Help with a petition for those of us ... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,350 members10,538 posts

Help with a petition for those of us with Thyroid problems, alongside our Hughes Syndrome/APS

MaryF profile image
MaryFAdministrator
4 Replies

I know from my own experience with drug allergy, serious at times, that one size does not fit all. For those of us with terrible allergy problems to have a choice of treatments is a good thing.

This petition put forward as a call to action from Louise/TUK is valid, in order for patients to have choice, the option currently of a very narrow choice of testing and medication is not suiting everybody so.....

via Louise/TUK

Hi All

Following on from a recent thread about petitions, I looked into the possibility of re-submitting our petition which ran in 2011/2012 and ended at just over 5,000 signatures.

I have now submitted the petition and it has been accepted......!!!

SO - this is a call to action! :)

Sign it, share it, Tweet it, FB it, add it to your email signature.......! If we can get 10,000 signatures, we can expect a response. If we can get 100,000 it may be debated in the House of Commons.

epetitions.direct.gov.uk/pe...

Petition:

Fund research into T3 and/or natural desiccated thyroid treatment for hypothyroidism

Responsible department: Department of Health

Many patients with hypothyroidism continue to have symptoms on levothyroxine (T4) but find that their symptoms are often greatly reduced when they take liothyronine (T3) or natural desiccated thyroid.

Natural desiccated thyroid is only manufactured in the US and Canada but can be prescribed in the UK on a “named patient” basis. Many doctors will not prescribe it because there are no randomised controlled trials as it was manufactured before licensing of medicines came into being.

Research has shown that some patients have benefited from natural desiccated thyroid but there needs to be more research done to investigate whether this would be a better treatment for patients.

More research also needs to be done on the addition of T3 to T4 because previous research has been inconclusive.

Written by
MaryF profile image
MaryF
Administrator
To view profiles and participate in discussions please or .
Read more about...
4 Replies

Done! :)

MaryF profile image
MaryFAdministrator in reply to

Thank you, lots of people are signing and sharing now! 754 signatures in less than 24 hours so a good start. MaryF

AvsG profile image
AvsG

Signed! Last year I started taking T3 and T4. I was lucky to find a Consultant that listened!

MaryF profile image
MaryFAdministrator in reply to AvsG

Great news, really pleased for you. Please share it about the place if you can! MaryF

You may also like...

Lets not forget about this very helpful petition started Re: Hughes Syndrome

more signatures: Let's give it a leg up!...

e-Petition for Hughes Syndrome recognition

system and needs reforming. http://epetitions.direct.gov.uk/petitions/34232

Hughes Syndrome/APS on the tv tonightI

cats.. Just watching Casualty on BBC1 featuring a patient with APS, MaryF x probably can only be...

e-petition to get recognition for Hughes Syndrome

system and needs reforming. http://epetitions.direct.gov.uk/petitions/34232

The Seronegative Hughes Syndrome/APS book idea is back on

together regarding the awful dilemma surrounding patients who get caught in 'limbo' due to perhaps...