Regenerus DIO2 test: So was looking at doing... - Thyroid UK

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Regenerus DIO2 test

Polo22 profile image
31 Replies

So was looking at doing this, just wondered how, says it will not supply results to general public, need a practitioner. Also are there any discount codes, Do others do this type of gene testing

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Polo22 profile image
Polo22
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31 Replies
rubyred profile image
rubyred

Hi, I had this test done with this team. You need to also select to have the specialist to give you the results. Also do not put your GP details in the box where is asks for drs name.

I made the mistake of adding my GP retails. My results then went to the GP. They had no idea what it was and just filed it.

If you call them up they are super helpful and can advise on any specific areas of the form.

good luck 😊

radd profile image
radd

Polo22,

Regenurus do this test here through ThyroidUK ......... regeneruslabs.com/products/... .... and you can use Melissa Cohen as your practitioner. Results will go direct to Thyroid UK and you just fill out a test form to obtain them. You do not have to pay any money to obtain your results.

Equally there are other companies performing this test now that might be cheaper. Just use Google 😉. They are also not all signed up to the European Genetic Code of Conduct so will send results direct to you.

Some members have this test to strengthen their case for a T3 prescription but the success is usually a postcode lottery of which CCG you come under. It is also useful to know of this impairment, but it is common and I suspect most forum members have it or similar in some degree and why they are here.

Edit - Just remembered I thought this was a good test by Blue Horizon as measures DI02 and other traits affecting thyroid hormones and function .... bluehorizonbloodtests.co.uk... . They have offers on atm. When I did mine if was half price introductory offer and I seem to remember an extra 10% off using the Thyroid UK code but can't be sure. Just try them ... thyroiduk.org/help-and-supp...

Polo22 profile image
Polo22 in reply toradd

just ordered tests, the offer at moment is can have some addon genetic test that normally costs £81 for free when ordering the thyroid genetic traits test , will start saving for the other tests👍🤫

Sneedle profile image
Sneedle in reply toradd

Hi Radd,Re the genetic test you had with Blue Horizon, could I ask how you've found it helpful for your understanding and self-treatment?

I'm wondering about the DIO2 issue for myself and have had some genetic testing (general, not thyroid), some of which has been helpful and some of which has confused me more!

If, like SlowDragon, I could use it to persuade a doctor/specialist to prescribe t3, that would be awesome. I'm still moving up the t4 levo doses at the moment so I'm not there yet, but Polo22's post has got me thinking...It's expensive, will it help?

Any thoughts welcome!

Polo22 profile image
Polo22 in reply toSneedle

I am always getting into trouble spending 👍

Sneedle profile image
Sneedle in reply toPolo22

😅

radd profile image
radd in reply toPolo22

Polo22,

Me too, especially as not working much at the moment.

The difference is most are extravagant with meals out/holidays/cars/a new frock but we get excited with a new bottle of methylated B vits or genetic testing that confirms we are wonky 🤣👏🤪

Sneedle profile image
Sneedle in reply toradd

Long gone the days of the new frock...but a blood test...now that's something. I'm waiting on an individual BH B12 test right now and the excitement is extreme😄

And Regenerus Saliva Cortisol still to come!

radd profile image
radd in reply toSneedle

🤣

radd profile image
radd in reply toSneedle

Sneedle,

It was pure curiosity and the results were kinda expected. They’re also similar to other forum members and evidence why we have such troubles tolerating T4-only meds.

Regarding getting medics attention, I would say it likely be completely useless but I didn’t do it for that as buy my own meds anyway.

I love where I live but unfortunately it’s an area of none prescribed T3 and my DI02 result was laughed out of the room, after having had my T3 prescribed by NHS for roughly a year at a time and withdrawn twice!

I will never again allow them to let me down so badly at a time I was at my most vulnerable mentally and physically. We are respectable members of society who wish to contribute responsibility but if I was a voodoo person I would stick pins in them all, train to be a pharmacist and give T3 out free to those who needed it to retain wellbeing 😁.

All genetic testing is expensive and this BH is good value but only if you want all these genes tested. If you only want DI02, there are cheaper options.

Sneedle profile image
Sneedle in reply toradd

😂😂 The T3 Voodoo Pharmacist! Your sense of humour has survived the medics intact!

Oh blimey, the dunderheads with your DIO2 result....no wonder you chose to go your own way 💪💪.

I really wish genetic testing could clearly provide an answer, perhaps for some it does...I need to know not only the SNPs I have, but how they affect me functionally. Thanks for your reply☺️

radd profile image
radd in reply toSneedle

Sneedle,

And there lies the problem.

Having a SNP is not a guarantee that you won't work properly but an indication of the probabilities that you won't work properly. The body is clever with compromise to ensure we function best we can and so theoretically there could be millions who have the DI02 genetic mutation. but live well blissfully totally unaware of their impairment.

McPammy profile image
McPammy

when I did mine I put Thyroid UK as general practitioner. I got a call the interpret my result which was positive. For me it was the best money I’ve spent as I now fully understand why I convert so poorly.

