Video of Scottish debate in the Scottish Parliament

[shaws]

Here it is members:-

scottishparliament.tv/meeti...

[shaws Administrator]

Elaine is stating DTH insteadof NDT I believe.

[LadyBarb]

Wonderful, passionate speech by Elaine Smith.

I don't know how Elaine kept her cool after the 5 years taken in getting the Petition to Parliament and saw so very few MSP's representing so many women ~ I feel ashamed to be Scottish.

Did the MSP's have to run to catch their trains home, because after all, getting their dinner was more important than women's health?

Unless I fell asleep ~ there was precious little really said (I know there was 'some' representation) about GP's inability to diagnose women who have no ability to convert without the aid of prescribed T3, or in fact GP's basic inability to even interpret blood tests correctly, or see the 'whole' person and not just the numbers on, what is (let's face it), a very faulty blood test "spectrum" of the infamous 'within range' numbers which most GP's treat as their 'bible', no matter what their faith.

I don't think any MSP even touched on the medical practice of keeping people sicker, for longer, and the repercussions (not only on women's health and quality of life) but the very long term costs to the NHS in Scotland, which is already experiencing severe cut-backs in real terms (as is the rest of the UK NHS, of course!)

Quite frankly, they all seemed more concerned about scandal of the cost of T3 ~ rather than putting out a Statement from the Scottish Parliament about immediately stopping GP's from taking vital T3 medication from those in most need, or prescribing it for those who will undoubtedly follow on with a need for T3.

Will that take another 5 years, and goodness knows how many unnecessary critical health issues and deaths in the process?

All seemed to agree that there should be no purchase of DTH or T3 from Europe over the internet. No ~ that'd be far more 'risky' than remaining untreated and ill..! And, that's only for the people who can afford to buy from abroad. There's no concern about those who 'can't afford it'..!

They really haven't a clue about the level of seriousness of either the illness, or treatment/ maltreatment ~ or how critical the issues are which they were talking about ~ and seemed unconcerned, apart from a passing comment, to the effect of 'interact with your GP / Endocrinologist' because if the GP / Endocrinologist had been paying attention, both listening and 'hearing', and were in the least interested, or more accurately perhaps 'self-educated', there'd be no damn need for any further "Debate".

As you'll gather, I was not impressed by any MSP or Ministerial 'support', and my heart bleeds for Elaine Smith, and the many frustrations she'll continue to face in the future, by the look of things.

Dreadful, absolutely dreadful, and I can't bear to watch it all again, to see it there were any 'crumbs of hope' which I missed.

[Spareribs]

Thanks Shaws, no-one debated against it (except the Minister had already written her speech - usual stuff 'trust your GP', NDT is not proved effective, T3 can only be prescribed by endos, more research needed etc). I was hopeful until the last bit

I hope the Scottish government act upon this.

[shaws Administrator in reply to Spareribs]

I am going to write to her. It is very clear she knows no-one who is suffering and may know some who feel well so - and, as she is also young and healthy, ill health is a word and not an experience.

[Spareribs in reply to shaws]

Perhaps you could include some testimonials, I would but I'm Welsh.

You never know who's ill by their looks....everyone's fighting a battle x

[shaws Administrator in reply to Spareribs]

Maybe if the MP whose relative is so ill by having her dose stopped altogether could take her along with him and get really first-hand by a woman whose thyroid gland has been removed and doctor has reduced and reduced levo and now stopped it altogether.

[WildDeer]

I'm sitting here in tears of gratitude, feeling such admiration for Elaine Smith, and how she has worked so hard to articulate the whole complex story of the shameful treatment of hypothyroid patients like myself, who can't make good enough use of levothyroxine.

[LadyBarb in reply to WildDeer]

Elaine Smith can't be praised highly enough, that's for sure. A lady with a backbone of steel, to have fought for 5 years (this far) ~ and hopefully for as long as it takes, which may well be a rather long time.

As for the SMPs ~ basically appalling responses and lack of understanding. 😭😭 If that's the best we have to offer, it's not 'good enough'.

I'm delighted that shaws is going to write to the Ministerial representative ~ who was truly awful ~ and who'd have done well to listen further to Elaine rather than bumble on through her 'script'. It was awful to watch and listen to. 😡

[cwill]

I too was in tears. Also dissapointed by the attendance and cheered by the sight of the balcony full of thyroides.

