Where to talk to other patients
NEED PATIENT-TO-PATIENT SUPPORT AND FEEDBACK?
with Janie A. Bowthorpe, M.Ed, the creator of STTM and observer and messenger of patient experiences for over 13 years. Read about it here.
POSITIVES ABOUT GROUPS: Informative admins, potential for good friendships, for patients ONLY.
RULES ABOUT MOST GROUPS: NOT for medical professionals, NOT for business promotion or mention of ANY kind, NOT to be a substitute for a relationship and guidance from a good doctor. Work with your doctor!
DISCLAIMER: By using any patient discussion groups, you are agreeing that it’s at your own risk, and that STTM and anyone related to STTM takes no responsibility for decisions you decide to make by using them. Work with your doctor’s guidance–groups are NOT supposed to replace that. The list below is not in any order. You just need to find the one that you like the best…for YOU!
A. Internet discussion groups (non-Facebook, run by patients, for patients)
- Natural Thyroid Hormones International Yahoo group (NTH): This friendly and helpful yahoo group was started by Janie in 2002, continuing strongly today as patient-to-patient with excellent moderators, and focuses on the use of desiccated thyroid or T3 rather than T4-only. You have to request membership and give information about yourself. For Patients Only.
- NTH Europe Yahoo group: This NTH group was started in 2010 and specifically for Europeans-only to discuss finding good doctors, good clinics and the use of natural desiccated thyroid or T3, etc in Europe. You will need to prove you are in Europe when you ask to join, otherwise, you will not be approved. Once in this group, you’ll see mention in the Files of Sheila’s TPA-UK group, another good one. For Patients Only.
- NTH Children Parents Group: Started in April 2011, and specifically for parents or legal guardians of children who are hypothyroid, or you suspect they might be. Do not ask to join if you don’t have children. Requires approval of your membership request. For Parents Only. You need to be working with a doctor for your children–this should NOT replace that.
- T3CM for low morning cortisol This patient-to-patient group focuses on the T3 Circadian Method, but also looks at many issues around adrenal function, including MTHFR, HPA feedback loop and more. You cannot have hypopituitary, Addison’s or untreated Diabetes for this to work.
B. Facebook FTPO (For Thyroid Patients only) discussion groups
NOTE: Janie does not run these groups, nor approve memberships. They are run by a management team of very wise patients. You will see Janie’s name as an Admin in these groups—that is simply from before when she used to manage them.
These groups attempt to provide “solid, repeated patient experiences and wisdom”, both in the past (which is solid) and which is still being learned today in new ways. They are “closed groups”, which means no one outside the group can see your post. NOTE: You won’t be approved unless the admins can see EITHER your friends list or your wall posts. You can close them up after approval.
Remember: NOT to be a replacement for the relationship and guidance you have with your doctor. Information only to help you in working with your doctor’s guidance. You agree that participating in patient groups is at your own risk.
- FTPO THYROID TOPICS international discussion group A friendly and large, international patient group for good feedback and support about thyroid issues, run by patients just like you. If you are in Australia, UK or Canada, see your specific groups below. NOTE: this Thyroid Topics group is a new one and replaces the 24,000+ member group, which is not seen anymore.
- FTPO ADRENALS discussion group for use of HC, adaptogens, ACE, etc. Discusses issues related to adrenals, aldosterone, symptoms, HC, adaptogens, ACE, glandulars, etc.
- ** new as of 2016 FTPO 60 YEARS AND OVER THYROID PATIENT group Specifically for thyroid patients who are 60 years of age and older. We can’t approve you if you are 59, 58, 57…and younger. Please use the other groups.
- FTPO T3-ONLY For those who have reason to be on T3-only..
- FTPO GUT issues group Specifically for those who have gut issues of any kind, or gluten Intolerance or Celiac. Great recipes and links are shared here.
- FTPO WITHOUT A THYROID group Specifically for those without a thyroid talking about unique issues because of being thyroidless, plus about RAI, thyroid surgery, and better thyroid medications, etc.
- FTPO THYCA group For those who have thyroid cancer, or are a survivor of thyroid cancer! Discussion on the different types, treatments, challenges and more.
