Deiodinase 2 enzyme test

[Geegee777]

Ive had my first appointment with nhs endo, she said to build a case for nhs to provide me with t3 medication, I would need to self fund a deiodinase 2 enzyme test, in order to prove I dont convert t4 to t3. My question is, which test is recommended as its quite expensive.

[TiggerMe Ambassador]

Hi, I did the Regenerus Labs DIO 2 regeneruslabs.com/products/... test and had them send the results to my GP who then gave me a copy (they won't send the results direct to you, though they are happy to charge you extra for a 'councillor' to read you the results!! All very Jeremy Kyle) and when I got to see the Endo it certainly helped and I was able to get a T3 prescription.

I actually went on to do the bluehorizonbloodtests.co.uk...

For myself and my daughter to see what else was wonky, this is more through and not that much more expensive if you want a fuller picture and they will send it straight to you 🤷‍♀️

They both take around 30 days

[Salphy in reply to TiggerMe]

Sorry to jump on, do you mind me asking if you got the same results on the dio2 from both tests/companies? I mean do they do the same test on the same gene and give you the same/similar information about it? Or would you still need the regenerus one as well as the blue horizon?

Also are they both cheek swabs? 🙂

My endo wanted me to have a blood test for his thyroid/dio2 research project but I'm not good with needles 🙈

[TiggerMe Ambassador in reply to Salphy]

Hi, I can't remember if the Regenerus test was a spit or swab but certainly no needles.

Regenerus was just DIO2 where as the BH checks the whole thyroid system and feedback loops so the only overlap is the DIO2 bit

I've posted up my results.... let me go rummage

[1239 in reply to TiggerMe]

Regenerus is a spit test.

[TiggerMe Ambassador in reply to Salphy]

Here we go... healthunlocked.com/thyroidu...

There's a bit of chit chat before they appear about half way down 😊

Regenerus is literally just a paragraph about DIO like the sample report shown on their site

[Salphy in reply to TiggerMe]

Thanks so much. So I could just do the BH one and get the info I need about dio2? Or does the regenerus one go more in depth? X

[TiggerMe Ambassador in reply to Salphy]

yep, other one covers pituitary and hypothalamus etc,. I found I have dodgy feedback loops too

[Indigourchin in reply to Salphy]

Hi sorry to hitch onto this question but wondering, if you do this tests are there things tp avoid in the run up , like with the Thyroid bloodtest and Vit B tablets etcetera. I realise this is a genetic test so presume it is different. Thanks

[TiggerMe Ambassador in reply to Indigourchin]

Hi, climb aboard... I seem to remember it was just a case of not having brushed teeth, eaten or drunk for an hour and maybe rinse your mouth 10 minutes before or something like that... nothing onerous

[Indigourchin in reply to TiggerMe]

Thanks so much!

[SlowDragon Administrator]

Regenerus is recognised as official genetic test

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

[TiggerMe Ambassador in reply to SlowDragon]

Regenerus seem to have changed their page and it doesn't give full details of the test just the sample report?

[SlowDragon Administrator in reply to TiggerMe]

Yes…..they seem to be in middle of website upgrade

No details listed

Link to Sample report is working

[RedApple Administrator in reply to TiggerMe]

Looks as if the Regenrous website may be undergoing a revamp which is only partially complete. I'd use the contact details here regeneruslabs.com/pages/con...

[Geegee777]

Thank you all for your replies, I will post results, plus thyroid panel in a new post. I have started on 3rd 5mcg dose of t3 and feel so much better after a few days, only niggly thing is timing them to fit in work/life balance, hey ho🌸🌸🌸🌸🌸

[TaraJR]

If you want to continue getting a test (which won't be cheap) follow advice from others here.

However, they have no right saying you should do this in order to have T3. There is nothing at all in any NHS guidance that mentions testing for this. I suspect it's another ploy to stop you getting T3, which they still seem to think is too expensive to consider. The price has reduced over 80% and should not now be considered a high cost treatment.

Which are are you in? Which ICB are you under?

[Geegee777 in reply to TaraJR]

Hi, I'm in Wales. My private endo requested whether gp would prescribe t3 as it was improving symptoms to which my gp declined, stating not able to do so, but referred me to nhs endo, which is ongoing.Pardon my ignorance, but what is icb?

[TaraJR in reply to Geegee777]

Ah, in Wales you have health boards I think?

