Dio2 gene testing: Hello, I wonder if anyone has... - Thyroid UK

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Dio2 gene testing

eli1 profile image
eli1
14 Replies

Hello,

I wonder if anyone has had this test and have they found it useful and worth having. Thank you.

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eli1 profile image
eli1
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14 Replies
SlowDragon profile image
SlowDragonAdministrator

Yes quite a few of us have had this test

Obviously not everyone will test positive.

But a high percentage who have done well on addition of small doses of T3 ... many have tested positive as either Heterozygous (or more rarely homozygous) DIO2

Some medics have subsequently recognised the significance of having DIO2 gene variation and then prescribed T3 on NHS. But other CCG areas still flatly refusing to allow prescription

Increasing numbers of endocrinologists do understand the significance, even if they still won't prescribe on NHS

New research published just this week

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cazmania7 profile image
cazmania7 in reply to SlowDragon

Hey @slowdragon that link didn’t work for me. Can you try to repost it? Thanks!

SlowDragon profile image
SlowDragonAdministrator in reply to cazmania7

Odd

Try this

fjfsdata01prod.blob.core.wi...

Or search

Frontiers in endocrinology

Combination Thyroid hormone therapy

cazmania7 profile image
cazmania7 in reply to SlowDragon

Thank you! Still didn’t work. Could be my device!

SlowDragon profile image
SlowDragonAdministrator in reply to cazmania7

It's a PDF

Just search google

It's new research published this week by Dr Pete Taylor and Colin Dayan etc

helvella profile image
helvellaAdministratorThyroid UK in reply to cazmania7

Doesn't work for me either.

ATVMWF profile image
ATVMWF in reply to cazmania7

Hi Cazmania7,

Try this link..

journals.lww.com/co-endocri...

cazmania7 profile image
cazmania7 in reply to ATVMWF

Thank you!

eli1 profile image
eli1 in reply to SlowDragon

Thank you for your reply. I think I may do this test as it will confirm either way.

Marz profile image
Marz

Have you clicked onto Related Posts where you will find ten similar posts ... scroll down and down if you are on a phone or to the right of your post if you are on a PC 🤔

cazmania7 profile image
cazmania7 in reply to Marz

I don’t think the app has certain functions. For example, I can’t see saved posts when using the app! Via browser it’s all fine though

NWA6 profile image
NWA6

So short answer is no it’s not useful as many professionals don’t recognise it as proof that the person needs T3. BUT for me it was very reassuring, i felt I had an answer to my low T3 but in al honesty a history of blood tests will do that too.

McPammy profile image
McPammy

I had this DIO2 gene test this year. I’d been struggling for 11 years on Levothyroxine T4 alone. Last year I had an extremely bad year with my thyroid health. I knew I needed T3 but getting any Dr to agree, even though my blood tests proved so, was a nightmare like a living hell.

I got this test done and it is positive! I gave a copy to my GP who was really thankful as he’d been trying to defend my corner. But the NHS Endo would not prescribe. 3 months ago he finally prescribed!!

For me to get the positive result was a relief, a whole load of light bulbs switched on. I now know what was wrong and importantly for me why it was wrong.

Now on T3 I’ve never felt so good in over a decade. I feel 10 years younger.

My message would be to get it done as it could answer many questions you have about yourself.

Not all have this gene even within the same family. My sister,who’s had thyroid cancer, does not have the gene even though she struggles too with converting T4 to T3. And we both have very low cortisol on T4 alone. But adding T3 for me my cortisol has bounced back to normal. My sister however is still struggling as they won’t give her T3. We are on the case for her still.

DippyDame profile image
DippyDame

Yes! My Dio2 (3 letters and 1 number) tested positive/homozygous (from both parents)

It provided proof that my T4 to T3 conversion is very poor and helped me further research my thyroid problem.

Combo T4/T3 didn' t help so I moved to the last resort, T3-only.

I then discovered that I need a huge dose of T3 because I have Thyroid Hormone Resistance....long story in my profile.

However this was all done without medics.....my excellent advice came from TUK along with much personal research.

I did very briefly see an endo who reluctantly conceded that adding T3 might help ...and when T3 only began to work his response was, that since it seems to be working I could maintain the status quo ....but very pointedly added that it would not be his advice. He didn't have a clue!

I now self medicate, buy my T3 and am recovering well. My health started to decline about 50 years ago, medics finally diagnosed FM and CFS which never convinced me.

However poor conversion can be evidenced by labs with high FT4 with low FT3 but that may not be enough to convince a doubting medic to trial T3.....a positive Dio2 result just might!

The Dio2 test helped pull me out of a state where I was barely able to function....depending on your thyroid health it can sometimes be a very significant tool.

I may not be a typical patient but it helped me!

Good luck

DD

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