Lets hope that the GP that stopped that poor woman’s drugs completely after T3/T4, T4, increased T4 to 300mcg, dropped to 50mcg and then nothing, without a thyroid, has identified themselves. And that the poor woman is recovering with a steady T3 supply with a doctor that has at least some thyroid competence. I pretty much heard gasps of disbelieve and anger. And did you catch the comment by this same MSP that if this were primarily a mans disease then we would not be in this state? Very telling but now on record.

[Hidden]

Thank you for the link. It's a great pity that Elaine spoke too quickly. It was not the accent rather the fact that she failed to make the best of the great opportunity, however, It was brilliant of her to speak on our behalf, but disappointment in the delivery.

I am now going to ask my Niece who is a member of parliament in Wales if there is a chance of her championing our cause.

[shaws Administrator in reply to Hidden]

Excellent. Awareness is key I think and of all the women who are hypo who are feeling poorly and told they are 'normal' may not have access to computers/laptops so are unaware what the root cause may be of their being symptomatic.

[shaws Administrator in reply to shaws]

It is our own personal experiences that make us angry. I doubt other people who haven't experienced ill-health can possibly understand what we have undergone. It seems so easy according to the BTA i.e. the blood tests reveal whether or not person is hypo (ignoring all clinical symptoms, low temp, low pulse, pain, insomnia and all the rest of it) tell the patient she/he is anxious, depressed, etc etc.

[shaws Administrator in reply to Hidden]

If I stood up to speak in public I am quite sure my voice would have gone for a walk and I wouldn't have been able to say one word

[LadyBarb in reply to Hidden]

The Debate Speech is rather 'time limited', as Elaine Smith would be all too familiar with. (I think politicians have a limited attention span ~ unfortunately, not a joke).

We Scots can tend to speak rather quickly anyway, when we're passionate about something ~ and I feel that Elaine got in the main 'bullet points' ~ the problem is that the 'responders' all had pre-prepared notes of response, and most of them looked as though they'd never even read "their" notes before!

With respect, Elaine Smith made the very best of what was virtually a 'bad situation' ~ as opposed to failing to make the best of a great opportunity.

A Parliamentary Debate at the end of the business day, doesn't 'bode well' after a 5 year 'fight' to get the Debate in the first place ~ it's more a 'consolation prize' rather than a 'win', but at least the Debate is now on record, which may also be a Consolation Prize, as many past Debates have come to nothing ~ but she may have achieved 'talks about talks' sometime in 2019, if the Ministerial representative doesn't 'forget'..! She was getting rather flustered at the point where she said that.

I do hope your Niece in Wales feels able to champion the cause of the Thyroid sufferers. ❤️️

[shaws Administrator in reply to LadyBarb]

I am Scottish myself and can talk the hind of a donkey except at Public Speaking it's my voice that disappears.

[LadyBarb in reply to shaws]

With me, it's my brain that disappears in Public Speaking, shaws

[TaraJR in reply to shaws]

I can/t believe how much I've managed to do re T3 publicly recently. Far from my comfort zone, but we have to do this at the moment

[shaws Administrator in reply to TaraJR]

Yes, no hanging about otherwise many will be in life boats sourcing T3 from anywhere they can but really should be having it prescribed as a 'need' in the UK. Considering that there are another two (I believe) which are cheaper (may not be licenced though) NDT isn't licenced but is a 'grandfathered' thyroid hormone replacement due to it long and useful life, since 1892 which began to save lives and stopped people from a really awful death..

[Hidden in reply to shaws]

I wasn't having a dig regarding the accent, gosh I am Welsh just the presentation itself. I do think that she was marvelous.

[shaws Administrator in reply to Hidden]

I think they are allotted a certain time otherwise everything would last much longer so the MP has to rush along to fit everything in.

[Hidden in reply to shaws]

Yes I realize that but I still think that the information could have been presented in a slightly better format so that there would be plenty of time for laymen to understand the larger picture. We will have to agree to disagree on that.

Sorry to be out of sync with the rest of you.

