Talking Types with Lloyd Mann

I first met Lloyd Mann four or five years ago at a Saturday diabetes meet-up at a local Panera Bread. He was sitting at the end of the table with a big smile, an iPad, and a copy of his book about diabetes. He was discussing the possibility of being tested for MODY because of insulin signaling problems. A resident of South Dakota at that point, Lloyd was in Minnesota visiting family and had previously hooked up with this group through online friend Scott Johnson.

Fast forward a couple of years and Lloyd now lives in the town next to me. We have begun to supplement the every-couple-of-months group meetings with one-on-one lunches at the Panera Bread near his home. Yes, our relationship is built on Lloyd’s love of tomato soup and “Scott Johnson-esque” grilled cheese sandwiches along with endless cups of Diet Pepsi (definitely not Scott-inspired but Panera doesn’t carry Diet Coke).

Lloyd and I are close in age. In diabetes we are simultaneously far apart and eerily close. Lloyd has Type 2 diabetes and I have Type 1 diabetes. In most ways we are stereotypical depictions of our diabetes types. I was diagnosed with diabetes as a young adult in the mid-1970’s. I was hospitalized in an unquenchable-thirst skeletal state with high blood sugars and large ketones and have never had a day since then without injected insulin. Lloyd was diagnosed with Type 2 diabetes in 1994, took pills for many years, and then started insulin 11 years later. Lloyd’s insulin resistance is off the charts and on a daily basis he uses over 10 times as much insulin as I do. His story personifies the fact that Type 2 diabetes is a progressive disease.

So here you have two Medicare people with diabetes. Lloyd uses a Medtronic 723 pump and changes his 300-unit reservoir every day. When his warranty expires in January, he plans to move to a Tandem t:slim X2 pump and continue to change his cartridge every day. He likes the t:slim platform because unlike his Medtronic pump, it allows him to program a bolus larger than 25 units. I use a Tandem t:slim X2 pump. I change my cartridge once a week and rarely bolus more than 2 units at a time. Because Medicare CGM coverage does not exclude people with Type 2, Lloyd is in the process of obtaining a Dexcom G5 CGM. I use a Dexcom G5 CGM. Currently neither of us is using sensors provided by Medicare and we both wear an Apple Watch and carry iPhones. Lloyd and I are technology twins.

Lloyd and I are students of diabetes. Yeah, we are “Know-It-Alls.” You may like us. You may find us annoying. But we don’t care. We know our stuff and we want to learn more.

I recently asked Lloyd if I could interview him and we met at Panera two weeks ago. I did not record our talk so Lloyd’s answers are in my words with scattered quotations. I also throw in an occasional comment.

Lloyd, I know that your diagnosis story is in your book but please give me a short timeline. I was diagnosed with thyroid disease in 1980. Fourteen years later at age 44 I was diagnosed with Type 2 diabetes. What was your reaction was to the diagnosis?  I just thought “Oh no, one more pill to take!” Do you have a family history of Type 2 diabetes?  Both of my sisters have Type 2 but neither of my parents did.

How long have you had diabetes?  23 years.

How long have you been on insulin?  12 years since 2005.

How long have you been on a pump?  Since 2005. Less than one year after starting insulin, I convinced my doctor to order me a pump. I had used Lantus followed by a mixed insulin and wasn’t having good results. I did my homework and presented my doctor with a list detailing why the Deltec Cozmo was the best fit for me. Rather than specify Type 1 or Type 2 in the letter of medical necessity, he just put “Insulin Dependent” and I was immediately approved for pump therapy.

You indicated that you will be purchasing a new insulin pump in January. What features are important to you as you make that decision?  I need a pump with multiple basal rates. I currently use 8 different rates and my highest hourly rate at 3:00AM is 5 times as high as my lowest rate. Because of high insulin requirements, I require a 300-unit or larger reservoir and the option of taking boluses bigger than 25 units. I also need to be able to set an insulin sensitivity factor of less than 1 unit per 10 points. (As someone with Type 1 who is very sensitive to insulin, I want to put multiple exclamation marks after each of those numbers!)

