Debate in Scotland

[shaws]

I've just finished listening and it was a very good debate. I don't know the name of the last speaker but obviously she isn't hypo and may not know anyone who is and more or less said we shouldn't self-medicate as it could be dangerous (or words to that effect). She doesn't realise we do so out of desperation. The Minister before her did speak, and he had received an email from a relative whose thyroid gland was removed some years ago (maybe 4 not sure) and she's texted him (I think just before the debate) that she was on 400mcg of levothyroxine all that time, and then GP reduced, and reduced and now he's told her she doesn't need levo AT ALL. He said she is extremely ill. He will probably look into the matter and Elaine Smith, MP is hypo herself, so slow but sure steps hopefully. The problem is they quoted the BTA etc etc and I doubt the MP knows most on this forum know far more about suffering than they do especially by stating that levothyroxine is the hormone of choice - they're choice not ours.

I'd still be ill as many on this forum would be if we didn't research search and some lucky enough to see knowledgeable, sympathetic doctors (few are around these days as most have retired) and alternative to T4. It's all very well saying that the BTA and doctors know best - little does she know and she doesn't realise it isn't dangerous as it is hormones. If we took a double dose by mistake, we'd definitely not do that again.

[Hillwoman]

I missed the first part of the debate, so didn't hear Elaine Smith's speech. My impressions of what the last speaker said - I think she was actually the govt health minister - are similar to yours. It was an example of a politician falling back on statements from the very professionals who are being criticised. It's happened before with other issues. At least the debate will continue with ES's involvement, and there is still the committee report to come.

The MSP who spoke about his relative said she'd been on T4&T3 combo after TT, then T4 only at 300 mcg, and now on nothing at all. That woman will become very ill indeed.

[shaws in reply to Hillwoman]

If I can find out her name of the Health Minister I will write to her.

[shaws in reply to shaws]

The Minister of Health's picture doesn't look like the same person.

[Hillwoman in reply to shaws]

Oh dear. There will probably be a list of contributors somewhere.

[shaws in reply to Hillwoman]

I think so. So I will have a look tomorrow.

[shaws in reply to shaws]

One thing was positive that Dr Midgeley was mentioned.

SeasideSusie marigold22

[SeasideSusie Remembering in reply to shaws]

Yes, I noticed that, along with some positive stuff from Toft.

[shaws in reply to SeasideSusie]

Oh! if only Dr S was still here he would have also provided enough evidence solely on his treatment/care of hypo patients.

[SeasideSusie Remembering in reply to shaws]

Indeed

[Hidden in reply to shaws]

Shona Robison

[DippyDame in reply to Hidden]

The last women speaking wasn't Shona Robison....off to check her name!

[DippyDame in reply to DippyDame]

The last speaker was Aileen Campbell MSP Minister for Health and Sport who supports Shona Robison the Cabinet Secretary for Health and Sport.

[shaws in reply to DippyDame]

Thanks very much.

[Hidden in reply to DippyDame]

OK sorry I got it wrong, thanks.

[marigold22]

It is all so incredibly protracted. I'm not able to watch it on video now as it makes me angry. The people who verbally oppose Lorraine and Elaine do not know the correct facts.

[SeasideSusie Remembering]

I was watching it but it kept cutting out and I had to keep getting it back. Was on my tablet, my PC monitor doesn't have speakers. Unfortunately, I lost it when the last but one member was speaking (mentioning his relative) so I missed the last speaker - possibly for the best, I might have got a bit worked up!

All in all I thought it was very good, let's hope some good comes of it.

[shaws in reply to SeasideSusie]

She is going to get a response from me - I shall have to be 'gentle' and just give her a few facts about listening to BTA et al.

I shall recommend that she might find out more from this forum than all the print-outs from BTA et al.

[t3rcam]

I totally agree Shaws. I think we should all email the last speaker with our experiences. She needs some educating!

[shaws in reply to t3rcam]

Gently, gently does it. Before we were hypo we listened and took doctors advice. When she gets to the stage that she becomes hypo she will change her mind if she doesn't recover on T4. We have some members on here who have and are well on levo, even if it surprises (or astonishes) us.

[Hidden]

Ooo I missed this - can anyone tell me if I can find it online?

[Hidden in reply to Hidden]

cracker10 Here it is youtube.com/watch?v=-ziACR_...(Not working as expected?)

[shaws in reply to Hidden]

I've also put in on a new Post around the time you have

[shaws]

Maybe it might be on Youtube in a few weeks as some Scottish Parliament debates are on it at present.

[DippyDame in reply to shaws]

You will find it on the Scottish Parliament TV website

[DippyDame]

Well done those at Holyrood...this issue has rumbled on for far too long hopefully this debate will raise the issue that people are suffering/dying because of poor/no thyroid treatment ... and that they are not just "making a fuss".

[TaraJR]

Wonderful impassioned speech from Elaine Smith The Health minister at the end was quoting the BTA guidelines from 2015. Why not their statement from December 2016, which says that a minority of patients need T3, and it should not be removed from the due to cost? And their October 2017 response to the NHS consultation repeats that

[shaws in reply to TaraJR]

She probably thought that was the latest guidelin and despite what they state about not withdrawing if needed, at a stroke the GC have withdrawn T3 regardless of the situation in places patients in. The following is an excerpt by Clutter :

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

If the CCG instructed your practice to withdraw Liothyronine they should first have consulted on the impact it would have on patients and will be in breach of guidelines if they did not. mills-reeve.com/files/Publi...

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

Please also sign the petition below requesting better thyroid diagnosis, testing and treatment. change.org/p/itt-campaign-g...

healthunlocked.com/thyroidu...

[TaraJR in reply to shaws]

Yes, thanks for this. I'm in Norfolk and we have small active group who have "working with" (feels like "working against") our CCGs. They have removed T3 from ALL doctors, no consultation. And no consultation or signposting for patients re NHS consultation. But we're on to them...

[Clutter in reply to TaraJR]

TaraJR,

CCGs are supposed to consult, they are in breach of guidelines if they do not.

mills-reeve.com/files/Publi...

[shaws in reply to TaraJR]

I think they've all got hot-headed when they've learned of the cost but cannot they think beforehand, that to withdraw an important hormone and leave the patient without a suitable replacement - not levothyroxine for many - causes and immense stress and also NDT could be sourced. They could easily prescribe the cheaper T3s (I think there's two) but they don't want the responsibility and would rather patients suffer. Lets stop this prescribing lark for levo and T3 after all they are only hormones and do what some other countries do, buy from chemist but not at the prohibitive price in the UK.

[Hillwoman in reply to shaws]

Clutter Please could you re-post those BMJ and gponline.com links, as they don't seem to be working.

Thanks

[Clutter in reply to Hillwoman]

Hillwoman,

bmj.com/content/358/bmj.j36...

gponline.com/gpc-warning-ig...

mills-reeve.com/files/Publi...

[Hillwoman in reply to Clutter]

Thanks very much.

[TaraJR]

Thanks Clutter. Yes we've seen that, and it's in our list of 'ammunition' to take back to CCGs. We've been working closely with our local Healthwatch too; they're very supportive. Though of course, wheels turn slowly...