Opinions of Scottish Debate today?: I looked at... - Thyroid UK

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Opinions of Scottish Debate today?

diogenes
diogenes

I looked at most of the debate and felt more heartened myself that an excellent collection of speakers put the case for T3 combined or T3 only therapy very well, with convincing anecdotes and some quite strong criticism of medical behaviour. Also strong calls for guideline revision and studies to further the case. Elaine Smith of course was the able leader in the debate but other speakers were equally eloquent I thought. Perhaps at last some pressure is being brought to bear on the medical establishment, which itself seems in some quarters beginning to question its stance.

34 Replies
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Thank you for this. This so important to save lives, years. But until Endocrinology in the UK hold up their hands to the minority. We still have a fight on our hands. Onwards and Upwards!

I'm in Scotland and have just watched the whole debate with much interest and increasing hope that those of us who rely on T3 may at last have found some influential ears that not only listen but that also understand the gravity of the situation we find ourselves in.

Clearly my tale is not unique but it took me until the age of 73 to find the answers that should have been available many years ago.....this must stop!

My health had been very slowly declining for decades, until, just over a year ago, I became very ill despite the fact that I'd been taking Levothyroxine for nearly 20 years!

Despite many tests, scopes and scans the diagnosis was Fibromyalgia and Chronic Fatigue!

I knew then that I had to take control of my health....or lose control of my life.

I found TUK, read a lot and learned a lot, had private tests and bought T3 then self-medicated with the support and guidance of members.

I now know I am homozygous/DIO2 and very possibly have thyroid hormone resistance and now await the results of cortisol tests.

I titrated T4/T3 for about 5 months with no success which led me to T3-only which I appear to need in a fairly large dose (100mcg currently) in order to flood cells depleted of T3 for....decades.

After 5 months on T3-only and after increasing doses I am now experiencing the beginning of recovery.

I now understand that recovery will take a long time as a consequence of the shut down of T3 receptors caused by those long years of low T3, that, the result of decades of poor conversion.

Recently I saw my original blood test results of about 20 years ago and with the knowledge I've now gained was able to explain to my GP why my conversion problem should have been identified back then. It wasn't ...and the above rant is the result.

Having built up what appears to be a reasonable case I have requested an appointment with an NHS endocrinologist; if and when that takes place I hope I will be given a fair hearing...and the T3 I need to survive.

Hopefully this debate will prove to be the genesis of improved thyroid care.....now!

With fingers crossed...

DD

Gcart
Gcart
in reply to DippyDame

I wish you DD and all members the help needed to regain our health.

As you so well explained how bad things can become before we get the correct treatment . Big hug DD.

Thankyou Diogenes for the work you do to help us

DippyDame
DippyDame
in reply to Gcart

Thank you. I just hope the lack of correct diagnoses and treatments experienced by members - and others - will be reversed once and for all...but when?

Take care

DD

TSH110
TSH110
in reply to DippyDame

Judging by many new people coming here with tales of woe ....not for some time yet ☹️

DippyDame
DippyDame
in reply to TSH110

Indeed!

Cooper27
Cooper27
in reply to DippyDame

This is so sad, because I have a friend going through the same thing... She's hypothyroid, but her doctor tells her she's medicated fine, and just happens to also have CFS and fibromyalgia. I've been trying to gently suggest she's not medicated enough, but doctor knows best!

DippyDame
DippyDame
in reply to Cooper27

Sadly most doctors don't appear to have a clue....or are too fearful for their jobs to stray beyond the parameters of the guidelines laid out for them, despite the fact they are just that...guidelines!

How can she be "fine" if she feels unwell; how we feel is a significant element of clinical judgement. Changing her doctor (and crossing her fingers that the next is better informed/open minded) might be a start!

"Fine" is meaningless. Suggest that your friend asks for a copy of her blood test results which she is legally entitled to have and encourage her to post those here for advice. Folate, Ferritin, Vit D and Vit B12 also need to be optimal

A private blood test is another option -

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

It can take courage and sheer bloody mindedness to take control of your health...but, in extremis, one's life may depend on that decision

This forum is a fund of valuable information, a good place to start is to look at previous posts and then expand reading from there.

You probably know all of this already...but it's worth reiterating,

Knowledge is power!

Wishing your friend well

DD

Cooper27
Cooper27
in reply to DippyDame

It's very hard to strike the balance between sounding helpful and sounding pushy - I'm trying not to come on too strong at the mo!

I don't think it's that she's been told she's fine, but that her dosage is fine (50mcg), and it's just unfortunate she's also developed ME and fibromyalgia as well... The classic "your symptoms are not thyroid related"

DippyDame
DippyDame
in reply to Cooper27

Understand....just had a visit from a friend who also believes "doctor knows best". I get the impression she thinks by self medicating I've lost the plot!

TSH110
TSH110
in reply to Cooper27

Amazing how many intelligent people would rather believe their doctor’s incorrect opinion rather that think long and hard about why they are still ill and act on advice from those who have already been there. They might have brain washed me for decades before diagnosis but not after coming here because I still felt rubbish after two years on Levothyroxine at a pretty decent dose. I have the DIO2 mutation for reduced T4 to T3 conversion not that the NHS did anything to check that out just dolloping a load of antidepressants down my gob and bundled me off to CBT - job done. Yet self medicating on NDT put me more or less right (considering the gravity of my hypothyroidism when finally diagnosed - even then it was a fight to get the test) in next to no time.

