Wilson's Temperature Syndrome?

Discussion in 'Fibromyalgia Main Forum' started by ritatheresa, Jan 30, 2006.

  1. ritatheresa

    ritatheresa New Member

    Has anybody heard anything about this? I've been seeing it alot.

    I always have a low body temp (usually 97.2).

    Supposedly there's a protocol for it.

    Has any body ever been treated for it. Is it just one of those "miracle cure" things?

    Anybody?

    Good night, Ritatheresa
  2. victoria

    victoria New Member

    my body temps are normally even lower... usually 96.5 or so

    I took the T3(?) - having a bad night, can't remember exactly what it was - but different than just taking synthroid or Armour thyroid, which I'd already been taking for 13 years at that point..

    I felt a lot better while doing it for a year; unfortunately then my doctor wanted me to try cycling off of it - right at a time when i was going thru an extremely emotionally and physically stressful time - was NOT good, I didn't do well, and even tho i cycled back up to my original levels and then some, I never felt the same.

    It was shortly after this that I started to slowly slide into full-blown CFIDS because of the unrelenting stress, even tho I went back on Armour Thyroid. I don't think it had anything to do with Wilson's Protocol however - I just think it was a really bad time to have tried to take me down on it!

    It was quite expensive, though, that was a downside; otherwise I think it is worth a try!

    all the best,
    Victoria

    PS he did write a book about it "Wilsons Syndrome" or something similar - it is a worthwhile read, your library may even have it. Also, have you googled the protocol?

    [This Message was Edited on 01/30/2006]
  3. CanBrit

    CanBrit Member

    Several years ago I was sure that what I was suffering from was Wilson's syndrome. I had most of the symptoms including the low body temp (between 95.8 and 96.2), low blood pressure issues (90/55)and slow heart beat (55).

    A year and a half ago, after being tested for everything under the sun due to FM, he discovered my TSH/T4 values where right out of whack.

    I'm on 75 mcg's of levothyroxine and my temperature has now come up to 97.7, my BP is 110/70 and heart beat at 65. I do believe that years ago, my levels were only a little off, but I've heard that even just slight variances in these hormone's can cause extreme side effects.

    It's take more than a year to stabilize and I still have FM but at least some of the thryoid issues have resolved themselves.

    Keep at your Dr to check you regularly.

    Regards,

    Eileen
  4. ritatheresa

    ritatheresa New Member

    Thanks for your replies.

    I'm going to see an endocrinologist Thurs.

    I would be shocked if my hormones aren't out of whack.

    My brain has literally turned to mush, I have the darkest black circles under my eyes.

    Sometimes I feel as if the meds I'm on are making me worse (particularly the Provigil).

    I also have a drug abuse history (clean and sober 8 years now thank god), so I'm very reluctant to try narcotics, however I was put on Ativan for muscle spasms and anxiety and it helped tremendously. So if I'm honest and taking the meds as directed I shouldn't be so scared.

    I recently posted about my lack of REM stage 4 and stage 3 sleep, they don't even know how to treat it yet. Could it be hormonal? My gut tells me yes.

    Thank God for this site, you guys are the ONLY people that understand. Ritatheresa
  5. pastorwife

    pastorwife Member

    I first discovered my low body temp about 15 years ago. Every time I got sick (sinus infection, flu, etc) my temp wouldn't "register" on the nurse's thermometer. Doc said that is just what happens when I get sick. Now my temp is usually 97.5 when I'm feeling my best and drops as I get sick. If I have a temp of 99 -- that's a fever for me.

    I was also put on thyroid meds but all the various oral ones did not agree with me. I am now on a cream that is compounded for me. I just dab it on (measured out from a syringe -- no needle) under my jaw and go on my way. It has done the best for me. Everytime blood work is done on my thyroid (when I'm off the med) it comes back normal, but the symptoms are there. So, my doc is treating symptoms not lab results and it seems to work.

    I am waiting on saliva test results on hormones (estrogen, progesterin and testosterone -- forgive mispelling) as I am constantly gaining weight (slow but steady) no matter what I do with diet and exercise. Hot flashes are gone since doing the thyroid cream. I'm thinking that maybe if there's something going wacky with hormones it may be affecting my body temp too.

    I don't mind the low body temp as it doesn't seem to cause me any problems. Actually, I usually am very hot which surprises me. If I tried to make a snow angel, I'd melt through to the ground!
  6. neen85

    neen85 New Member

    It has alot of info about the adrenals and thyroid and a chart to tell if your problems are mostly adrenals,mostly thyroid or "mixed". I think the "Wilson's thing is a load of crap! I was diagnosed with it in 2001 and was bedridden at that time.

    I had all of the symptoms. These guys were a major diagnostic "Center" in Kansas and totally missed the boat. Several years later I was diagnosed with lyme....which I have had for nearly 17 yrs now. Daneen

    If I am not mistaken adrenal problems can cause ow body temps. also and should be treated before the thyroid......but as in my case,very few doctors will note that there is a problem....just this last year I began getting alot of brown spots all over my body and that is what the lyme doctor said the problem was. My tests are pending....D