many widely differing symptoms be connected?The thyroid hormone T3 works inside of every cell in every organ and organ system of your body, from your brain to your cardiovascular system, from your skin to your organs of reproduction. When T3 is not working effectively it can show up many, many places. There is only one symptom that is common to every sufferer, chronic low body temperature. The constellation of symptoms may have similarities and differences from one individual to another. For doctors familiar with hypothyroidism the variety of diverse symptoms is not surprising. Where they get stumped is when they do their trusted hypothyroid blood test (TSH) and it comes back normal, which in the current textbooks on hypothyroidism means you don’t have hypothyroidism even though your symptoms may scream ”hypothyroidism.” (See Why Your Thyroid Blood Tests Don’t Show Wilson’s Syndrome.) How do doctors respond when confronted with a patient with many of these symptoms but normal thyroid tests?What has your experience been? Have they tried to treat a few of the most problematic ones independently, like giving you sleeping medicine for insomnia and progesterone for difficult menstrual cycles? Have you been told everyone has bodily complaints (as they get older), so you just need to manage the best you can? Have they suggested that the source is might be emotional, maybe a result of stress or depression? For the most part doctors are stumped, and yet few will honestly say that. They’ll try to respond to you in some way even if it is to discount what you tell them. It started with the birth of my last child. I started having difficulty with sleep and I was tired a lot. I noticed anxiety that was never a part of my life. I just figured it was the stress. It made sense -- another child and working full time. I never lost the weight I had gained with that pregnancy. But that happens to lots of women, right? As the years wore on, my husband and kids complained I was more irritable. I joined Weight Watchers but every pound I took off seemed to jump back on when my vigilance lapsed at all. After 10 years my husband was more concerned about the fatigue and the irritability. He thought it might all stem from the insomnia. Sounded reasonable. My doctor prescribed a sleeping medication and it helped in lots of ways, although I sure wasn’t back to normal. Then I developed a strange dizziness but my doctor simply said, “it happens to some people, and unfortunately there is no treatment.” Some years after the blessing of the sleeping medication, I began to have difficulty with my concentration. Was it age? Or had I just burned myself out with a career and a family? That’s where I was at when I talked to my sister. Someone had just mentioned Wilson’s Syndrome to her. She said she had about 18 symptoms on a symptom chart. I wasn’t really that interested until she mentioned that she had taken some herbs and a lot of her issues got much better or went away entirely. She told me to check my temperature. I was really surprised when I did. It averaged 97.5 during the day. My husband made the last connection. For about the last seven or eight years at least a couple times a week during the winter I would have to take a bath before bed to warm up. It didn’t make any difference how many blankets I put on or how much I got cuddled. I had to take that bath. I was dubious about the Wilson’s stuff. My doctor, even though he had never heard about it either, was, frankly, somewhat negative. On the Web I found that the American Thyroid Association basically thought it was bunk. But my husband pushed anyway. When I found a doctor that knew about Wilson’s Syndrome, things changed. So many problems I’ve had got better so quickly it was startling. I have got to say, not everything got better. I’ve always had migraines and I still get migraines. But the rest… almost all of it got better. I no longer take sleeping medication. The anxiety is less and so is the irritability. My sense of humor is back. I am much less fatigued. The baths several times a week during the winter are no longer necessary. The dizziness disappeared, thank God. I have joined Weight Watchers again (for the third time since it all started). I am finally successful in taking most of “that weight” off. It didn’t just melt off; I had to work at it. But when I backslid it didn’t pile back on like it used to. All in all I am not fourteen years younger, but I feel better than I have felt in fourteen years. < Home Page |
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