My Diabetes Evolution

I was diagnosed in 1984 but my slow onset diabetes likely started in 1983. I knew nothing about slow-onset T1D in adults, later known as LADA (latent auto-immune diabetes in adults). I used the same BG Chemstrips @DrBB used, comparing the color of the reagent pads against the panel on the strip container.

Meters that read the strips and gave digital readout followed a year or two into my life with diabetes. It was a great improvement even though I always suspected that the numbers were not absolutely accurate. I really appreciated when test time dropped from 60 seconds down to 15 seconds.

In the beginning, I remember getting in-range numbers without a lot of effort. I thought, “If this is all it takes to manage diabetes, then it’s not that big a deal!” I knew nothing about LADA and the likely residual native insulin production I was enjoying.

I always tested a lot, starting out with 5-6 checks/day and working my way up slowly to 15-20/day years later.

My insulin regimen started out with one shot of NPH per day and quickly morphed to two per day and the addition of Regular for each meal. Looking back, I can see that I was using the MDI regimen calibrated with carb counting before 1987 when I started on my first pump, a MiniMed 504.

I watched my BGs closely and often over-reacted to high readings with aggressive insulin corrections. My life was one long BG roller-coaster ride with mind-numbing lows. “Pre-bolusing” was not a concept I really understood. I just used the standard 15-30 minutes and of course knew nothing about “waiting for the CGM bend” during the '90’s and '00’s.

I became very good at anticipating and treating lows. These were not garden-variety lows that drifted slowly from the 80’s into the 70’s and '60’s over an hour’s time. These lows were fueled by insulin over-corrections combined with little patience. The lows steeply descended into hypo territory and I caught almost all of them – until I didn’t. All I can say is that I’m lucky to be alive with all the risks I took.

I jumped on the first rapid acting analog insulin, Humalog, when it came out in '96. It helped but I soon realized that it was just a marginal improvement over Regular.

I’ve kept track of my A1c’s over the years. I started out in the low 6% range and spent about 10 years in the 6-7% bracket. Around 2004 I started to gain weight and slowly increased my total daily dose to about twice what I had been taking. My A1c crept up and topped off at 8.5% in late '07.

I look at the period from '07-'12 as my time in the diabetes wilderness. My body had become insulin resistant. My overly aggressive insulin corrections caught up with me. I had gained about 25 pounds and the insulin just didn’t work like it used to. I could have been injecting water for all the effect it had bringing down high BGs.

I had no idea about insulin resistance and thought that I had some, yet to be diagnosed, serious malady. I would not have been surprised to have received a diagnosis of cancer during this period. It was during this time that I went through three endos in five years. I had always thought of endos as the high priests of diabetes. They were the experts and had all the answers. But they were zero help with my slow burning diabetes crisis.

I did start on the a CGM in '09 and that started to help me understand my metabolism. I also started reading at the TuDiabetes website and followed closely the low-carb controversy. Finally in 2012, I decided to give a reduced carb diet a try.

That’s when I got my life back! My blood glucose traces improved dramatically. I couldn’t believe how potent carb limiting was for me. My BG average came down from the 150-160 range to the 120-130 range. More importantly, my BG variability came down, too. It plummeted from the 60 mg/dL standard deviation neighborhood down to less than 30 mg/dL.

I finally started to enjoy a renewed sense of energy. My sense of well-being had eroded so slowly over the years that I didn’t really notice my poorer quality of life. But the restoration of that energy and well-being happened so suddenly that it was dramatic and obvious.

I now enjoy A1c’s in 5.5-5.9% range. I do have the help of an automated insulin dosing system, Loop. I still credit lower carb eating, however, as the biggest reason for my improved health.

Sorry, I didn’t intend to go on for so long but the words just rolled out!

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@Richard157 - I’ve read your story before but I enjoy your story nonetheless. If you prefer, I can request that my long comment be moved. What do you think?

On second thought, @Stemwinder_Gary or @Lorraine or @MarieB, can one of you please move my long comment to a separate post?

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I did not join this group right away. I just read the posts. I have learned a lot from your posts @Terry4. Even when your posts take a few paragraphs, they are very easy to read and very relevant and full of information that we can learn from or at least be reminded of. So thank you so much for your time and participation Terry. No need to change anything. Just be yourself. My Diabetes Guru. Thanks again.
Also, there are other gurus in this community. You know who you are. Thanks to all of you too.

