D102 test

[misslissa]

Hi, I'm about to order this test through a link on thyroiduk but there are 3 types, I assumed it's the thyroid one but I think it's the 'genetics' one from what I'm reading. Anyone know??

[misslissa]

Also, how do the results work? If they are sent to GP do I not get a copy? Why do I need the counselling, will I be able to interpret result myself or would it just go to GP? Sorry, I'm confused!

[radd in reply to misslissa]

misslissa,

The counselling is compulsory unless you have a practitioner who will be able to interpret the test results for you.

I used my nutritionist but if you don't have one, you will have to pay £120.00 and receive the counselling to get the results. The results are sent direct to your email address at the time of counselling.

Most GP's won't know what this test is about or recognise the implications of having an impaired DIO2 gene.

[helvella Administrator Thyroid UK]

The gene that is tested is actually DIO2 (three letters and a number).

Odd that Regenerus themselves have typed DI02 (two letters and two numbers)!

This is important if anyone tries to find out more information by any form of search.

I think that the apparent three tests are just the one test - but it appears in three lists of tests. That is, it is on the list of Thyroid tests, and Hormones tests and Genetics tests. Not the slightest idea why they allow you to click on a "radio button" to select one or another.

[misslissa in reply to helvella]

So would you click the thyroid one?? It's logical I guess?

[misslissa in reply to helvella]

Do I need the counselling, is that just to tell you the result? If I'm doing the test I need to understand the result?

[LtAngua52 in reply to misslissa]

I don't think they allow anyone to have the test without the counselling. It's generally to talk through how you feel about the consequences of having the test, are you prepared for a positive result and understand what it means. I've been thinking of getting this done myself. Do let us know how you get on.

[Tenerife77]

I had this test done and paid for the counselling too. It is something that you would need to do as the adviser explains the results and it gives you an opportunity to ask any questions. Mine came back that I have the faulty gene which can be an indicator that you can find it difficult to convert T4 to T3 so when seeing the Endo I provided these tests results in hope that he would give me T3. He basically said that my body was converting T4 to T3 and would not discuss the test at all. Frustrating

[TupennyRush]

I had the test and came back positive (heterozygous ie 1 of the 2 pairs is the snp). They won't let you have the test results without the counselling. I have to admit I didn't find the counselling particularly useful but I'd expected a positive as thyroid issues (non Hashimotos) run in the family and so I thought that there probably was a genetic component.

I used the test results and the paper on those of us with the gene snp doing better with t3 in the mix to get an ndt prescription from a private endo. My gp insisted on this being signed off by an NHS endo; the first one I saw dismisses the gene snp completely and gave me a whole lecture on why I shouldn't take ndt (it's dirty snake oil and is unregulated and isn't consistent in her opinion; I challenged this) but she did sign it off because my private endo is a Prof who is well respected in the field and teaches....

They made me go back for a further NHS appointment and I got a different endo; she was fascinated by the di02 paper, interested that I felt so much better on ndt and said that she would go off and do more research. She had been to lectures given by my Prof and also worked with him (different hospital but geographically close in London) so patients saw both of them and they would consult. She was more open to ndt but said she was not allowed to prescribe it in the NHS (as did the Prof).

I feel so much better on ndt. I had thought that the levo had gotten rid of my brain fog but taking ndt suddenly made me realise that my thinking had been through cotton wool. I felt like I gained 20 iq points virtually overnight. It also mopped up my remaining symptoms....

My advice to anyone with hypo thyroid would be to take the di02 test if you can afford it just so you know whether you would be better with some t3 in the mix whether that's from t3 or ndt. Plus if you get a half decent endo and take in the paper showing that those of us with the snp do better with t3 in the mix you can then get the meds that will be better for you.

Personally I'd like to run a survey like the one thyroid UK did last year to see of the circa 15 per cent of us that don't do well on just t4 how many have been tested for di02 and of those how many had it because that way we could get an estimate of the likely percentages of people that need t3 from other causes. Although this would rely on having some people that need t3 that haven't tested positive for the gene snp..

Good luck

[Musicmonkey in reply to TupennyRush]

TupennyRush I like the idea of a group who have been identified with the DIO2 gene as we could usefully share info and experience which is unique to us - strength in numbers?

My Endo was singularly unimpressed with my DIO2 diagnosis, but with my own research into my own health and results self-medicating makes a lot of sense to me!

[marigold22 in reply to Musicmonkey]

It's so disgusting that Endo's are incapable of recognising a faulty gene. They take their massive salary but can't keep up to speed !

[TupennyRush in reply to Musicmonkey]

I hadn't thought of a di02 club and wonder how many participants we might have....

I was thinking of a simple survey; but I'm game if there's more takers (just Musicmonkey and me might not quite constitute a club

Separate post? What do u think Music?

[Musicmonkey in reply to TupennyRush]

TupennyRush Yes I'm all for it, just too busy to organise myself sadly There are quite a few people on here and I assume, a growing number all the time. A separate post would certainly be a good start

[loueldhen]

I did a 23andme test - no counselling charge etc but you have to interpret your own results or get someone else to. £125 for all your genes!

[helvella Administrator Thyroid UK in reply to loueldhen]

23andme only does a partial analysis of a selection of SNPs - not the full genome. It did include DIO2 when I had mine done.

[Jefner in reply to helvella]

Was thinking of having that test done but not sure what it might tell me that i dont already know. If i had the dio2 gene and being on t3 now anyway, what else could it tell me?

[loueldhen in reply to Jefner]

Nothing! None of these tests provide conclusive answers. Confirmation of why you need to be on T3?

[Jefner in reply to loueldhen]

what if I had the test done and I don't have the gene?

[loueldhen in reply to Jefner]

I would guess chances are you will. I did. Haven't used the info for anything particular. Just thought I'd have it done before the medical profession decided to stop us getting access to information about ourselves. I stopped t4 completely before starting t3.

[marigold22 in reply to Jefner]

I'm definitely going to have the DIO2 test done to know for sure if I have the faulty gene. I've been on T3 only for 20 years but want to have as much ammunition as possible to keep my T3 and not be changed back onto T4. I'm sure I have the faulty gene but realise that even that piece of paper confirming it, may not be enough to keep my T3 prescription if docs/CCG decide to stop it.

[Jefner in reply to loueldhen]

How long did it take for results to come through?

[loueldhen in reply to Jefner]

About 3 weeks from 23andme.

[misslissa]

Hi, thank you for all the replies. I hadn't seen them as the notifications went to my junk mail :/

I've ordered it, I just want to have the full picture.

[OzoneGirl in reply to misslissa]

Hi again misslissa!

Did you have the 23andme test or the ThyroidUK DIO2 test?

And if you had the 23andme - did it include the DIO2?

Have you had your results back yet?

[misslissa in reply to OzoneGirl]

I had it through Regenerus, had my results and I do have the mutation (or however you describe it!). From what I've gathered there are three levels, first is you don't have it, second you have inherited from one parent and third from both parents. I have it from one.

[kimbo65]

I would be interested in seeing just how many of us have the faulty gene .. Me personally had it done 6 years ago when it first came out by a private doctor I have the double faulty gene