Diogenes, was this in the Scottish Parliament building and is there a video recording available? PR

DippyDame
DippyDame
in reply to PR4NOW
shaws
shawsAdministrator
in reply to DippyDame

That was wonderful to listen to.

The fact that Endocrinologists are to be the ones that should inititally endorse T3 - will they? As we know full well that the majority still think that levothyroxine should be the 'choice' and are reluctant to prescribe anything else other than levooand and that most believe NDT has no reason at all to be prescribed - as the Statement issued by the BTA clearly shows and they didn't respond to Dr Lowe's Rebuttal, despite three yearly reminders before his death:-

thyroidscience.com/Criticis...

Will it be possible to persuade these people that we have to rely upon that some of us need 'options' to be well. Even Dr Toft has written an article:-

rcpe.ac.uk/sites/default/fi...

Well done Scotland.

DippyDame
DippyDame
in reply to shaws

Must say I was proud of them all.

I think they've now taken "the bit between their teeth"....

shaws
shawsAdministrator
in reply to DippyDame

It will be great for suffering people. At the last debate I was astonished (by the comment made by another MP) who said his cousin (I believe) had her thyroid hormones removed altogether and was bedbound and very, very ill.

It makes one shudder at the thought of what is really negligence by a doctor/endocrinologist who doesn't understand the purpose of thyroid hormones and what they actually do i.e. keep us alive.

DippyDame
DippyDame
in reply to shaws

Risking repeating myself here but....it just beggars belief!

PR4NOW
PR4NOW
in reply to DippyDame

Thank you for the link. PR

Hillwoman
Hillwoman
in reply to PR4NOW

This link will take you directly to yesterday's debate.

scottishparliament.tv/meeti...

PR4NOW
PR4NOW
in reply to Hillwoman

Thank you for the link. PR

I listened in, and thought the debate got better as it went on. There were some very informed inputs.

I was a bit frustrated that the costs of T3 weren't brought up more, and that no actions were given to address them.

I also didn't know that there were now 3 approved suppliers for T3 - does anyone know who they all are? Has the cost of T3 come down meaningfully at all?

humanbean
humanbean
in reply to Cooper27

I also didn't know that there were now 3 approved suppliers for T3 - does anyone know who they all are?

There are more than three approved suppliers of 20mcg tablets of T3 now, listed in the BNF - British National Formulary :

bnf.nice.org.uk/medicinal-f...

DippyDame
DippyDame
in reply to humanbean

I was told, in a letter from the Scottish Government, that there are five. I asked my local pharmacist about these and when she made enquiries she was told that no specific brand could be guaranteed/offered. and she was quoted a price of around £125 for 28 tablets by private prescription.

Like everything else "thyroid" there is no clarity.

TaraJR
TaraJR
in reply to humanbean

Morningside and Teva both came in summer 2017, alongside Concordia which had held the monopoly. But they both came in at the same price as Concordia. So much for 'competition'. The price has come down just a few pounds in 18 months, but a negligible drop. Despite the government having had statutory powers concerning generic drug costs for a year.

Cooper27
Cooper27
in reply to TaraJR

I didn't know this, until I heard it in the debate yesterday. The more you learn, the worse it gets!

I cried when Elaine Smith spoke, I think she covered the situation the best she could in the time she had. I also appreciated that many of them mentioned how T4 is not a substitute for T3 and how people have been taken off T3 purely because of money and with no regard for their wellbeing and how patients feel their symptoms are not believed. (It's like thyroid disease causes no symptoms to many endocrinologists)

I really hope this will lead to more discussion more awareness and seriously better treatment because it really is disgraceful!

Many apologies diogenes I seem to have hijacked your post.

Thank you for all the amazing work you do for us, it provides a safe haven in a storm.

Best...

DD

For anyone who is deaf or hard of hearing - here is the link to the transcript :

parliament.scot/parliamenta...

Click on the + sign next to "Thyroid and Adrenal Testing, Diagnosis and Treatment "

If I was Lorraine Cleaver I would be absolutely livid at the amount of credit given to Sandra Whyte - as far as I'm aware she withdrew from being a petitioner quite early on in the process due to ill health.

DippyDame
DippyDame
in reply to humanbean

theyworkforyou.com/sp/?id=2...

Is this what you mean humanbean?

I suspect this MSP failed miserably to do her homework!

As far as I can see, without Lorraine Cleaver this petition would be just another pile of paper gathering dust...but without the other two it may never have reached Holyrood. They found a champion in Elaine Smith MSP!

Her submission 27/02/2013

parliament.scot/GettingInvo...

You may already know this but it is inspirational and worth repeating here...and I wish I had a fraction of their courage!

humanbean
humanbean
in reply to DippyDame

When the Scottish Thyroid Petition was first lodged there were three petitioners - Sandra Whyte, Marian Dyer and Lorraine Cleaver, in that order. Two of the original three petitioners dropped out, quite early on, leaving Lorraine Cleaver to take on the responsibility for it all, for years. So to hear Sandra Whyte's name mentioned so often when most of the work was done by Lorraine Cleaver must have been very galling for Lorraine.

parliament.scot/GettingInvo...

DippyDame
DippyDame
in reply to humanbean

I agree, and she was sitting in the gallery listening.

diogenes
diogenes
in reply to DippyDame

I understand Lorraine tried to make it up with them at the meeting and was completely rebuffed.

DippyDame
DippyDame
in reply to diogenes

That is shocking and sad. ....

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