#1444 Floppy Duck

Tue Feb 25 2025

Misdiagnosed for over six years, Polly fought disbelief from doctors despite clear T1D antibodies. Her journey from a misguided rice diet to a staggering A1C of 17 tells a story of resilience, frustration, and finally, clarity. Free (non Facebook) ...

Transcript

A (0:00)

Welcome back, friends. You are listening to the Juice Box Podcast.

B (0:13)

My name is Polly and I live in Northern Nevada. I'm excited to talk to you.

A (0:19)

Nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan. I know this is gonna sound crazy, but Blue Circle Health is a nonprofit that's offering a totally free virtual type 1 diabetes clinical care, education and support program for adults 18 and up. You heard me right. Free. No strings attached. Just free. Currently, if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama or Missouri, you're eligible for Blue Circle Health right now. But they are adding states quickly in 2025, so make sure to follow them at BlueCircle Health on social media and make yourself familiar with blue circle health.org Blue Circle Health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Bluecirclehealth.org you know why they had to buy an ad? No one believes it's free. The Diabetes Variable series from the Juice Box Podcast goes over all the little things that affect your diabetes that you might not think about, from travel and exercise to hydration and even trampolines. Juiceboxpodcast.com go up in the menu and click on Diabetes Variables. Today's podcast is sponsored by the insulin pump that my daughter has been wearing since she was four years old. Omnipod omnipod.com juicebox you too can have the same insulin pump that my daughter has been wearing every day for 16 years. The episode you're about to enjoy was brought to you by Dexcom, the Dexcom G7, the same CGM that my daughter wears. You can learn more and get started today at my link. Dexcom.com juicebox My name is Polly and.

B (2:09)

I live in northern Nevada. I'm excited to talk to you.

A (2:12)

Excellent, Polly. Thank you for doing this. I appreciate it.

B (2:16)

You're welcome.

A (2:17)

So you have the diabetes, as they say.

B (2:20)

I do got a touch of it.

A (2:23)

Just a splash.

B (2:25)

A big splash.

A (2:25)

When did it splash on you?

B (2:27)

Well, I've got a very long, embarrassing, I guess, path. So about 12 years ago.

Summary

Juicebox Podcast: Type 1 Diabetes

Episode #1444 — “Floppy Duck”

Host: Scott Benner
Guest: Polly (Northern Nevada)
Release Date: February 25, 2025

Brief Overview

This episode features Polly from northern Nevada, who shares her long, complicated, and at times frustrating journey to a proper Type 1 diabetes diagnosis (specifically LADA—Latent Autoimmune Diabetes in Adults). The conversation delves into medical misdiagnoses, Polly's experimentation with strict diets, struggles with healthcare professionals, and eventual empowerment through advocacy and support communities. Throughout, Scott guides with humor, empathy, and pointed criticism of systemic healthcare failures, in a relatable, conversational tone.

Key Discussion Points & Insights

1. Polly’s Diagnosis Odyssey

Initial Suspicion & Dismissed Symptoms
- Polly had avoided doctors for years and saw a midwife for routine checks. Her A1C result was startling: 12.6 ([03:49]).
- Immediate recommendation for ER visit and endocrinologist referral, but Polly declined traditional care in favor of diet-based management.
Strict Diet Experiments
- Tries the Rice Diet (white rice, fruit, ~900 calories/day), inspired by Dr. McDougall, despite high A1C ([05:41]).
- Four months later: A1C down to 6.2. Felt she'd “cracked the code” ([06:52]), but lost less weight than expected.
Years of Dietary Self-Management
- Stays on modified rice diet for five years, loses weight steadily, but then mental and physical health declines.
Breakdown and the "Floppy Duck" Appointment
- During the pandemic, desperate for care, Polly finally gets an appointment at a local clinic; A1C is now 17 ([12:12]).
- Memorable moment: A flappy, excitable, Russian PA in a “duck bill” mask strongly urges ER visit ([13:00]).
Missed Diagnoses and Systemic Failures
- Multiple providers continue treating Polly as Type 2, ignoring autoimmune test (GAD antibodies, C-peptide) showing Type 1 (LADA).
- Endocrinologist refuses to review test results: “If you had type 1, you’d be dead” ([17:22]).
- “I gotta tell you something. […] It’s all being held together by good luck and duct tape.” — Scott [17:30]

2. Struggles with the Medical System

Multiple Problematic Providers
- Polly recounts negative experiences with several providers, especially Physician Assistants (PAs) who lacked bedside manner, ignored evidence, or were dismissive ([21:12]; [22:03]).
- “I can't say anything nice about him. He had no bedside manner. He wouldn't listen. He would yell at me… The only time he was nice […] was when he had a trainee… and he was flirting with her.” — Polly [22:12]
Impact of Insurance and Access Issues
- Purchasing and using CGMs and medications complicated by type misdiagnosis—insurance coverage depends on diagnosis codes ([37:41]).
- Frustrations with the back-and-forth and feeling bounced around “siloed” medical offices ([49:20]).

3. Breakthrough and Self-Advocacy

Correct Diagnosis at Last
- After 18 months and multiple doctors, a new endocrinologist in Reno finally recognizes LADA: “You're a LADA. Why are you being treated for type 2?” ([28:46]).
Community and Support
- Discovers LADA and diabetes communities on Facebook; is initially put off by the “Juicebox” name, but joins and finds kindness, practical support, and information ([33:01]).
- “I went to the Facebook group and just fell in love with it because everybody is just so helpful and it’s a kind place” ([33:12]).
Adoption of Technology & Bold With Insulin
- Finds Afrezza (inhaled insulin) extremely helpful for erratic digestion and management ([41:19]).
- Utilizes CGMs (Libre, Dexcom) and finds the “sugar pixel” display helpful for vigilance ([41:48]).

