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Thyroid Disorders board


Hi everyone! I am new to this board and this subject. Today my doctor diagnosed me with Wilson's Syndrome. Have any of you heard of it? It is when all your symptoms look like hypothyroidism but your blood tests are normal. For the last month I have been taking my temperature and everyday it has been below 97.8. Sometimes as low as 96.4. The MD says that this is one of the main determining factors of Wilson's Syndrome. The other symptoms I have are depression (been on Prozac since May 2003 with no benefits), irritability, severe fatigue, dry skin, low sex drive, constipation, hair loss, and headaches. I also have been trying to get pregnant since October with no success, which my doctor says can be related to my thyroid. He has started me on a starter pack for replacing the T3 level. Has anyone ever been on this "therapy"? He says he's had tremendous results with his patients and that he is basically "reprograming the thermostat". Once the thermostat is set then you can wean off the medication. Does all this make sense? I am excited about this because I finally have answers to some of the things I thought were just "me". And hopefully I don't have to live with these symptoms all my life! If anyone knows much about Wilson's I would really like some input. This is all very new to me. Thanks!
Quote from jennfer:
Hi everyone! I am new to this board and this subject. Today my doctor diagnosed me with Wilson's Syndrome. Have any of you heard of it? It is when all your symptoms look like hypothyroidism but your blood tests are normal. For the last month I have been taking my temperature and everyday it has been below 97.8. Sometimes as low as 96.4. The MD says that this is one of the main determining factors of Wilson's Syndrome. The other symptoms I have are depression (been on Prozac since May 2003 with no benefits), irritability, severe fatigue, dry skin, low sex drive, constipation, hair loss, and headaches. I also have been trying to get pregnant since October with no success, which my doctor says can be related to my thyroid. He has started me on a starter pack for replacing the T3 level. Has anyone ever been on this "therapy"? He says he's had tremendous results with his patients and that he is basically "reprograming the thermostat". Once the thermostat is set then you can wean off the medication. Does all this make sense? I am excited about this because I finally have answers to some of the things I thought were just "me". And hopefully I don't have to live with these symptoms all my life! If anyone knows much about Wilson's I would really like some input. This is all very new to me. Thanks!

[FONT=Comic Sans MS]I've had this therapy and didn't have the lab work done before and so it was wasted on me. Please get your Free T3 and Free T4 done beforehand. If it's not in the upper normal ranges you're probably hypo rather than Wilson's. You may feel better for a short time, but all the symptoms will come back within months, if not within a year. Sorry to be so depressing, but you sound hypo, not Wilson's. Please give the lab work a chance.
Good luck![/FONT]
Quote from jennfer:
Hi everyone! I am new to this board and this subject. Today my doctor diagnosed me with Wilson's Syndrome. Have any of you heard of it? It is when all your symptoms look like hypothyroidism but your blood tests are normal. For the last month I have been taking my temperature and everyday it has been below 97.8. Sometimes as low as 96.4. The MD says that this is one of the main determining factors of Wilson's Syndrome. The other symptoms I have are depression (been on Prozac since May 2003 with no benefits), irritability, severe fatigue, dry skin, low sex drive, constipation, hair loss, and headaches. I also have been trying to get pregnant since October with no success, which my doctor says can be related to my thyroid. He has started me on a starter pack for replacing the T3 level. Has anyone ever been on this "therapy"? He says he's had tremendous results with his patients and that he is basically "reprograming the thermostat". Once the thermostat is set then you can wean off the medication. Does all this make sense? I am excited about this because I finally have answers to some of the things I thought were just "me". And hopefully I don't have to live with these symptoms all my life! If anyone knows much about Wilson's I would really like some input. This is all very new to me. Thanks!



in my view, it does not ... i think wilson's syndrome is another name for "slightly hypo" ... i'd appreciate knowing your actual TSH, fT4, and fT3 values, since all your symptoms are consistent with plain old hypo ... posting them would be very helpful ....

cytomel is certainly a treatment for hypo, but you may need some synthroid/thyroxine (T4) .. you can reduce or eliminate the symptoms with the right meds, but ... "reprogramming the thermostat"?? hmmmm ...

jb
Quote from jennfer:
Hi everyone! I am new to this board and this subject. Today my doctor diagnosed me with Wilson's Syndrome. Have any of you heard of it? It is when all your symptoms look like hypothyroidism but your blood tests are normal. For the last month I have been taking my temperature and everyday it has been below 97.8. Sometimes as low as 96.4. The MD says that this is one of the main determining factors of Wilson's Syndrome. The other symptoms I have are depression (been on Prozac since May 2003 with no benefits), irritability, severe fatigue, dry skin, low sex drive, constipation, hair loss, and headaches. I also have been trying to get pregnant since October with no success, which my doctor says can be related to my thyroid. He has started me on a starter pack for replacing the T3 level. Has anyone ever been on this "therapy"? He says he's had tremendous results with his patients and that he is basically "reprograming the thermostat". Once the thermostat is set then you can wean off the medication. Does all this make sense? I am excited about this because I finally have answers to some of the things I thought were just "me". And hopefully I don't have to live with these symptoms all my life! If anyone knows much about Wilson's I would really like some input. This is all very new to me. Thanks!

Welllllll, this is a good one... I also had all of the symptoms you describe, yet had all perfect labs, from free t3 free t4,antibodies, etc. You are very fortunate to have a doc who is willing to treat you.. I had the run around for awhile. The actual diagnoses for what I have is "cellular resistance to thyroid hormone".... this is when your gland functions normally but you are resistant at the cellular level... this cannot be detected on a thyroid function test... ever.

I have not done the Wilson's approach..... I am more aligned with Dr. Lowe's treatment theory.

But... good for you , very happy that you have an open minded doctor. :bouncing: