Wilsons Temperature Syndrome - Underactive/Hashi Thyroid

[millefleur40]

This appears to be a very interesting link. wilsonssyndrome.com/ebook/w...

it states that people diagnosed with underactive thyroid or Hashi's could be suffering from Wilsons Temperature Syndrome. I was diagnosed with Hashi's 21 years ago, just after the birth of my daughter. I have had lots of anxieties in my life and do feel that my body has gotten 'stuck' on the adrenaline button and I now cannot tolerate any sort of pressure. My main problem over the years has been panic attacks and anxiety. I have had fatigue, coldness, low temperature.... lots of symptoms. I have been stuck on 100mcg of Levothyroxine for the 21 years and have felt rubbish! Been sent off to various specialists for a list of ailments (which now I find are linked to Hashi's). Thinking that the way forward may be trying T3 - will have to buy from abroad and self-medicate though, as GP/Endos will not prescribe. I saw a post today on a facebook thyroid support group saying that the NHS cost is over £100 for 28 T3 tabs, when they can be purchased over the counter abroad for a couple of pounds!!

[Chancery]

This is an interesting link, but on reading it, I thought 'it sounds just like hypothyroidism a new way' and wondered if it was a real thing. I Googled it and discovered that no, it isn't. It's not a recognised medical condition. Here's the Mayo Clinic on the subject: mayoclinic.org/diseases-con...

This is rather like 'discovering' measles and announcing it's a new condition and christening it Smith's disease after yourself!

[Marz in reply to Chancery]

Not sure how well the Mayo Clinic is attached to mainstream medicine. Low body temperature was well documented as being connected to Thyroid - as per The Broda Barnes Institute.....named after the man himself !

[Chancery in reply to Marz]

You are absolutely right, Marz, I don't think the Mayo is considered mainstream either. You can tell I pulled that out in a hurry! Still doesn't alter the fact that medicine doesn't recognise the Wilson's disorder though.

[helvella]

My experience of Mayo Clinic (not personal - but from others who have attended one of their actual clinics, and what I have read) is pretty mainstream. They like to think they know so very much but at least some of that is because their reputation means people with interesting and difficult disorders seek them out. So they end up seeing far more things than many others.

In at least one area, they encourage people to visit for diagnosis and investigation. The people somehow get the money together, attend, are put through the mill and leave with little more understanding or treatment. And possibly 50,000 US dollars less well off. And cost of transport and hotel accommodation.

The people who seem to benefit every time are the doctors - who gain experience, write up some reports, and see the queue to see them get ever longer.

Yes - I am not exactly impressed. Though some of doctors are truly excellent.

[Hidden]

Hi, I was diagnosed (one of my many diagnoses) and treated (not by mayo) for this over the past year. Had a dire time when cut back on levo at the beginning (was even an effort to breathe), but improved on ndt but not really to the point I could actually function in the world. I've quit that route and now back on sorting my adrenals (different Dr) but who knows what will sort me. 😴