Found this on Thyroid UK - DIO2 Genetic Test - Thyroid UK

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Found this on Thyroid UK - DIO2 Genetic Test

Terricotta profile image
13 Replies

Apologies if this has come up elsewhere on the site, but found this quite alarming. It would explain a lot, I feel.

thyroiduk.org.uk/tuk/testin...

Terricotta

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Terricotta profile image
Terricotta
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Marz profile image
Marz

...slightly discredited at the Scottish Parliament hearing - Louise Warville has posted the video today....

in reply toMarz

I should imagine Lyn will be looking into this as soon as she recovers from her journey to Edinburgh.

The 'discrediting' was from the guy from the BTA who, in my humble opinion, was there for the sole purpose of attempting to debunk everything Lyn said..... and who's organisation fully support the current 'Guidelines' into the diagnosis and treatment of primary hypothyroidism.......

Louise

x

For future reference - no 'e'...! ;) ;)

xxxx

Marz profile image
Marz in reply to

..apologies for the 'e '.....yes think you are right about the BTA guy. Please do not think I was doing the same - am contemplating the test myself - if only to help my family reach more understanding of the condition. :-) x

LouiseRoberts profile image
LouiseRoberts in reply toMarz

I understand. :) We will be looking into this.. xx

tegz profile image
tegz in reply toLouiseRoberts

The whole argument is shifting up a gear. 3 trials maybe indeterminate, fair enough , but the cause and effect is there and I not being ignored [by others than the BTA - hard to cherrypick on 3, best ignore]

Some light reading when this cropped up on here seemed to show that up to 50% of people not well on T4 may have this common enough genetic variant.

Whether drug type trial would ever show this as fact is moot as we have to get about 10X the current NHS effort just to get to start base with the current climate on Thyroid disease.

I'm heartened that this work has come out and sure it will impact on our case.

JudyS profile image
JudyS

I have recently had the test and yes, I have the faulty gene. I feel it explains so much, and have at least got my first endocrinologist referral EVER, on the strength of it.

I've been hypothyroid since the early nineties and as far as I know have only ever been tested for TSH. Was told I'd be a 'new woman' within a month or two of starting treatment but it's never happened. I still feel no different - in fact as time goes on I've felt worse.

Terricotta profile image
Terricotta in reply toJudyS

This is excellent JudyS.

This breakthrough can only benefit people, surely. No more ducking and diving perhaps by those in the health service who wish to ignore hypothyroidism or don't think it exists.

I hope you get the result you need.

JudyS profile image
JudyS in reply toTerricotta

Thanks - me too. I am cautiously optimistic! Surely they can't ignore the scientific evidence?

We are paying for both our sons to take the test too. Neither has been diagnosed as hypothyroid, but both find it hard to lose weight and are constantly tired which sounds suspicious to me.

p1d2n3m4 profile image
p1d2n3m4

I am told i am fine but do take thyroid and adrenal supplements through dr p.How would i go about getting this test as i now have female patterned alopecia too. I have had too get nortiptilene as i cant get to sleep.Not working too well and am so exhausted all day.

Marz profile image
Marz in reply top1d2n3m4

it is featured on the main Thyroid UK website.....

p1d2n3m4 profile image
p1d2n3m4

Thanku will have a look

I wondered if any of this information had been included in the Scottish Parliament Submission as it does lend credibility and doubters should be informed.

JudyS profile image
JudyS in reply to

Very true. They should.

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