Author Topic: Is Wilson's Thyroid syndrome a hoax ?  (Read 6653 times)

January 22, 2010, 06:31:03 pm
As a relatively newby here this subject might well have been discussed, so sorry if I am reiterating boring stuff here, but........a few years ago I ordered some of the supplements this chap sells((to 'suppport' the thyroid). Quite aprart from it being hideously expensive and costing me £40 extra to retrieve it from customs who deemed it as dodgy contraband it seems, after taking the massive capsules religiously for several weeks I began having palpitations so bad I just had to stop so never really ascertained whether this stuff is any good !  I wasnt taking any levo at the time, it was just the herby stuff causing the symptoms, though now I only take prescribed levo for my underactive condidion !
Wondered if anyone else has a feeling either way about this and maybe has tried the preparations.  I did happen upon aan American forum where a doctor called him a 'quack' who is making big money out of people's gullibility (me being one it seems).  If thats the case its quite disturbing that he is still going strong and keeps posting all these so called positive miracle stories from grateful patients. same person stated he'd been struck off in America for causing the death of a woman whilst treating her with his method.  
Discuss please ???

January 22, 2010, 06:38:44 pm
Reply #1
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Hi

I went to my GP armed with print-outs about Wilson's syndrome. Turns out I had an under active thyroid!

I do think some who have the same type of symptoms can just be suffering from a poor diet and the supplements may help. cheaper to eat a healthy balanced diet and be tested for any short falls.

Steff.

January 22, 2010, 09:43:46 pm
Reply #2
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I had a quick look on info on Wilson's syndrome and it looked to me to be a con job, and possibly dangerous. It seems to be mainly based on low body temperature, which some people with underactive thyroid have, but it's definitely not a reliable guide. I've always had low body temp, yet ended up hyper. Body temperate of 98.4 or 37 is only an average - probably half the population have lower, and many people feel tired from time to time, so selling people products based on these type of symptoms only, without proper blood tests is bound to get lots of customers.

This link gives some info
http://www.thyroid.org/professionals/publications/statements/99_11_16_wilsons.html
It would appear from this, that the supplement sold contains T3 - a potent thyroid hormone, not just a nutritional supplement. This would explain your palpitations and it could cause serious problems if taken without regular blood tests.

It's unfortunate that people like this Wilson chap can exploit other people like this, but the internet is totally unregulated. Forums like this can be helpful, as members can discuss experiences and exchange ideas but do not promote any products or sell anything.

January 26, 2010, 05:41:38 pm
Reply #3
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There are a number of things getting mixed up here.  There are a bunch of websites that sell Thyroid support kinds of products often with the lure that it will help with weight loss. One of the most outrageous sites I know of advertises a cure for hypothyroidism using Iodine.  There are a lot of different ingredients in the different products from the different sites. None of these sites, at least that I know of, uses the name Wilsonís Syndrome on their site.  There are only two sites connected with Wilsons Syndrome, one of them is mine.
 
No, Wilsonís Syndrome is not a hoax.  I have met personally around 40 doctors, including an endocrinologist, who are very serious about this.  I have met Dr. Wilson and I know his business partner, a very gifted Naturopath and herbalist, who specializes in endocrine disorders.  Dr. Wilson pioneered a treatment for Wilsonís Syndrome (which he named after himself like Hashimoto did with the condition he discovered, autoimmune thyroditis). His treatment uses T3 in a very prescribed manner. The other treatment is a herbal product using mostly ayurvedic herbs such as guggal, formulated by Dr. Michael Friedman of WTSmed.
 
Grejaybee, where did you get your products? I would be shocked if they came from one of the Wilsonís sites because all product reactions are documented, itís a FDA regulation.  Outside of a mild skin reaction that appears in about 1 in 2000 cases, there are no reactions such as you mentioned documented.

Steff, on my website I tell anyone investigating Wilsonís Syndrome to get their thyroid tested first.  If their tests are out of range, then they donít have Wilsonís. And if they are out of range they likely have something like Hashimotoís that requires appropriate treatment.  And finally, if they are borderline and the physician orders a synthetic or porcine thyroid hormone product that brings relief then I would suggest that that is the route to take.  Back-to-Health which is the commercial arm of Wilsonís Syndrome Institute sells products to individuals who fit the diagnostic criterion for Wilsonís Syndrome and who cannot find relief for their symptoms from traditional medical treatment.

