Petition for Better Thyroid Disease Testing and Education

**Mod** · 15-05-12, 14:06

Mottatt i dag:

Dear Fellow Thyroid Advocate and Website Owner:

Please consider signing the thyroid-care petition below and sharing with your group list. Change is needed and we would love to have a global representation with as many signatures as possible!

As you know, millions of people are suffering from undiagnosed thyroid conditions because of doctors who fail to stay current in thyroid testing. The petition will be sent to numerous professional endocrinology and thyroid organizations world-wide. The petition site's host guarantees anonymity and any personal Information will not be shared with third parties without consent.

Sixteen doctors later in 3 different states, I finally received a diagnosis. I know there are many more who share my story. It is truly a crying shame and I ask you to please consider signing and sharing this petition. Thank you in advance.

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

Sincerely,
Denise Fleming
Thyroid Patient, Advocate
Memphis, TN (USA)

Relatert:
The International Hormone Society:
Consensus # 1 International Thyroid Patient Organisation (ITPO)
PATIENTS' PETITION FOR BETTER DIAGNOSIS AND TREATMENT CHOICE FOR HYPOTHYROID PATIENTS

**Mod** · 18-05-12, 05:26

Opprinnelig skrevet av Mod

Mottatt i dag:

Dear Fellow Thyroid Advocate and Website Owner:

Please consider signing the thyroid-care petition below and sharing with your group list. Change is needed and we would love to have a global representation with as many signatures as possible!

As you know, millions of people are suffering from undiagnosed thyroid conditions because of doctors who fail to stay current in thyroid testing. The petition will be sent to numerous professional endocrinology and thyroid organizations world-wide. The petition site's host guarantees anonymity and any personal Information will not be shared with third parties without consent.

Sixteen doctors later in 3 different states, I finally received a diagnosis. I know there are many more who share my story. It is truly a crying shame and I ask you to please consider signing and sharing this petition. Thank you in advance.

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

Sincerely,
Denise Fleming
Thyroid Patient, Advocate
Memphis, TN (USA)

Relatert:
The International Hormone Society:
Consensus # 1 International Thyroid Patient Organisation (ITPO)
PATIENTS' PETITION FOR BETTER DIAGNOSIS AND TREATMENT CHOICE FOR HYPOTHYROID PATIENTS

Mottatt i dag:

The following message was sent to you via the Sonjas Stoffskifteforum Contact Us form by Denise Fleming:

Kjære "Thyroid Friends":

I et forsøk på norsk ...

Kan du vurdere å undertegne oppropet nedenfor og dele med nettverket? Endringen er nødvendig og vi vil gjerne ha representasjon fra Norge!

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

Thank you for your help in sharing this with your members!

Vennlig hilsen,
Denise Fleming
Thyroid Pasient, Advocate
Memphis, TN (USA)

Dear Denise

We have already passed information about the petition to our users and guests.

The information found on our front page and on this link: https://www.stofskifteforum.dk/showthread.php?t=14629

Unfortunately, those who are sick of hypothyroidism in Scandinavia in general is doomed to treatment with T4 alone, and what this eventually does to the initiative and hope for better future, you probably know very well, so it is uncertain how much response we can count on.

Thank you for your great work.

Sincerely
Sonjas Stoffskifteforum
Norway

**Mod** · 20-05-12, 15:35

Dear Denise

We have already passed information about the petition to our users and guests.

The information found on our front page and on this link: https://www.stofskifteforum.dk/showthread.php?t=14629

Unfortunately, those who are sick of hypothyroidism in Scandinavia in general is doomed to treatment with T4 alone, and what this eventually does to the initiative and hope for better future, you probably know very well, so it is uncertain how much response we can count on.

Thank you for your great work.

Sincerely
Sonjas Stoffskifteforum
Norway

Subject: Re: Sonjas Stoffskifteforum Contact Us Form - Please share this with your members....
Date: Fri, 18 May 2012 09:22:10 -0500
From: Denise Fleming <denise.fleming@gmail.com>

Dear Sonjas,
Thank you very much for posting this informing on your forum in Norway! It is our sincere hope that by gathering as many signatures as possible, that we will increase awareness about proper treatment of thyroid disease and place pressure on endocrinology organizations that mandate the current standards for thyroid care.

