DIO2

[FifiJules]

Hi there, I've just got my DIO2 test results. I have the 2 genes from mother and father. I suffered terrible dementia symptoms in run up to diagnosis last year up to the point that I didn't recognise people I should have, couldn't understand what people were saying to me, couldn't put thingsinto numerical order. The pain in my eyes was unbelievable. I haven't met anyone yet who has such ferocious symptoms. Does anyone else have 2 rogue genes & if so, did you suffer the same? Thank you.

[shaws Administrator]

Welcome to our forum and as you have the DI02 genes (I am assuming you've been diagnosed as hypothyroid?) you cannot convert levothyroxine into the active hormone T3. So the doctor/professional will have to prescribe liothyronine (T3) for you.

We have some members who've had the gene defect but not sure how they've got on. Hopefully, when someone sees your post they will respond. In the meantime I'll give a link just in case you've not seen it before.

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

Have you been diagnosed as hypothyroid and what has been prescribed for you?

[FifiJules in reply to shaws]

Thank you, I was on here a lot last year but never posted. I had to fight for a diagnosis last June. My mother, sister, daughter & son have it. Family history plus horrendous symptoms ignored. I didn't get better on Levothyroxine and very quickly had to start self medicating on natural or I would have killed myself. Very optimistic usually. Sad at this terrible situation and most especially frustrated by doctors lack of knowledge across the board. Disappointed that so many people are left suffering needlessly.

[shaws Administrator in reply to FifiJules]

That's why Thyroiduk.org.uk are at the forefront and if you wish you can become a member. We get quarterly magazines (Harmony) to update us on what is going on behind the scenes and trying to change, slowly, the attitude of the Professionals. We also have excellent Advisers

thyroiduk.org.uk/tuk/member...

We have Conferences for members every few years and the last one was great with Dr Chris Steele of ITV and Dr Kendrick who has a website and an article '

drmalcolmkendrick.org/2015/...

[shaws Administrator]

These are some past posts:-

healthunlocked.com/search/D...

I have also read that if you are taking levothyroxine T3 can be added.

[Musicmonkey]

I have one faulty gene and now being overseen by NHS on combination T4/T3 as I am self-medicating T3 with prescribed Levo.

If it would be helpful check out my journey on this forum.