Petition for Better Thyroid Disease Testing and Education

[Mod]

Mottatt idag:

Dear Thyroid Patient Advocates:

We are asking for a minute of your time to sign and share the petition: "Endocrinologists: Patients with Thyroid Dysfunction Demand Better Care." http://www.change.org/petitions/endo...better-care?=1 . Would you please consider signing and sharing this important cause with your network? We need more signatures to receive the credibility that thyroid patients deserve! Thank you, if you have already signed and supported this cause!

About the Petition: This petition, which has had tremendous momentum and already 2,800 supporters, demands endocrinologists to be sufficiently trained and up-to-date on the diagnosis, assessment and treatment of various thyroid disorders. The petition uses international patient experience to justify it’s request and hopes that patient voices will effect change. Please note that this is not a petition against physicians or endocrinologists. It is simply an appeal for collaboration and listening to patient experiences for a change in thyroid care.

Noteworthy Supporters: Since it's conception on May 1, the initiative already has the support from many international organizations including, but not limited to: Thyroid Association of New Zealand, Thyroid Patient Advocacy (TPA) and the International College of Integrative Medicine. The initiative has also received support from many noteworthy individuals and physicians of thyroid health including singer/song-writer Toni Childs, Janie Alexander Bowthorpe (Stop the Thyroid Madness) and Dr. Alan Christianson (The Complete Idiot’s Guide to Thyroid Disease).

As with any petition, it needs LARGE numbers to make a difference! We are hoping to obtain your support.

Would you please consider signing and sharing this important cause with your group? Change is needed! If you have already signed the petition, thank you! Feel free to forward this message to those you know, or post it to your network of friends.

Best Regards,
Michelle/Denise
"Patients with Thyroid Dysfunction Demand Better Care"

Petition Website: http://www.change.org/petitions/endo...nd-better-care

Petition Facebook Page: http://www.facebook.com/thyroidpetition

Petition Facebook Forum: http://www.facebook.com/groups/464149450266190/

[Vigdis]

Nå foreligger teksten også i dansk oversettelse

Endokrinologer: patienter med dysfunktion i skjoldbruskkirtlen kræver bedre behandling

Skjoldbruskkirtelpatienter bliver mere og mere bevidste om, at der er en mangel i viden om skjoldbruskkirtlen blandt endokrinologer. Titlen endokrinolog, specialist i det endokrinologiske system, udtrykker ekspertise og overskud af erfaring. Til trods for den lovende titel, er vi, patienterne med dysfunktion i skjoldbruskkirtlen, stadig i nød. Vores livskvalitet er forringet på grund af de problemer vi har med at finde læger som er effektive i behandlingen af skjoldbruskkirtlen. Patienters erfaring ser ud til at vise, at der er et stort antal endokrinologer som ikke er i stand til at diagnosticere sygdom i skjoldbruskkirtlen og/eller har en forældet viden om behandlingsmetoder.

Vær så venlig at signere denne underskriftsindsamling i et forsøg på at øge bevidstheden om dette problem og forhåbentlig generere forandring. Spred siden budskabet så at andre kan deltage. Brug: e-mail, twitter, anbring underskriftsindsamlingen i dine støttegrupper og på din Facebook profil. ”Syns om” os på https://www.facebook.com/thyroidpetition. Vi har brug for en stor støttebase for at opnå den troværdighed vi fortjener.

Denne underskriftsindssamling forlanger, at der bliver taget affære angående følgende:

1) Læger må bevise sagkyndighed i diagnosticering og behandling af skjoldbruskkirtlens sygdomme INDEN de modtager deres afgangsbevis i endokrinologi. Den eksisterende eksamen kunne være mere omfattende og have en del som inkluderer brug af test af frit T3, frit T4, reverse T3, skjoldbruskkirtlens antistoffer med samt TSH. Endokrinologer må også være sagkyndige i brugen af skjoldbruskkirtelmedicin, som inkluderer brug af behandling med naturlig skjoldbruskirtel, T3 alene, T4 alene og kombinationsbehandlinger.