I am planning to order a Tandem t:slim X2 to replace my current Medtronic pump. Although the  t:flex has a larger reservoir, I prefer the upgrade features, Bluetooth, and CGM capabilities of the X2. I am used to changing my reservoir every day and will continue with that practice. I expect that my total daily dose of insulin will go down using the X2.

Tell me about your decision to order a Dexcom G5 CGM. How do you think it will help you? I plan to use the G5 to help reset basal rates. Although I use more insulin now, the basal patterns are the same as I figured out using the Abbott Navigator over 6 years ago. I rarely get lows (insert another exclamation mark here!) but need a CGM for highs. I have always been forgetful and that is increasing with age. My  insulin mistakes are almost all related to forgetting to bolus and the CGM will alarm when I forget and my BG soars. I’ve been working with Dexcom since earlier in the summer and I am “waiting as fast as I can” for the arrival of my G5.

So Lloyd, what do you think of the Medicare ban on smartphone use with our G5’s?  “You can’t print that.”

What year was your book published and why did you write it?  Successful Diabetes Management was published in 2011 and I wrote it because I was doing well managing my diabetes and wanted to help others. I chose the cover from Amazon’s stock photos and the image spoke to me as “Follow the Path” to good diabetes management.

I had also been one of the many people at Diabetes Daily who knew Richard Vaughn and goaded him to write his book published in 2010–Beating the Odds, 64 Years of Diabetes Health. After Richard’s book was published, he contacted me and said “Your turn, Lloyd”.

Lloyd continues his mission to help others with Type 2 diabetes and his Diabetes Daily forum sticky note titled Type 2 in a Nutshell has over 16,000 views. He was previously a moderator at Diabetes Daily.

As we consider Type 1 and Type 2, Lloyd, how do you think our diabetes lives are similar?  Our daily tasks are the same. We count carbs, we bolus, we deal with highs and lows, we test BG, we change pump sites. And most importantly, we live with fear of complications.

How are our diabetes lives different?  My lows are not nearly as debilitating as yours and my risk of DKA is about 1/20th of yours. I think that people with T1 can eat a bigger variety of foods than a T2 aiming for tight control because they process food more normally and insulin works better. (Like many people with Type 2, Lloyd’s weight issues are intensified by high insulin use.)

What is the hardest part of diabetes for you?  “It’s forever” and “knowing what to do and doing it are two different things.”

What are your thoughts on Type 1 versus Type 2 diabetes?  I think that the naming of Type 1 and Type 2 leaves a lot to be desired. Type 1 and Type 2 are based on how you got to where you are but they don’t always address where you are. Type 2’s need to restrict carbs more than Type 1’s and we also have a problem with our livers. Metformin addresses that and I am still taking it after 23 years of diabetes. I think that my diabetes is more predictable than yours.

As this stage of your diabetes career, do you identify more with people with Type 1 or those with Type 2?  My day-to-day life is like a Type 1. My medical team thinks that I have completely quit producing insulin and that is unusual for Type 2. I have more in common with T1’s than with T2’s on pills.

Conclusion:  I asked Lloyd if he had any questions for me and he wanted my opinions on hiking and exercising. We talked about lows and he indicated that he used to get lows on older Type 2 medications and when he used to walk a lot. But he has rarely gotten lows since moving to insulin 12 years ago. Sometimes I think that my Type 1 diabetes is most defined by 40 years of lows: while driving, while taking care of my children, while mowing the lawn, while wandering lost at the mall, while peering up at concerned policemen and paramedics. Even with improved CGM technology which now mostly protects me from severe lows, my treatment decisions are always influenced by the possibility of lows and I might argue that’s the biggest difference between Lloyd and me.

Do lows make me have the “bad” kind of diabetes compared to him? No, because lows mean that my insulin is working. I can’t imagine the frustration that Lloyd must feel when oral medications in addition to hundreds of units of insulin daily are required to tame his blood sugar. Metabolic syndrome and insulin resistance are powerful opponents and I kind of wonder if my life is easier.

When I look at the differences between the types of diabetes, I mostly end up in the “I don’t know” and “I don’t care” camp. I don’t want to fight about labels, blame, stigma, cost, and who’s got it worse. I just want and need the appropriate care for my diabetes and I think that Lloyd would say the same thing. Diagnose me correctly and treat me correctly. That’s not asking too much.