[shaws Administrator in reply to Hidden]

If the professionals i.e. Endocrinologists and doctors who take years to be qualified who disagree completely with us that T3 (or NDT) makes a huge difference what chance have the laymen (MPs or others who have no idea what hypothyroidism is or how we are affected).

I hadn't a clue before I was diagnosed by a first aider - not a doctor, nor any Specialist who was paid recognised any clinical symptoms (I did get other diagnosis) neither did an overnight stay in the A&E and I was tested for everything, running on treadmill etc and to be discharged as 'probably viral with a high cholesterol'. Cholesterol should have been a red flat. Two days later I got my own requested blood test at 8 a.m. and GP phoned at home two hours later (by this time I thought I must be dying and was bedridden etc) to say come immediately to get levothyroxine you have hypothyroidism and 'by the way' who gave you the blood test form - I said "I did myself".

They have been told that T4 (levothyroxine) is more or less 'perfect' and it may be for three quarters of the world's population but it is the other quarter who need either T3 added to T4, T3 only or NDT or even a rise in levothyroxine.

The doctors/endos fail to be completely unaware or refuse to believe that the patients' continued symptoms are not due to 'depression' as they are very quick to hand out anti'ds, pain relief or any other item but will not test FT4 or FT3 which would reveal whether or not we have sufficient T3 hormones in our blood.

If I or an Endocrinologist was walking along the street and someone queried whether or not they were hypo, would they take the professionals' advice or mine? It is only when we travel the long, long road to diagnosis and ineffective thyroid hormone replacements that we are lucky to find ourselves a forum with members who have the same/similar treatment and we now speak in one voice. Thankfully we have good researchers/scientists who can back us but still the Professionals ignore all research.

[Hidden in reply to LadyBarb]

So do I, she did work for many years as the union coordinator for women and we have family problems regarding auto immune, so let's hope so.

The only trouble is, that it all takes to long while good people are suffering.

[Hidden]

Well I am going to see what I can in asking my niece for her thoughts. As most of our immediate family are suffering various forms of autoimmune problems she may help I can but try. She was in the past a women's trade union leader so she has women on her side.

[LadyBarb in reply to Hidden]

That sounds hopeful ~ but it seems that we need also need to get 'men' on our side ~ as had been stated in the Scottish Parliament, if this was happening to men, there'd be a tremendous outcry of protest. 😡 A fact acknowledged by ... men!

[shaws Administrator in reply to LadyBarb]

Isn't it strange that the Endo profession seem to have only men at the top and I doubt many in the Association have hypo. I wonder if their wives/daughters had hypo and not doing well on levo would they prescribe T3 or NDT.

[LadyBarb in reply to shaws]

Re wives/daughter being prescribed T3 or NDT, of course they'd not only prescribe it, but source it privately! With what they're paid, it'd be no hardship.

In fact, if a Doctor's wife/kids etc were Hypo and not responding to T4, as a 'professional courtesy', they'd be seen by an Endo who could and would prescribe T3 or NDT. And they'd be supervised by that Endo ~ and get the highest "professional" care.

After all, it's 'only' a "professional courtesy" ...

[shaws Administrator in reply to Hidden]

Just in case, I came across this which was posted quite a while ago.

stopthethyroidmadness.com/m...

This is the response Dr Lowe sent to the BTA and despite three yearly reminders before his death they never did respond.

They were determined to stop prescribing NDT by hook or by crook and did so even, like T3 at present, when people had a healthy life and symptom-free.

thyroidscience.com/Criticis...

[LadyBarb in reply to shaws]

It'd make you weep, wouldn't it? 😭😭

[shaws Administrator in reply to LadyBarb]

This is a link past link:

healthunlocked.com/thyroidu...

Big Pharma also allows many doctors to cause iotrogenic illnesses (caused by doctors) shown by the state of affairs by removing T3 from prescribing due to exorbitant cost. We, the patients, shouldn't suffer. Also in Turkey and Greece you can get T3 over the counter for a couple of £s.

[LindaC in reply to shaws]

It is unbelievable that those... ignored this excellent piece of work (all of his works are exemplary!): arrogant, ignorant and plain rude.