There is controversy. First, the American Thyroid Association has basically two objections: there is no confirmatory research (and they are right), and second they cannot conjecture a biochemical basis for the condition. Research is needed, no question about it. If you would like to read a point by point response to the ATA try www.wilsonssyndromeinstitute.org/response.html

There is another chapter to the controversy.  You can find it nicely spelled out on www.wilsonssyndromeinstitute.org/physicians.php
I would be glad to continue to contribute to a dialogue about Wilsonís Syndrome. I first heard about Wilsonís Syndrome from my sister-in-law. A naturopath experienced with Wilsonís Syndrome gave her an herbal product from WTSmed which completely relieved or reduced twelve symptoms she had had for 20 years.

January 29, 2010, 05:52:35 pm
Reply #4
Diogenes.
I can assure you the stuff I ordered was from the official WTS website. It was called something else though at that time. I think something like Wilsons Thyroid Syndrome !
Believe me I asked questions about what to expect etc etc but never received an answer.  Same goes for my question in respect of customs problems. the only time I ever received a reply was when I had a question about a product I may buy !
I have to say I did take it seriously initially, I even contacted the doctor here in the UK who was using this treatment but she lived a long way from me and was hideously expensive and insisted on a number of follow ups, so I couldnt get involved in that. This is why I decided to give the thyrocare or whatever it was called a try. I didnt even take the full amount and would add I did already know I was hypothyroid with back up tests showing a high TSH and low T4 but just didnt like the idea of taking thyroid meds indefinitely, and so was looking for a more 'natural' alternative. I was not taking any meds at that time.
I am very glad if people are getting benefit from it but I can only speak of my own experience which was not the best and the follow on support poor. I felt I was looked upon as merely a customer only  and that really is I think the problem. Perhaps it is different within the US and thankyou for putting your side of things here.  :)


February 02, 2010, 04:51:05 pm
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Diogenes.
I can assure you the stuff I ordered was from the official WTS website. It was called something else though at that time. I think something like Wilsons Thyroid Syndrome !
Believe me I asked questions about what to expect etc etc but never received an answer.  Same goes for my question in respect of customs problems. the only time I ever received a reply was when I had a question about a product I may buy !
I have to say I did take it seriously initially, I even contacted the doctor here in the UK who was using this treatment but she lived a long way from me and was hideously expensive and insisted on a number of follow ups, so I couldnt get involved in that. This is why I decided to give the thyrocare or whatever it was called a try. I didnt even take the full amount and would add I did already know I was hypothyroid with back up tests showing a high TSH and low T4 but just didnt like the idea of taking thyroid meds indefinitely, and so was looking for a more 'natural' alternative. I was not taking any meds at that time.
I am very glad if people are getting benefit from it but I can only speak of my own experience which was not the best and the follow on support poor. I felt I was looked upon as merely a customer only  and that really is I think the problem. Perhaps it is different within the US and thankyou for putting your side of things here.  :)

Well I can't really explain it. If you had gotten a Wilson's thyroid product  with a PX on it (which is only supposed to come through a physician) then I would know exactly what the palpitations were and what caused them.  But ............ as is, I just don't know.

Some mystery remains.  I do take Wilson's Syndrome seriously though.  There is a lot of speculation about the biochemistry behind it.  And at this point, until there is research, its all speculative. That's one of the things the ATA was objecting to.  They conclude that Wilson's Syndrome is unsupportable.  In the case of theorectical cause and lack of effect research, they are right.  The only piece they miss in their deliberations is the number of doctors that use it as a diagnosis and a treatment with rather substantial success - way above the placebo effect level.  So that's where the stand-off is at this point.




December 13, 2011, 06:33:09 pm
Reply #6
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I missed this so have come in a bit late. Anyone still interested?

Rosemary
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December 13, 2011, 06:47:09 pm
Reply #7
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I don't know about this specific syndrome, it could be a load of rubbish for all I know, but I'm convinced that there are a lot of genuine conditions that the medical world has yet to discover but which, out of ignorance, they lump into the "in your head" category, especially if the patient is female.



Diagnosed hypo 23 Dec 09
75Ķg Levo + 15Ķg T3

December 16, 2011, 07:51:19 pm
Reply #8
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I have to see my GP on Jan 4th so if i think the moment is right I might mention it.

Rosemary
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