#1243 DIY Insulin Algorithm - iAPS

#1243 DIY Insulin Algorithm - iAPS

Introduction to Episode 1,243 of the Juicebox Podcast

Overview of Guest and Topics

  • The episode features Den, a 31-year-old from Germany with 27 years of experience living with type 1 diabetes.
  • Discussion includes Den's transition from multiple daily injections (MDI) to using a pump and his involvement in the do-it-yourself (DIY) community for diabetes management.
  • The second half focuses specifically on iAPS (intelligent Automated Insulin Delivery Systems), a DIY algorithm for insulin delivery.

Importance of Community Engagement

Call to Action for Survey Participation

  • Listeners are encouraged to participate in a survey at t1dexchange.org/Juicebox, which aids Type 1 Diabetes research.
  • Emphasis on the survey being quick and beneficial for both participants and research efforts.

Sponsorship Announcements

  • Mention of sponsorship by Touched by Type One, highlighting an upcoming free event in Orlando that will feature podcast hosts.
  • Introduction of Contour Next blood glucose meter as another sponsor, promoting early screening for type 1 diabetes through screen41.com.

Den's Personal Journey with Diabetes

Background Information

  • Den shares his diagnosis story; he was diagnosed at age five in 1997 and has been managing diabetes for nearly three decades.
  • He discusses his long history with MDI, having used it effectively until recently transitioning to technology-based solutions like pumps and continuous glucose monitors (CGMs).

Transitioning to Technology

  • Despite being tech-savvy as a software developer, Den only began utilizing advanced diabetes management tools later in life due to previous success with traditional methods.
  • Reflecting on past experiences, he acknowledges periods of poor control during adolescence but improved significantly after experiencing diabetic ketoacidosis (DKA).

Managing Diabetes: Insights from Experience

Early Management Techniques

  • Den describes his initial management approach involving strict meal times and set carbohydrate amounts without much flexibility or real-time monitoring.

Shift Towards Independence

Understanding the Impact of Diabetes on Family Dynamics

The Intensive Therapy Plan and Teenage Years

  • The speaker discusses the "Intensive therapy plan," which modernizes multiple daily injections (MDI) for diabetes management, emphasizing a more flexible approach while still using pen injections.
  • Reflecting on teenage years, the speaker admits to neglecting proper blood sugar monitoring, often making poor insulin dosage decisions without understanding long-term consequences.
  • The speaker's mother struggled with mental health issues during their childhood, leading to a lack of support in managing diabetes effectively.
  • There is an acknowledgment that understanding diabetes management is a gradual process requiring consistent communication over time rather than intensive discussions.
  • The complexity of parenting and diabetes care is highlighted; it requires ongoing effort and reminders rather than isolated conversations.

Relationship Challenges with Parents

  • The speaker reflects on their relationship with their mother, noting that past struggles have created distance between them as adults.
  • Despite recognizing the challenges faced by their mother, the speaker feels that she still had responsibilities regarding their diabetes care.
  • A metaphor comparing parenting to caring for a houseplant illustrates misconceptions about the complexities involved in raising children and managing health conditions like diabetes.

Ongoing Family Dynamics

  • The speaker describes a strained relationship with their mother due to her personal issues and how these affect family dynamics beyond just diabetes management.
  • They express feelings of loss regarding their father, who returned to Turkey after the parents' separation, contributing to feelings of familial disconnection.
  • Despite living close to each other, there has been little interaction between the speaker and their mother over recent months, highlighting emotional barriers in their relationship.

Coping Mechanisms Through Friendships

  • The absence of strong parental relationships leads the speaker to value friendships deeply; they find solace in close connections outside family ties.
  • A tattoo symbolizing "true friends are family" serves as a reminder of these important bonds formed through shared experiences and mutual support during difficult times.

Understanding Family Dynamics and Personal Growth

Reflections on Family and Personal Choices

  • The speaker discusses their family dynamics, emphasizing the importance of chosen family over biological connections. They reflect on being an only child and the complexities of familial relationships.
  • Acknowledges the challenges of life, particularly coming from a working-class background, while highlighting personal achievements such as obtaining a postgraduate degree and working as an engineer.

