Wilsons syndrome what do you make of it? - Thyroid UK

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Wilsons syndrome what do you make of it?

Jump1 profile image
11 Replies

Wilsons syndrome what do you make of it?

My results are witin range not optimal. My body temp is very low even in warm room. My symptons started after illness and severe weightloss. I am hashi positive 52 level . I have 2 years devastaing hair loss. My metabolism has slowed hair constipation coldness.

I have t3 med. Should i take it? What are your views on wilsons syndrome

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Jump1
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11 Replies
Summer64 profile image
Summer64

I've read about it and don't know what to think to be honest. I've recently suffered with extreme cold and temperature of 32.5 at times. I never get above 36 even if I feel normal. This happened after my T3 was stopped. I've added it back in and it's improved so there is a definite connection with T3.

Jump1 profile image
Jump1 in reply toSummer64

Do you take t4 as well? Do you have hair loss? My worst sympton is it i fall witohin normal ranges on everything. Antibodies slighrlt raised 52. Dont know wat to do

Summer64 profile image
Summer64 in reply toJump1

Yes, I take T4 too. I was sent underactive because I had Radioactive iodine ablation. My hair has thinned but I did have a thick mop before so it's not so noticeable on me. I also have the faulty D102 gene.

Jump1 profile image
Jump1

Not sure what alot.of that means but sorry to hear it. It doesnt sound good i would give everything up just to be healthy again

endomad profile image
endomad

I am a water engineer and i have several customers with 'wilsons' which to me is a toxicity of copper, copper builds up in the system and becomes life threatening, i make and fit filters that remove the copper from utility water form them so it is safe for them to drink, all our water comes through copper pipes and it leaches into the water so you can imagine, its not good but it is extremely rare as far as i know.

The other wilsons to do with temps is an odd one to me, even when i am feeling great my temp averages 35.4 i often go as low as 34 my dr was never concerned! it can have 2 effects on me, im either cold to the bone teeth chattering no matter how hot the environment and im sunbathing in tracksuit and duvet in the garden when it is 30+ degrees :) but it doesnt happen often.

I have nearly always felt too hot for as long as i can remember, i am out walking doggy in winter in tshirt. It was explained to me that my core was so cold almost hypothermic that externally it felt ok to me...my dr said it wasnt possible to be warm and hypo lol oooops thats another little box i dont fit into!

Cooper27 profile image
Cooper27

I've seen a few people mention Wilson's here before. Unfortunately he was discredited after a patient he was treating died (I believe from a heart attack) as a direct result of his experimental treatment. The syndrome is therefore widely discredited.

Clutter profile image
Clutter

Jump1,

As Cooper27 says, Wilson's Temperature Syndrome is not a medically recognised condition and Denis Wilson was struck off after a patient using his high T3 protocol had a heart attack and died.

Jump1 profile image
Jump1

Wow how much t3 were they takin?

Joanneconnor profile image
Joanneconnor

I think I have it, my temps are always low and I'm cold to the bone, I seeing private endo end of March so I'm gonna ask?, I gave taken T3 before, it didn't agree with me, I started shaking and sweating and feeling dizzy whilst out shopping, I don't take it now!

Jump1 profile image
Jump1 in reply toJoanneconnor

Sorry to hear that Joanne what are your levels

Joanneconnor profile image
Joanneconnor in reply toJump1

Haven't done my temps for ages I started doing then because I suspected high cortisol, I was right! My temps were 35.2 average about 35.8

My resent tsh was 1.45 the doc took it on himself to not bother with t4 and t3 as he said my tsh was normal it's been suppressed for a lot of years, but I take thyroid s now, and doc should be testing t3 if I'm taking medication with t3 in it, I see Endo in a few weeks so he can do them

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