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Thread: Wilson's Temperature Syndrome - Anyone familiar, been treated? page

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    lemontwisst's Avatar
    lemontwisst is online now Senior Member
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    Wilson's Temperature Syndrome - Anyone familiar, been treated?

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    I did a quick forum search but didn't find anything more than a few casual mentions...

    I came across this website yesterday after yet another completely disappointing doctor's visit where the latest round of bloodwork I've gone for showed nothing, on paper anyway, is wrong with my thyroid. And yet all the symptoms I've been exhibiting the last while (up to a year for some) - low body temp, fatigue, brain fog, irritability, increased anxiety, weight gain, poor sleep, cold hands and feet, dry skin, hair loss, etc, etc - are continuing to get worse. I'm stumped how all what was tested (T3, T4, frees and TSH) all came back right in the middle of the 'normal' ranges. I also had rT3 tested but didn't see the result for it, and I will mention that my TSH was up to 3.33 from 1.95 in December, though because it's still well within 'normal' range, my doctor feels it's not indicative of anything.

    Long story trying to be short - the Wilson's Syndrome thing feels right to me, but some Googling found some not-so-positive info via Wikipedia and the Mayo Clinic basically calls it a farce. I'm curious to know if anyone here has some first-hand experience with having been diagnosed, treated, etc, for Wilson's Temperature Syndrome. I'd love to hear it - I'm well at the end of my rope feeling this shitty all the time, and this is likely the next step in my journey to find out what the root cause of it all is.

    Thanks!

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    YogaBare's Avatar
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    Hey Lemon, I just saw this thread.

    I've been looking into this A LOT for the last month! I came to it off the back of the "Eating a ton" experiment. Interesting that you've also found it that way!

    I believe it's a legitimate illness. I contacted the guru of low body temp (Steve Richfield) and was consulting with him for a while whilst trying to raise my temp. I wrote about it in my journal, from this page: http://www.marksdailyapple.com/forum...d80832-21.html

    There's loads of info there, if you're interested. If you have any questions let me know!

    Also, I spoke to a doctor who specifically deals with Wilson's sydrome. She said that before diagnosis is possible one should get adrenal saliva tests and thyroid blood tests ( T4, T3 and TSH) done, as well as having an average temperature, which can be taken in this manner:

    Take your temperature on 3 consecutive days, using a non-digital, under the tongue thermometer. Take it 3 times a day, starting with 3 hours after waking, and at 3 hourly intervals. Take the average for each day by adding them together and dividing by 3.
    "I think the basic anti-aging diet is also the best diet for prevention and treatment of diabetes, scleroderma, and the various "connective tissue diseases." This would emphasize high protein, low unsaturated fats, low iron, and high antioxidant consumption, with a moderate or low starch consumption.

    In practice, this means that a major part of the diet should be milk, cheese, eggs, shellfish, fruits and coconut oil, with vitamin E and salt as the safest supplements."

    - Ray Peat

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    Thanks for the reply, YB...your thread was where I saw the few casual mentions of WTS. I'll go back and read through from where I left off

    I have the thyroid blood test results back from when I had lab work done two weeks ago as I mentioned above. The only one I didn't get back yet was the reverse T3 result. I expect to hear from one of my GP's nurses early this week re: an endo referral, and I will ask her then for the specific figures for everything tested as I didn't write them down at my appt. As for the cortisol saliva test, I haven't been able to convince either doctor to give me a requisition for it, so I may have to bite the bullet and order a kit from a lab in the States and do it myself.

    I have read through he WTS website and planned to start tracking my temps as you described once my TOM starts in four or five more days and then book an appt with a naturopath near me that is practised in treating WTS.

    I just read so much about it that really dismisses it as a bunch of bullshine and I'm as skeptical as anyone about this kind of thing, but the two doctors I've been seeing about all this for months have both basically told me they're stumped and out of suggestions which is really unacceptable to me.

    Thank you for the details...it might be a bark up the wrong tree, but at least it's a try at something.

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    YogaBare's Avatar
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    No probs LT

    I read the wiki article and I thought it was pretty harsh and biased... WS just describes a range of symptoms that hamper people from living their lives, but when they do to doctors they're told it's all in their head.

