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 14 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 listed here, you are agreeing that it’s at your own risk and you take full responsibility for that fact. STTM takes no responsibility for decisions you 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. Facebook FTPO (For Thyroid Patients only) closed Discussion groups
NOTE: Janie does not run these Facebook groups. They are an independent system of groups, run by a patient leadership team, but they choose to be strongly connected to Stop the Thyroid Madness information, so they are mentioned. You will see Janie’s name as an Admin in these groups—that is simply to show their connection to STTM as requested by admins–nothing else. Disclaimer above applies and you agree to that if you use these groups.
The volunteer leadership states that approval only comes if they can see EITHER your friends list or your wall posts–this is their way to avoid spammers in the groups. You can close them up after approval.
- 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.
- FTPO ADRENALS discussion group for use of HC, adaptogens, ACE, etc. Discusses issues related to adrenals, aldosterone, symptoms, HC, adaptogens, ACE, glandulars, etc.
- 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 FEMALE HORMONE BALANCING (as related to your hypothyroid condition) For those with hypothyroid and female hormonal issues with estrogen, progesterone, etc. 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.
B. 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.
C. More Potential Good Groups for you to explore (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 DISEASE SUPPORT & AWARENESS CLOSED GROUP–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 WORKSHOP Facebook discussion group Run by Lynn Razaitis, plus the author about iodine by Lynne Farrow steps in occasionally. May not have good information about thyroid and solid patient experiences, patients have reported, but good with iodine.
- IODINE 4 HEALTH Facebook discussion group Run by Stephanie Buist who has been involved in iodine information for years. Strict rules, so be prepared.
- 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.
- 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.
- 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