DIO2 gene testing

Hello,

I just wondered if anyone had done this test with regenerus labs? Did anyone with a positive result find that this helped them to obtain t4/t3 combination therapy from their endocrinologist? I'm seeing mine in a few weeks and will be speaking to them about t3 which I plan to start whether they agree or not but I just wondered if doing this test might help obtain their support.

Thanks

Cathy

10 Replies

oldestnewest
  • Yes and yes. Positive - Heterozygous - inherited from one parent.

    I actually started on T3 first, before doing the DIO2 test. The difference on T3 was so astonishing I thought it worth yet more money to do the test.

    I went from being unable to walk, even at snails pace for any more than 5-10 mins in agony, to walking normally for about a mile, just 7 days after starting T3.

    I did get NHS agreement to fund 3 month trial, even before they knew test result

    My endo and GP are so delighted with my progress. I am getting NHS T3.

    I think/hope DIO2 result will help support my case if need be. More on my profile.

  • That's amazing what a great transformation. How long did you have to wait for the results? Did you Pay for the counselling or did they send results to your doctor?

  • You have to have counselling (unless booked through a functional doctor or nutritionist) so it adds another £60.

    They won't send to a GP

    Takes about 10-14 days. Be warned it's a lot of spit required. So allow plenty of time.

    Councillor was actually OK - a functional nutritionist with particular interest in thyroid.

  • Ok great thank you for the info. One last question can you send it back by Royal Mail or do you have to courier it? Just thinking how I'll do it around work!

  • I only posted. I don't remember. Probably paid for signed delivery.

  • Also yes and yes. I managed to persuade a private endo to let me try T3 in addition to Levo after he'd reduced my Levo to 75mcg in an attempt to get my tsh number to where he wanted it regardless of how I felt. The T3 was like a light going on but the endo wasn't happy and 'handed' me back to my gp who was brilliant and kept on prescribing the T3 on the NHS. When it looked as if the local ccg was going to stop it, I paid for the DIO2 test thru Regenerus as I was certain it would prove I had inherited a faulty gene. I had. My gp has used this to keep me on T3. However, if T3 is withdrawn next month I'm not sure where any of us who need it stand. It's very worrying.

  • It is all really worrying. I wish I'd investigated all this sooner as I'm worried I will have missed the boat. Surely they have to keep existing patients on it? If they won't give it to me I figure I'll order it from Europe but I would still like the endo to keep an eye on my bloods for me!

  • NHS England meeting in London re liothyronine. They are well aware large numbers of patients need T3 and that T4 is not the same

    They need to sort cheap supply. Or recategorise as not a generic then can reduce price

  • Yes. And no. I bought the test, and had someone I know act as a 'counsellor' to interpret the results, so I saved that part of the cost. I do have the defective DIO2 gene.

    But ... my endo used the results to send to the hospital board to request T3 to be reinstated, and it was turned down. I don't have any more details about their decision, just a refusal. All GPs and hospital drs in my CCG (Norfolk) were told in 2016 not to prescribe T3.

    So having proof of the defective DIO2 gene is not always the ammunition you'd expect. I'm appealing, so you never know. Just don't put 100% trust in it!

  • I also have the defective DIO2 gene, however the test was not recognised by my GP or CCG and my T3 was stopped after 7 years of T4/T3 therapy. The addition of T3 made an enormous difference to me after many miserable years on T4 only.

    I have been buying my own NDT and T3 for nearly two years now. (My MP did nothing to help me get T3 reinstated).

You may also like...