Thank you again for sharing this information. We have received a tremendous response already!

Best Wishes,
Denise

**Vigdis** · 28-05-12, 07:44

En svensk venn har oversatt hele teksten til svensk. Jeg håper at mange som ikke klarer å lese engelsk så godt, får med seg det meste på svensk

Sköldkörtelpatienter blir allt mer medvetna om att det finns en brist i kunskap om sköldkörteln bland endokrinologer. Som specialister på det endokrina systemet och titeln, endokrinolog, står för kompetens och rikedom i erfarenhet. Trots det hopp titeln inger lider vi patienter med dysfunktion i sköldkörteln fortfarande. Vår livskvalité minskas på grund av svårigheterna vi har att hitta läkare som på ett framgångsrikt sätt kan hantera vår sköldkörtelproblematik . Patienternas erfarenheter tycks visa att det finns ett stort antal endokrinologer som inte kan diagnostisera sköldkörtelsjukdom och/eller har föråldrade kunskaper om behandlingsmetoder.

Vänligen underteckna detta upprop i ett försök att öka medvetenheten om detta problem och förhoppningsvis åstadkomma förändring. Sprid detta till andra och be dem ansluta sig till oss genom: e-post, twitter, skicka denna namninsamling till dina stödgrupper och Facebook-profiler. "Gilla" oss på https://www.facebook.com/thyroidpetition . Vi behöver en stor förankring för att få den trovärdighet som vi förtjänar.

Namninsamlingen kräver följande åtgärder:

1) Läkare måste visa kunskaper i diagnostik av och behandlingar i sköldkörtelns sjukdomar INNAN de får sin examen i endokrinologi. Detta blir en mer omfattande del av den befintliga medicinska undersökning som innefattar testande av Fritt T3, Fritt T4, Omvänd T3/rT3, sköldkörtelns antikroppar och TSH. Endokrinologer bör också ha goda kunskaper i behandling av sköldkörtelproblem som innefattar användning av medicinering med naturligt torkad sköldkörtel, medicinering av T3 (Liothyronin det svenska medicinska motsvarande märket) enbart , medicinering med T4 (Levaxin det svenska medicinska motsvarande märket) enbart samt kombinationsbehandlingar.

2) Endokrinologer som behandlar sköldkörtelsjukdom måste hålla sig uppdaterade om aktuella behandlingar för sköldkörtelsjukdom. Sådana behandlingar bör införlivas i de etablerade medicinska utbildningsprogrammen. Fortbildning inom detta område bör bibehållas för att erhålla examen i endokrinologi. Det är oförlåtligt att endokrinologer behandlar sköldkörtelpatienter inte kan nuvarande praxis gällande användning av naturliga sköldkörtelhormoner, T3 (Liothyronin) enbart och medicinering av T3(Liothyronin) och T4 (Levaxin) i kombinationsbehandlingar.

Patienter talar ut om bristerna med att använda enbart T4 (Levaxin), syntetisk medicinering. Patienter som använder naturligt sköldkörtelhormon berättar om genomgående förbättringar av kvaliteten på deras liv. Patienter rapporterar även om förbättringar av att använda T3/T4 (Liothyronin/Levaxin) i kombinationsbehandlingar eller T3 (Liothyronin)-behandlingar enbart, i motsats till att använda syntetiska T4 (Levaxin) enbart. Syntetiska T4 (Levaxin) är oftast den första medicin man får på recept. Doseringen på receptet är baserat på TSH-provsvarets nivå. Patienter rapporterar att TSH-nivån inte nödvändigtvis korrelerar med deras symtom. Således kan en patient ha en nivå för TSH inom referens, men fortfarande vara underbehandlad. Nya tester, såsom fritt T3, reverse/omvänt T3 och fritt T4, avslöjar en del information, men endokrinologer utnyttjar i allmänhet inte dessa tester. Istället testar de för totalt T4 och Totalt T3, men dessa kvantifierar inte vad hormoner är fria och tillgängliga i kroppen.

