Sheila reply yesterday from my MP

July 14, 2010

Hi Sheila,

Just letting you all know I received a reply from My MP in regards to Letter to

MP.

Here is the response. I have had to type it out as I couldn't copy and paste.

Dear L

Thank you for contacting me about Thyroid Patient Advocacy. Please be assured I

have forwarded your concerns to the Minister of State for Health, Simon Burns

MP, as this issue falls within his responsibilities.

Thank you again for contacting me

Iain MP

July 15, 2010

Hi lolly, please remember to keep this in mind and to follow

this up with a request asking what has been done. often they forget, or they just

tell you it has been passed to the BTA for their comments - or they have passed

it to the BTA/RCP and as they are the experts in the field, they have to go

along with their 'knowledge'. Watch this space.

Luv - Sheila

Just letting you all know I received a reply from My MP in regards to Letter to

MP.

Here is the response. I have had to type it out as I couldn't copy and paste.

Dear L

Thank you for contacting me about Thyroid Patient Advocacy. Please be assured I

have forwarded your concerns to the Minister of State for Health, Simon Burns

MP, as this issue falls within his responsibilities.

Thank you again for contacting me

Iain MP

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3003 - Release Date: 07/13/10

18:36:00

July 17, 2010

Hi Shelia,

Who do I follow it up with my MP or the Minister for State Health Simon Burns

MP?

Luv

Lolly

>

> Hi lolly, please remember to keep this in mind and to follow this up with a

> request asking what has been done. often they forget, or they just tell you

> it has been passed to the BTA for their comments - or they have passed it to

> the BTA/RCP and as they are the experts in the field, they have to go along

> with their 'knowledge'. Watch this space.

>

> Luv - Sheila

>

> Just letting you all know I received a reply from My MP in regards to Letter

> to MP.

>

> Here is the response. I have had to type it out as I couldn't copy and

> paste.

>

> Dear L

> Thank you for contacting me about Thyroid Patient Advocacy. Please be

> assured I have forwarded your concerns to the Minister of State for Health,

> Simon Burns MP, as this issue falls within his responsibilities.

>

> Thank you again for contacting me

>

> Iain MP

July 18, 2010

Hi Lolly

You need to approach your MP in the first place, but insist that

should he send the information to Lansley MP that as well as listening

to the recommendations/information he will be given by the ~RCP and BTA, me

MUST also insist that everything the RCP, BTA state should be backed up with

medical science. This is one of the main problems that we have with the

Department of Health, they do not press for statements coming from such organisations

to be backed with science, they seem quite happy to accept their OPINIONS only.

This must stop, because their OPINIONS are putting patients health at serious

risk. I think this is perhaps one of the MAIN messages we have to get over. Their

'Guidance on the Diagnosis and Management of Primary Hypothyroidism has NOT

been backed with scientific evidence.

Luv - Sheila

Hi Shelia,

Who do I follow it up with my MP or the Minister for State Health Simon Burns

MP?

Luv

Lolly

>

> Hi lolly, please remember to keep this in mind and to follow this up with

a

> request asking what has been done. often they forget, or they just tell

you

> it has been passed to the BTA for their comments - or they have passed it

to

> the BTA/RCP and as they are the experts in the field, they have to go

along

> with their 'knowledge'. Watch this space.

>

> Luv - Sheila

>

> Just letting you all know I received a reply from My MP in regards to

Letter

> to MP.

>

> Here is the response. I have had to type it out as I couldn't copy and

> paste.

>

> Dear L

> Thank you for contacting me about Thyroid Patient Advocacy. Please be

> assured I have forwarded your concerns to the Minister of State for

Health,

> Simon Burns MP, as this issue falls within his responsibilities.

>

> Thank you again for contacting me

>

> Iain MP

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3010 - Release Date: 07/16/10

19:19:00

July 21, 2010

Hi Sheila,

Thank you for yoru great advise I will follow up with this I am also in a

predicatment when it comes to recognising the FT3 test and having to pay out of

pocket for it, I wasn't orignally dx with hypothyrodism but Graves disease

(Hyperthyrodism) and TED and after having surgery TT for a suspicious nodule.

I have been treated so much worse now than when I was hyperthyroid T4

Levothyroxine treatement is doing nothing for me each lab test I have to have

some kind of adjustment when really I should be on a combo of T3 and T4 but will

anyone do it No.

My arguement here is that Levothyroxine as a single treatment for Hypothyroidism

isn't really the right solution for many of us as evidence does show not just

what the BTA,RCP state and it's about time they listened to patients and

recognised the scientific evidence to support this.

I feel very alone with this.

So thank you for alll your help I hope i can do something to help myself and

others it just doesn't seem that anyone wants to listen or even care about what

this disease can do to us.

Luv

Lolly

>

> Hi Lolly

>

> You need to approach your MP in the first place, but insist that should he

> send the information to Lansley MP that as well as listening to the

> recommendations/information he will be given by the ~RCP and BTA, me MUST

> also insist that everything the RCP, BTA state should be backed up with

> medical science. This is one of the main problems that we have with the

> Department of Health, they do not press for statements coming from such

> organisations to be backed with science, they seem quite happy to accept

> their OPINIONS only. This must stop, because their OPINIONS are putting

> patients health at serious risk. I think this is perhaps one of the MAIN

> messages we have to get over. Their 'Guidance on the Diagnosis and

> Management of Primary Hypothyroidism has NOT been backed with scientific

> evidence.

>

July 21, 2010

You may well find that if you need your health back desperately

enough Lolly, you are going to have to do this yourself, with the help of TPA

members and our medical advisers, plus all the information we have collected to

help you do this.

There IS light at the end of the tunnel.

Luv - Sheila

Hi Sheila,

Thank you for yoru great advise I will follow up with this I am also in a

predicatment when it comes to recognising the FT3 test and having to pay out of

pocket for it, I wasn't orignally dx with hypothyrodism but Graves disease

(Hyperthyrodism) and TED and after having surgery TT for a suspicious nodule.

I have been treated so much worse now than when I was hyperthyroid T4

Levothyroxine treatement is doing nothing for me each lab test I have to have

some kind of adjustment when really I should be on a combo of T3 and T4 but

will anyone do it No.

My arguement here is that Levothyroxine as a single treatment for

Hypothyroidism isn't really the right solution for many of us as evidence does

show not just what the BTA,RCP state and it's about time they listened to

patients and recognised the scientific evidence to support this.