PCOS and Wilson's Syndrome: Reader's Response

by April & Brooke
(UK)

We recently published an article called "Might You Have Wilson's Syndrome?". Several readers of the article responded to us.

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Here's a response we received from April:

"Hi There. I always enjoy getting the PCOS review.

I was concerned to read about Wilsons syndrome. I looked it up on wiki and was read that it has been described as phony disease."

Editor's reply:

"Hi April,

Whether Wilson's is phony or not depends on who you talk to. Just because a wiki says it is phony does not mean that it is.

There is a tendency in the medical profession for "group think". For the most part, this profession is relatively resistant to changes in their way of thinking. They are slow to accept new concepts, especially if those concepts do not agree with their pre-existing beliefs.

So we present information to you that may not be a part of "mainstream" thinking."

April's reply:

"Thanks for your reply. I have had PCOS for many years and I am now 49. I have struggled with the many aspects of the disease. Interestingly, I developed Hashimotos thyroididtis , (about three-four years ago) and had so many horrid side effects from having it. However I commenced thyroid replacement treatment and after a very short time the cysts in my ovaries disappeared!

And my serum testosterone returned to completely normal after years and years of it being really high. My personal thoughts on this are that he link between thyroid and PCOS is there! and I actually agree with your comment on Wilsons disease !!! Oh and I have had regular periods in the years since thyroid treatment every month on the month without fail!!!

I personally feel that I had a thyroid disorder all my life but it went undetected, as the levels on serum blood testing always remained normal. As a child I can always remember being very chilly, my temperature( apart from times of viral illness) when taken orally was always low. My fingers and toes always were extremely cold, there were other aspects too, that link directly with thyroid disorder.

I adopted 2 children because of my infertility, and whilst I would change a thing,(and I cant anyway!) I cant help thinking that I might have had my own children if I had been given thyroid supplements earlier, since the effects of taking thyroxine have been incredible. Incidentally the Hashimoto's, was diagnosed after an incredibly severe period of stress.

I researched Hashimoto's and as its an auto immune response disease , up there with the type like rheumatoid arthritis and Coeliac disease there was a lot of research on eating a gluten free diet. I cut out all gluten and alcohol from my diet...Have never felt better !!!! So your articles are spot on!!!

I sounded really negative I didn’t wish to come across like that! I really enjoy the emails I receive and It just great that someone is so supportive over PCOS, as its a disease that wrecks havoc!

My very best wishes and thanks!"

April

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Here's a response we received from Brooke:

"Your article about reverse T3 and Wilson's Syndrome caught my eye. I don't know if you follow Dr. Jack Kruse's blog, but he is doing a lot of interesting work about leptin resistance, and testing for reverse T3 is one of the first things he recommends. I'm wondering if you think Wilson's syndrome and leptin resistance could perhaps be one in the same, or if they are different, if one could lead to the other?"

Editor's reply:

"Hi Brooke,

I don't follow Jack's blog, but I am now, thanks to you.

In answer to your question, the answer is "I don't know". I suspect they are different mechanisms. However, if I've learned anything at all about PCOS, it's that everything is closely related to everything else, and everything influences everything else. If you change one thing in the body, everything else changes in response.

Can one lead to the other? I don't know; I tend to doubt it. I might suspect they could indirectly influence each other."

Brooke's reply:

"Thanks for the response, and thank you for the ongoing newsletter. If it wasn't for your e-book, I don't think I'd be a mama now.

I found Jack's blog about a month ago via PaleoHacks, and I have to keep an extra window open to look up some of the medical terminology, but it has been worth slogging through to try and get my head wrapped around leptin resistance.

The reason I was wondering if Wilson's and leptin resistance might be related is that in my little n=1 experiment, my morning body temp has gone up a full degree since starting the diet recommendations to increase my leptin sensitivity (still working on the sleep aspect). I haven't done any labs to see what's going on under the hood with my reverse T3 yet, but not being cold all the time is nice."

Brooke