Facebook and twitter

[stockman27]

Hi all, I don't use twitter but I use face book. we really need to support the petition that that has been created for the Government to allow Natural thyroxin to be sold in the UK. Do we have a face book account and do we have a twitter account. ???

John

[HarryE]

If you mean Thyroid UK, then yes they have a Facebook account and the petition is on it. Don't know about twitter.

[Clutter]

Deleted my recent post cos I linked to HU twitter's account and noticed they don't even mention hypothyroidism on their Real Patient page

Here is the TUK link twitter.com/thyroiduk_org The petition is on the tweet dated 3 May.

[flatfeet1 in reply to Clutter]

Considering thyroid UK must have the largest number of members, standing at 15,694, this beggars belief.

[Clutter in reply to flatfeet1]

It's not at all supportive, for sure

[LouiseRoberts in reply to flatfeet1]

See below...! xx

[LouiseRoberts in reply to Clutter]

HU have contacted people about being case studies for their Real Patient page - I can only assume that the people I suggested were not interested...

Either that, or we are included in 'and others'....

If anyone would like to volunteer... drop me an email... [e-mail]

L

xx

[stockman27 in reply to LouiseRoberts]

Louise < I amy be interested if this is anonymous simply as I am trying to find work and I do not want to put off prospective companies.

Cheers

John C

[LouiseRoberts in reply to stockman27]

Hi John

Not sure - I'll pass on your info to Hugo...

xx

[Clutter in reply to LouiseRoberts]

Do you think personal stories help raise awareness, Louise? I am concerned about the slant that could be put on importing meds for self medication ie "Junkie Hypothyroid Woman Imports Metabolism Boosting Hormone Drugs from Solomon Islands" rather than "Patient Denied NHS Treatment and Forced to Self-medicate".

[LouiseRoberts in reply to Clutter]

Generally they do, but obviously there is always a concern that a journalist may put their own slant on things...

[Clutter in reply to LouiseRoberts]

Put my name forward to HU. If raising awareness helps I'll risk a dodgy editorial slant.

[LouiseRoberts in reply to Clutter]

Brill! Thanks!

[Afaghieh]

I don't use either is there another link?

[lynmynott Partner Thyroid UK in reply to Afaghieh]

Hi Afaghieh, Here's a link to our petition page - thyroiduk.org.uk/tuk/campai...

[Afaghieh in reply to lynmynott]

Thank you Lyn.

[stockman27]

Hi Lynn,

We have not met since the first conference we had at Euston, I do not suspect you remember me.

We have to get this petition the widest exposure we can, other wise we are going to get the the same old meds and the same old treatments from the same old doctors.

You have heard that the pen is mightier than the sword and we have a chance with this, especially after the ladies who went to the scotch parliament.

Many thanks for your great work.

For instance. I am seeing a Private dr, which I don't mind, I am having to pay for my meds from the USA, I don't mind that either. What I do mind, is Customs taxing me and the post office imposing a charge to tax me further,. I feel I am being penalised for being sick.

John C

[sky00 in reply to stockman27]

just wondering if that big amerikan pharmacy, that is planning a takeover on the british one--sorry can't remember the names) will perhaps bring over the meds available from the states such as NDT. do we think this may be a possibility?

[Hidden in reply to sky00]

Pfizer taking over GlaxoSmithKline? Very probably not. Pfizer are best known for stripping out the useful meds from competitors that they buy and then binning what's left. One of the few medicines they developed themselves was Viagra. And that was by accident. It was supposed to be angina medicine.

[sky00 in reply to Hidden]

that is disappointing news--but i'm afraid expected, as most amerikan corp's are nothing but greedy and unethical--but i was so hoping that perhaps, they would think dollar signs, as so many of us want to BUY ndt if they sold it here, avoiding duty and all that... fingers crossed the petition will make a difference, more folks need to sign it though--one thousand odd is not enough--as someone said we are fifth teen thous odd strong...

[Hidden in reply to sky00]

It is quite possible to buy inexpensive NDT for delivery to Britain, without excise duty. PM me if you want to know where I get mine.

[Hidden in reply to Hidden]

It wasn't GSK, it was AstraZeneca. There's a petition just started to try and get the government to stop Pfizer. Mind you, the gov did nothing to stop the take over of Cadbury's (oh woe, woe and thrice woe - national treasure - yada yada yada) and the choc tastes just the same :O). However, Pfizer do not have a good track record as regards research and development. Just for selling what they've got their hands on for whatever they can get for it.

[Clutter in reply to sky00]

No, the takeover will be an asset stripping operation resulting in decreased research and development. NDT is not licensed for use in UK but is available. GPs can prescribe it on a named patient basis. Unfortunately, med students aren't taught about NDT so many doctors don't know what it is or don't understand it. What needs changing is the BTA guidelines which state that T4 monotherapy is the recommended treatment and any lack of satisfaction must be due to non

-compliance in taking T4, non-thyroidal illness and psychosomatic reasons ie continuing symptoms are in the patient's head :-x

[Hidden in reply to stockman27]

"pen mightier than the sword". I have failed in my attempt to get my MP or anyone in the Dept of Health to take thyroid sufferers seriously. I have been patronised, misled, bamboozled and told all is well. It is like punching a pillow. Sigh.

[Clutter in reply to Hidden]

((( Humphrey )))

[Hidden in reply to Clutter]

I was warned. Nevertheless - all it cost me was time. The drip wears away stone. But, foolishly, I was hoping for a considered response.