4. Ongoing Challenges & Key Strategies

Complicated by Gut and Endocrine Issues
- Chronic yeast infection (worsened by high blood sugars), Hashimoto’s thyroiditis, erratic digestion, frequent UTIs.
- Difficulty with pre-bolusing due to unpredictable digestion.
GLP-1 Agonists (e.g., Ozempic, Mounjaro)
- GLP-1s help stabilize Polly’s digestion and blood sugars, but insurance restricts access after her Type 1 diagnosis ([37:41]).
- Scott shares Arden’s (his daughter’s) experience with low-dose Mounjaro, self-titrating with smaller doses for benefit without excessive weight loss ([54:08]).
Navigating Insurance and Provider Limitations
- Frustration at clinicians simply stopping drugs like Ozempic but not adjusting insulin, neglecting the broader context of the patient ([41:14]).

5. Emotional Reflection and Resilience

Coping with Chronic Illness
- Polly expresses resentment at small joys denied by diabetes (e.g., enjoying a fruit juice at a gathering) ([52:08]).
- “Just because you're doing well at it doesn't mean it’s fun, that’s for sure.” — Scott [53:32]
- Finds solace in faith, humor (“I have learned, obviously, that I don't know everything”), and the support of the diabetes community ([25:55]; [59:19]).

Notable Quotes & Memorable Moments

Polly’s frustration after years of misdiagnosis:
“He [doctor] would not look at them. He goes, if you had type one, you'd be dead.” [17:22]
Scott’s take on healthcare system dysfunction:
“I gotta tell you something. […] It’s all being held together by good luck and duct tape. Do you understand?” [17:30]
On provider attitude:
“The only time he was nice to me was when he had a trainee physician’s assistant there, and she was very cute, and so he was flirting with her.” — Polly [22:12]
On community support:
“I went to the Facebook group and just fell in love with it because everybody is just so helpful and it’s a kind place.” — Polly [33:12]
Polly on diet journey:
“I did the modified version of the rice diet. I had never felt better in my life.” [07:04]
Discussing innovation in diabetes tech:
“Ever since—put it in once… One insertion a year, and if it works out, only calibration once a week.” — Scott [23:33]
On frustration with being denied simple pleasures:
“I have to think about that. I can’t just have a juice like a normal person.” — Polly [52:08]
Concluding sentiment:
“Just because you’re doing well at it doesn’t mean it’s fun, that’s for sure.” — Scott [53:32]

Timestamps for Important Segments

Diagnosis Odyssey & Diets:
- A1C 12.6 diagnosis & midwife: [03:39–06:56]
- Four years on the rice diet, mental collapse: [10:26–12:01]
Medical System Frustrations:
- “Floppy Duck” and high A1C at clinic during COVID: [12:38–14:19]
- Doctor ignores autoimmune test: [17:22–20:12]
- Series of problematic PAs: [21:12–22:52]
Community Empowerment:
- Discovers Juicebox Podcast/Facebook group: [33:01–34:13]
Technology and Modern Management:
- Experiences with CGMs, Afrezza: [41:14–41:48]
- UTI, infection-induced insulin resistance: [42:52–44:10]
Discussion of GLP-1s:
- Loss and return of benefits, titration strategies: [54:08–58:43]
Polly reflects on challenges & small losses:
- Loss of freedom around food, sugar: [52:08–53:38]

Flow & Tone

Scott’s interviewing style is empathetic yet direct, using humor to highlight absurdities and vent frustration at medical failures.
Polly is candid, wry, and self-reflective—open about missteps and learning to advocate for herself (“I’ve learned, obviously, that I don’t know everything.”).
Key themes: The importance of persistence, self-advocacy, community, and technological empowerment. Critical of medical inertia but focused on practical strategies for thriving.

Key Takeaways & Strategies

Advocate for thorough testing (autoantibodies, c-peptide) if diagnosis is in doubt; don’t settle for “it must be type 2.”
Persistence pays: Even after years of stubborn misdiagnosis, eventual access to the right endocrinologist can change everything.
Community matters: Support groups (especially Juicebox Facebook group) offer essential information and emotional support.
Technology is a lifeline: CGMs, modern insulins, Afrezza, and “sugar pixels” help those with unpredictable digestion and other complexities.
Self-experimentation is key: Within safe bounds, working with (and sometimes around) medical advice can lead to better quality of life.
Be bold with insulin and trust your lived experience—even when doctors dismiss your perspective.

For Listeners: Why This Episode Matters

A cautionary but hopeful tale, showing the hazards of medical inertia but also the power of insistence, information, and peer support.
Offers actionable advice on technology, community, and adaptive management strategies.
Explores the sometimes invisible emotional toll of living with diabetes “by the book”—but also how to push beyond it for better care and quality of life.

For support and information, explore:

Episode Sponsor Links:

Dexcom G7: dexcom.com/juicebox
Omnipod: omnipod.com/juicebox
Blue Circle Health: bluecirclehealth.org

Summary Prepared for Listeners Who Want the Full Story at a Glance.