Links to DIO2 information please

[NWA6]

I’ve had the test, I have a mutation but my Endocrinologist is referring me to a geneticist (who’s speciality is primarily prenatal diagnosis, so just how this is going to go is anyone’s guess)

My Endocrinologist is passing me off because ‘his department doesn’t offer combination therapy’ his excuse to pass me along to another dept is that the evidence is not clear and he wants to be sure that the DIO2 test ‘ is a validated test which can be relied on’

So! I know there are some very educated people in this forum 😀 Do you have any links that I could email him? (he also wants to gauge my understanding of the test)

I also want them in order to keep my GP’s informed and my MP. We’ve got to spread the word!

Many thanks 🙏🏻

[jimh111]

This is the original study academic.oup.com/jcem/artic... . If he doesn't understand this and presumably is not aware of the study then what is he doing in an endocrinology department. The referral to a geneticist is a waste of time and resources, they are treating the geneticist as if they were a servant. A brief glance at your previous post indicates this person is not an endocrinologist, maybe you should insist on seeing the 'consultant'. It looks like a junior doctor is having to do the dirty work.

[NWA6 in reply to jimh111]

Yes you’re right jimh111 he’s a registrar. He says he has talked things through with the Consultant and ‘they’ advised that sending me to a geneticist is the next step. It’s safe to assume that they don’t want to take the financial hit of trialing me on T3 (I’m not worried about that atm as I’m seeing a private Endo tomorrow) but I am a bit of a fighter so I now want to challenge what they’re saying, not least because I eventually want my T3 through the NHS but for everyone else who suffers. Atm I’m self centred, I have to become well but when I am I want to help in challenging the treatment that Thyroid patients receive.

[MaisieGray in reply to NWA6]

There is no "financial hit" to the Consultant/secondary outpatients' clinic - when a patient is treated in an outpatients clinic, the cost is charged to the referring GP/CCG budget.

As the NHS puts it: "where a patient is registered on the list of NHS patients of a GP practice, the responsible commissioner will be the CCG of which the GP practice is a member".

[NWA6 in reply to MaisieGray]

That’s interesting, so it comes out of my surgery’s budget not the hospital dept?

[MaisieGray in reply to NWA6]

It is the CCG who is commissioning the service, the GP is only making the referral. So the rule is "Patients have a legal right to choose any hospital that meets NHS standards and cost when they are referred for a consultant-led outpatient appointment. The CCG responsible for payment should be established in the usual manner, using paragraph 1. (quoted above) Where there is no contract in place, providers should charge the relevant CCG via non-contract activity billing arrangements." So it is the budget of the commissioning CCG that meets the cost. But whether it is vired over as a charge against the individual GP budget, for accounting purposes, I can't remember TBH, although I suspect it would be, otherwise there would be no control over individual practise spending - but I can't immediately lay my hands on any documentation to support or disprove my thinking about that.

[Gcart in reply to jimh111]

Sorry to jump in here but would you help me jimh111 if possible.

I have PDEBB TSH signalling , TSHR ,TRHR and COMT from both parents .

Is there a paper like the one for Dio2 that you know of.

Thanks if you can

[jimh111 in reply to Gcart]

I'm not familiar with these genes. The company that supplies the tests should give you full counselling and explain the actual consequences for you and your family.

[Gcart in reply to jimh111]

Thanks for that, Angel of the north gave me a fair summary a while ago. I should have paid for the counselling , just a bit too much at that time and I thought I would be able to decipher myself 🤓

🤔

[shaws]

This is from TUK:-

thyroiduk.org.uk/tuk/testin...

It is disgraceful that these Endocrinologists seem to never read up-to-date Research and quite a number of Researchers have found that combination works for many who cannot on levo alone. The pity is that the medical profession (GPs or Endos) have been told not to prescribe T3 (due to exorbitant price by Pharma companies). There's a Petition in the House of Lords who also agreed that we should have options if necessary. I shall give you a few links which might be of interest:-

eje.bioscientifica.com/view...

healthunlocked.com/thyroidu....

healthunlocked.com/thyroidu....

[NWA6 in reply to shaws]

Thank you Shaws. He referenced ThyriodUk and said he’d researched Regenerus aswell. This is a classic fob off!

[shaws in reply to NWA6]

As the saying goes - the truth will come out.