Wilson Syndrome

Discussion in 'Fibromyalgia Main Forum' started by mrpain, Apr 14, 2006.

  1. mrpain

    mrpain New Member

    Has anybody ever heard of Wilson Syndrome, also known as Wilson Temperature Syndrome? Have you seen a specialist for it and did you try the therapy that goes with it? Were you hypo or hyperthyroidism?

    Please give me any info you can before I go spend a lot of money to get involved.. The web site sure sounds like our situation so that's why I'm interested. It has something to do with our t3 & t4 and having a low body temperature which can be as serious as having a high body temperature.

    Mine is always around 96.4 degrees instead of 98.6... It will vary but it's always low..
  2. claudiaw

    claudiaw New Member

    Yes, I have heard of it, think I may have it.

    I checked prices on thier website, too expensive for me.:)

    Right now I am using a product by Enzymatic Therapy for the thyroid, it is marked under weight loss and energy. It seem's to help me.

    Have you ever went to an endrocronologist? You can research one that follow's the Wilson protocol. You may need Armour thyroid.

    I just tried the least expensive I could find first, seem's to help enough for now.

    Best wishes,

    Claudia
  3. daylight

    daylight New Member

    I have hypothyriodism and my temp. is anywhere from 95 degrees to 97 degrees most of the time. Although my body seems to feel like I'm either freezing my bum off or overheating.

    What is Wilson Syndrome?
  4. braintrust

    braintrust New Member

    Can you still take tylenol pm with a messed up liver? Will the acetmenophen mess it up more. Forgot to ask my Dr. this question, also Lipitor.

    If the nurse sees this, please reply.
  5. claudiaw

    claudiaw New Member

    It is the name ( Wilson) of the man who thinks many chronic condition's such as FM/CFS are caused by a low thyroid, characterised by a low temp even though test's come back "normal".

    You can go to his site for more info.

    Best wishes,

    Claudia
  6. claudiaw

    claudiaw New Member

    I will answer on the post to me so we don't get our thread's mixed up.:)

    Most people here will be looking for Wilson Syndrome and thyroid function.:)

    See me at your post for me:)

    Claudia
  7. JenniferAnn539

    JenniferAnn539 New Member

    I have low temps and my doctor suspected I had Wilson's and put me on the protocol, years ago. I recently posted about this, I have cut and pasted my prior reply...

    Wilson Syndrome 04/07/06 09:54 PM

    As I recall, the treatment involves getting a compounded thyroid supplement from a pharmacy, I obtained mine from Hopewell Pharmacy, a compounding pharmacy in Hopewell NJ that ships rx's. (hopewellrx.com).

    They will provide graduated doses of the thyroid supplement. You start with the lowest dose, which I think you need to take every 12 hours (or 24 hours), precisely. At the same time you take your temp at a specific time(s). You keep increasing the potency of the dose until you reach the one that has your temp. in the normal range.

    As I mentioned I did not experience any improvement on this protocol, (I just felt sped up and sick ) but it may be helpful to some individuals.

    Best of luck.

    Jennifer

  8. mrpain

    mrpain New Member

    Thanks for the quick replies! I've been watching a television program called "Your Health" with Dr. Becker and his wife Cindy. They had Dr. Wilson on the program explaining Wilson Syndrome. Time was short and a lot was said, and it was hard to wrap my brain around everything.


    So that's why I wanted to ask for ya'lls advice which I truly appreciate. There's only one doctor that's in my area that is listed on his web site that has trained in Wilson Syndrome....and he's an accupuncture doctor. I'm just not sure what to do at this moment..

    Thanks for any other advice that may come to mind..

  9. claudiaw

    claudiaw New Member

    Love that show!:)

    That is where I learned about Wilson's Syndrome too.:)

    Best wishes,

    Claudia
  10. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I think perhaps hypothyroidism is overdx'd and hypoadrenalism is underdx'd. The Adrenal Rebuilder glandular has a combo of 5 glands w/ thyroid being one.

    I've taken other combo adrenal glands and they worked well too. I wasn't depressed and freezing this winter, yeah.


    Jeanne
  11. Shannonsparkles

    Shannonsparkles New Member

    Suggested (sounded pretty sure actually) that I have Wilson's syndrome. Leave it to me to get a disease that is not recognised by the medical community at large and seems tricky to treat.

    I don't know if that makes sense for me. I've taken my temperature a couple of times since then, and it was 98.6 and then 99.0. But then it goes into the 97's later in the day.

    Has anyone here been treated for Wilson's? Can you tell us more about it and about the treatment? I've just about lost the ability to stand and to speak, so I'm very concerned for myself.
    (( )) Shannon
    [This Message was Edited on 05/05/2006]
  12. mrpain

    mrpain New Member

    This was a post from a few months ago. What is your opinion on Wilson's Syndrome and how much do you think it may play in our illness. Is this something completely separate, or could it be some of our problem? Could it be most of our problem? Curious minds want to know. So does curious body.
  13. roadkill

    roadkill New Member

    My doctor let me try the protocol and it didn't help me. I just felt zinged out.
    I was impressed by the concept because it described me to a
    T but in the end it didn't help.
    I found that managing reactive hypoglycemia was a better way to go.
  14. tlayne

    tlayne Member

    They have a book out....I believe it is called "Wilson Syndrome". I read it a few years back. It made a lot of sence to me, but you had to find a MD that would do the right testing and try the right meds. That right there is a major undertaking (as we all know the MDs will not listen). My body temp is also low and always has been. I know of no other way to follow their protocol, if there is another way I would also be willing to give it a try. Hugs, Tam
  15. victoria

    victoria New Member

    I also fit the profile with low body temp, etc. It really helped me a lot at the time, albeit expensive (at least then).

    Unfortunately, one of the things (at least then) a pt is supposed to do is cycle down after a while to see if one could take a lower dose or none at all.

    My doctor insisted I cycle down at a time where I was going thru the worse stress of my life... so it didn't work to cycle down, and when I went back up, plus then even took more, I didn't get the same results.

    I ultimately went back on armour thyroid, increased to 3 grains, but never did feel the same.

    However, I am doing the experimental Marshall Protocol, and found as I progressed I got hyperthyroid symptoms (pounding heart/ out of breath after climbing stairs), so I lowered my thyroid dosage each time the sumptoms occurred. The symptoms disappeared every time... this occurred 2 or 3X until now I'm not taking any. All pain in hips also went away.

    And, on a side note, before doing the MP, I was taking ginger capsules... it really helped to bring up my body temps, actually felt warm during winter., plus felt better overall energy-wise. I couldn't continue tho cause it was bothering my reoccuring duodenal ulcer.

    If I were you, I'd give it a try, it could be of help - hope you can find a good doctor to work with!

    all the best,
    Victoria