DIO2, 23andme - or not bother?: OK, so I already... - Thyroid UK

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DIO2, 23andme - or not bother?

Ruthi profile image
13 Replies

OK, so I already know that I don't convert T4 to T3 very well, or at all. I take NDT only after initially having horrible side effects from T3. I feel OK, but am still always tired, even though my free T3 is at the top of the range or even above. And losing weight is a struggle! I'd be up for trying T3 again, with a view to going T3 only. My original experience was 15 years ago. I have never had reverse T3 tested.

My question is a) what would I gain from knowing if I have the D102 gene mutation?

b)what does the counselling consist of, and what do you learn other than the result of the test?

b)would I gain more or less useful knowledge from the 23andme test? The price is the same, if you include the cost of counselling.

I am past childbearing age, but I guess it would be useful to my children and grandchildren to know if I may have passed something nasty on to them. Like most parents I already feel I haven't done a good enough job, so I don't think I'd melt down if I knew there were genetic problems!

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Ruthi profile image
Ruthi
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helvella profile image
helvellaAdministratorThyroid UK

The gene is DIO2 - that is, three letters and a number - not D102 (a letter and three numbers). That might be very important when you seek information about it or talk with someone such as a doctor.

The 23andme testing is far more comprehensive but is also very much harder work to understand. I found it very interesting from the "where did I come from?" direction.

Ruthi profile image
Ruthi in reply to helvella

Ah! Thank you for that! I've altered the heading.

No wonder I didn't find much when I ran a search for D102!! Now I've searched for the right thing, I have found some other interesting stuff. Not a lot of doubt that it'll show up a DIO2 mutation of some sort.

So now I have to decide whether its worth testing(more for the sake of the offspring, but then they could test for themselves), and whether its worth trying T3. Lots more reading needed, I think!

I know where I come from, says she sweepingly. I am an Ashkenazi Jew, look totally typical (and almost identical to my mother and grandmother), and my lot were probably fairly inbred in the ghettos for quite a while.

Trixie64 profile image
Trixie64

I tested at 23andme, mainly because I have a very enquiring mind and want to know the why and wherefore of my illness. I know now that I do have a variant DIO2 gene as well as variants of other genes which are involved in the methylation pathway. I'm still trying to get to grips with understanding it all, but I'd rather have the information than be in the dark.

MrsJim profile image
MrsJim in reply to Trixie64

Hi there,

I got a 23 & me test last year and looked at the raw data but in truth I'm struggling to understand where a 'faulty' gene exists from the key provided.

Could you help me to know what your DIO2 looks like on the website?

Many thanks

Mel

helvella profile image
helvellaAdministratorThyroid UK in reply to MrsJim

Login to 23andme and try this link:

23andme.com/you/explorer/ge...

For me, I see five SNPs on that page.

You can then see what version you have and search the web or one of the specialist SNP sites to find out the effect it is supposed to have.

The precise cocktail of SNPs varies over time as the testing kit changes.

Trixie64 profile image
Trixie64 in reply to MrsJim

MrsJim,

I uploaded my raw data to the GBHealthwatch site for analysis, which showed I have the homozygous variant for SNP rs225013 on the DIO2 gene.

MrsJim profile image
MrsJim in reply to Trixie64

Trixie64 thanks so much for the info and the company too, I'll look them up. Could I ask what your variant looked like? As in mine says rs225013 G/T so it's a bit of both GG and TT, but I haven't figured out what the versions are in terms of the genotype. I'm struggling to understand if the GG is a version with potential to become 'graves' etc... Or if TT or any of the other codes/keys used are the wonky genotype sod that makes sense?

Do you remember what your genotype for rs225013 is?

Thanks so much for this.

Mel

Trixie64 profile image
Trixie64 in reply to MrsJim

MrsJim,

My rs225013 is homozygous TT which is the risk allele. GBhealthwatch doesn't mention any of the other SNPs on the DIO2 gene, but I have risk alleles on other genes which predispose to Hypothyroidism.

I also put my 23andme results through the Nutrahacker site, which is also free; that gives info on the genes involved in the methylation pathway. There are other sites -Promethease and Livewello, which are not free. I've also come across codegen.eu which I think is free, but I haven't got round to that yet. The discussion forum on 23andme is useful for finding out these sites.

All the best.

Trixie

MrsJim profile image
MrsJim in reply to Trixie64

Trixie64 thank you so so much. I'm off to see my GP in twenty minutes and plan to bamboozle him with stuff so he reconsiders prescribing to me at his discretion for hyperthyroid issues or sends me for cortisol testing.

Thank you so so much.xx

Musicmonkey profile image
Musicmonkey

I got the test done recently with Regenerus Labs (see Thyroid UK for the details). The first counsellor was not at all useful - I felt just plugging his own functional medicine business.

The second was more helpful, but I think only confirmed what you already seem to know Ruthi.

When I took the information to the Endo last week, he barely acknowledged the results of the test, though fortunately is experienced in thyroid issues, so has talked to me about a trial of T3/T4.

I wonder if I wasted my money as I don't think my consultation would have been very different without the diagnosis. It gave me more confidence though and helps me explain to other people why I struggle to lose weight despite a good diet and plenty of exercise.

Ruthi profile image
Ruthi

It does seem quite likely that I have an issue with that gene, and possibly others of course. I'm trying to decide whether its really all that beneficial to do the test - and maybe it is not.

So the counselling isn't worth that much - and I would probably go the whole hog and have the 23 and me test instead. I too have an enquiring mind, but I can only spend my money once, and I can do quite a lot of learning for £125! Its a bit of an indulgence in my case, I suspect.

I think I might talk to my son about this. In a way the test is likely to be more of benefit to him and his, but maybe we should just go the whole hog and get them tested? He is very much into evidence based medicine, and a bit of a hypochondriac. But also one of his daughters has spina bifida (no gene identified yet as far as I know) and other health problems too. It might well be worth testing her, and quite possibly all of them.

Numberone1 profile image
Numberone1 in reply to Ruthi

I have recently done the 23andme test but haven't had results yet. I didn't do it for this D102 information but does it show up on there?

Ruthi profile image
Ruthi

I believe so. You have to run the results through one of the analysers, but it should show up. Not done it myself yet.

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