Life Lessons and Cultural References

  • Introduces a German idiom "life's not a pony farm," which translates to life's difficulties. This phrase serves as a metaphor for the struggles faced in life.
  • Engages in light-hearted banter about potential episode titles, showcasing humor amidst serious discussions about life experiences.

Transitioning from MDI to Pump Therapy

  • The speaker reflects on their long career in software development before considering new opportunities, indicating a desire for change after many years.
  • Discusses the importance of screening for type 1 diabetes in children, stressing that early detection can significantly impact health outcomes.

Health Challenges and Diabetes Management

  • Shares personal experiences with diabetes management, including transitioning to Continuous Glucose Monitoring (CGM). The decision was influenced by wanting more freedom while studying abroad.
  • Describes receiving CGM after some bureaucratic processes due to Germany's universal healthcare system.

Complications Arising from Diabetes

  • Narrates an alarming health incident involving macular edema discovered during an eye check-up. Despite maintaining good A1C levels, unexpected complications arose.
  • Explains how fluctuations in blood sugar levels led to complications at a relatively young age (31), prompting further investigation into diabetes management strategies.

Exploring Treatment Options

  • After discussing concerns with their endocrinologist regarding eye health issues linked to diabetes management, they explore treatment options like insulin pumps.

Understanding Insulin Management and Eye Injections

The Dynamics of Insulin Delivery

  • Discussion on the mechanics of insulin delivery, emphasizing the importance of a steady push to maintain blood sugar levels.
  • Reference to personal experiences with various insulin management systems, including Loop and Omnipod 5, highlighting advancements in diabetes technology.
  • Reflection on past methods of managing blood sugar without algorithms, focusing on the need for balance between rising blood sugar and insulin administration.

Insights from Continuous Glucose Monitoring (CGM)

  • The introduction of CGMs revolutionized diabetes management by providing real-time data, allowing for more precise adjustments in insulin delivery.
  • Personal anecdote about using CGM data to create a resistance strategy against fluctuating blood sugar levels, likening it to an algorithmic approach.

The Journey Through Diabetes Management

  • Acknowledgment of the challenges faced while managing diabetes manually but noting successful A1C results during that period.
  • Hopeful reflections on technological advancements in diabetes care and their potential impact on long-term health outcomes.

Experiences with Eye Injections

  • Inquiry into the experience of receiving eye injections; initial concerns about pain were alleviated through reassurance from medical professionals.
  • Description of the injection process involving numbing drops and careful positioning during treatment.

Post-Injection Reactions

  • Detailed account of sensations experienced during injections, comparing them to light pressure rather than pain.
  • Visual effects post-injection described as temporary fogginess due to fluid introduced into the eye.

Unexpected Outcomes During Treatment

  • An unexpected incident where a minor bleeding occurred after an injection raised concerns but was deemed non-threatening by medical staff.

What Happened to My Eye?

Initial Incident and Diagnosis

  • The speaker describes an incident where a blood vessel burst in their eye, initially likening it to a weightlifter's eye injury. They were advised to come in the next day for evaluation.

Experience at the Clinic

  • Upon visiting the clinic, the doctor confirmed that while the condition looked severe, it would heal within a week. However, the speaker ended up with this appearance for five weeks.

Visual Changes Over Time

  • The speaker explains how the color of their eye changed from red to brown and finally yellow as the blood decomposed over time.

Social Reactions and Misunderstandings

  • The speaker felt compelled to explain their condition to coworkers due to concerns about appearing ill or contagious, especially since they are diabetic.

Sharing Visual Evidence

  • A humorous moment arises when the speaker considers showing a picture of their eye injury but expresses reluctance due to its shocking appearance.

Managing Diabetes: Pumping vs. MDI

Transitioning from MDI to Pumping

  • The speaker discusses their preference for avoiding tubing in diabetes management and shares that they are currently using an Omnipod pump.

Healthcare System Insights

  • They mention that while healthcare access is generally good in Germany, obtaining specific pumps can be challenging due to insurance policies and provider preferences.

