If you’re here because you have no thyroid gland and are seeking support, you are exactly where we have been. Resources that are specific to us are hard to find. We are “no thyroid” patients and our focus is on wellness through safe and effective combination therapy with T4 and T3 medication for people with no thyroid glands.
We are not a thyroid group. Our website provides a resource in your journey, and our BLOG posts offer both information and a sense of community – you are not alone. Please feel free to comment and add your own unique perspective and experience when you read a post that speaks to you.
We are not doctors or professionals and cannot guide your therapy directly, but we can show you options, theories, stories, and research. We can tell you the things we have tried that have been helpful, as well as sharing our failures. It’s our hope you will use the information here to help you in your journey. Best!
Hi, I would like to join your group.
Doctor has recommended I get my thyroid removed due to MEN2 gene mutation.
Are there others in this group who have this condition?
Thank you
Hi Karima
We’re so glad you’ve found us. Thank you for reaching out. I looked up your diagnosis and found a potential resource and group you may want to join.
Please also feel free to read our blog posts and check out our resources, which are growing daily. Our posts talk about our life journeys without a thyroid gland, and the things we learn along the way. We hope you will find something that may help you on yours:)
A thyroid cancer survivors association with resources
https://www.thyca.org/news/inspire0111/
And here is their support group
https://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/
Best wishes!
Darcey and Kathy
Hi…thyroidectomy w lower neck dissection in 1988. I later was diagnosed w ovarian and breast cancers in 1993 n then the biggest surprise in 2020 a blood cancer. Anybody else w similar experience?
Hi Karen,
Thank you for reading and following along with our journeys. Hopefully you find something of value here, even if our experience is different.
Kathy and myself write from our experiences and share our own personal journeys and what we’ve found to be helpful, and also less helpful, along the way.
While we don’t have your experience, Kathy has had a thyroidectomy and I have no function due to RAI from Graves. We’ve had a lot of medication challenges as well as other health challenges you may relate to, as well as gain some insight from to apply to your own situation.
Again, welcome,
Darcey & Kathy
Hi Kathy, I saw you mention your blog on one of the Hypothyroid sites and I just read your take on TSH. Thank you for offering a different take on TSH. My journey started in 2020 when found a lump, had an US, saw an Endo for the first time and had FNA, those results were benign. The next year had a CT Scan and those results showed my goiter had deviated my trachea, wrapped around my esophagus & larynx and was substernal. Had the TT this year in Jan. Prior to all this I was not aware of my thyroid and my bloodwork only included TSH. I went for my 6 week Endo follow up after my TT only to be told you don’t have a thyroid and your TSH is normal and I was dismissed to my GP. I now have new Endo and first appointment is next week. This new Endo per a friend, cares about how you feel and will do the full thyroid panel. I am hoping for good experience. I would like different meds, currently on only Levo. I am in multiple groups and there is so much I’ve learned but so many are also very aggressive stating that TSH is not indicator for optimal labs, that it’s for the pituitary gland. So then I start believing that If I don’t get FT4, FT3 and RT3 then I’ll never know if I am range or optimal. It’s a journey learning about thyroid and I’m looking forward to reading more of your blog. Thanks for writing it. Cheers! Jule
Thank you for visiting our website Jule. We are still working through the learning process of navigating our blog so please forgive my delayed reply. Thyroid Facebook groups can be a slippery slope. While they are good for support and encouragement, they are not the best place to get dosing and lab level advice. Everyone is so different and nobody can tell you what your lab levels should be to feel well or how much medication you will need to restore your health. And yes we agree with you, aggressive is a nice way of describing some thyroid groups 🙂 And as far as needing a full thyroid panel to know if you are optimal; how you feel is what will tell you if you are optimal, along with TSH to monitor if you are over or under medicated. So don’t feel bad if you can’t get your doctor to agree to all of the labs they say you need. I’ve had 5 years worth of full thyroid panels and they haven’t told me where optimal is. What is your reason for wanting different medication? Is Levo not working well to alleviate most of your symptoms? Have you had dose adjustments?
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