Downing Street March: We need to get together... - Thyroid UK

Thyroid UK

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Downing Street March

Katepots profile image
20 Replies

We need to get together, hundreds of us and march to Downing Street. Let's stand up and be heard. I'm fed up of being ignored. My health has suffered not having T3.

It does not make sense not to prescribe it. I've been offered antidepressants and statins instead???!!! So there's no saving on cost there. Then there will be my cardiac treatment when I have a stroke.

We want preventative medicine.

Let's be heard!

Who's in?

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Katepots profile image
Katepots
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shaws profile image
shawsAdministrator

Lyn Mynott has been working for years from her home and then a garden shed to try to change things for the better. She also provided evidence to the Scottish Parliament and works 'behind the scenes'. You can become a member and received quarterly magazines with updates etc. I believe its about £20 per year.

Dr Chris Steele of GMT is also an adviser and spoke at our Conference two years ago. He was astonished by the show of hands when he asked who was dissatisfied with levothyroxine.

thyroiduk.org.uk/tuk/

Katepots profile image
Katepots in reply to shaws

Great, thanks for that I'll sign up. I still feel an old fashioned protest of hundreds of people with media attention would get us heard. I would not want to undo any good work people have done though.

Still protesting quietly is not working!

Butterfly65 profile image
Butterfly65 in reply to Katepots

I think you're absolutely right Katepots media attention is what is needed & a parliamentary protest with a big enough turn out would surely attract lots of attention. If people who genuinely need this treatment ( I'm 'not' one of them by the way ) are not willing to give up 1 day & the price of a return rail ticket to protest then the 'powers that be' have won yet again.

Katepots profile image
Katepots in reply to shaws

I have emailed her for her thoughts as I would hate to jeapodise her work.

Have become a member!

If it's a goer getting people like Dr Chris Steele involved would be great. My daughter works in television do she could hopefully get done hype going.

shaws profile image
shawsAdministrator in reply to Katepots

We have had some good doctors who were trained in the 40's and 50's (seems long ago now) but they only new about clinical symptoms (no blood tests or levo thyroxine then) and were given NDT according to their symptoms. Unfortunately they have either retired and one in particular died (stroke) (he was a Virologist) and was hounded and appeared 7 times before the GMC because he prescribed and treated patients who travelled all over the UK. His patients/family believed it was due to the strain.

worldthyroidregister.com/Go...

worldthyroidregister.com/Up...

Katepots profile image
Katepots in reply to shaws

That is so sad.

Wouldn't it be lovely to turn the clock back and treat clinical symptoms again.

shaws profile image
shawsAdministrator in reply to Katepots

As far as I know this is what happened.

1. NDT was the only hormone replacement since 1892 worldwide. There was no Fibromyalgia, CFS or ME diagnosed at that time.

2. Big pharma in the USA had looked at what it could produce which was fruitful for them and with NDT taken by millions that looked attractive.

Their promotions were believed about NDT being inconsistent and levo being a 'perfect' replacement (even though synthetic).

Money was in abundance, doctors paid to prescribe and Endos believing the 'promotions' plus the monetary incentives so the guidelines were changed that only levothyroxine was the thyroid hormone of choice (by the NHS).

False statements were circulated about NDT despite it being safely used since its inception. Dr John Lowe produced a Rebuttal to the BTA of his thorough study he published his Article - False Statements and sent to the British Thyroid Association which was ignored and despite his three yearly reminders they never responded.

Dr L has since died.

The fact that many patients remain undiagnosed/untreated but given 'alternative medications' money is still rolling in for the producers of them.

Those that should know better appear unaware that our heart can suffer as well as everything else in our body. Appear to be completely unaware that T3 is the active hormone our bodies need to function. Ignore the pleas of many patients who are thought of as psychotic as their TSH is 'in range'. Ignore completely clinical symptom. Ignore how unwell the patient is when taking levothyroxine, some even worse than before being diagnosed.

Losing employment, housebound, marriages failing, many family members not understanding why, when taking, thyroid hormones the patient is still complaining.

Thought of as 'nuisances' 'hypochondriacs' and doctors' heart sinks when patient appears 'yet again' in surgery.

A Dr Derry, in Canada, also lost his licence because he believed like Dr S, Dr P and others that NDT was best for many patients.

thyroidscience.com/Criticis...

Katepots profile image
Katepots in reply to shaws

Completely my story but have just got a private script for NDT so hopefully on the way to feeling alive again. I shall make a note of all of this and do more research as if we are going to March we need to do it properly. I need some blurb for the Facebook page too so those less informed can understand.

shaws profile image
shawsAdministrator in reply to Katepots

I do wish you success. I also left out miscarriages which might be due to undiagnosed/underdosed hypo.,

Lindsayf profile image
Lindsayf in reply to shaws

I live in Norfolk and would join... Sick of so many of us having to put up with poor excuses! Being told to go away with no help and to get on with it! Placards at the ready!!

humanbean profile image
humanbean

I would join a protest march to Downing Street.

On a practical note it would have to be either a week day afternoon or a weekend so that I could take advantage of cheap day returns. Train travel costs a fortune at peak time.

marigold22 profile image
marigold22

I would join a protest march

Justiina profile image
Justiina

If I were in UK I would be there! I do think people need to protest louder and louder. To get proper attention from media, which btw should do their job properly and expose the dirty truth, people need to do good job and be consistent.

humanbean profile image
humanbean

Since it is impractical to expect everyone who is interested to go to London for a march, it might be an idea to have multiple marches e.g. Manchester, Birmingham, Glasgow etc... either all done on the same day or consecutive days/weeks?

shaws profile image
shawsAdministrator in reply to humanbean

Good idea!

Katepots profile image
Katepots

Right as there is interest I need to seriously think about this properly. I need to research and speak to the Lyn Mynott as would be good to hand a petition in when we got to Downing Street. There's lots of red tape I will find out about. I'll also create a Facebook page so we can all get together and decide a plan of action.

Watch this space!

Beverleyb profile image
Beverleyb

im in!

Musicmonkey profile image
Musicmonkey

I would be up for a march locally if poss, but maybe even London if timings allowed :)

Pepperkim22 profile image
Pepperkim22

Id be in as well

Katepots profile image
Katepots

Great, I'm thinking around late summer/early autumn. Need referendum out of the way first. I will start a Facebook group. Looking into legalities and will need to get a petition going to hand in when we get there. Lots to do!

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