Insurance Challenges

Understanding the Transition to Omnipod

Personal Health Journey with Diabetes Management

  • The speaker shares their experience of transitioning to an Omnipod insulin pump, noting a significant improvement in their A1C levels from 62 to 45 within three months.
  • They describe their initial training with a representative from Insulet and how they later implemented Loop software at home, showcasing their tech-savvy approach as a software developer.

Reflections on Timing and Motivation

  • The conversation touches on the idea of "why not sooner," questioning why it took a health scare for the speaker to adopt new technology despite being well-equipped and knowledgeable.
  • The speaker emphasizes that while their endocrinologist is competent, his reliance on older systems reflects a broader issue of adapting to rapid advancements in diabetes management.

Insights into Endocrinology Practices

  • The endocrinologist's conservative approach ("if it ain't broke, don't fix it") contrasts with the need for continuous adaptation in treatment methods as technology evolves.
  • Despite having acceptable metrics, the speaker realizes retrospectively that they were not managing their condition effectively under traditional methods.

Changes in Lifestyle and Health Metrics

  • Post-transition, the speaker notes a drastic reduction in low blood sugar incidents (from below 5% to less than 1%) due to better insulin management through the pump.
  • They mention maintaining a high-carb diet while weightlifting six days a week, indicating an active lifestyle that contradicts common low-carb dietary recommendations for diabetes management.

Community Engagement and Support Systems

  • The discussion highlights the importance of community support within diabetes management groups, where members actively share knowledge and experiences.

Understanding Personal Motivation in Diabetes Management

The Impact of Community and Connection

  • The speaker reflects on the power of community, sharing how a Facebook post connected them to someone they helped indirectly through their podcast, highlighting the importance of shared experiences in managing diabetes.

Personal Loss and Its Influence

  • The speaker discusses the death of their best friend Mike, who had Type 1 diabetes. This personal loss serves as a significant motivator for their advocacy and outreach efforts.
  • Mike's struggle with diabetes was not openly discussed, leading to a delayed recognition of his condition by the speaker when their daughter was diagnosed.

Reflection on Medical Care

  • The speaker recalls Mike's unstable health due to inadequate medical care and outdated treatment methods, emphasizing the need for modernized approaches in diabetes management.
  • They stress that advancements in diabetes care are crucial for improving health outcomes and preventing severe complications.

Guilt and Responsibility

  • The speaker expresses guilt over not being able to help Mike understand his condition better while feeling successful in reaching others through their podcast.
  • They acknowledge an ironic twist where despite helping many people remotely, they couldn't assist their close friend effectively.

Future Aspirations and Mental Health

  • A strong desire to live long enough to support their daughter drives the speaker’s commitment to managing their own health proactively.
  • They share insights into how personal experiences shape one's approach to health management, particularly regarding mental well-being amidst chronic illness challenges.

Reflections on Change and Growth

  • A conversation about past choices reveals that even without visible issues, individuals may still benefit from proactive changes in lifestyle or treatment options.

Understanding Diabetes Management Through Technology

The Role of Continuous Glucose Monitoring (CGM) and Insulin Pumps

  • The speaker reflects on their diabetes management journey, noting a significant reduction in daily concerns about blood sugar levels due to the use of technology like CGMs and insulin pumps.
  • They mention that they have become less preoccupied with monitoring their diabetes, relying instead on automated systems that manage insulin delivery.
  • A recent adjustment in medication led to unexpected lows, prompting a reevaluation of their approach to managing blood sugar levels.
  • The speaker discusses troubleshooting issues related to insulin delivery, revealing that a malfunctioning pod was responsible for erratic blood sugar readings rather than medication changes.
  • Despite challenges, the speaker emphasizes the importance of adaptability and communication in resolving diabetes management issues quickly.

