Thyroid resistance: Does anyone know what causes... - Thyroid UK

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Thyroid resistance

Tanyaking profile image
12 Replies

Does anyone know what causes thyroid resistance and how it's treated?

Tanya,

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Tanyaking
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helvella profile image
helvellaAdministrator

Be prepared for a hard read!

The most commonly reported cause seems to be genetic, and from the little I have read, that often affects the Thyroid Hormone Receptors.

The only treatment I know of is to increase levels of thyroid hormone to levels above those usually found in the blood. T3/Liothyronine is often used,

Here are a couple of links:

ncbi.nlm.nih.gov/pubmed/223...

thyroidmanager.org/chapter/...

Samuel Refetoff seems to be a major player. So you could look for papers by him in PubMed:

ncbi.nlm.nih.gov/pubmed/?te...

Rod

jimh111 profile image
jimh111

Resistance to thyroid hormone (RTH) is a genetic disorder, a few other members of the family are likely to have it. It is spotted by abnormal blood results that are inconsistent with the clinical presentation, or the presence of a goitre. There is usually an elevated fT4 with a normal or elevated TSH but the signs and symptoms indicate either euthyroidism or hypothyroidism. Sometimes, on the basis of the blood tests, the patient is wrongly treated for hyperthyroidism.

How is it treated? If an endocrinilogist suspects RTH the patient is referred to a specialist centre (Addenbrookes) for assessment and possibly a genetic test. If RTH is found treatment is either levothyroxine to overcome the hormone resistance or quite frequently do nothing as the patient's high fT4 is already compensating for the hormone resistance.

I'm sure there are other forms of hormone resistance which are not of genetic origin. A considerable number of patients with normal blood levels of hormone are hypothyroid and require high doses of thyroid hormone which put their hormone levels outside the reference intervals. This form has not been investigated by the endocrine profession.

Tanyaking profile image
Tanyaking

Is that hospital the best one in the uk for thyroid resistance sandy12

helvella profile image
helvellaAdministrator

Thanks for posting that Sandy. It is interesting. And must be difficult for all of you.

We see a number of people here with issues which are simply outside expected, known, documented states. I have a nasty feeling that if you do not fit the profile they are investigating, those involved in research will not be very interested.

What sort of T3 levels are you talking about? And what sort of dosage?

Rod

helvella profile image
helvellaAdministrator

I imagine one of the difficulties was getting a doctor to agree to prescribe to such high levels?

Parbrook profile image
Parbrook

I my case, my thyroid was affected by treatment with Interferon alpha (a known risk). The result was low FT4 and it took a few years of treatment with Levothyroxine to realise that I had poor conversion of T4 to T3.

I have a slight suspicion (but no evidence) that aggressive chemotherapy many years earlier may have done some damage as well.

Tanyaking profile image
Tanyaking

Are their more knowledgeable endos there who could help complicated cases?

helvella profile image
helvellaAdministrator

Thanks - that is pretty lousy.

Rod

Tanyaking profile image
Tanyaking

Thank you,I think my problem is different as I can't get my blood levels up at all ,I've taken 300 mg thyroxine and went mental and still low bloods 5 grains erfa and low bloods but I don't have a thyroid due to graves I'm in a right state.

Phlogiston profile image
Phlogiston

Hi Sandy12, it's been very useful to me to read your replies on this thread. I posted today about lack of response to T4 (now on 800 mcg) and shaws pointed me to Dr Lowe's site regarding resistance. Interested to see your son takes T3 - when I tried it before it had no improved effect over T4, but I might try with a high dose of that before going down the dessicated thyroid route. thanks for your insights.

Amber12345 profile image
Amber12345

I'm taking inositol for insulin resistance as I have pcos! Please google pcos and inositol to see the way it helps insulin resistance. I get it from amazon it's a vitamin. Seems to be helping as I'm not feeling as shaking before I eat. Do you have insulin resistance?

jennygrigg profile image
jennygrigg

Hi Sandy,

my 21 year old daughter is still not optimized on 160mcg t3, and I suspect some sort of resistance. I am given hope by your son's situation and was wondering if you could also send the document about thyroid resistance to me? I have ordered Dr Lowe's book to read his protocol. Thank you again for your story, it gives us hope. :)

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