Support group moderators

Who are we?

We are a team of thyroid patient peer-leaders who help keep the group stay on track and engage together productively. We aim to lead by example as we comment and post in a friendly, compassionate, informative, thoughtful way. We discuss strategies and challenges together on an ongoing basis.

Each of us has been mentored and supported by fellow thyroid patients over the years, and we’re now giving back, even though many of us still face health challenges.

My other autoimmune conditions, Ankylosing Spondylitis and Uveitis, which caused me intense suffering in my 20s, are now mostly in remission after doing some permanent damage. I struggled with weight gain in my 30s and 40s, but I’ve been maintaining healthy weight loss without calorie restriction since 2013. I’m a lot more vigilant about my health, realizing how fragile it can be.

Despite the challenges of managing 3-5 doses per day of a thyroid medication with a short half-life, I’ve been thriving more than I ever did on LT4 monotherapy. I can finally think clearly and research productively, and my emotional life is finally calm and well-balanced. I’m finally well enough to help others, including my mother and my sister, self-advocate in their thyroid therapy.

Beyond my full-time employment as a tenured research professor in communication studies at the University of Calgary, I spend my time co-leading Thyroid Patients Canada as a founding member. I bring to our organization my academic skills and experience as a teacher, leader, researcher, writer, and communication analyst. I enjoy analyzing and disseminating thyroid science as I write blog posts for our website and communicate through images and memes. In this group and others, it is truly an honor to share my growing knowledge through informal dialogue with my fellow thyroid patients.

I sought a second opinion at the Johns Hopkins University and got the same recommendation.  I remember the doctor saying “This is an interesting pathology.  Were you exposed to radiation as a child?”  I spent my childhood in Europe, far away (~1,700 km) from Chernobyl, but perhaps not far enough.  I’m sure the incredible amounts of life/work stress didn’t help either.  The post-thyroidectomy pathological report showed the nodules were benign.  My surgeon somewhat jokingly said “Good news, they’re benign and no further treatment is necessary. Bad news, we can’t put your thyroid back in.”  The doctors made the “you’ll be on medication for life” statement sound a lot simpler than it has been. 

It’s now been over a decade since my surgery and I’ve tried many thyroid medication therapies including T4 only, T4 + T3, NDT only, NDT + T3, and my current T4 + NDT + T3 which seems to work the best for me.  Like many of our members, I’ve spent countless hours researching, reading, and sleuthing my way through the conundrums of thyroid care.

Throughout this process of careful experimentation and titration, I’ve been fortunate to have found a few doctors who truly listened and cared about my symptoms.  It wasn’t an easy find, but I kept at it.  I left those who seemed biased and dogmatic in terms of medications and treatments, and kept ignoring my symptoms.  I stuck with those who did their best to help even if they sometimes didn’t have all the answers.  Ironically, the further away I got from those who “specialized” in thyroid issues, the more support, open-mindedness, compassion and understanding I received.  I truly wish this was not the case.

I am a big believer in advocating for myself and empowering others to do the same.  Given today’s prevalence of people with thyroid conditions, it’s vital to do more and better in terms of listening to patients, offering a variety of treatment options and accepting the fact that different treatments work differently for different people.  By actively participating in our community, sharing experiences, and learning from each other, together we are advancing two incredibly important causes – feeling our best health-wise and living our best lives daily.  Thank you for being here.

I have several autoimmune conditions, including Lupus, Hughes Syndrome, and others. I had a pituitary apoplexy when I was 2 months pregnant with my second child, causing several deficiencies in pituitary hormones.

Because of the complex nature of my health, I research everything, not just thyroid. I delve into my genetics now and again. My father died of thyroid cancer. I can see hypothyroidism in my daughter and two of my granddaughters, and I fight for proper thyroid diagnosis and treatment for them.

I’ve spent the last 3 years as a founder member of the ITT Campaign (Improve Thyroid Treatment) in the UK. We have been very successful in many ways engaging with health authorities such as the NHS (National Health Service). Last year the main thyroid support groups in the UK created a joint group now called the “T3 group” who liaise with several members of the House of Lords and the President of the British Thyroid Association.

I was on no medication for 6 months, my doctor assuming my left lobe would supply the thyroid hormones I needed to survive. My TSH began to rise and my free T3 and free T4 hormones fell. I became very hypothyroid, and the elevated TSH secretion grew a new nodule in my left lobe. I was not functioning well at work or at home and was started on synthetic T4 hormone (Synthroid).

I underwent a second thyroid surgery 6 months after the first.

 I developed depression and anxiety during the period of severe hypothyroidism. This required a referral to a psychiatrist, and treatment I remain on to this day.

While hypothyroid, I also developed an inflammatory, degenerative arthritis requiring a referral to a rheumatologist. I am still receiving treatment for the inflammatory arthritis as well.

Another symptom that continues is very poor memory and brain fog. It has affected my ability to remember commitments, appointments, and prevents me from working full-time.

 After a couple of years on Synthroid (synthetic T4), when I was not doing well, synthetic T3 was added to my treatment. After joining Thyroid Patients Canada’s group and getting peer support, my goal was to switch from T4 therapy to natural desiccated thyroid (NDT) (also called desiccated thyroid extract, DTE, by scientists). However, none of my endocrinologists (there were a few) knew anything about how to treat hypothyroidism using NDT and refused to put me on it.

Fortunately, I’ve worked in healthcare in non-medical roles my entire working life and am relatively knowledgeable about our healthcare system. I’m confident when speaking to my doctors, and I have learned to advocate for myself. I continued to push for NDT. Finally, my 5^th endocrinologist agreed to trial me on it!

 I now take both the NDT with some synthetic T3 and divide my doses up over the day to keep my T3 levels more steady over the day. Adjusting my doses to maintain optimal results has been an up-and-down roller coaster of trial and error, but with the help of this group, I’m surviving and thriving much better than I was on T4 alone! I continue to read, ask questions, and learn from everyone, and I hope you do too.

We appreciate you.

Thank you in advance for your participation with us in the forum. We continue to learn more as we share our stories, insights, suggestions, and knowledge in our group. We believe we can benefit from your support and expertise as much as you can benefit from ours.

Concerns, suggestions, questions?

1. From within the support group, click on any moderator’s name or profile image within the Facebook group, and click “Message.”
   Or…
2. Send a message to Thyroid Patients Canada on Facebook Messenger.
   Or…
3. Contact Thyroid Patients Canada by email.

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