Proactive Strategies for Effective Diabetes Control

  • The conversation shifts towards how the speaker maintains an optimal A1C level through proactive lifestyle choices such as regular exercise and mindful eating habits.
  • They highlight the significance of understanding metabolic processes and how insulin interacts with glucose levels, suggesting that this knowledge simplifies diabetes management.
  • The speaker shares insights from other resources, including advice from experts on carbohydrate intake and balanced meals consisting of proteins, carbs, and vegetables.
  • Daily routines include physical activity after meals to enhance metabolism and prevent post-lunch lethargy while maintaining social interactions during lunch breaks.
  • Emphasizing education about body metabolism is crucial; once individuals grasp these concepts, managing diabetes becomes more straightforward.

Personal Reflections on Learning New Skills

  • A personal anecdote reveals the speaker's interest in raising a chameleon as a challenging endeavor that parallels learning about diabetes management—both require quick adaptation and knowledge acquisition.
  • This reflection leads into discussions about how learning new skills can be applied across different areas of life, including health management strategies for chronic conditions like diabetes.

Understanding Nutrition and Health Through Animal Behavior

Insights on Chameleons and Food Choices

  • The speaker discusses observing a chameleon that demonstrates selective eating habits, choosing specific bugs based on their nutritional content.
  • The chameleon exhibits preferences for certain insects, indicating an understanding of its dietary needs, such as fat and calcium content.
  • This behavior highlights a broader commentary on human understanding of food; many people lack knowledge about nutrition and how to make healthy choices.

Personal Health Management

  • The conversation shifts to personal health management strategies, emphasizing the importance of exercise and proper hydration for overall well-being.
  • The speaker shares experiences with managing blood sugar levels using technology (MDI to pump), focusing on maintaining stable glucose levels.

Mental Impact of Blood Sugar Levels

  • There is a discussion about the psychological effects of fluctuating blood sugar levels; even being slightly above target can lead to feelings of discomfort or irritability.
  • The speaker notes cognitive decline when blood sugar exceeds 160 mg/dL, affecting daily performance and mental clarity.

Future Considerations in Health Management

  • Acknowledgment that awareness of potential complications from diabetes influences mental state; this foresight can impact decision-making regarding health management.
  • Emphasis on having a "red eye" or vision for the future in health management—understanding long-term implications rather than just immediate concerns.

Community Engagement in Diabetes Technology

  • Discussion about involvement in diabetes technology communities, including contributions to DIY projects like Loop for insulin delivery systems.

Understanding Dynamic Insulin Delivery Systems

Overview of System Settings

  • The speaker discusses their experience with a new insulin delivery system for Arden, noting that while they can't fully articulate its execution, it appears to be functioning well when settings align with Arden's needs.
  • There are numerous settings in the system, making it more complex than previous systems like Loop, which had fewer critical settings to manage.

Key Settings and Algorithms

  • Essential profile settings include basal rates, carbohydrate ratios, and insulin sensitivity factors (ISF). The choice between logarithmic and sigmoid algorithms affects how these settings are utilized.
  • Autotune should be turned off when using dynamic algorithms. Autotune adjusts basal rates every 24 hours based on past data but can conflict with dynamic adjustments.

Interaction Between Autotune and Dynamic Algorithms

  • Autotune modifies basal rates and ISF based on historical data but can lead to confusion if used simultaneously with dynamic algorithms that adjust every five minutes based on real-time glucose readings.
  • The algorithm uses continuous glucose monitor (CGM) readings to predict insulin needs, issuing temporary basals or super micro boluses (SMB), heavily relying on the current basal profile.

Importance of Basal Rates

  • Basal rates play a crucial role in determining whether additional insulin is needed. If autotune is active alongside dynamic adjustments, it complicates calculations as both systems may alter the same parameters frequently.
  • The analogy of a math test illustrates the confusion caused by constantly changing numbers from autotune while trying to maintain stable blood sugar levels.

Personal Insights on Usage

  • One user prefers not using autotune due to confidence in their established basal profile. They maintain stable glucose levels through intermittent fasting without needing constant adjustments.

Understanding Insulin Delivery Systems

Dynamics of Insulin Delivery

  • The insulin delivery system can adjust profiles, allowing users to increase their insulin delivery rate (e.g., 120% profile) based on resistance levels.
  • After a menstrual period, the body's insulin needs may normalize, leading to fewer hormonal impacts on insulin sensitivity and requirements.

