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  • Anyone familiar with Wilson's Syndrome

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    Old 09-30-2007, 06:14 PM   #1
    chestersmom
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    Anyone familiar with Wilson's Syndrome

    I was just wondering if anyone has ever been diagnosed with this or has any information on it. It deals with the fact that some people aren't converting the t4 to t3 as they should and recommends the addition of t3. A sub normal temperature seems to be the symptom most mentioned along with most of the symptoms of hypo (along with some others). I have never taken anything other than Synthroid (which I think is only t4), but my tsh is 22.32 and my synthroid has been increased from 88 to 125. Did not have t3 or t4 checked but when I go back in another month I'm going to ask for a check on that. Has anyone taken the t3 and what kind of results did you have. I have read on some sites where too much t3 can cause some serious problems and wonder how easy it is to regulate. I feel like such a lame brain as some of you are so knowledgable.

     
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    Old 10-01-2007, 04:19 AM   #2
    ChristineVA
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    Re: Anyone familiar with Wilson's Syndrome

    According to my doctors, Wilson's Syndrome is not a "real" disease.

     
    Old 10-01-2007, 05:50 AM   #3
    Nyxie63
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    Re: Anyone familiar with Wilson's Syndrome

    Hi Christine!

    To chestersmom:
    Wilson's Syndrome isn't recognized by the vast majority of medical professionals and I'm not even sure if its recognized by any conventional medical associations or boards. The alternative medical field has a great deal of info on it and consider it to be valid by the new definition.

    The original definition of Wilson's Syndrome was originally a list of standard hypothyroid symptoms (including the low temp, btw 98.6 is NOT standard), some adrenal fatigue symptoms, a few other things thrown in for flavor, along with FTs that were within normal range. What this didn't explain was that many folks that are in "normal" range are still undermedicated and would feel better being on a higher dosage and in the upper 1/3 of the range. Some people do need to take a T3 med in addition to a T4 or combination T4/T3 med, but its not the first thing to think about. Like anything else in this whole thyroid mess, its a matter of symptoms, trial/error, and testing.

    Dr Wilson himself has gone back and redefined the syndrome as now being the production of large amounts of Reverse T3, which is an inactive form of T3, and now called Wilsons (Reverse-T3 Dominance) Syndrome. This condition, btw, is rare and can be dx'd through a blood test for rT3.

    I suggest talking (asking, demanding, pleading, blackmail, etc) to your dr about getting your FT3 and FT4 tested at your next round. Make sure to emphasize the Free part of the FTs. TotalT tests really aren't good for much. This will give a good overall view of what your thyroid's doing.

    Last edited by Nyxie63; 10-01-2007 at 05:57 AM. Reason: Should really be more caffeinated before typing

     
    Old 10-01-2007, 08:01 AM   #4
    mkgb
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    Re: Anyone familiar with Wilson's Syndrome

    Too much water can be bad for you.. i.e you drown. Too much T4 can be bad for you.. hyperT.. same with too much T3.. however if you do not have enough.. that is also bad. If you can not convert T4 to T3 it is bad as well. You need to have your TSH, FT3, and FT4 checked after two weeks at your 125 dosage.

    What you are aiming for is a TSH around 1.. but T4 and T3 supplements are known TSH suppressors.. T4 is a mild suppressor and T3 is the dominant suppressor. Once taking a supplement of any form the TSH becomes irrelevant in the optimal range and what counts is the T4 and T3 readings. What are you after here? What is healthy? Everyone is different, but you want your T3 and T4 readings to be in the 50-80 % range of normal.. this is the optimal range.. proven in study after study.. once at the optimal region you hit the refinement stage.. where you wiggle about your doses of T3 and T4 supplement until you feel perfect.. no symptoms.

    So do not think all T3 is bad.. it is not.. it is mor active than T4 and you should work it in in smaller dosages.. but as long as you are keeping an eye on you own symptoms and T3 / T4 values it will come out alright.

