Wilson's Syndrome

Hi ...Has anyone been diagnosed with Wilson's Syndrome here in the UK? Does anyone know of any doctors that use Dr Wilsons T3 protocol? Its just that i seem to fit the criteria too well and as i dont respond well to any thyroid treatment, im having to think again. From reading online im not feeling overly positive. Can ayone help? Thanks in advance...K x

13 Replies

  • Any time I read about the disputed Wilson's Syndrome the symptoms are ordinary hypo symptoms. Wilson's finding is that high rT3 could be the cause and some weeks or months on T3-only may fix the situation

    Medication not working may have some two dozens of causes: drive.google.com/file/d/0B9...

    Deficiencies in ferritin, B12, D and folate being the most likely ones

  • Wilson named "Wilson's Syndrome" after himself which is very confusing as it is nothing to do with Wilson's Disease. My own view is that his protocol is dangerous. It may be that you need L-T3 treatment but this does not imply that you suffer from "Wilson's Syndrome".

  • jimh111> My own view is that his protocol is dangerous

    One of Wilson's own patients in USA even died and here in Finland a couple of persons needed A&E. Likely because of a) wanting a fast clearance (high doses) and b) the person not recognizing how rT3 suddenly was gone

  • I had no idea finnish person died, but no wonder doctors over here don't want to prescribe T3. No one is telling them the difference between normal treatment and over dosing. Sigh.

  • It was E. Denis Wilson's own patient in USA who died. But in Finnish TV professor Välimäki told about a young man who did not understand that his dose should have been radically reduced when "clearing" comes

  • Oh I see. But yeah I remember few years ago there were many talking about Wilson's on finnish forum and trying the clearing. I remember people talking about symptoms like skin color turning orange etc and that sounded scary. Still finnish doctors seem to connect lio to Wilson's :( it's a shame.

  • On the other hand in kilpirauhanen.com "Timppa" weekly described his treatment and how a successful clearing came in six weeks and three days)

  • Babycatcher7572,

    Wilson's Syndrome is not a recognised medical diagnosis. My understanding is that Wilson used it to describe hypothyroid symptoms in patients with normal thyroid levels and low temperature.

    Not responding to thyroid replacement isn't a symptom of Wilson's Syndrome as far as I'm aware. What medication have you taken and what are your thyroid results and ranges?

  • I responded hardly at all to Levothyroxine, and when I first heard of Wilson's syndrome I hoped it might be an explanation. But then found it was debunked everywhere. Dr Peatfield has a chapter about it in his book.

    I'm hoping I've found the solution for me, which is self-medicating with NDT. Feels completely different than the synthetics. But there are a load of different things it could be.

  • Just looked at Eljii's list, linked to above, and I think whatever my explanation is its not on that list, as mine will be some issue in the system of thyroid hormones being converted and taken up by cells and tissues. I haven't been well enough yet to seriously research this end of things, partly I suspect the science is not very complete so I may never find out.

  • Hi, I totally know whereyou're coming from, I have the same problem! I too was convinced Iit was WTS, now I don't know. I know that my b12 etc may not be perfect, butthen I'm sure loads of other pretty healthy people's aren't, either, and they don't have this! You haven't had a restrictive eating disorder Iin the past, by any chance? That seems to be the root ofmy problems. Low temps can cause thyroid symptoms because the mitochondria Iin the cells don't work properly, but it seems to be exacerbated in people who have had a restrictive eating disorder. I tried T3 but it gave me migraines and other side effects, lower temps (?) Water retention, increased hunger, etc.

    I also have adrenal fatigue so I think that might have something to do with it - my temp is fractionally higher now that I am resting alot and really looking after my energy. Its still not ok though. Basically, you're not alone - lets help each other :)

  • I think that if you've got B12, and possibly adrenal fatigue, the first step is to follow them up and get them perfect. There may be well people with low B12, but you never really know how well people are, or how well they will be in 5 or 10 years.

    Treating my adrenals gave me a big boost in how much activity I could do, and I will continue to follow it up now that I'm getting serious improvement with NDT. Also B12 problems can cause a very similar set of symptoms to being hypothyroid all on their own. I think it's worth following up any clue you get.

  • Thanks so much silveravocado (gosh I do love avocados :D )

    I am doing quite well on my new and improved regime - even got a period for the first time in well over a year (TMI sorry!) although I have gained a bit of weight which is not so welcome. I think its important to remember healthcomes before vanity though.

    And thank you for the eye opening statement, you don't know how well they really are or how well they will be in 5-10 yrs time. SO true. Cheers :)

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