Patienter med dysfunktion i sköldkörteln klagar på svårigheter med känslosvängningar och utmattning. För att råda bot på detta rekommenderar endokrinologer anti-depressiva mediciner eller hänvisar oss till psykiatriker. Detta är en travesti och ett misstag. Forskning visar på en förbättring av depressioner med behandling av T3-medicinering. Sköldkörtelpatienter tycker att det är svårt att hitta endokrinologer som är villiga att förskriva T3 (Liothyronin), eller naturligt torkad sköldkörtelmedicin som innehåller T3. Att som endokrinolog inte klara att koppla psykologiska och systemiska symtom hos en sköldkörtelpatient till en dysfunktion i sköldkörteln vidmakthåller patientens sjukdom. Detta leder vanligtvis till ordination av läkemedel som ev. kan lindra de rapporterade symtomen, men ignorerar den grundläggande orsaken, en misskött sköldkörtel.

Dysfunktion i sköldkörteln och ineffektiv behandling av den korrelerar också med höga kolesterolvärden. När en patient har högt kolesterolvärde förskriver endokrinologer farliga statiner när behandling med tillskott av T3 (Liothyronin) istället kan sänka vårt kolesterol säkrare.

Endokrinologer kan vara skickliga gällande diabetes och vara innovativa i denna sido-specialitet, men tycks sakna kunskap och expertis i diagnoser och hantering av sköldkörtelsjukdomar. Detta är oacceptabelt. Som ett resultat tvingas patienter att själv utbilda sig, lägga upp egna behandlingsplaner eller ännu värre, få otillräcklig behandling och lida i onödan. Många patienter känner sig svikna av sjukvården och vänder sig till källor på nätet där de delar kunskap. En sådan online-källa är en metod uppfunnen av Paul Robinson. Han har utvecklat och publicerat en metod för att administrera sköldkörtelhormon, främst T3 (Liothyronin), enligt vår dygnsrytm, även kallat T3CM i en förkortning. Patienterna upplever lindring med hjälp av hans T3CM-metod. Paul Robinson är inte en läkare, han är snarare en patient som har lidit under tjugo år av otillräcklig sköldkörtel-behandling.

Denna namninsamling har som syfte att föra den underjordiska rörelse som skapats av sköldkörtelpatienter den breda uppmärksamhet som den förtjänar. Detta är en internationell patientenrevolution och vi kräver förändring. Det är oförlåtligt att patienter ständigt stöter på endokrinologer som vidmakthåller deras sjukdomar av otillräcklig eller föråldrad kunskap.

Varje underskrift på detta upprop är en patient eller en person som älskar en patient som har fått fel diagnos, blivit illa behandlad eller avvisad av sin endokrinolog. Någon måste ta börja bry sig och göra våra röster hörda. Läs våra berättelser. Vi ber kollektivt våra endokrinologer att höra vår vädjan. Denna namninsamling är vårt initiativ för att återställa vår tro på våra läkare. Vi tror att med medvetenhet kommer förändring. Hjälp oss få ett slut på onödigt lidande bland sköldkörtelpatienter över hela världen.

Så bønnfaller jeg dere alle om å følge linken og underskrive! Kanskje administrasjonen kan gjøre noe slik at denne aksjonen kan bli liggende øverst på forsiden en stund, slik at den ikke blir glemt?

**Vigdis** · 06-06-12, 07:34

Et fint intervju med en av initiativtageren til denne aksjonen ligger på denne bloggen http://sarahjdowning.com/2012/06/05/...d-better-care/

Anbefales som lesning

**Vigdis** · 08-06-12, 16:54

This petition is representative of an international effort by patients with thyroid disorders/dysfunction (PTD) for better standards of care from endocrinologists. Past the words and signatures, is a growing community that is thriving and united in a shared journey that values a better future. As PTD receives public announcements of support from various individuals, we will post them in this note for your awareness and we, in turn, can choose to support our supporters. This is our global network to demand better!