In summary, I would say that the most fitting end to this blogpost is that no matter how you look at it, Lloyd Mann and I are just friends who both happen to have diabetes. Types don’t matter.

21 thoughts on “Talking Types with Lloyd Mann

  1. I have been corresponding with Lloyd Mann for ten years, and I met him in Minneapolis in 2011. I know Laddie on Facebook and They are both fine people, and they know their diabetes very very well. I enjoyed this blog, it is very informative, and educational. Thanks to Laddie for a very fine report!

  2. I think your perspective of not needing to label which type is 100% correct. However, I recently had an interaction with a used-to-be close friend who is pregnant with gestational diabetes. All I heard from her was how hard it is and all the bruises she gets, etc. and that she cannot wait to have the baby so she is finished with diabetes. I nearly had to leave the party because I was so close to tears and so angry. This was someone who knows my life with T1D, but continued to disregard MY disease. She also announced that she couldn’t eat the yummy baguette, but then inhaled 45 tortilla chips. When both sides connect and really share the struggle and understanding, that’s something beautiful. I’m glad you two found that. It’s heartbreaking when it doesn’t happen.

    • I’m sorry that your friend has no sense of what you go through. I don’t think that many people understand what those of us with T1 go through on a daily basis. And I hope that her gestational diabetes is not a prelude to diabetes in the future. Often gestational is linked to Type 2 and then sometimes it is the final trigger that pushes someone who has the antibodies over into Type 1. I have some memories of ignorant thoughts that I had pre-diabetes over 40 years ago. This blogpost describes one of those memories:

      • Thanks for sharing your post; it’s powerful. Also, I’m a fellow Minnesotan too! Originally from Wadena. I’m living in Germany now, but would love to meet up whenever I’m back to visit 🙂

  3. It has always been hard for me to get over Panera’s Pepsi affiliation, but this story makes me want to go!

    • Even Scott Johnson drinks Diet Pepsi at Panera…. Costco has also changed to Pepsi, so what is the world coming to??? Actually I don’t find Panera a very friendly place for my diabetes. They are like Whole Foods and put honey in everything. Yeah, it’s “natural” for what that’s worth, but the carb counts are high. My favorite Panera food is the turkey chili that should be showing up soon now that we are in autumn. I drool as I walk by the bakery display. I dream about the coconut with chocolate on top cookies/candies, but have never tasted one. Looks like an upscale Mounds bar.

  4. Thank you Laddie for the excellent interview. I first came in contact with Lloyd when he was a moderator at Diabetes Daily. He was one of the first people I met on line after I was diagnosed.Lloyd’s explanation of the technical aspects of the disease was very easy to understand. I learned about the A1c and the Standard deviation from Lloyd and why both together were important. It stirred my intellectual curiosity and began to research on my own. His success with insulin, encouraged and inspired me when it became time for me to start MDI, and starting carb counting was not intimidating at all. ( And yes, as a type 2, I use a LOT of insulin), and I suffer from many diabetic maladies. I have been able to maintain A1c s between 5.5 and 5.9%.. I used to refer to Lloyd as “The smartest guy in the room”.

    PS: His book is great…everyone should go out a get several copies for all their fellow diabetc friends and care-givers.

  5. If nominated for a contest with Laddie, I decline the nomination. If drafted, I’ll blow away in the draft!

    • Maybe we need to start picking our teams, Lloyd. Then we can have a diabetes Jeopardy match at Panera some Saturday, I pick Ann Wallen for my team. Who’s on yours???

  6. T1 and T2’s arrive at the same place from different paths. The difference is so small and getting smaller by the year.

  7. It is interesting to note how much Insulin your T2 friend takes and uses a pump to boot. I suppose I am fortunate as a T2 who used to take a lot of Humalog 75/25 mix until it stopped working for me.
    I had to go to regular Humalog and take 4 – 6 U depending on my meal. I use Basaglar as my long acting at 31U. I will not that I also take Bydureon and Metformin. I wear a CGM because I became Hypo unaware.
    That’s my story, your mileage may vary.

  8. Pingback: Feel Good Stories about Medicare CGM Coverage | Test Guess and Go

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