Limitations of Current Applications

  • Most current applications do not utilize machine learning or artificial intelligence; they rely on historical data rather than adapting dynamically to user behavior.
  • These systems analyze total daily insulin delivery over periods ranging from one hour to fourteen days but do not learn in real-time.

User Experiences with Insulin Pump Systems

  • Some users report not needing to bolus for meals while using advanced systems, often due to aggressive settings that manage blood sugar automatically.
  • Users with extensive diabetes experience may have finely tuned their settings, allowing them to rely heavily on automated systems without manual input.

Misconceptions About Automated Systems

  • There is a misconception that anyone can easily use full closed-loop systems without understanding the complexities involved; it requires significant education and experience.
  • The speaker shares personal experiences with pre-bolusing for larger meals while sometimes opting out for smaller snacks like fruit.

Algorithmic Insights

  • The ORF algorithm used in some applications predicts insulin needs by taking metrics every five minutes and averaging predictions based on conditions.

Understanding Insulin Delivery and Algorithms

The Role of Basal Rates in Insulin Management

  • Users may experience fluctuations in basal insulin, particularly around meal times. For instance, there is a noted absence of active basal insulin between midnight and 6 a.m.
  • Upon waking and consuming coffee, users often see significant spikes in their blood sugar levels due to the body's response to caffeine, despite minimal dietary changes.

Algorithmic Adjustments and Their Importance

  • The algorithm used for insulin delivery assesses current basal rates and adjusts based on predicted needs over time. This involves complex calculations that are crucial for effective management.
  • A well-defined basal profile is essential as it serves as the foundation for these calculations. Inaccurate profiles can lead to ineffective insulin dosing.

Temporary Basal Adjustments Explained

  • The system may implement temporary basals (e.g., zero temping), which means adjusting the basal rate downwards when additional bolus insulin is administered.
  • These adjustments are mathematically driven; if blood sugar rises unexpectedly after eating, the system recalibrates by potentially increasing insulin delivery.

Common Misconceptions About Insulin Distribution

  • It’s normal to observe varying distributions of bolus to basal ratios (e.g., 10:90 or 15:85). However, outdated medical advice suggesting a strict 50/50 distribution should be challenged.
  • Healthy pancreas function does not adhere strictly to set ratios; instead, it responds dynamically based on immediate needs.

Evolving Perspectives on Diabetes Management

  • There is a need for modern approaches that reflect how healthy bodies manage insulin rather than relying on antiquated rules from previous medical practices.
  • Newer systems like Omnipod 5 adapt quickly post-initial setup but require accurate settings from day one for optimal performance.

Understanding Advanced Systems and User Experience

  • Older treatment philosophies often led to unnecessarily high basal rates due to misconceptions about food intake and bolusing behavior.
  • Advanced algorithms may appear nonsensical at first glance but operate effectively within their designed parameters when properly configured.

Caution with Advanced Applications

  • Applications like IPS or Loop require a solid understanding of diabetes management principles; they are not beginner-friendly due to their complexity.

Understanding Insulin Management and DIY Looping

The Importance of Understanding Insulin Applications

  • Discussion on the necessity of understanding how insulin applications work, emphasizing that users need to grasp their functionality to manage diabetes effectively.
  • Mention of manually adjusting basal insulin for short periods (e.g., 20 minutes) to address high blood sugar levels without causing hypoglycemia.
  • Personal anecdote about experiencing higher blood sugar due to overconfidence in managing insulin doses, highlighting the human tendency to misjudge situations.

Challenges with Blood Sugar Management

  • Reflection on a specific incident where administering a half unit of insulin led to unexpected low blood sugar, illustrating the unpredictability of diabetes management.
  • Acknowledgment that even knowledgeable individuals can fall into traps of overestimating their understanding or control over their condition.

Community Support and Resources

  • Introduction of resources like the "Loop and Learn" Facebook group and website, which provide support for those interested in DIY looping with iOS systems.
  • Emphasis on community involvement and availability for questions around the clock, showcasing a global network dedicated to helping each other.