Toni Bernhard is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and a former law professor at U.C. Davis School of Law. Ms. Bernhard is the recipient of two 2011 Nautilus Book Awards and Best 2010 Spiritual Book Award in the 'Health' category by Spirituality and Practice. http://www.howtobesick.com

Janie Alexander Bowthorpe, author of Stop the Thyroid Madness: a Patient Revolution Against Decades of Inferior Treatment is a thyroid patient activist, blogger and creator of the informational patient-to-patient website, Stop the The Thyroid Madness! and numerous patient forums devoted to thyroid disease. http://www.stopthethyroidmadness.com

Toni Childs, singer/songwriter, Emmy winner and Grammy nominee, is best known for her songs "Don't Walk Away" and "I've Got To Go Now". Ms. Childs has struggled with thyroid disease for many years and is presently in remission from Graves Disease. She is currently finalizing her new album, Citizens of the Planet. http://www.tonichilds.com

Dr. Alan Christianson, specializes in endocrinology (specifically thyroid disorders) and pain management in Scottsdale, Arizona. He is a 2011 Phoenix Magazine Top Doc recipient, co-author of The Complete Idiot’s Guide to Thyroid Disease and founded Integrative Health in 1997. Dr. Christianson is also a thyroid patient advocate, currently promoting thyroid disease awareness with actress/thyroid patient advocate Gena Lee Nolin. http://myintegrativehealth.com/our_d...n_christianson

Dr. John Vlok Dommisse practices Nutritional and Metabolic TeleMedicine, as well as local, in-person medicine, in Tucson, Arizona. Previously, Dr. Dommisse spent eighteen years in hospital and private practice in Portsmouth, Virginia and as faculty at the University of Toronto. Dr. Dommisse is the author of numerous scientific publications, and also authors The Natural Medicine Newsletter, highlighting cures for chronic fatigue syndrome and autoimmune patients. http://www.johndommissemd.com

Dr. Rommel Geronimo, founder and practicing physician at Functional Endocrinology Center of San Diego, specializes in the management of autoimmune hypothyroid disorders also known as Hashimoto's. Dr. Geronimo has also studied under Dr. Kharrazian, author of "Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal? http://www.fecsd.com

Dr. Sarah Myhill is qualified from the Middlesex Hospital Medical School, London, England. Since then, she has worked continuously in NHS general and private practice. Dr. Myhill specializes in Allergy, Nutritional and Environmental (Ecological) Medicine. She has a special interest in treating chronic fatigue syndrome and estimates that she has seen over 5000 patients with CFS. She is also co-author of an article that the International Journal of Clinical and Experimental Medicine has published online (January 2009) regarding CFS. http://www.drmyhill.co.uk

Dr. Aldino Pierotti, III, is the Medical Director of the Anti-Aging & Longevity Center of Pittsburgh, PA. Dr. Pierotti is a board prepared diplomat in Surgical Critical Care and was a practicing trauma/critical care and emergency physician before changing his focus to Metabolic and Integrative Medicine in 2005. Dr. Pierotti specializes in treating fatigue syndromes, fibromyalgia, sleep disorders, hormone imbalance, immune dysfunction, and infectious diseases. http://www.antiagingpittsburgh.com

Paul Robinson, author of Recovering With T3: My Journey from Hypothyroidism to Good Health Using the T3 Thyroid Hormone, has developed a treatment protocol which includes: 1) an effective way of using T3 thyroid hormone to address the needs of people who continue to experience symptoms of hypothyroidism when on T4-based medication. 2) a revolutionary and successful approach which improves adrenal function by utilizing the natural circadian rhythm of adrenal hormone production called the Circadian T3 Method (CT3M or T3CM). http://www.recoveringwitht3.com.

Dr. Wm. Marcus Spurlock, is the medical director of Renewed Vitality in Dallas, TX. A board certified family physician, Dr. Spurlock has many years experience dealing with Fibromyalgia and Chronic Fatigue Syndrome. He has worked for over 17 years in the field of viral diseases, and from 1984-1994, he was associate professor at Louisiana State University School of Medicine in Shreveport as a Family Practice Preceptor in the Comprehensive Care Clinic. http://www.renewedvitalitymd.com

THANK YOU FOR YOUR SUPPORT!

**Admin** · 08-06-12, 17:21

Opprinnelig skrevet av Vigdis

Så bønnfaller jeg dere alle om å følge linken og underskrive!

Hej Vigdis (og andre)

Vi har lånt citatet til en anden tråd her: https://www.stofskifteforum.dk/showthread.php?t=14700 . Lidt stof til eftertanke. Håber folk kommer med kommentarer til vores overvejelser....

**Mod** · 21-06-12, 06:37

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/

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