In England, from 2012 we had CCGs, Clinical Commissioning Groups. They were changed to ICBs Integrated Care Boards in July 2022

Are you on Facebook? If so join us in ITT Improve Thyroid Treatment group. We have template letters detailing national guidance on T3. We did one for Wales. Not sure it's completely up to date, but it may be helpful.

I still don't think you should be recommended to pay for the genetic test

[Geegee777 in reply to TaraJR]

Thanks. You are right in saying I shouldn't have to pay for my test, but sometimes you have to go with the flow. Im going to follow Tattybogle's idea... Take the test for my own records, then should it prove I'm a bad converter, then show it to endo😎

[TaraJR in reply to Geegee777]

Absolutely.. it's completely your call. I did one out of interest a few years ago, though I don't know it helped. It was the actual local policy that was need to be clarified and in force, then drs weren't frightened to prescribe T3. That looks ridiculous in print, as drs should prescribe for clinical need without fear.

It's the fact that you were told to do it to 'prove you need T3' that worried/worries me

[Geegee777 in reply to TaraJR]

Yes, it is worrying, I work in care and know the delivery in care is changing.

[TiggerMe Ambassador in reply to TaraJR]

It is wrong on many levels but when you have proof in your hand it seems to stop them stalling and admit it is something that you need.

It was a wise investment I feel getting the DIO2 wonk registered, I went on to do the fuller test as I wanted to know what I had passed on to my daughter 😳thankfully slightly less wonky than me 😅

[TaraJR in reply to TiggerMe]

I know - we feel we need to keep providing evidence. I did. But it shouldn't be down to the patient to do that, or even worse pay a lot for it. It's iniquitous

[TiggerMe Ambassador in reply to TaraJR]

I think when you get to the bit where you feel you have early onset you are just grasping at straws to keep sane and prove your point without the exhausting confrontations 😕

[Summer64]

I had the Regenerus when it was on special offer. It was accpeted and I got my T3 back as it had been stopped by the then CCG and GP despite already having had it for several years and was initially prescribed by an endo.

[Geegee777 in reply to Summer64]

Im quite willing to purchase the test, as its been a long journey to get this far. I certainly don't want to go back to feeling rubbish. Im hoping treatment will improve for future thyroid cases.

Thanks to thyroid uk, couldnt have done it without the support of you lovely people🙏🌸🙏🌸🙏🌸

[tattybogle in reply to Geegee777]

The only problem with getting a Dio2 test is ~what if it doesn't show any issue's .. would they use that as more 'evidence' to say no to the NHS trial of T3?

Tell endo you just can't afford it ... then do it for yourself without them seeing the results .. and only show them if it's positive and supports you request for T3.

[Geegee777 in reply to tattybogle]

What a marvellous idea, thankyou. Sometimes you do have to play them at their own game🤔🤔

[TiggerMe Ambassador in reply to tattybogle]

Problem with this is that they won't issue the results unless you pay the extra for the consultation! Or have it sent to a Medic, which is ridiculous..... but GP's haven't a clue what the test is all about so are happy to print it out and send it to you but then it's on your records like it or not 🙄

[tattybogle in reply to TiggerMe]

i thought ? it was possible to put down 'ThyroidUk' as your practitioner.. and get them sent there ?? or was that for some other test... ? im not sure...... admin will know .

[TiggerMe Ambassador in reply to tattybogle]

I think some have managed to do that but I tried it and it didn't work, they were adamant they had to follow some European rules even though we aren't in Europe? I had a bit of a battle with them as they accepted it with Thyroid UK named as practitioner but in the end they would only email it to the GP or charge me extra for one of their consultants to read it to me!... when the email couldn't be found by the practice twice🙄 they posted it to them..... usual bloomin drama

That's another thing in favour of Blue Horizons they just email it direct to you and you can do as you like with the info

[Smorzando in reply to TiggerMe]

I put my husband's email address as the "practitioner". He's a "Dr" (academic, not medical!) but they made no checks whatsoever and i would see no reason not to just give them a friend's contact details (or use a spare email address of your own). Perhaps I'm wrong to suggest it but it worked for me and it kept it all private, if you see what I mean - "fortunately" I had the DIO2 mutation but if I hadn't - I could see that being used against me to say I didn't need T3.

Hope this makes sense!

EDIT on reflection perhaps him having a university email address (ending .ac.uk) helped. (This was with Regenerus)

[TiggerMe Ambassador in reply to Smorzando]

Great heads up, that was the odd thing that they argued the toss?