2) Eksaminerede endokrinologer som behandler sygdomme i skjoldbruskkirtlen må holde sig orienteret om nuværende behandlingsmetoder inden for området. Disse behandlingsmetoder må inkorporeres i det allerede etablerede medicinske uddannelsessystem. Endokrinologer må løbende efteruddanne sig for at kunne bevare sit certifikat i endokrinologi. Det er utilgiveligt at de behandler skjoldbruskkirtelpatienter uden at læse om nuværende praksis i faget som f.eks. brug af naturligt skjoldbruskkirtelhormon, medicinering med T3 alene og behandling med kombination af T3/T4.

Mange patienter taler om det utilstrækkelige i kun at behandle med syntetisk T4 medicin. Patienter på naturligt skjoldbruskkirtelhormon fortæller typisk om forbedringer i deres livskvalitet. Patienter der bruger T3/T4 kombinations behandling, eller T3 alene beretter også om forbedringer modsat det at være på syntetisk T4 alene. Alligevel er en recept på syntetisk T4 sædvanligvis de eneste der overvejes. Dosis på recepten er baseret på TSH tallets niveau . Patienter rapporterer at TSH niveauet ikke nødvendigvis svarer til symptomer. Således kan en patient have et TSH tal inden for norm, og alligevel være underbehandlet. Nye prøver som frit T3, reverse T3 og frit T4 fortæller en afslørende historie; alligevel bruger endokrinologer generelt ikke disse tests. I stedet tester de for totalt T4 og totalt T3, men disse angiver ikke hvilke hormoner er frie og til rådighed i kroppen.

Patienter med dysfunktion i skjoldbruskkirtlen klager over problemer med humørsvingninger og sløvhed. For at råde bod på dette anbefaler endokrinologer anti- depressiv medicin eller henviser os til en psykiater. Dette er en parodi og en forsømmelse. Forskning viser forbedring af depression ved brug af T3 medicin. Alligevel er det en udfordring for skjoldbruskkirtelpatienter, at finde en endokrinolog som er villig til at udskrive Cytomel eller naturligt skjoldbruskkirtelhormon, som indeholder T3. Det at endokrinologer ikke opfatter skjoldbruskkirtelpatienters psykologiske og systemiske symptomer som dysfunktion i skjoldbruskkirtlen, forlænger uendeligt patientens sygdom. Dette fører sædvanligvis til udskrivning af medicin der måske lindrer de omtalte symptomer, men ignorerer den oprindelig årsag; den dårligt ordnede skjoldbruskkirtel.

Dysfunktion i skjoldbruskkirtlen og ineffektiv behandling af samme sættes også i forbindelse med højt kolesterol. Når en patient har højt kolesterol, udskriver endokrinologer farligt statin når et supplement af T3 kan sænke vores kolesterol mere sikkert.

Endokrinologer er muligvis dygtige til diabetes og innovative i dette sub-speciale, men de ser ud til at mangle viden og ekspertise i skjoldbruskkirteldiagnose og behandling. Dette er uacceptabelt. Som resultat bliver patienter nødt til at selv at uddanne sig, selv-medicinere, eller værre, modtage utilstrækkelig behandling og lide unødvendigt.

Mange patienter føler sig svigtet af sundhedsvæsenet og vender sig mod online kilder og udveksler viden. En sådan online kilde er en metode, T3CM, udviklet af Poul Robinson, som har skabt og publiceret en metode om at administrere skjoldbruskkirtelhormon, hovedsageligt T3, efter døgnrytme. Patienter finder lindring med hans T3CM metode. Poul Robinson er ikke læge, men en patient, som har lidt i over 20 år af en utilstrækkelig skjoldbruskbehandling.

