DIO2 Genetic Test and other genetic tests

Hi All

I would like to ask about the above test - if you find you have one or both of the faulty genes, is there anything that can be done to treat you ? Or is it a big fat 'nothing' and thats why Regenerus insist on £60 worth of 'counselling' ?

Someone on here did write about this test, and they followed it up by more detailed testing from 123andMe ? I would like to know what could I expect the 123andMe test to show up? An answer to the cause of one's autoimmune disease ?

Thanks

Last edited by

15 Replies

oldestnewest
  • The test is DIO2 (that is three letters and a number - not one letter and three numbers). The gene is also commonly called DIO2!

    I point this out so that you stand a better chance of finding the information you are looking for!

  • Daffers, if DIO2 testing shows you have the impairment which affects T3 conversion it may help you get T3 prescribed in addition to Levothyroxine IF your endo understands it, and IF the CCG permits prescribing of T3.

    I've seen members distressed and worried by their gene testing results because they didn't have an interpretation which presumably comes when the counselling option is taken up.

  • Yes I see how it might well be distressing. hadn't thought it through properly.

    thanks

  • The research so far shows that patients with primary hypothyroidism (a failing thyroid gland) don't do quite so well in cognitive tests if they are treated th levothyroxine only. There is nothing to suggest that those with healthy thyroids are in any way disadvantaged. About 40% of the population have the polymorphism in one gene and 16% in both genes.

  • Thank you for explaining. I thought I had primary but have now (after 10 years) been diagnosed Hashimotos. So I guess I don't have a healthy thyroid and might benefit from the test ?

  • Hashimoto's is an autoimmune condition that attacks the thyroid gland leading to primary hypothyroidism. I believe it is the most common reason for hypothyroidism.

  • I have had the test and been found to be heterozygous. I now have T3 in additional to T4 and my symptoms have improved

  • I'm glad you are benefitting from T3 added to T4. I think I will have test.

    Was just worried when they said you'd need counselling -what nasties might show up!

  • I don't know about the 123andMe test and someone who does will respond.

    Re the D102 gene test - if it is positive it means one cannot convert levothyroxine to sufficient T3 and therefore remains quite unwell. T3 may be the only hormone that can make them feel well as it is the Active hormone we all require to function normally.

    One member's doctor took no notice of her positive D102 test but another Endo did take notice of his patient's test.

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

  • I have just had the result of a DIO2 test and it was positive from one parent. The £60 counselling took 30 mins and consisted of being recommended to take about another £1000 of private tests! Including 123&me. I was also told that the advice on this fabulous forum was incorrect! I ignored that! First stop for me is my gp , again,to present the result and see if I can get T3 prescribed. I feel the result could be a hollow victory if I have to continue sourcing T3 privately but we shall see! At least I know I didn't imagine the fact these Levo was not working for me.

  • What was their advice which contradicts what you have seen here?

  • She said definately only take medication once a day and there is no need to leave 4 hours between vitamins and medication. Also to never self medicate! If only it was that easy. The actual giving of the result to me only took 10 seconds of the thirty minutes!

  • chriscross66,

    Once a day - or split - that seems to be (like so many other things) something that varies. We are each individual and some may do better on one dosing pattern and others on another.

    The gap between thyroid hormones and vitamins and minerals (most especially iron, but also magnesium, calcium, and many others) is clealry important. Even today we have been able to read a specific example of the interaction of iron and levothyroxine.

    It would be great if no-one had to self-medicate. Doing so is the last resort for many. I'd guess that by far the majority who find themselves doing so would in their earlier lives have been shocked by the very idea.

  • I decided not to bother. I already know that I don't convert very well, and there is a family history of early onset osteoporosis (I was diagnosed age 46). So its highly likely that I do carry the gene, especially since it is so common.

    Synthetic T3 didn't agree with me, and so I buy Thai NDT. I think I'm unlikely to get Armour or Erfa on the NHS so there is really no benefit to me. Yes, it would be slightly satisfying to get the official stamp. But not enough to spend the money I could spend on something else!

    I've warned my daughter, in case I am not around if she is diagnosed underactive. I don't have Hashimoto's, my thyroid was damaged by a drug. So hopefully the fact that she is guaranteed to forget all this won't be important.

  • It might or might not help to have the diagnosis. I had it tested by Regenerus (one faulty gene) and didn't find the first counsellor any help - just felt he was plugging his private work.

    The second counsellor who got in touch after I complained was better, but it was a similar story.

    The NHS don't seem to take any notice of DIO2 diagnoses so it didn't help me to get T3 prescribed, but knowing that I had a conversion problem gave me more confidence to fight for it. I am being overseen by an Endo and purchase my own T3.

You may also like...