Regenerous test for d102

[jan61]

Could some one explain please how this test works. Can they send the information directly to me or does it have to go to my GP or someone else?

Thanks in advance xx

[McPammy]

You apply for the test on line through Regenerus Laboratories. You can chose either to have the result sent direct to your Dr who will let you know the result for £85. Or you can choose to have a paid professional call you with the result and then email the report to you. This option will cost £85 plus £65 for the result to be interpreted to you direct. This way only you will know the result unless you wish to inform your Dr of the result.

It takes about 3 weeks in all to apply, get the package, send it back then get the result.

I took the more expensive option. I have got the DIO2 gene by one parent. My GP and private Endocrinologist were both pleased when I handed the positive result to them. Not as pleased as myself though. Now I finally know what and why...that I need T3 and T4 and have been under medicated for nearly 12 years, as I was only on T4 and suffered throughout. T3 has brought me joy and wellbeing.

[jan61 in reply to McPammy]

Thank you Pam. That's made it really clear. Just thinking about raising funds now to do it. Even if they take no notice at least I will know why t4 has such a dreadful effect on me a d it's another thing backing me up xx

[McPammy in reply to jan61]

If you can afford it. It’ll be worth it. Not all poor converters have this gene. My sister is a poor converter too and she does not have this gene. This I was surprised at.

[jan61 in reply to McPammy]

Thanks Pam but how do you know if it's down to poor conversion if she doesn't have the gene? Just trying to wrap my head around this xx

[McPammy in reply to jan61]

Her T4 is over the range at 16 (7.86-14.4) her T3 is 4.4(3.7-6.0) and TSH 0.02 (0.35-5.56)

So, she needs less T4 and introduce T3. She had thyroid cancer so had to keep TSH suppressed.

I thought she’d have the DIO2 gene too but she hasn’t. Also her Cortisol is far too low. It was 100 at 9am (155-607). This normally is Addison’s automatically. She had a synacthen test same as me and she past. So, not Addisons like me. When I introduced T3 my cortisol shot up from 68 to 466. Which is brilliant. I needed T3 and I believe she does too.

[MaisieGray in reply to jan61]

jan61 We all have the gene, that isn't the question. The purpose of being tested is to discover whether we have one or other of the possible variants of the DIO2 gene known as single nucleotide polymorphisms aka SNPs. Proving positive for a SNP is not a diagnosis or even a guarantee that we are affected, nor to what extent.

[jan61 in reply to MaisieGray]

That's good to know. But also a little worrying that it carries no weight xx

[knitwitty in reply to McPammy]

I am still dithering about whether to get this test done, can I just ask do they just comment on the DIO2 gene and nothing else, i.e. they can't pick up other health problems ( I have enough to worry about without having another problem flagged up!).

If you have this done privately and don't involve your GP do you need to declare that you have had any genetic testing to insurance companies etc...?

[McPammy in reply to knitwitty]

You don’t have to declare anything if you don’t want to. It’s all private. They’ll only look at this one DIO2 gene. I took the more expensive option as I wanted the result myself first and then decide what to do once I had the result. I am positive and gave a copy to my gp and Endocrinologist which has been received well from both of them and now on NHS T3.

[knitwitty in reply to McPammy]

Thank you very much, I am self treating with T3 ( both GP and Endocrinologist know about this). I am just deliberating whether to get the test as I do feel much better taking T3 so I too would have some ammunition if I was positive for the DIO2 gene.

[RedApple Administrator]

Jan61,

According to the information on the TUK website, "Reports will be sent directly to your registered health practitoner or to you via our Counselling support network at the time of your follow up consultation. "

You can download the ordering information here thyroiduk.org/tuk/testing/D...

[jan61 in reply to RedApple]

Thank you red apple. Do you get it cheaper through thyroid UK? Xx

[RedApple Administrator in reply to jan61]

I'm not sure of the details, but I think buying through Thyroid UK means you don't have to pay an additional fee for a health practitioner (which I understand you would have to do if you purchased the tests directly from Regenerus). So that would make it work out cheaper all in.

Probably best to contact Thyroid UK directly to confirm this though. Email [e-mail]

[jan61 in reply to RedApple]

Brilliant. Thank you xx

[SlowDragon Administrator]

You can't use a standard GP .....They would be useless

so you either need to order direct and pay the extra for the counselling

Or order via a functional nutritionist ......likely more expensive

[jan61 in reply to SlowDragon]

Yes I think probably best to get it sent to me as my GP is lovely but hasn't got s clue about all this stuff xx

[helvella Administrator Thyroid UK]

For clarity, the gene that affects T4 to T3 conversion is called DIO2 - that is, three letters and a number. Not D102 - a letter and three numbers. Not DI02 - two letters and two numbers.

The name comes from the enzyme that this gene affects which is a deiodinase. It removes an iodine atom from a thyroid hormone molecule - it deiodinates it.

On this forum we probably understand, but if you wish to look it up anywhere, it might help to get it right. If you are discussing with a doctor, and get it wrong, you are providing an excuse for them to dismiss what you say.

(More strictly, two single-nucleotide polymorphisms (SNPs) on the DIO2 gene, rs225014 and rs225015.)

academic.oup.com/jcem/artic...

The Wiki article provides a basic introduction as to what a single-nucleotide polymorphism (SNP) is and why it can be important:

en.wikipedia.org/wiki/Singl...

[jan61 in reply to helvella]

Thank you Helvella.

Yes I totally agree it's important to get it right as I've had more than enough problems.

I've read through some of that paper you put the link to. Do you know if there are other papers to support T3 only? I tried all sorts of brands of t4 including NDT and T3 / T4 combined and all had the same effect like I was having the brakes slammed on. The only thing that helped was T3 only. Xx

[jan61]

Hi hunni. I've just had my results back from ancestry and I have DIO1, DIO2 and DIO3. At least this explains why I react the way I do to t4. Xx

[jan61]

Yes I think the more info the better xx