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Anybody remember using any of these old pumps? Details please. Infusion sets? How often you change sites? How much they cost? Who trained you how to use it? Plus more. Thanks in advance.
Old%20Insulin-pump-technology

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I’ve been T1 for 35 years but I came to pumping relatively recently, so no. But I’m really curious to hear from others how these pre-Novolog, pre-carb-counting systems worked. Presumably they used R insulin, but what was the theory for how you were supposed to operate them?

ETA: great post, btw!

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How do you carry it? So big. So heavy. Hey young son/daughter, here is your new insulin pump! LOL.

Grandma on 1979 model insulin pump! Yay!

insulin-pump-sexy

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My first pump was an AutoSyringe AS-6C, in 1980/81. It came out in between the two AutoSyringe models shown. I knew people who had the AS-2C. It didn’t have a cover, and had blinking lights and was as big as a kleenex box, so there was no hope of being discreet! I honestly can’t remember how much mine cost, but my dad grumbled a lot so it wasn’t cheap.

It was quite basic. It had one basal setting, which you changed with a little screwdriver. For a bolus, you pushed a button until a little red LED screen showed the right dose. There were no extended boluses or anything of the other features we enjoy (take for granted?) today.

You had to dilute Regular insulin with saline. My first bottles of saline were screw-top, so it was far from sanitary. The infusion sets I used were a simple tube that ended in a 27G needle. They didn’t have butterfly wings or anything to help secure them in place. You taped ordinary surgical tape over the insertion site, so it was easy for them to get yanked out. You couldn’t disconnect the pump from the tubing to shower, so you removed the needle, then afterwards you just stuck the needle back in. One advantage: sites weren’t overused. One disadvantage: infections were common.

I had to stay in hospital a couple of days while my settings were fine-tuned. I remember a doctor saying I could keep an infusion set in place “until it feels irritated.” I don’t recall patients being encouraged to change pump settings on their own. How times have changed!

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Fascinating, @beacher, thanks for that more detailed account of what it was like. Still hard to get my head around the whole idea of using a pump at a time when most of us were still on R/N with “exchange” lists and absolutely no clue about carb counting and all that seems so inherent to how pumps work now. One question among many: given how ungainly and awkward the whole thing was, I’m curious how people decided to go on these systems in the first place. Can you talk about that a bit?

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@beacher, thank you for your detailed account of the old revolutionary insulin pump at that time. How old were you then? What was your attitude towards using that humongous pump? Did the use of that pump improve your A1C? Did you also have a glucometer then? Thanks again. I like comparing what we had then to what we have now. We have come a long way in very few years. Before insulin, being diagnosed with diabetes was a painful death sentence. How blessed we are now with the current biotechnologies available to us. Just think about the different insulin analogues available now. And more types still being developed. Afrezza, powder inhalable insulin with immediate action compared to injectable insulin. Brilliant! How about nano-insulin? Self regenerating insulin? Lilly, Novo-Nordisk, are you listening?

The MiniMed 504 pump pictured in your comment was the first pump I used starting in 1987. I had started seeing a doctor in San Francisco in 1986 who was up on the latest D-tech. He had tried to convince me to go on a pump a year before I did, but I resisted. I remember thinking that I didn’t want to be tethered to to a machine for the rest of my life!

The thought seed he had planted, however, continued to occupy my attention. I was on MDI at the time, taking a morning and night NPH injection and meal bolusing with Regular. My life was filled with correcting highs and lows.

I was seeing the doctor every three months and I finally agreed to try a pump a year after my doctor first suggested the idea. I remember the MiniMed (Medtronic did not own MiniMed at the time) salesman coming over to my house to get me started on pumping.

The only infusion sets that he had were the Polyfin “bent needle” sets. This consisted of tubing that connected to an insulin cartridge on one end with a leur lock. There was no quick disconnect at the site. The other end had a needle that was bent at about a 30 degree angle. Insertion was manual. The first one was relatively comfortable but the next few must have been inserted too close to a nerve and remember wincing in pain when I moved a certain way.

I contacted the sales guy and told him that I didn’t like these infusion sets and I would not continue pumping. He said that he would try and get me some of the new “Sof-Sets” that MiniMed recently introduced. I tried and like these new sets. Much like today’s infusion sets, it used an introducer needle that was withdrawn after the teflon cannula was below the skin. Sites were changed every two to three days, earlier if uncomfortable.