Denne underskriftsindsamling henleder en fortjent, offentlig opmærksomhed på en undergrundsbevægelse, skabt af patienter. Dette er en international patient revolution, og vi kræver forandring. Det er utilgiveligt at patienter vedvarende møder endokrinologer som forlænger deres sygdom med ufuldstændig, eller forældet viden.

Hver underskrift i denne erklæring, repræsenterer en patient, eller en person som elsker en patient, som er blevet misdiagnosticeret, forkert behandlet eller affærdiget af deres endokrinolog. Der må være nogen, som lægger mærke til og hører vores stemme. Læs vores historier. Vi beder kollektivt vores endokrinologer, at høre vores opråb. Denne underskriftsindsamling er vores initiativ til at genetablere vores tillid til vores læger. Vi tror på, at med opmærksomhed vil der komme forandring. Hjælp os med at slutte unødvendige lidelser hos skjoldbruskkirtelpatienter i hele verden.

Skrevet af: Michelle Teresa Bickford

Redigeret af: Denise Rodriguez

[Mod]

20-07-2012 16:23, Change.org :

Hello!

Our petition has amassed almost 3700 signatures in less than 12 weeks. This amazing momentum inspired a brand new collaborative effort, a web-based initiative to unite our voices and create global strength:

Thyroid Change www.thyroidchange.org

You will quickly see the uniqueness of our site in that we are seeking to encourage the individual patient to become a self-advocate while uniting and supporting all of us (patients, organizations, groups, blogs and physicians). Please use this site to your benefit. You can find the latest research articles, utilize our resources or refer someone to our "Find a Doctor" page.

While visiting our website, please check out our section entitled, "Voices of ThyroidChange." If you are so inspired, let us share your voice! If you can enhance our site with information, especially on how to find a doctor who meets our criteria, please submit via our contact page.

After visiting our site, please "like" our Facebook page (www.facebook.com/thyroidchange), the join our conversation in our Facebook Forum(www.facebook.com/groups/464149450266190)

Please spread the word of ThyroidChange! Our success is dependent on the union of the worldwide thyroid community.

Thank you for your continued support as we evolve. Together, we will create a brighter future for thyroid patients, and increase the success of each of our initiatives.

Cheers!

Michelle & Denise

Hello ThyroidChange.org

We have supported the Petition and do not mind supporting you, but we simply do not believe that the organization will make a difference.

Unlike in the past, where we only had to fight the ignorance and hostility of medical profession - we must now fight against the "invisibility" in which the majority of thyroid groups now exist. We do not need to convince them. They are already convinced. We need to convince those in the outside world, where public opinion belongs, and where makers of decision and formers of opinion are.

The majority of thyroid groups are shut out of public access, and therefore are they and their cause useless on the socio-political or medical-political arenas.

We simply do not believe that thyroid patients, as individuals or as groups, ever going to change anything as long as the preference for closed groups is maintained.

Please check all your supporters and you will find that you are supported by an army of shadows without influence on the world outside their own circles. Our problem is simply that any real change needs to be done transparently and in full public view in the real world, where makers of decision and formers of opinion are...

The closed group is also a hiding place for many of those who are passive, while the few in the foreground always performs all the work. Until they burn out. And the cause burns out with them. We have witnessed many similar stories through years and years, and we have no reason to believe that it will be different in future. Not as long as the cause is handled by closed groups.

The world is not on Facebook and in other closed groups. We can only meet the world outside. If this is the real world we wish to meet. Our forum is not on Facebook and will never ever get on Facebook, because on Facebook, we can not do nearly as much difference as we do outside on the open Internet.

Our users are always told that we do not create private groups and all experience and information must always be publicly available. It is the condition for being able to create a profile and we would heartily recommend to ThyroidChange.org , that you also consider the introduction of transparency-rules before ThyroidChange.org can get a chance to succeed.

Without it, every organization will die, as it has already happened before to many websites, forums and movements.

Best Wishes
https://www.stofskifteforum.dk