Wilson's Thyroid Syndrome

Discussion in 'Fibromyalgia Main Forum' started by Elvira, Nov 3, 2002.

  1. Elvira

    Elvira New Member

    I have found a site that deals with this syndrome which is characterized by constant low body temperature. It is treated with T-3 compounded thyroid medication which will supposedly reduce or alleviate the fibromyalgia symptoms. Has anyone been treated for this yet? If so, please tell about your experience. I've checked my body temp for the past week and it has been consistently low, so this is something I'm considering, however, my doctor is not familiar with it.
  2. Elvira

    Elvira New Member

    I have found a site that deals with this syndrome which is characterized by constant low body temperature. It is treated with T-3 compounded thyroid medication which will supposedly reduce or alleviate the fibromyalgia symptoms. Has anyone been treated for this yet? If so, please tell about your experience. I've checked my body temp for the past week and it has been consistently low, so this is something I'm considering, however, my doctor is not familiar with it.
  3. AnnetteP

    AnnetteP New Member

    I've tried T3 and LOVED the energy it gave me. However, my blood test revealed that even at the lowest dose, and taken only once a day, my T3 was too high. I take Armour which contains T1, T2, T3, and T4, and just increased it to 1 grain, 2 times a day, so I get more T3 that way. Besides, my T4 is still a little low, so the increase may be the right combination for me.

    I never check my temperature, but even on T3 my feet stay cold. Since dropping it, and increasing Armour, my energy is again over-the-top. I forget I have CFS sometimes lol. Of course, if I overdo it, I soon remember.

    Hope this helps,
    Annette
  4. ssMarilyn

    ssMarilyn New Member

    A good doctor, preferably an endoctrinologist, will treat you by how you FEEL and not what the test results show. Thyroid tests are notoriously inaccurate. If you feel good, then don't mess with the meds, keep them the same as they are!

    Marilyn :)
  5. ssMarilyn

    ssMarilyn New Member

    I was diagnosed with hypothyroidism in the early 90's and have studied up on this extensively on the net. I currently feel great, due to getting a new doc, (an endoc), but my body temp is always low, usually around 97.2. I don't feel cold or bad, so guess if it ain't broke, I won't fix it!

    Marilyn :)
  6. ssMarilyn

    ssMarilyn New Member

    I've never head of this while researching the thyroid online. The doctor who "invented" this disorder no longer practices medicine, in fact, here's a little info on him:

    In 1992, the Florida Board of Medicine fined Wilson $10,000, suspended his license for six months, and ordered him to
    undergo psychological testing. He is not practicing at this time.

    Marilyn :)
  7. AnnetteP

    AnnetteP New Member

    Like most other dr.s I gave up on Endos a long time ago. I'm not sure there IS such a thing as GOOD endo! lol I will stick with my functional medicine dr. She has this thryoid thing down pat and I have had more thyroid tests run by her, than with any other dr., endos included. In fact, after I found her I noticed she was listed on the good dr. section of Mary Shomon's thyroid site.

    I also wanted to add that when I first started on 2 grains of Armour (which is what I'm back on now) I felt great. But, I was showing elevations in areas my dr. didn't want me to go that high in. We dropped it to 1.5 grains and I still felt great. But, the next visit she wanted to add T3 since it was a little low, so she dropped me to 1 grain along with T3 twice a day. It was disastrous! She saw my tests and said no wonder you are exhausted, its far too low. So, she upped me to 1.5 grains again, and lowered my T3 to just once a day. Again, I felt great. The results that followed showed my T3 was just slightly elevated (not enough to really concern her at the present), but since my T4 was also low, she figured adding another 1/2 grain of Armour, making it 2 grains again, would give me the needed T4 and T3. This time, though, I'm taking 1 grain of Armour, twice a day, so that I can have a more constant source of T3 since it lasts only about 3 hours.

    We have been playing with my dosage for a year now, and while I feel greatly improved, I tend to fluctuate a lot, so it may take awhile to normalize.

    Annette
    [This Message was Edited on 11/04/2002]
  8. denigrif

    denigrif New Member

    I had alot of problems with my thyroid bulging out and intense Fibro pain. The endocrinoligist did not help other than tell me I was low in estrogen and I needed to gain weight to speeed up my metabolism. She had a point, but really wasn't much help. So my primary doctor put me on Liothyronine (T3) time release and it worked instantly. I could finally relax and my neck went down. My nodule dissappeared later on too. Then, it started working against me 2 years or so later. I felt alot of anxiety again and my thyroid felt blocked again. So,, another primary put me on Cytomel (2x/day) (T3) and it worked because I took a break from it a while...and I also took Celexa with it. I never had a T4 problem itself, but my tests were normal once I took the T3.
    Denise,RI