Wilson's Syndrome

[babycatcher7572]

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

[jimh111]

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".

[Justiina]

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.

[Clutter]

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?

[Justiina]

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.

[SilverAvocado]

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.

[SilverAvocado in reply to SilverAvocado]

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.

[Hidden in reply to SilverAvocado]

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

[SilverAvocado in reply to Hidden]

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.

[Hidden in reply to SilverAvocado]

Thanks so much silveravocado (gosh I do love avocados )

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

[RobinPaulWilliams]

Hi BabyCatcher

I'm wondering whether you managed to get any more clarity regarding Wilson's Syndrome. In the course of my research I had discounted it because of all the negative reviews I came across...

However, on following the thread relating to my persistent low body temperature (generally around 36 celsius), I have been reading the Wilson Syndrome website with much interest: his arguments about T3 treatment for short periods are convincing... and also those against using T4 or NDT! My problem for trying is first in finding a doctor who would be willing to prescribe me anything (let alone T3), as my labs are all normal.

I have only just started experimenting with Pregnenolone, which seems to take my temperature up immediately to 36,5 celsius...

I'd appreciate your reflections on Wilson's Syndrome, seeing that you are already a year ahead of me in your quest...