- FTPO LYME group For those who as suspicious or have confirmation of having the bacteria related to Lyme. This Lyme group attempts to be open-minded about treatments and positive.
- FTPO Parents of Hypothyroid Children’s group–for parents of children who are hypo. You can share your concerns about your children.
- FTPO OFFICIAL SEX HORMONES group (as related to your hypothyroid condition) For those with hypothyroid and hormonal issues. This was re-established to be a more open-minded and friendly group. Enjoy!!
- FTPO CANADA Thyroid group For Canadians only.
- FTPO UK and EUROPEAN THYROID group Specifically for those who live in Europe and who want to chat about issues related to their counties and regions.
- FTPO AUSTRALIA THYROID group For those in Australia who want a friendly and informative nature to their discussions!
- FTPO SPANISH ONLY THYROID group Strictly spanish speakers.
C. More Good Groups (discussion or information):
- STOP THE THYROID MADNESS FACEBOOK PAGE Here you will find posts which are pertinent information pertaining to patient experiences and wisdom. Patients can comment on posts. Medical professionals welcome if you are eager to learn from patient experience and wisdom, but advertising your business or products is not welcome.
- STOP THE THYROID MADNESS POETRY PAGE A place to share your creative poetic spirit about your hypothyroid experiences. Humor appreciated! Artistic drawings also welcome if they pertain to hypothyroidism.
- PARATHYROID CONNECTIONS–a Facebook discussion group Know or suspect you might have a parathyroid problem? This is where you go to get excellent information and support. Not connected to STTM.
- CONGENITAL HYPOTHYROIDISM Facebook discussion group This is for parents who through a newborn screening discovered that their baby was born with a deficiency of thyroid hormones. Not connected to STTM.
- IODINE 4 HEALTH Facebook discussion group Run by Stephanie Buist who has been involved in iodine information for years.
- IODINE WORKSHOP Facebook discussion group Run by Lynne Farrow, author of the The Iodine Crisis, plus Lynn Rasaitis. A very open-minded and excellent group on iodine. And this one: https://www.facebook.com/groups/IodineProtocols/
- LDN (Low Dose Naltrexone) Research Trust As of January 2016, it was decided this is quite the dynamic LDN site on Facebook where you will get solid information on the use of LDN, which those with Hashimotos find useful in lowering antibodies.
- MTHFR AND MORE Facebook group This friendly group is run by the dynamic Paige Adams, FNP, also a contributor to the STTM II book. She is and owner of The Center for Proactive Medicine in Nashville, TN, which has a Facebook page as well.
- UNITED KINGDOM TPA-UK internet group Specifically if you live in the UK, this group is run by the dynamic Sheila of TPA-UK.
- T3 CIRCADIAN METHOD Facebook discussion group This is based on what Paul Robinson of the UK discovered in using T3 in the early morning hours to stimulate the adrenals to produce more cortisol. Not connected to STTM.
- PERNICIOUS ANEMIA/B12 DEFICIENCY Facebook discussion group Have heard good things about this group. Not connected to STTM.
- STTM Blog Here is a place where you can read what’s on Janie’s mind or Guest posts for several years, and can comment! This is not a place for questions, just comments. But you can read what others are saying. Sign up with the Blog notification at the bottom of this page, which will send you an email when Janie posts. If you want to comment, click on the title of the blog post.
- New Zealand Facebook group Heard good things? But do let me know. Not connected to STTM.
***Know other good patient groups related to thyroid or issues associated?
- Life Coaching: Need to talk to someone about where you are going with your life, career, etc? This is a Life Coach I trust and recommend. He attended the Institute for Professional Excellence in Coaching and focuses especially on high achieving creative minded types. To learn more about life coaching and to get a free sample session, click on the underlined link and tell him I sent you.
- Web Content and Coding Consultation: A highly recommended consultation when you need help with content management within WordPress, web coding, help with fixing your site if it just doesn’t look right to you, and recommendations on what you need, how much it’ll cost and how long it’ll take. This is done by the guy who helped create the STTM website.
LAB WORK packages designed specifically for readers of Stop the Thyroid Madness with good prices–STTM Thyroid and Adrenal Lab Packages