For months he's been going to the doctors with the feeling that he's burning up inside but his skin is cold and clammy sweating but really cold on the outside.
He's constantly tired and suffers with really itchy skin he scratches himself terrible in the night. They do tests on his thyroid but they always come back normal. I'm sure after reading a article about wilson tempetature syndrome that this is wjat he may have. But how do we get the doctor to take this seriously? Are there any doctors you can be referred to ?
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Lexymouse2016
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The first thing your husband needs to do is get access to his medical records and blood test results online (if possible) or get printouts of results of any blood test results he'd had over the last 2 or 3 years.
How to do that is explained in the replies I wrote on this thread :
I'm not a doctor so any suggestions I make are just guesses, particularly when there are no results to look at yet.
I'm going to suggest some things, but take them with a pinch of salt :
1) A thyroid problem (despite being told that test results are "normal").
2) A nutrient deficiency.
3) The itching sounds like it could be an allergy or an intolerance issue. Some possible culprits that get mentioned on here from time to time are:
a) A problem with meds or supplements he is already on.
b) Gluten.
c) Lactose.
d) A histamine intolerance
e) A nightshades intolerance.
The best thing I can suggest at the moment with no information to go on is that your husband keeps a complete food and drink diary for 2 - 4 weeks. Along with the diary he should also score his itching and other symptoms. So, for example he might score his itching as 6 out of 10 one day and 9 out of 10 if it gets a lot worse. It might be 2 out of 10 on a good day.
Has he tried taking long-acting (one a day) anti-histamines of the type that are available over the counter for people with hay fever or other allergies? They are available all year round.
Wilson's temperature syndrome doesn't exist, the guy made up the name himself. His treatment protocol is dangerous and he was struck off after a patient died.
However, it is possible your husband is hypothyroid even if his blood tests are 'normal'. It would help if you could post the blood test results here. Often 'normal' doesn't turn out to be so! I don't know about itchy skin but dry skin is very specific to hypothyroidism. It's not clear what 'burning up inside' means. If he feels hot this is quite unlikely to be hypothyroidism, at least if it is most of the time. There is poor temperature control in hypothyroidism, most patients feel cold but some occasionally sweat.
I wasn't aware of that, I know hypo patients can have poor temperature control and sweat. I may be looking at it from a male perspective and of course if he has Hashimoto's (autoimmune thyroid disease) he can swing from hypo to hyper. Essentially there is poor temperature control in hypothyroidism.
The thermostat is broken! And sometimes it gets stuck on too hot, and sometimes at too cold. Neither is much fun. Mine is better now, after years of treatment, but not completely right. And still totally unreliable.
Itching ? - look up neuropathic itch. I have bouts of severe itching on my arms which results in small blisters. In my case it is low B12 - which can affect nerve endings.
Lots of ideas as you can see but get as many test resultsasyoubcan as that should help to pin point the problem also if you have a thermometer taking a basal ( waking) temperature for a few days. That could also help in a diagnosis.
Having recently suffered from shingles myself that was what occurred to me too.
However, if he has been seeing his GP that surely should have been picked up.
Shingles needs treating as soon as possible,in order to avoid unpleasant after effects,as the pain from affected nerve endings can go on for many months.
I was horribly itchy and would scratch in the middle of the night and leave scars on my body. At the time I was gluten free along with other measures to control my allergies. Starting treatment for Hashi and itching disappeared
He may need some urgent attention i.e. get him to hospital. Addison's disease (adrenals) starts with terrible fatigue (yes, it is linked to hypothyroidism) thirst and craving salt. Some people on the forum have mentioned itchiness as well.
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