[cwill]

Just to backtrack a little, as T4 has no trials on use in thyroid population that anyone can find, and NDT was in use for everyone before T4 was introduced, why is T4 licensed? Is licensing simply a manaufacturers process to prove reliable manaufacturer processes rather than clinical effectiveness? I appreciate that we have moved on since this happened and regulations change but when they trot out the old clinical effectiveness and unlicensed arguement against this form of combination therapy I wonder just how many truck loads of papers in support of T3 and NDT we have to produce.

[Hillwoman in reply to cwill]

I believe manufacturers have to apply to the MHRA for a licence, but it's such an expensive process that a pharma company has to be sure they're going to make money from supplying it to the NHS. And if no-one will prescribe it...

[cwill in reply to Hillwoman]

I have looked into this with lots of great explanatory posts, and understand that the actual licensing process is not at all expensive, but the trials to prove safe are the costly bit. NDT was grandfathered Into the system as was the treatment norm when licensing was introduced, so needed no license. As both T4 and T3 are licensed they must have both had evidence of some kind to prove save for use.

So the unlicensed rubbish is simply a smoke screen for NDT. It is simply demonised with doctors feeling vulnerable in regard to taking full responsibility for patient care. Splitting hairs somewhat as they assume full responsibility for all patient care but presumably it means if anything goes wrong no one from the establishment will back them.

And regarding combination treatment they simply seem blind to the existing research evidence, using ridiculously low amounts of T3 in both research and clinics perpetuating the myth. T3 treatment alone is another matter with it seemingly as rare as hens teeth in NHS and presumably with a correspondingly small research base?

We say clinical need they say unlicensed. We are talking of apples and they are saying pears with ignorance and obfuscation from ‘specialists’ the norm. Ho hum.

[shaws Administrator in reply to cwill]

I don't know if you've read this before but it was by Dr John Lowe, who sent three yearly reminders asking for a response before his untimely death. They never responded. Despite these reminders to them before his death they ignored it altogether. Why were they so determined to remove this as it suits many people and makes them well.

thyroidscience.com/Criticis...

[shaws Administrator in reply to cwill]

NDT was the very original thyroid hormone replacement since 1892 up until a few years ago and many got it prescribed but then it was stopped due to 'rumours' that it was inconsistent, etc etc. It wasn't the patients who were using it I'm sure.

So it was a well-proven 'grand-fathered' thyroid hormone up until the introduction of blood tests along with levo. Dr Lowe said it was due to corruption, i.e. doctors (mainly in the USA I believe) paid to prescribe levo instead of NDT. You can understand why pharma companies want their products to be used as I assume they have stockholders etc. Besides if we still have complaints/symptoms, we get other prescriptions for them, anti-d's, pain relief etc etc.

thyroidscience.com/Criticis...

Dr Lowe, despite three yearly reminders to the BTA before his death they never responded.

[Hillwoman in reply to cwill]

Thanks for the clarification.

[shaws Administrator in reply to cwill]

Dr Lowe said it was due to corruption i.e. holidays, monetary rewards or 'in kind'.

[Debbie2012]

Just watched the video. My t3 has been withdrawn, contrary to info discussed at Holyrood. 😡

[shaws Administrator in reply to Debbie2012]

Clutter has given this information in another post. We cannot go cold-turkey especially if levo doesn't is not good for us:

Hillwoman,

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

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

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

[shaws Administrator in reply to Debbie2012]

I would email [e-mail] and tell Lyn Mynott you've had T3 withdrawn. She is gathering evidence I believe.

[cwill in reply to Debbie2012]

Contact your MSP and quote that minister clearly said will not be withdrawn and will be available to patients. Also try contacting Elaine Smith direct for assistance. I believe it has worked for others. If on drug and getting on well then they can’t do the ‘clinical decision’ rubbish. The debate should be ammunition for your fight.

[Debbie2012]

Thanks, I will, and thanks for the links...my weekend reading! Im also going to write a letter to the clinical lead endo of my local health board to help them agrue the case for t3, and will copy it to my MSP. T3 changed my life and I will now just have to source it privately. We are the lucky ones who actually know about and can buy t3. How many more people are out there suffering, undermedicated, unsupported. It makes my blood boil.

[shaws Administrator in reply to Debbie2012]

I recovered on T3 as well. One of our Researchers and his team (as well as some others) have proven that a combination of T4/T3 can also help many.