Contributions from Nonprofits

  • Highlighting the role of organizations like Nightscout Foundation (NSF), which supports developers and testing devices within the DIY diabetes management space.
  • Mention of NSF's financial assistance for developers attending conferences or acquiring necessary equipment, reinforcing its importance in fostering innovation.

Balancing Centralization vs. Community-Based Solutions

  • Discussion on the complexities between centralized corporate solutions versus community-driven open-source projects in diabetes technology.
  • Insight into how community-based approaches encourage continuous improvement rather than stagnation seen in some commercial products.

Real-Life Experiences with Diabetes Technology

  • Personal reflection on using various technologies without fully understanding them, indicating a reliance on functional systems despite limited knowledge about their workings.

Discussion on Algorithms and Community Engagement

Insights on Algorithm Features

  • The speaker reflects on a conversation regarding an algorithm feature that resembles the "unannounced meal" concept, noting the unspoken understanding shared among peers in the crowd.

The Role of DIY Algorithms

  • The speaker expresses their belief in facilitating discussions about algorithms as a way to contribute positively, despite feeling somewhat outside the core developments.

Limitations of Social Media Platforms

  • There is disappointment expressed over Facebook's limitations for community engagement, particularly in creating structured discussion groups akin to traditional message boards.

Potential for Broader Conversations

  • The speaker envisions a more integrated platform where diverse conversations could occur simultaneously, potentially increasing outreach and engagement beyond existing groups like Loop and Learn.

Balancing Resources and Growth

  • Acknowledgment of the trade-offs involved in community growth; while current systems work well, there are desires for increased funding and resources to enhance operations further.

Reflections on Diabetes Management

Personal Experience with Diabetes

  • The speaker shares their long-term experience with diabetes management since diagnosis nearly 27 years ago, highlighting ongoing hopes for advancements in treatment.

Historical Context of Cures Promised

  • They recount how many diabetics have been promised cures over decades but emphasize that current tools available are significantly better than those from earlier times.

Volunteer Contributions to Community Health

  • Recognition is given to volunteers who dedicate substantial time weekly to improve diabetes management within the community, underscoring their importance in sustaining health initiatives.

Technological Advancements in Diabetes Care

Overview of Current Technologies

  • A list of modern diabetes technologies is mentioned (e.g., Metronic 670G, Tandem Control IQ), emphasizing that understanding basic diabetes concepts remains crucial for effective use.

Closing Remarks and Acknowledgments

Transitioning from Podcast Discussion

  • As the conversation wraps up, there's light-hearted banter about personal schedules before transitioning into acknowledgments for sponsors supporting diabetes-related initiatives.

Importance of Early Detection

Video description

Deniz has type 1 diabets and he's been a part of supporting iAPS and now Trio - both are DIY algorithms that manage insulin. Screen It Like You Mean It Eversense CGM Learn about the Medtronic Champions This BetterHelp link saves 10% on your first month of therapy Try delicious AG1 - Drink AG1.com/Juicebox I Have Vision Use code JUICEBOX to save 30% at Cozy Earth Get Gvoke HypoPen CONTOUR NextGen smart meter and CONTOUR DIABETES app Learn about the Dexcom G6 and G7 CGM Go tubeless with Omnipod 5 or Omnipod DASH * Get your supplies from US MED or call 888-721-1514 Learn about Touched By Type 1 Take the T1DExchange survey *The Pod has an IP28 rating for up to 25 feet for 60 minutes. The Omnipod 5 Controller is not waterproof. A full list of our sponsors How to listen, disclaimer and more Apple Podcasts> Subscribe to the podcast today! The podcast is available on Spotify, Google Play, iHeartRadio, Radio Public, Amazon Music and all Android devices The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here or buy me a coffee. Thank you! Disclaimer - Nothing you hear on the Juicebox Podcast or read on Arden's Day is intended as medical advice. You should always consult a physician before making changes to your health plan. If the podcast has helped you to live better with type 1 please tell someone else how to find the show and consider leaving a rating and review on Apple Podcasts. Thank you! The Juicebox Podcast is not a charitable organization.