Juicebox Podcast: Type 1 Diabetes

Host: Scott Benner
Episode: #1690 Autumn Needs an Answer - Part 1
Guest: Autumn
Date: November 25, 2025

Overview

This episode features Autumn, a 44-year-old woman originally diagnosed with type 1 diabetes at age 13, who spent over three decades navigating diabetes care, only to discover a dramatic misdiagnosis that reshaped her life and treatment. With Scott, Autumn digs into the journey from her original type 1 diagnosis to ultimately uncovering a rare genetic form of diabetes (MODY 4), and the importance of patient advocacy, self-education, and questioning the system. Themes include breaking out of diagnostic “boxes,” insurance complications, medication struggles, and the transformative power of community-driven information.

Key Discussion Points & Insights

1. Autumn’s Background & Early Diagnosis

• Autumn was diagnosed with type 1 diabetes at 13 (1994), after symptoms like migraines, excessive thirst, and frequent urination led her to the ER, where her blood sugar registered over 500 ([08:12]).
• Early diabetes education involved learning insulin injection with fruit, highlighting the sometimes arbitrary and outdated nature of early diabetes care ([09:40]).
• Strong family history: father, grandmother, and great-grandmother all diagnosed with type 2 diabetes, despite not fitting typical risk profiles ([10:23]).

2. Life in Michigan, Family Roots, and Personal Reflection

• Lighthearted conversation about Michigan winters and the inertia of staying put for family reasons, even when weather and lifestyle tempt moving elsewhere ([02:42]–[05:23]).
• Discussion on the importance of roots for her son and weighing the possibility of relocation after he graduates ([04:49]).
• Autumn’s reflection on her father’s regret about not staying where he grew up, revealing universal struggles with life choices and the meaning of roots ([06:11]).

3. Living with Diabetes: Frustration, Insulin Resistance, and Medical System Barriers

• Despite years of diligent care, Autumn developed severe insulin resistance, using up to 200 units a day on her pump ([16:00]).
• Multiple providers were slow and resistant to exploring off-label or evolving treatments (e.g., using metformin, GLP-1 agonists) due to rigid interpretations of official protocols and fear of liability ([13:19]).
• Insurance restrictions further hampered care—when medications began working, coverage was often pulled for not “fitting the box” ([18:51], [20:31]).

Notable Quote:

“Here I am getting better, but you’re telling me I can’t have a medication because your black and white box doesn’t fit for me. Make that make sense. How does that even make any sense to anyone in this world?”
— Autumn ([18:51])

4. The Power of GLP-1 Medications and Insurance Woes

• GLP-1 drugs (Ozempic, Mounjaro) dramatically improved Autumn’s insulin sensitivity, health, and well-being, reducing her insulin requirements from 200 units to as low as 20 units a day ([16:00]–[23:25]).
• Insurance only covered medication for certain diagnoses (e.g., type 2 diabetes or weight loss), forcing patients and doctors into administrative “box checking” ([18:51]–[19:18]).
• Common experience: creative problem-solving and working around, rather than with, the system—often needing to consider paying out-of-pocket or adjusting diagnoses to secure life-changing medication.

Notable Quote:

“A whole generation of people, Autumn, who find themselves saying something they thought they’d never say: ‘Well, the good news is I’m fat, so…’”
— Scott ([18:51])

5. Community, Podcast Influence, and Self-Advocacy

• Listening to the Juicebox Podcast and hearing other patient stories (notably “Jim’s” story of antibody testing and going off insulin) motivated Autumn to question her own diagnosis ([23:06]–[23:46]).
• Ran new antibody and C-peptide tests: No antibodies, preserved C-peptide (1.1, then 2.4 at elevated glucose) revealed non–type 1 diabetes ([23:25]–[27:27]).
• University of Michigan clinic further narrowed diagnosis to MODY 4 (mutation in PDX1 gene)—a rare form of monogenic diabetes ([27:27]).
• HER PATH: From “type 1” on an insulin pump, to minimal insulin and a GLP-1 agonist; considering coming off insulin completely ([27:27]–[29:17]).

