Lets get help from the UK Government

[NataschaM]

I am new to this site after trying to look for help on the INTERNET as my GP is just refusing to help me with my Hashimoto's which was diagnosed in 2008.

Looking at the thousands of people suffering from Thyroid disease I think it is time that Government / NHS starts looking at this the same way as they look at Diabetes - as a life threatening long term disease!

I am not sure if a petition to government has ever been done regarding Thyroid disease but one could start an e-petition and if we obtain 100 000 signatures the petition is considered and may go to parliament for debate. The frustrations we experience and ignorance from doctors need to be addressed and I feel that as a large group supporting the same cause we might make some headway?

What are your thoughts on this?

[HarryE]

It's been attempted on a number of occasions, by Thyroid UK & others. Despite the number of people suffering, we didn't reach anywhere near that number

[NataschaM in reply to HarryE]

That is disappointing to hear. I have seen petitions done via Facebook and the numbers reached were phenomenal.

[galathea in reply to NataschaM]

Thyroid problems are treated with levothyroxine and 85% of the people who take it are happy, or too ill to bother complaining. Many people put down their problems to other causes because that us what they are told. I have a cousin who is a martyr to Fibromyalgia who refuses to even consider getting her thyroid checked because the doctor hasn't told her to....

So, the 15% who are still ill, are left to battle it out and are told that everyone else is well. My ex doc told me i was the only patient in his practice taking t3, He didnt expect the reply i gave asking why he left his patients to be ill.

Some of the 15% make it on to forums like this one...... We are a minirity group and the general populace is not interested enough to sign petitions for us...

Rubbish eh?

Xx

[HarryE in reply to galathea]

Absolutely! But of course, if you want to name a boat you get millions!

[NataschaM in reply to galathea]

Totally..and very unexpected. I am originally from South Africa and the doctors and Endo's take Thyroid disease very seriously so I am shocked at the lack of interest from the doctors here..and the fact that patients are self medicating!! I have had numerous arguments with several GP's to no avail but refuse to give up (yet)

[Airmed in reply to galathea]

Never a true word spoken. My sister is typical. I hadn't seen her for two years and was horrified when I did. Her eyes were bulging out like organ stops told her she had to see GP thyroid. No say GP bloods in range. Told her to go back and tell him mine aren't In range either. No,you do not have a problem. Year later emergency yes you do have thyroid problem. Not only that she sees all manor of specialists, fibromyalgia, hugely overweight (size 8 to 16/18) included. Have told her she probably just needs T3 like me and I would go with her GP. She agreed until the day before and then flatly refused. Breaks my heart to watch her daily grind with such debilitating symptoms. You can drag a horse to water etc.

[Hidden]

The reality is that the RCP and BTA will stop at nothing to defend their rubbish guidelines and of course their self-serving reputation. There is too much corruption in UK healthcare and nobody has the courage to speak out about those who are undoubtedly receiving brown envelopes from Big Pharma.

I'm not sure what ThyroidUK are doing these days to change the status quo, certainly haven't noticed any campaigning for a long time. The Scottish Petition rumbles along with no sign of change happening any time soon.

Pretty rubbish really.

[Carriebaby]

We have 2 people here in Scotland who have been constantly campaigning the Scottish government for better testing and alternative treatment to Levothyroxine !! This has been going on for years and unfortunately regardless of the facts and figures they have provided them with coupled with the fact that the two ladies are both suffering from this horrendous disease didn't make any difference. One of the campaigners was actually an MSP who explained her own personal experience fortunately for her she could afford to go privately to a sympathetic endo get prescribed the T3 she so desperately needed. and the other Campaigner has to self medicate NDT at her own cost.

[Airmed in reply to Carriebaby]

The sooner these arrogant and ignorant members of the RCP and BTA fall out of their ivory towers or off their perches and remember their Hippocratic Oath the better. I just cannot believe how these supposedly clever people can act in such an irresponsible and irrational manner. I wish them all a week, no I'll put my spiteful hat on, a year of my T4 life and then let's see what happens.

[Angel_of_the_North in reply to Airmed]

How about , kidnap them, remove their thyroids and give them a low dose of levo? And no domestic or childcare help, of course.

[NataschaM in reply to Angel_of_the_North]

Great idea, hopefully their hair falls out, have no energy and pain...tut tut guess that is mean

[Angel_of_the_North in reply to NataschaM]

Then we could have a raffle to see who gets to tell them they have somatoform disorders when they complain they don't feel well.

[NataschaM in reply to Angel_of_the_North]

Lol...brilliant!

[Airmed in reply to Angel_of_the_North]

Yes, and my vote for the best candidate goes to the chucklehead mentioned in humanbeans post. Glad he's not my doctor!

[humanbean]

This link gives a fine example of why we struggle so much in the UK - it's old but attitudes haven't changed :

web.archive.org/web/2008052...

I had to get the link from the internet archive because the original has been deleted.

The original source of the comment described in the above link is from here :

onmedica.com/BlogView.aspx?...

I haven't tried to register with the site so I can't see the comments myself, so I have no idea if it is still there.

[NataschaM in reply to humanbean]

Unfortunately I cannot see any responses to the Blog but I get the general idea. What a joke. Let them feel what it is like to live with a Thyroid disease. One of the GP's I saw declined prescribing Amour for me and stated that I will just have to live with my ever increasing symtoms and challenges of Hashimoto's. Unbelievable..

[juliat]

Click on my 'image' and then 'posts' suggest you read all my posts.

Our GP suddenly stopped T3 after CCG red listed the drug. After weeks of intensive research I put up a case and got GP to re-instate t3.

I tried rallying TPAUK and TUK to fight CCG's illegal action but these two groups don't talk or work together!

I got banned off the TPAUK forum for trying to rally others in same boat in my area. ( unbelievable!)

You will find some terrifically interesting links and info in my posts including a High Court judicial review in May which found CCG acting illegally and why GP's can be sued if they don't care for you etc etc etc

Sadly despite numerous posts trying to rally the troups I was met with a wall of negativity.

I found this hard to believe but it happened.

I haven't run out of steam on the subject completely as I fully expect my GP's prescription of T3 to us both to all go 'pear shaped' and for us to be back on the ropes.

Please understand that an individual funding application WILL NEVER WORK with CCG's.

It MUST be a service development (AKA specific policy for a sub group of hypo thyroids who NEED t3 to be well.)

My niece is in South Africa and also on a T4 T3 mix, so yes medics seem to be more caring and intelligent out there.

juliat