Oral Questions by Lord Hunt and Lord Borwick and others

[lynmynott]

Lord Hunt and Lord Borwick asked pertinent questions in the House of Lords on Wednesday 6th July 2022, with further questions from Baroness Wheeler, Lord McFall, Baroness Brinton and Baroness Masham.

We are very pleased that the Minister, Lord Kamall, answered these questions clearly and decisively. Lord Kamall has previously had an understanding of the issue from meetings with him and thyroid charities and organisations as well as reading various reports including the latest 2022 T3 Prescribing Report which showed that 58% of CCGs were not abiding by national guidance.

You can read the Hansard Transcript of the questions and answers here:

tinyurl.com/2sznnmhs

If you have had your T3 withdrawn or refused, it might help to show this transcript to your clinician or Clinical Commissioning Group or Integrated Care Board and push your right to have it reinstated or to have a trial.

[tattybogle]

Watched it live ...

hope you had an ..erm... 'interesting' day in london, lyn ....

[lynmynott Partner Thyroid UK in reply to tattybogle]

Yes, it was interesting! We sat up in the gallery. Lots of stairs! I was very tired yesterday but feeling better today...

[PrincessAnnie]

It’s all very well fighting for people who need it to be prescribed it but what about those that won’t even have a clue that they need it as they’re constantly being told”you’re in range”so there’s nothing wrong with you!Absolutely boils my blood the way thyroid issues are just dismissed if you’re showing “in range”yet still complaining of symptoms!

[shaws in reply to PrincessAnnie]

You're right as many people who have hypothyroidism might not have a connection to the internet and have always relied upon the GP or Endo (If they've ever had a consultation) to restore their health.

[DippyDame in reply to PrincessAnnie]

Totally agree!And....they can issue as many guidelines as they like about T3 but nothing will change until endos are knowledgeable enough and willing enough to prescribe therapeutic doses to patients who need that to function/survive.

Some of us here need high dose T3 to function but don't have a snowballs chance in h*** of being treated on the NHS.

So, we self medicate with the challenges of finding reliable supplies that that brings, and the concern that if we are hospitalised or go into care we will not be correctly medicated

Ah!....But we will be old and on our way out anyway I guess!

I would very likely be dead now had I not spent a huge amount of time reading and learning about T3 ,how it works and how to self medicate......and initially through heavy brain fog.

It was that, or a bedridden future....like my grandmother!

How many people are living (and dying) behind closed doors because they are not being correctly treated.

It beggars belief!

Lorraine Cleaver ( in Scotland) worked for years to try to change T3 treatment eventually it was decreed that patients who show a clinical need for T3 should have it prescribed.....at the discretion of an endocrinologist.

Well we know how that pans out!!

Lorraine was so disgusted at the outcome of years of excellent campaigning that the frustration in her final words on the petition website are unprintable here...and heartbreaking!

Fixing this mess lies with the decision makers at the top of the medical tree .....they hold the key to unlock this impasse. But, they don't seem interested in listening to fine words.....or solid scientific evidence.

I'm with you PrincessAnnie this whole mess makes my blood boil....and I'm getting far too old now to cope with boiling blood!!!!!!

[PrincessAnnie in reply to DippyDame]

I only wish I could do something about it🤬🤬

[DippyDame in reply to PrincessAnnie]

Don't we all!

[PrincessAnnie in reply to DippyDame]

I’m going to email the first minister again,I got an email back the last time basically saying that T3 can be prescribed blah blah blah,totally ignoring my concerns about having to pay for a private blood test to even know my T3 was low in the first place,and it wasn’t even directly from her🤦‍♀️

[mfinn]

Can anyone explain what this means please? ' It has told me that it is open to new evidence with people able to consult and contact it about this.'

[nellie237 in reply to mfinn]

I think it means "Sod off, we're not interested"

[mfinn in reply to nellie237]

Thanks. I think you're absolutely right!

[Gingernut44]

Yet more and more “consultations” - this is just kicking the can further down the road.

[arTistapple]

I know this is an old thread. However I have just read the report in full because it was connected to the current newsletter from Thyroid UK. In fact it is tremendously well written and organised report. However I see from the report that my area Newcastle and Gateshead apparently comply with the guidelines. I find this totally at odds with what appears to be happening on this patch. It sounds like lip service to me - they have answered the questions ‘correctly’ but not factually. My GP practice uses the phrase ‘Black List” with reference to Liothyronine and its public knowledge that the endo in charge is totally against prescribing T3. Indeed the actual statistics for prescribing appear to be nil or a couple of outliers only. How on Earth are they getting away with this? The endo in charge in this area has remarked publicly that T3 is not approved.

[lynmynott Partner Thyroid UK in reply to arTistapple]

Since this report, a lot has changed and things have got worse. We are fighting though to make change...

[arTistapple in reply to lynmynott]

Lyn, I would agree things look like they have got worse. I am glad however to know you guys are still on the case. It seem s to me that the main problem is that nobody ‘in charge’ is interested. It’s a malaise remarkably similar to the symptoms of undiagnosed hypothyroidism itself!