Faulty gene

[Val26]

I tested positive via the saliva test at Regenerus in August 2016 stating I have a faulty gene by which the conversion from T4 to T3 isn't good. I'd like to find out more about this and also hear from anyone else who has this faulty gene. Thank you.

[SlowDragon Administrator]

Many members who are prescribed T3 alongside levothyroxine have found that they test positive for Dio2 gene.....usually as heterozygous- inherited from one parent

A few test posts for homozygous - inheriting from both parents

Testing positive can help persuade NHS to prescribe T3 ..though it’s still a post code lottery

[fuchsia-pink]

How do you feel? Do you have any recent blood tests to share? What meds are you currently taking? If you aren't currently prescribed lio, your Dio2 result means that it's likely that you will have very low free T3 even when your free T4 is nice and high.

As SlowDragon says, it's then sometimes possible (but still often tricky) to get lio on the NHS so that both free T4 and free T3 are in the "right" place in their respective ranges for you to feel well. It must be prescribed by an endo, and not many will - but you can get the list of T3-friendly endos from Dionne at Thyroid UK - [e-mail] x

[Musicmonkey]

I have it, heterozygous, so inherited from one parent. I didn't do well on Levothyroxine monotherapy which I took for 8 years. Didn't seem to make any difference to my symptoms. For the last 4 years I have been on combination therapy T3/T4 and feeling the benefits. The only problem is the constant fight to firstly, get an NHS prescription (via a sympathetic Endo) then maintain that prescription which has taken up all of these years. I am still fighting. Not everyone experiences the same problems thankfully, but I think that most people do.

[McPammy]

I have tested positive for the DIO2 gene. I was on Levothyroxine only for 11 years. I was slowly over the years getting worse and worse. I started collapsing frequently. Not fainting, I had no strength or energy. NHS wouldn’t prescribe me T3 medication although my conversion from T4 to T3 was only 8%. I piled on loads of weight and could barley walk or sit up. I went private with guidance from a fabulous administrator on here Slowdragon. I was prescribed T3 medication after two consultations. T3 has transformed my life. I feel 20 years younger and now full of life. I’ve lost the weight I put on and more. I walk as much as I can each day and eat a healthy balanced diet. My B12 and ferritin was also deficient which I now get regular tests for and repeat prescriptions of injections and tablets. Eventually my NHS Endocrinologist agreed to prescribe me T3 medication. After many years of struggling not even knowing there was a T3 test or what it meant, I now have all the answers of what was wrong and why too. I’m eternally grateful to this site and the administrators along with all the people on here trying to help others in similar positions. The NHS is a disgrace to people who suffer with thyroid conditions.