Wilsons Temperature Syndrome - any sufferers on here?

After 21 years of having Hashimotos and still feel rubbish on Levothyroxine, my symptoms seem to be leaning towards my having Wilsons Temperature Syndrome. Low temps, high pulse, anxiety, poor adrenals, headaches, not converting Levo to T3. Am seeing Dr P again on Thur, but he cant prescribe! Im now off work and unable to function after stopping and starting Levo and taking NAX and NT. Anyone know any Wilsons specialists in Kent?

9 Replies

  • Millefleur, Wilsons Temperature Syndrome is premised on hypothyroid symptoms when bloods are normal. You already have a clinical diagnosis of hypothyroidism.

    I think it's more likely an intolerance to Levothyroxine is why you've felt unwell previously and lack of thyroid hormone is why you feel so ill now. Ask Dr.P about using T3 only to clear T4.

  • Hi Clutter,

    No-one seems to understand why I would become intolerant to Levo after 21 years of taking it! Dr P doesn't seem to be suggesting any other courses of treatment other than NAX and NT. I did say on the telephone today that taking 50-100mcg of Levo makes me feel like a head case! Jittery, anxious, inner trembling, out of control thoughts. But I also said that I could not be without something other than NAX and NT, especially as NT does not contain any actual hormones. He said it does contain them, its like Armour but weaker and they just cant put it on the label?? I'm feeling really awful now, off work and cannot move with fatigue. Even if Dr P does suggest T3 I am still really concerned that I will have to order from the internet. After all the stories of meds not containing safe ingredients, its very worrying - which is obviously not helping my adrenals or anxiety.

  • Millefleur, People do become intolerant to T4 after years of using it successfully. Sometimes triggered by menopause.

    If Dr. P is right and the manufacturer is claiming NT is hormone free to avoid FDA regulation, it isn't working for you. Your TSH is high. Time to try something else.

    I understand your reluctance to buy T3 from the internet but you mitigate your risk by buying from recommended sources. If you are still reluctant ask Dr.P to write to your GP recommending T3. If your GP won't give you a NHS prescrition perhaps s/he'll give you a private prescription. Alternatively, see another private GP or endo for a prescription.

    From nutri-online1.co.uk/Patient...

    Nutri Thyroid

    provides hormone-free thyroid concentrate, to nutri

    tionally support this regulatory gland.


    Each tablet typically contains:

    Thyroid concentrate*

    140 mg

    *Bovine source from New Zealand

    Tableted with:

    Dicalcium phosphate

    Microcrystalline cellulose

    Gum acacia

    Stearic acid

    Silicon dioxide

    Coating (polyvinyl alcohol, talc, polyethelene gly

    col, polysorbate)

  • Either Nutri Thyroid contains thyroid hormones and their claims are untrue. Or they do not contain thyroid hormones and it is hard to understand anything about how they are claimed to work.

  • Helvella, I've seen USA research (no link) showing some hormone-free supplements contain varying amounts of hormone and that taking 4-6 capsules could deliver up to 22mcg thyroxine.

    While I can see that might be sufficient for some undiagnosed patients it's nowhere near sufficient for someone clinically diagnosed.

    I don't understand what benefit there can be from hormone-free supplements either.

  • Yes - there have been a few papers which found that. (And that some contain effectively none.) It is an issue which I find very disturbing. Are these companies lying to us?

  • Nutri thyroid and NAX do seem to be Dr P's standard protocol nowadays.

  • Wilsons Temperature Syndrome is where your bloods show you are within range (even if you have previously been diagnosed with hashis/thyroid). So docs say keep on with levo you are 'in range'. But you have a low basal temperature (Dr P checked mine and yes I do). GP doesn't check, of course! This and symptoms (GP doesn't recognise symptoms, only blood ranges) point to years of stress leaving you on the 'stuck' position and your body is not converting T4 to T3.

  • It's cheaper for u to buy t3 than the NHS to, and there are places we all use that provide good stuff. You r unlikely to get t3 only out of GP without an endo and even then not likely.

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