The recent publication of Evidence-Based Use of Levothyroxine/Liothyronine Combinations in Treating Hypothyroidism: A Consensus Document brought a breath of fresh air to the thyroid community, especially to those of us on life-long exogenous thyroid hormones because we lost our thyroid to cancer. The Consensus Document, a joint endeavor of the American Thyroid Association (ATA), British Thyroid Association (BTA), and European Thyroid Association (ETA), recognizes what patients have long expressed— that sole reliance on LT4 therapy and TSH levels have not served us well.
Although the statement summaries outlined in Table 1 (best viewed in the PDF format) are direction for future studies, they can also provide guidance for current clinical application by practicing endocrinologists. They avoid the “patient blaming” aspect often seen in some studies and actually consider the interaction between patient and physician as a factor.
So how do we take patient blaming out of the interactions we have with our physician?
We have certain expectations that our doctors —
- will listen to us and treat our concerns and symptoms as valid without being patronizing or dismissive
- will provide clear explanations and education
- will engage with us as a partner in managing our long term treatment
- and that they and their staff show care, concern, compassion and professionalism.
Barriers to positive patient-doctor relationships
One obvious barrier is limited time. Only so much can be covered during a brief visit. If the physician is looking at the computer screen and charting instead of looking at you, it certainly can seem that she is not paying attention or listening to you.
Another barrier is that the traditional doctor-patient relationship has been patriarchal and paternalistic with the patient passively accepting decisions without question.
A third may be if the specialist is not willing to go outside their silo and considers their interaction with you as isolated from your overall health and wellbeing.
Patient Responsibilities – or How to Remove Barriers
As patients, it is important we don’t presume every problem is caused by our thyroid meds. We need to realize that we, not our doctors, are responsible for our own health. Medicine is the tool and physicians are the knowledge bearers, teachers and guides. We are responsible for our own lifestyle and how we approach and interact with our physicians and medicine though we do need to recognize there may be external influences — financial, social or other — that can limit how we access our health care.
Steps to Improve Interactions With Our Doctor
- Be prepared. Learn about your condition, how it is diagnosed and treated.
- Use reliable sources for information such as national organizations, university level research studies, government cancer resources.
- Take a written list of questions to appointments, including background about why you want/need a question answered.
- Don’t accept dismissal or a “non-answer” to your questions
- Track all medications, test results, symptoms and response to medications in an easy to access notebook and take to appointments
- Symptoms should be specific and graded on a 0-5 scale (see Resources) and have a point-in-time onset (surgery, med change, etc.)
- Practice your questions on a family member or friend before your appointment. This can really help!
- Practice phrases such as “No!”, “I don’t understand.” “What do you mean?” “What are all the alternatives?”
- If you decide to take a research article to show your doctor to back up your requests, make sure you understand what it says.
- How you present it can make a difference. Try “Have you had a chance to review this yet?” is better than “I found this…”
It doesn’t take a rocket scientist to manage thyroid meds and evaluate response by both clinical and lab results. Your cancer treatment should include a survivorship follow up plan which can be followed either by a specialist or by your primary care provider who can also ensure that your other health needs are addressed.
If a ten or twelve year old child can understand their diabetes and medication requirements, an adult with some education and working with their primary provider should be able to understand thyroid replacement hormone basics and testing.
Evidence-Based Use of Levothyroxine/Liothyronine Combinations in Treating Hypothyroidism: A Consensus Document
Jacqueline Jonklaas, Antonio C. Bianco, Anne R. Cappola, Francesco S. Celi, Eric Fliers, Heike Heuer, Elizabeth A. McAninch, Lars C. Moeller, Birte Nygaard, Anna M. Sawka, Torquil Watt, and Colin M. Dayan.Thyroid.Feb 2021.156-182.http://doi.org/10.1089/thy.2020.0720
Patient Expectations for Care: How Hidden Is the Agenda?
https://www.mayoclinicproceedings.org/article/S0025-6196(11)63654-9/fulltext
Resnik DB. Responsibility for health: personal, social, and environmental.
J Med Ethics. 2007;33(8):444-445. doi:10.1136/jme.2006.017574
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2598168/
NIH National Cancer Institute – Cancer Survivorship
https://www.cancer.gov/about-cancer/coping/survivorship/follow-up-care
Type 1 diabetes in children: becoming independent
https://www.dbl-diabetes.com/all-about-diabetes/family/children/diabetes-children
Thyroid Cancer Advocates 