is wilsons disease connected to thyroid

[positiveperson]

anyone experienced wilsons disease. it seems to be connected to the thyroid.

[helvella Administrator Thyroid UK]

Do you mean:

Wilson's disease is a genetic disorder in which excess copper builds up in the body. Symptoms are typically related to the brain and liver. Liver-related symptoms include vomiting, weakness, fluid build up in the abdomen, swelling of the legs, yellowish skin and itchiness. Brain-related symptoms include tremors, muscle stiffness, trouble in speaking, personality changes, anxiety, and psychosis

en.wikipedia.org/wiki/Wilso...

Or the substantially discredited Wilson's temperature syndrome?

[LindaC]

I've seen this also, several years back, as being thyroid related, not the Wilson's one helvella so kindly mentions below. I'm still stumped on certain symptoms. Hope you find some answers and are doing OK? xox

[positiveperson in reply to LindaC]

I have some new gut symptoms which the doctor is unable to give me a diagnosis for. i took tablets for my underactive thyroid years ago, but after a while, decided they may be making me feel worse, so with the help of a endo. I came right off and that was interesting.

i tried to follow a better diet and paid more attention to my general health. The surgery continued to monitor thyroid and last time it was 4.5. so now under the number they would prescribe medicine for. i seem to remember the goal posts were moved. i have never been quite right, but not bad until recently. i researched my new symptoms and came across this genetic disease called wilsons. i felt it could apply to me ,and i should consider i was getting too much copper in my diet. i started a course of zinc at that point, but its early days. i feel slightly better ....could be a placebo effect. i have been under more stress than usual and have to take that into consideration. that effects everything. plus age of course. Anyway, i shall plod on and hope i can resolve this problem. thank you for replies

[LindaC]

Yes, they seem not so good with gut stuff; in fact 'not so good' with much chronic stuff! I had gut issues ways back - a poorly functioning thyroid affects all of our bodily functions - yet doctors seem not to want to know and attribute much to IBS. I hope you find someone who will do something for you.

So sorry to hear that you came off thyroid meds, for feeling not so good. However, TSH of 4.5 is far from 'fine'. Their ranges are plain silly. Were you OK about coming off thyroid hormone or 'talked round' coming off? A few years back there was a time when endos were seeking to take older patients off thyroid meds... likely at the time they are most needed!

Proponents of Wilson's syndrome believe it to be a mild form of thyroid hormone deficiency (hypothyroidism) that responds to treatment with a preparation of a thyroid hormone called triiodothyronine (T-3). Maybe try to find a listening ear doctor?? Needle in a haystack.

As many, we just have to keep on plugging away at them; now made more difficult due to Covid and then NHS difficulties. Do take care. xox

[positiveperson in reply to LindaC]

I asked if an endo. at RVI Newcastle could guide me, while i came off the medication. I wasn't expecting to be taken off completely straight away, but the effect was amazing. i felt terrific with loads of energy. I was warned it wouldn't last and it didn't. The thyroid adjusted itself and gradually I slipped back to where I am now. I was thinking about asking to return to medication when I came across a possible connection with Wilsons disease.

I suppose age has something to do with my new gut problems, but the Dr says iv had the appropriate checks and they can find nothing wrong. I asked the surgery to send me the results of the latest blood test and a scan I had. So I am left to solve the problem myself.

They previously gave me the details of the Fodmap diet, which I tried, but it was hard to follow and I seemed worse afterwards. Too much sugar. not for me. still taking the zinc.

[LindaC in reply to positiveperson]

Oh well, at least you tried to 'come off the hormone' and, interestingly you were warned, it didn't much work. Can you approach them to have hormones again? Sadly, anything outside of their 'little norm' is frowned upon, disparaged and/or worse. Hope someone will listen.

I was 'advised' to come off T3 but realized in no time just how ill it was making me - worst still, I've never been able to get back to my prior dose - due to existing heart issues [which had resolved on T3] and am now paying an even bigger price.

Yes, gut issues are notoriously difficult to diagnose and live with. Seems Trial and Error are the only options if all tests have been done. Best of... take care and be well.