The pump itself was a simple device by today’s standards. It did not have a bolus wizard and I had to do all the math for each meal. It did not keep track of insulin on board and I remember doing many long-hand pencil and paper calculations when I wanted to take a correction dose. I think it did remember the time when I took my last several doses of insulin. I could program in several basal rates over the course of a day but I don’t think it could keep track of more than one basal rate schedule, like one for workdays and one for weekends.

Since you could not disconnect the infusion set at the site, you needed to take this non-waterproof pump into the shower with you. MiniMed sold “shower bags” to enable this. It consisted of a plastic pouch to hold the pump and a long looped handle that permitted hanging the bag on the shower head or from a shower caddy. MiniMed directed us to only use the bags once but I remember using these bags dozens of times.

The 504 pump used three “camera batteries” that were about one half inch in diameter and about one quarter inch thick. The batteries were a prescription item and covered by my insurance.

The programming on our pumps have come a long way since 1987. Keeping track of IOB was big help. Using a bolus wizard was also a great aid, especially when I was low and trying to figure out my insulin dose. I think the lowest increment on that 504 pump was 0.1 unit. I remember thinking that one tenth of an insulin unit was incredibly fine resolution.

It didn’t take too many years for that smallest increment of a tenth of a unit to be cut in half to 0.05 and quartered to 0.025. I think that parents of young children must have struggled to fine tune an insulin dose with only one tenth of a unit resolution. I don’t remember if these early pumps were indicated for pediatric use or not but I’m sure kids were using them even back then. “Off-label” prescriptions are not a modern idea.

As you can see with the photo in @arpida_seru’s comment, the 504 pump was the most modern of the pumps in 1987. You can clearly see MiniMed’s technical leap in miniaturization when compared to the previous pumps of the era.

I learned much later that the main driver of that development was Alfred Mann, MiniMed founder, using technology borrowed from space programs. Alfred Mann is considered by many to be the inventor of the modern insulin pump. He also developed and introduced the inhalable insulin, Afrezza.

Even though these early pumps look ancient by today’s standards, I feel lucky that I was not diagnosed with diabetes until 1984. I can’t imagine life with diabetes before that!

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I found this picture of my first insulin pump at this 1992 source.

11%20AM

The article did note that the MiniMed 504 cost $3600 USD. I didn’t remember that number since insurance covered my purchase and I only paid for a portion of that cost.

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I think my first pump was minimed 506 in 1995 or 96. Then 507/508, maybe a 511/512, and then the Revel series 522/23, which I still use today.

At one purchase, it was covered under my pharmacy benefit with $40 copay. Couldn’t believe it, but that option went away the next time I upgraded!

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So you were using R insulin in the 504? When you speak of calculating meal boluses, were you carb counting for those? I never even heard of it when I was using R.

Looks about the same size as the Paradigm I started with 5 years ago. Amazing, compared to those other walkie-talkie sized monsters.

Pump size has changed little over the years.

From top to bottom:

  • MiniMed 506 circa 1992 (same size and similar look as the 504, 1.8 mL reservoir)

  • MiniMed 511 circa 2002 - 1.8 mL reservoir

  • MiniMed 722 circa 2006 - 3.0 mL reservoir (My current pump used with Loop.)

  • Animas Ping circa 2004 - 2.0 mL reservoir

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Yes, I used Regular insulin in pumps until 1996 when I switched to the first rapid acting analog, Humalog. One of the Regular formulations I used was Novo Nordisk’s, Velosulin. My doctor told me that it had buffering agents in the mix to prevent pump occlusions.

Yes, I was counting carbs fairly early. I don’t know if my doctors encouraged that or if it came from one of John Walsh’s early books. I think I started counting carbs when I went on the pump.

When it comes to T1, you were bleeding edge! So to speak.

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Terry the bleeding edge T1. Lol.

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They were. I was diagnosed in 87 at 8 years old and used one very briefly. I don’t remember much about it other than it was about as big as me and that I hated it. I had to wear this big fanny pack with it, and I remember being terrified that other kids would try to grab at it it steal it, not knowing it was attached to me. It only lasted about two weeks. Awful thing. It was definitely pre mini-med.