SlowDragon profile image
SlowDragonAdministrator

I used Regenerus and also tested positive. (Heterozygous)

My results helped persuade NHS to prescribe T3

Onlymeandyou profile image
Onlymeandyou

Am I right in thinking that if you don’t have a thyroid you won’t convert anyway? Or is the DlO2 completely different whether or not you have a thyroid?

Polo22 profile image
Polo22 in reply toOnlymeandyou

I have been pondering this, but think the converting should happen at cellular level, not fully clear on this, but you and I obviously have at least the basic , more likely a reasonable level of understanding more so than my GP. A discussion with him was getting to the "free and frank" level because he couldn't get the premiss that maybe not having a Thyroid might mean TSH was less relevant. It would be comical if it wasn't so ridiculous

Andie222 profile image
Andie222

Hello Polo22. I tried to put ThyroidUK as my practitioner, but was told ThyroidUK no longer offer this service . In the end I put my GP. When I knew the results were available I rang the GP surgery and asked the receptionist to forward results to me. I then used Google to find a way of interpreting them myself.

FAB-jellybean profile image
FAB-jellybean

I used Blue Horizon to get all thyroid genes including DIO2 and had no issues with getting results. They have a 30% off code with Thyroid UK.

arTistapple profile image
arTistapple

I have thought about doing this test on and off for a while. I know it will not work in this area to get me T3 prescribed on the NHS (Tyne and Wear), so for me I think it’s a waste of time and money. I have been watching my blood tests and posting them here. My conversion is naff for whatever reason and knowing my ancestors all come from the highest levels of hypothyroidism (Scottish Highlanders and Irish) in the UK, the likelihood of genetic inheritance is extremely high. At the moment I see no benefit of ‘knowing’ my genetic status. However should I have other questions, I might do it later.

Polo22 profile image
Polo22 in reply toarTistapple

I fully get where your coming from, doubt it will get me anywhere with my GP but there are some practice groups here(Liverpool) that do prescribe, how likely I could swap is questionable . My ancestry is mostly Irish, little bit Nordic ?Viking. There is a high % of Liverpool people who are Irish, once in a very heated argument (I was winning ) a girl with beautiful red hair lost it completely and screamed that I was " a f***ing spud muncher" I couldn't breath for laughing,, 🤣🤭

arTistapple profile image
arTistapple in reply toPolo22

I was just checking the online pharmacy Roseway. I don’t know if it will work for me because my private endo has refused to treat me. However, with the support of the forum I have recently attempted T3 again. Fingers crossed. I use eighths of a 20mcg Thybon Henning. My one prescription will therefore last quite a while. This originally came from Roseway with my private endo the prescriber. Roseway do their own prescribing and a bit nearer the time I need a new prescription I am going to ask them to prescribe. It’s pretty reasonable cost, (much cheaper than a private endo) even including prescription appointment. If not I will have to contact another endo privately. So annoying when they are almost as useless as GPs - unless you are lucky!

Polo22 profile image
Polo22 in reply toarTistapple

There are lots of routes for sourcing T3, so always options. As long as your feeling the benefit and not bankrupting yourself that's all that matters

McPammy profile image
McPammy in reply toPolo22

Have you tried Halton ( near Runcorn) hospital. I get me T3 from Halton when other hospitals near me (Chester) refused.

Polo22 profile image
Polo22 in reply toMcPammy

I have my supply sorted, for quite a while anyway, 👍

Polo22 profile image
Polo22 in reply toMcPammy

I don't have a prescription so wouldn't be able to get it there 😢

McPammy profile image
McPammy in reply toPolo22

I just thought you could change hospitals and change to Halton endocrinologist. Then be able to obtain liothyronine freely. I also did the DIO2 gene test which was positive.

Polo22 profile image
Polo22 in reply toMcPammy

I can't get my GP to refer me to an Endocrinologist, asked several times he keeps refusing. I'll try to remember this though if by some miracle he eventually agrees.

Smorzando profile image
Smorzando

I used Regenerus for the DIO2 gene test and put my husband's name and email down for the practitioner - it may have helped that he works for a university, and has an email address ending in "ac.uk" but i can't be sure. I rather doubt they would take the time to check!

Noona123 profile image
Noona123

I did the Blue Horizons Test which included DIO2 gene test and other thyroid related traits. There was some offer on Blue Horizons at the time. you can see my results in post I wrote if you look on my profile (to give you an idea of what they test). I am waiting for an Endo appointment to 'make my case' for getting T3 on the NHS. I currently take 25mcg T3 (self sourced) and 100 mug T4 (Levo).

Starseed56 profile image
Starseed56 in reply toNoona123

hi Noona123 have you now had your endo appointment? If so did you win? I’m waiting for an nhs endo appointment and have just done the blue Horizon gene test (for my own knowledge really but it may help with meds too)

Noona123 profile image
Noona123 in reply toStarseed56

Hi Starseed56. My Endo is considering my case. My TSH is suppressed so she said if I could get that up then she might prescribe. She wasn't interested in my Horizons gene test. She's also sent me for a test to rule out Addisons disease as I have had low morning cortisol results. . I'll post when I know more.

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