    There's a possibility that Wilson's is a specific hormonal imbalance that falls outside the boundaries of conditions like hypothyroidism etc. There's no harm in just tracking your temps for a few days.

    That seems like quite a jump in your TSH as well...
    "I think the basic anti-aging diet is also the best diet for prevention and treatment of diabetes, scleroderma, and the various "connective tissue diseases." This would emphasize high protein, low unsaturated fats, low iron, and high antioxidant consumption, with a moderate or low starch consumption.

    In practice, this means that a major part of the diet should be milk, cheese, eggs, shellfish, fruits and coconut oil, with vitamin E and salt as the safest supplements."

    - Ray Peat

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    TSH can fluctuate 3 points in any given day. There are many things that can mimic thyroid symptoms:
    1. Anemia-- including low ferritin
    2. Low vitamin D
    3. Insufficient selenium-- 200mcg/day
    4. Not eating enough calories and/or carbs
    5. Overtraining

    It would be helpful to see your actual freeT4 and freeT3 results.

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    A TSH of 3.33 is not normal. For me personally I was symptomatic of hypothyroid at 2.6. I had a smart endo who decided that since I was symptomatic, but officially not over their cutoff of a 3.0 on the TSH that she would treat me for hypothyroid. I was put on synthroid and the difference was night and day. It had been so long since I had felt good, I had forgotten what it felt like. I had been having my TSH monitered during my pregnancy because I am a diabetic so they actually had several readings and a normal baseline for me. The new reading was significantly different. I've been on medication for three years now and had my dose increased twice. Now that I know what to look for I can ask for a TSH when I start feeling cruddy. I haven't been wrong yet. The old cutoff for abnormal TSH was 5 but several years ago it was revised to 3.

    I feel best when my TSH is 1.2 to 1.5.

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    Lets get one thing straight. You need a new doctor. To have a Tsh level of over 3 means you have some sort of thyroid problem but your doctor has no idea. .. No wonder you feel like crap.

    I agree with the poster above you need full cortisol saliva panel as doctors shouldn't look at thyroid as an isolated thing. My Tsh was highish ( over 2) but was treated for adrenal fatigue first. My cortisol levels were almost non existent. I am on Wilson's adrenal fatigue program and feel so much better.

    Your adrenals work with your thyroid and shouldn't be looked at in isolation. those on synthroid may be missing a vital part of the picture. It is possible to improve your thyroid function through supplementation and nutition and not have to be on prescription medication for the rest of your life.

    We have to ask why a our bodies aren't working optimally and give it what it needs.

    I think you are on the right track with the naturopath who is knowledgeable re this. The first naturopath I went to missed the adrenal part of the equation but I then went to an integrative doctor who ordered the saliva tests and I was then on my way to feeling normal again.

    Hope this helps

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    lemontwisst's Avatar
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    Thank you all so much for the input! I knew it wasn't right that my GP dismissed the increased TSH level as insignificant. I had read the 'normal' range had been changed to 0.3-3.0, but even on the documentation from the labs, the range was up to 5.0. As I mentioned, I will talk to her nurse this week and get all the recent lab numbers so I have something to take to the naturopath.

    Thanks again - will update soon!

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    Lemontwist, You could also check out the Blood Type diet (dadamo.com). Depending on your blood type, you can use the Primal diet in conjunction with the Blood Type diet, which is what i basically do. It has really helped to alleviate a lot of my symptoms that i think are caused by this low temperature syndrome. good luck on your journey.

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    This thread piques my interest. I have been eating paleo for over a year and have had many odd and sometimes vague symptoms that point towards hypothyroidism. For example, my fingers will go numb and turn bluish white in even moderate cold... something I have never experienced previously. Also I have a vague discomfort in the front of my neck for months. Could this be my thyroid "hurting"? Can that happen? I had a CT scan of that area - nada (thank goodness).

    I did have basic bloodwork done a month or so ago - TSH 3.67, Thyroxine 4.2. That's all the thyroid related info.

    I will go back to the other thread on this, and thanks a lot.
    Last edited by Butch C; 05-10-2013 at 03:02 PM. Reason: Left info out

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