Notable Quote:

“If it were up to them [the insurance companies], they would have just kept me in that one box and kept me sick. They didn’t want to personalize my healthcare. And I think that’s the travesty in this world.”
— Autumn ([29:17])

6. The Role of Patient Storytelling and Podcasting

• Host Scott reflects on years of pushback from critics who say patient stories are “dangerous” if they deviate from established norms, and the importance of letting real-life experiences drive progress ([32:18]–[35:14]).
• Autumn emphasizes the life-changing impact of hearing patient-driven stories and the ripple effect of sharing lived experience ([36:06]–[44:39]).

Memorable Moment:

“If I would have listened to you [the critics], Autumn would still be sick.”
— Scott ([35:14])

7. Advocacy, Questioning Authority, and Breaking Out of Diagnostic Boxes

• Autumn’s persistence and critical questioning (“What would be the best thing? Remove all of the insurance companies and… what really helps me?”) led her to push for re-examination ([30:07]).
• She credits her self-advocacy to her mother, who always said: wear a white coat or not, ask questions and challenge answers that don’t make sense ([30:07]).
• Insights into how rigid checklists and administrative inertia in medical and insurance systems can lead to decades-long misdiagnosis and suboptimal treatment ([44:39]).
• Scott & Autumn stress that stories like hers should not replace safe medical practice, but should drive open-mindedness and investigation for patients not following expected patterns ([45:25]–[46:19]).

Notable Quote:

“People don’t know what questions to ask… Shooting the insulin in that orange is not going to be the answer for my child. I want to know about antibodies. I want to know about C-peptide. I want to know more than just what your black and white checklist says you have to tell me.”
— Autumn ([44:39])

Notable Quotes & Timestamps

• On insurance barriers:
  “Here I am getting better, but you’re telling me I can’t have a medication because your black and white box doesn’t fit for me.” ([18:51] — Autumn)

• On diagnostic stagnation:
  “What an indicator from your provider that they don’t know what they think about anything. They just know that it was written down somewhere, and so they’re not going to do it.” ([13:22] — Scott)

• On patient-driven change:
  “If I would have listened to you [the critics], Autumn would still be sick.” ([35:14] — Scott)

• On necessity of challenging authority:
  “Just because they went to school for all those years and they wear a white coat, it doesn’t mean they know everything—and you should ask questions, and you should push back.” ([30:07] — Autumn)

• On the impact of sharing patient stories:
  “It clearly saved my life.” ([36:06] — Autumn, about Jim’s podcast episode)

• On how slowly progress can happen:
  “Humanity is just a constant learning process. Every six months, you can look back at something you were saying six months ago and go, oh—bad take.” ([39:39] — Scott)

Key Timestamps

• [02:31] Autumn’s background and diagnosis story
• [08:12] Early symptoms, hospitalization, and diagnosis at 13
• [10:23] Family history and early questions about diabetes subtypes
• [12:36] Experience with GLP-1 drugs, impact, and insurance denials
• [18:51] Insurance shuffle, off-label prescribing, and “box-checking”
• [23:06] Inspiration from podcast, antibody and C-peptide testing
• [27:27] Confirmed MODY 4 diagnosis, new approach
• [30:07] Advocacy, self-education, and mother’s influence
• [32:18]–[36:06] The value and controversy of patient storytelling
• [44:39] The importance of asking more questions and challenging the system

Conclusion

This episode demonstrates the complex reality of living—and thriving—with a rare or misdiagnosed form of diabetes in the face of entrenched medical and insurance bureaucracy. Autumn’s journey from being labeled “type 1” to discovering MODY 4, and the life-changing effect of a single podcast episode, illustrates the critical importance of patient advocacy and open, honest storytelling. Scott and Autumn together argue for flexibility, community, and a willingness by both providers and patients to question received wisdom for the sake of true health.

For more, continue to Part 2.