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Personal Stories

DiabetesSangha’s Peter Friedfeld on his Misdiagnosis and Managing the Ups and Downs of T1D

After a type 2 diabetes (T2D) misdiagnosis at age 55, Peter Friedfeld underwent two years of mismanagement and hardship until he finally received the correct diagnosis as a type 1 adult. The Lancet reports that up to 40% of adults might be misdiagnosed with type 2.

DiabetesSangha’s Peter Friedfeld on his Misdiagnosis and Managing the Ups and Downs of T1D

Missing a type 1 diabetes (T1D) diagnosis can result in severe consequences like diabetic ketoacidosis (DKA) and other harmful complications—which begs the question, why is this still happening?

T1DStrong sat down with the executive director and co-founder of DiabetesSangha, Peter Friedfeld, to discuss his midlife T1D diagnosis and how finding the right doctor and community changes everything.  

Midlife Misdiagnosis

I was 56 years old and had two diagnoses; the first was almost 18 months earlier when I was diagnosed with type 2 diabetes. Eight months before that, my primary care doctor said on an annual physical, ‘Hey, your A1C is a little higher than usual (it was only around 6.2); we need to watch this.’ And then, it crept up in a blood test a few months later, and my doctor said it was pre-diabetes. Again, he said I need to watch myself that maybe five to seven years from now, I could develop diabetes.”

Type 1 Warning Signs

“I was traveling overseas and was definitely beginning to have some symptoms – numbness in some of my extremities, constant urination, massive loss of weight. When I saw a picture of myself, it seemed my shirt was hanging off me. I thought it was so odd. I came back from my trip, continued to lose weight, and contacted my doctor, who was a good New York internist.  He sent me to urologists to figure out what was going on because I was peeing so often.”

“I also had some symptoms I probably wasn’t even aware of. I can remember being so exhausted after a workday, pulling off on the side of the road, passing out for about an hour, and then waking up. The first thing I wanted to do was to find a Gatorade or Jolt so that I could make it home. I’d go into this hazy space, like a dream world; however, I never linked any of these symptoms together.  Finally,  in January 2014,  I was visiting my dad, who was type 2, and I shared with him what was going on.  I remember he said, ‘Let me test your blood sugar,’ and he pulled out his glucometer (it was 280). He told me I needed to get to the doctor; something was not right.”

The Dangers of a Diabetes Misdiagnosis

The two types of diabetes (T1D and T2D) are very different in biology and how they are treated. T1D is an autoimmune disorder where the body attacks the insulin-producing cells in the pancreas, and type 2 is a metabolic condition.

Since the pancreas stops producing insulin, T1Ds require insulin from another source outside the body. With T2D, the body’s cells become resistant to insulin, requiring drugs to assist the absorption. T2D can sometimes be treated with lifestyle changes; however, advanced T2D does require insulin treatment. Misdiagnoses between the two is an escalating problem with deadly consequences. Type 1 individuals can go for years trying to manage a condition with pills and exercise that require exogenous insulin, and those who don’t receive the proper treatment risk serious complications.

“I saw my doctor, who diagnosed me with type 2 diabetes and put me on type 2 drugs,” Friedfeld said. “At that point, I freaked out a little. I was in good shape and always ate healthy.”

“On Valentine's Day 2014, I met with a diabetes care educator who was a godsend. She believed very much in a plant-based diet and exercise as a way to reverse type 2 diabetes. She also suspected I may be type 1.  After working with her for a few weeks, I saw a continual drop in my blood glucose.  My doctor advised me to stop taking meds as I was going low too often. On my next exam, my A1C had dropped dramatically to 4.6. For the next 18 months, I managed myself without any drugs or insulin. I also lost twenty pounds and went from 155 to 135. And that was very difficult for me, too; I was on a very strict diet, and I wasn’t living a very good life.”

The various pills used to treat type 2 can only work if your pancreas still produces insulin. 

(Fortunately, with early diagnosis and antibody testing, there are drugs now that can delay the onset of type 1 diabetes (Tzield), in some cases, up to two years.)