Yes maybe a random email address is all it takes

EDIT on reflection perhaps him having a university email address (ending .ac.uk) helped. (This was with Regenerus)

Last edited by Smorzando

 tattybogle did you see Smorzando a random email works

[Smorzando in reply to TiggerMe]

I'm surprised too. This was a couple of years ago mind you, perhaps their policies have changed?

[TiggerMe Ambassador in reply to Smorzando]

Maybe it just has to differ from the original email address? Someone had suggested putting Thyroid UK in the practitioners box but I didn't put another email address, they rang to ask where to send the results, so that is probably where I fell down....... honestly along with everything else that goes with this stupid condition you have to out wit the stupid systems as well 😩

[TiggerMe Ambassador in reply to Smorzando]

Ah perhaps, maybe you could loan his email out? 🤣🤗

[Smorzando in reply to TiggerMe]

😜💡

[DandyThyro]

I did the Blue Horizons test because it looks at several genetic factors that influence t4-t3 conversion. It also explains it all, though I found the explanations difficult to take it. I did it for myself, to confirm that I do need to take T3.

[TiggerMe Ambassador]

Blue Horizons covers

COMT - Inactivation of Stress Hormones & Oestrogen

DIO1 - Thyroid Hormone Activation

DIO2 - " " "

FKBP5 - Cortisol Regulation

PDE8B - TSH signalling

TNF-a - Inflammation

TSHR - Thyroid Stimulation Hormone (TSH) Receptor

TRHR - Thyrotropin Releasing Hormone (TRH) Receptor

So a better oversight of the whole system

[samaja]

Why only DIO2? Both DIO1 and 2 should be tested because both are involved in t4 to t3 conversion though DIO2 is more of a 'suspect'. I know for an 'official' proof you would need a lab result but the easiest way for all this testing is to have your raw data from Ancestry UK and just look for the polymorfisms yourself.

[1239 in reply to samaja]

I found the ancestry one after I did the Regenerus for myself. Used it for both my kids and ancestry showed 1 has a Dio1 & 2 problem and the other 'just' Dio1. Just need to keep an eye out for any problems manifesting although 1 child is already under an endo for a different problem and when the endo was told he didn't know about Dio1 & 2!

[samaja in reply to 1239]

Not many of them do and that's the problem. They would rather pump you up with levothyroxine or nothing while what you might need most is T3 and what they need is education!

[Fluffysheep]

For anyone who has done the Blue Horizon test - did they send you anything to confirm they'd received your test?

I posted 4 weeks ago last Monday, so they should have received it Tuesday or Wednesday. Had nothing at all yet, but noted it says 30 days, plus 3 days for Drs comments on it, so haven't quite got there yet.

Just wondering if I should chase next week?

[Wua13262348 in reply to Fluffysheep]

I did Blue Horizon and at that time they advertised that it took about 6 weeks. It took 6 weeks to get the result, which was what was stated at the time.

[Fluffysheep in reply to Wua13262348]

Thanks, I'll be patient for a bit longer then!

[Wickety]

Hi, I got the Dio2 test via Regenerus. My GP and an Endo refused to concede that a CC result confirmed a thyroid problem. First excuse was - it's not an NHS lab test ( because NHS will not do this test), second was - this is a new area of research ( been available since 2009 I understand), third was - even with this result it doesn't mean you have a problem! I sincerely hope your Endo treats you properly.

[Geegee777 in reply to Wickety]

Im quite prepared to go it alone, with occasional endo visits, just to monitor bloods. Ive lost trust in the system, ill see how it goes. Im just so thankful to thyroid uk 🌸🌸🌸🌸🌸🌸

[Gillybean1]

Hi Geegee777,

Are you absolutely sure your Endo cant arrange the test for you? My NHS Endo told me after i raised the DIO2 possibility,that he could arrange the test for me , ie thats his job if he had a concern in that area. Unfortunately for me I did not expect him to say that and one was already paid for by me and in the post. So NHS Endo's can arrange this 'if' they think there is an issue here.

I did Regenerous and it was positive. My Endo puts this DIO2 + at the top of my file data, before Hashimotos.

It helped me for prescriptions of T3. Should you be positive with your test, rest assured very few GP's know of it and you have to explain continually.

Every best wish , G

[Geegee777 in reply to Gillybean1]

Hi, I didnt refuse to pay for the test and didnt question my nhs endo either. However, ill get the test and do it for my own records, if positive, ill mention it to endo, if negative ill keep it to myself.