    Total T3 and T4 measurements have a 20% standard deviation error range.. so they are not as reliable a testing method as FT3/4 which have a <5% STD error range. Thus you will get more accurate monitoring if you use the FT3 and FT4 evaluation test methods.

    Good luck in your medication adventure.

    Sincerely,
    MG
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    Last edited by mkgb; 10-01-2007 at 08:04 AM.

     
    Old 10-01-2007, 03:43 PM   #5
    chestersmom
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    Re: Anyone familiar with Wilson's Syndrome

    Thanks for the input everyone. I was aware Wilson's Syndrome was not acknowledged by most doctors, just was interested. Always looking for the "fix". I am feeling better for the last several days, but may not remain that way. Just when I think everything may be looking up I take a nosedive and it's back to the sofa. I always thought that when they changed your dosage you needed to wait for 6 or 8 weeks before rechecking. I definitely will get my doctor to check my t3 and t4. Don't think she'll give me any problem on this. She is open to suggestions.

     
    Old 10-02-2007, 07:09 AM   #6
    mkgb
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    Re: Anyone familiar with Wilson's Syndrome

    As too time for checking.. in pregnant high risk thyroid dysfunctional women they can check as often as 2 weeks to make sure your dosing is where you need it.. chemically 2 weeks gets the blood concentration leveled.. and you have another 2 week adjustment phase for symptoms.. this of course is an average symptom adjustment phase.. some may adjust quicker.. others slower. Six weeks is a conservative approach to maintainance duration adjustment and in many cases slower can be better.. especially early in the T4/T3 supplementation process.

    Sincerely,
    MG
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    Old 10-03-2007, 06:12 PM   #7
    Starfish564
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    Re: Anyone familiar with Wilson's Syndrome

    chestersmom,

    I was diagnosed with Wilson's Syndrome (after searching high and low for a doc who believed in it, and would treat for it) and have done multiple rounds of the Wilson's Protocol (T3 cycling). Unfortunately, I could never get my temp. to stay up, and symptoms to stay better in spite of religiously following the "rules" for dosage times. At this point my TSH is getting high enough to qualify for regular hypothyroid treatment (or so I'm hoping my doc will say). I see a doc that's 3 hours away so it's very tricky to get anything done. Am trying to get an appointment soon to discuss new options.

    The Wilson's protocol makes sense in theory, but I'd really love to hear from people who have tried it and STAYED well for long periods of time on it. If anyone has any experience please share.

    chestersmom, if you are planning to do the protocol and would like to talk to someone who's been there, I'd be happy to answer any questions if I can I know I would have loved to have had someone to talk to with experience when I was doing this. In my case I knew of no one at the time. Since my doc is in another state, it was pretty much "here's the prescription, good luck". I hope things go better for you.

    Take care,

    Starfish

     
    Old 10-04-2007, 03:33 AM   #8
    Nyxie63
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    Re: Anyone familiar with Wilson's Syndrome

    Starfish, sorry it didn't work for you, after all that searching.

    The problem is that T3 therapy doesn't necessarily solve all the problems that might be going on. The low body temp can be indicative of adrenal fatigue as well, which isn't addressed with Wilson's protocol. If you have adrenal fatigue, it affects how well the body can utilize the T3, even if you're taking large-ish amounts.

    I assume you've been charting your temps? If they're constantly low (below 97.8) but stable, then its most likely a thyroid issue. If they're constantly low, but the average varies by a degree or more from day-to-day, then its most likely a combination of thyroid and adrenal fatigue.

    Your best bet would be first to do a 24-hour cortisol saliva test. I'd also suggest getting a full adrenal blood panel done, including ACTH, serum cortisol, ACTH stim test, aldosterone, sodium, potassium, renin and DHEA. This will give a full overview of what your adrenals are doing.

    Btw, the average temp isn't 98.6. That's kinda been thrown out the window the past few years with recent studies. The average range for a healthy human is now between 97.8-99.1, with the average temp coming out around 98.2.

    Last edited by Nyxie63; 10-04-2007 at 03:39 AM.

     
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