Dangers of Diabetic Ketoacidosis (DKA)

As healthy as Friedfeld was, his misdiagnosis led to a possible serious bout of diabetic ketoacidosis (DKA). “I was traveling in Asia and arrived in Hong Kong. I got very sick. Looking back now, I believe I was in DKA. At the time, I didn’t know what it was, but I literally stayed in a hotel room for three days, unable to move, hallucinatory, dazed… complete sickness.”

DKA Symptoms

  • Rapid, deep breathing
  • Frequent urination
  • Fruity breath
  • Dry skin and mouth
  • Headache
  • Stomach ache with nausea and vomiting
  • Exhaustion
  • Muscle stiffness and achy, flushed skin
  • Extreme hunger and thirst

DKA, if left untreated, can lead to loss of consciousness and even death.

The Right Doctor and Diagnosis Changes Everything

Friedfeld said even with his rigorous diet and exercise plan, his A1C  began creeping up again. His doctor put him back on various type 2 medications, and to no avail until he had enough. “I finally said, ‘Something is not right.’ This was 18 months into it.”

Friedfeld saw a Functional MD,  who worked with Hashimoto’s and other autoimmune diseases and overall gut health, in an attempt to figure out what was going on. “She did an array of tests and told me I was type 1 diabetic. I said, ‘What do you mean? I’m type 2,’ and she said, ‘No —look at this marker and this one. You need to get to an endocrinologist right away.’ My doctor fought me for almost 18 months about seeing an endo, saying, ‘I can do everything you need here.”

After receiving the right diagnosis, Friedfeld started insulin therapy immediately—almost a year and a half after the initial diagnosis. “I utilized  pens and needles for the first eight years, and about a year ago, some friends in the DiabetesSangha encouraged me to consider a pump.”

Friedfeld uses the Omnipod 5 today and began looping with the Dexcom G6. “Initially, I fought all of the devices. I didn’t use a CGM until 5 years ago when I began using Dexcom G5 after experiencing an increasing amount of unexpected lows. It was a life-changing experience for me to sleep better and safely, and I felt so much more in control of my life.  Recently, I started the Dexcom G7 and liked the 20-minute warm-up and smaller size, but I switched back to the G6 after about two weeks. I found my numbers to be very inconsistent, and it was affecting my automatic insulin dosing. I’m still experimenting with what works best for me and fine-tuning my settings with the help of my healthcare professionals. "

The Wellness Component

“I have always controlled my diabetes well. I’ve been very fortunate to be able to live with this amazing technology, to have adequate insurance and great medical care, too, and I’m very aware that so many people don’t and struggle in many ways managing this disease.  And although my ‘numbers’ were in a good range, I was struggling in many ways dealing with T1D.”

During COVID, Friedfeld discovered Zen teachings and mindfulness practices, which helped him heal. Additionally, he got involved with a regular yoga practice to help balance the mind-body connection. Then, in 2021, Friedfeld helped create DiabetesSangha, a T1D meditation community that practices mindfulness, meditation, and wisdom teachings for individuals with type 1 diabetes. “We attract many newly diagnosed adults, as well as many living with T1D for years, and help with the wellness component, which is so important. This is where I and so many struggle.”

According to the Mayo Clinic, wellness components for people with diabetes include healthy eating, physical activity, blood glucose control, and joining a peer support group. As exhausting as diabetes can be, as many as 40% of people with diabetes admit to feeling overwhelmed at times.

“Constant change is part of our lives – mindfulness practices are so beneficial. We all have daily challenges, and connecting in the community helps in so many ways. One of my friends was just diagnosed (with T1D) at 62. We know people need help when first diagnosed; it can be so challenging, so life-altering.”

In addition to his work with DiabetesSangha, Friedfeld has raised funds and awareness for the Diabetes Research Institute by leading a team of bike riders on the East End of Long Island. His passion lies in connecting with the type 1 community, and he strongly believes that it's our collective responsibility to support each other in living our best lives. Having personally benefited from direct support within the diabetes community since his diagnosis 10 years ago, he is committed to fostering a supportive environment.

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