T1D Food Question

Hey I am reading this again and want to clarify: no offense intended @theNoz none at all. I am not a doctor so I can’t comment on the opinion of a subject matter expert such as your surgeon and my contradiction should be taken with a grain of salt. I too am a highly successful design engineer (machines, mechanisms and controls) working for a world class company. In my field I am also a subject matter expert. My brain is working sufficiently. I have had many thousands of lows, some quite severe, but in 40+ years none requiring medical intervention. My knowledge on this subject is a matter of my personal experience, and other experiences will surely vary. I’m sorry if I caused offense again if I did it was unintentional. Cheers!

Absolutely none taken, @joe! No, in 58 years no endo has so much as mentioned worse damage from lows than the accidental accidents you mentioned. My worst low BG war wound is a notch in my chin from passing out over a sharp-cornered sink (back in the 70’s someone had given me a couple brownies and not specified that they contained hashish, oh, thanks a lot). But I did hear a lot about one person who slipped and fell in the tub and died almost instantly from their head hitting the rim of the tub.

No, I think either this brain surgeon that I saw - and really, the profession almost begs mocking - was exaggerating, perhaps a lot, when he told me that lows do permanent brain damage, or brain surgeons don’t know how to communicate what they know to endocrinologists who gee maybe need to know stuff like this.

I am inclined to think he was not lying outright but exaggerating the incredible urgency. He wasn’t much worried about me developing dementia despite 7+ concussions (a few really bad) and a physically fit grandmother who was senile for 30+ years before she died at 97. The only thing he made sound urgent in our whole meeting was diabetic lows.

Sadly, he seems to be the only brain surgeon you can snag an appointment with around here, and it took 10 months for me to get in to see him. I’d sure love to hear what another brain surgeon has to say about it.

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I do not believe there is any good clinical evidence that on-going recurrent lows have any impact on cognitive function. Hopefully not as a T1D we all have many lows.

I would not be concerned about this at all. We all have enough to worry about.

Hi Nicole - I see lots of great info so I will not add much. As you and your son are so new it will take some time - so spend the time getting the info and numbers for your son. Hopefully you have your carb/insulin ratios as well as a non-meal / treat bolus reduction ratio (that is how much will a unit of insulin reduce sugars without any food / carbs) of insulin all worked out.

Also, since I see a lot of discussion on LOWS, it really is critical that he has not only his insulin and syringe in his pocket at ALL TIMES, it is also critical that he has sugars / carbs available ON HIS PERSON also at all times to address lows as soon as they happen. As an example I almost always have Life Savers or DOTS in my pocket at all times.

Feel free to reach out any time and it is great for your son to have such a supportive mom

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Man falling from a skyscraper, yelling to onlookers “No problem yet, I’m OK”.

Joe hasn’t hasn’t had practical damage - yet. He may never, if he’s lucky.
Luck is not a sound survival strategy. People never really believe that something might happen to them - until it does, like getting old.

Doctors are legitimately concerned about lows because they cause accidents and injuries. Not every time, but often enough. Doctors are the ones who have to deal with people who experience serious injuries.

It only takes one low in a dangerous situation where good judgement and reflexes are needed to seriously and permanently injure yourself. The brain is as likely to suffer trauma as another part of the body, and is less able to heal. Driving is especially dangerous.

The more frequently you experience lows, the higher the probability of another low, and an injury.

I’m now in my 70s, had T1D for most of my life. I’ve never met a person with T1D who would welcome having another low. Medical insurance companies pay thousands of dollars per year per patient for insulin pumps with CGMs designed to prevent lows. They don’t do this out of altruism; it saves them money.

Lows happen unexpectedly, or they wouldn’t happen. When you experience one severe low you deplete the stress hormones that create the warning signs and are more likely to have another within 24 hours. If you experience nocturnal hypoglycemia it affects your ability to sleep, shortens REM time and takes a toll. The experience is stressful physiologically and psychologically. It affects quality of sleep, health and thinking- whether you recognize it or not. Chronic stress causes other diseases and shortens your life.

The long term problem with chronic lows is that they are the result of inadequate management of diabetes and are symptomatic of poor self-health care, chronic highs and wild BG swings. Those do have diabetic consequences.

There’s also a statistical association between poor long term diabetes management and increased probability of Alzheimers.

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Excellent points. When tight control first “became a thing” I remember hearing reports that people were being hospitalized with lows who had not required hospitalization previously. . I thought doctors were recommending lower numbers (how low I don’t know) and things went too far either by patient choice or perhaps doctor guidance.
As with alcohol, lots of things can happen when you’re low, not least of which is impaired judgment so you think you can do something you cannot safely do. I can feel perfectly fine art 50 but thankfully I realize I shouldn’t be driving a car. That rational thought does not come into play for everyone. So as @psjdrf911 noted, I could have my share of numbers in the 50s and live a good long life with no apparent damage - or I could lose consciousness and…
All things in moderation is a good guideline for life, and working to keep lows and highs (particularly extreme ones) to a minimum is something we all strive for. The brain needs energy which comes through food. It stanfs to reason that depriving it of that may do damage over time. Why take chances that you’ll be one of the lucky ones not affected.

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What doctors have been recommending for numbers are A1Cs under 7 or 6.5 (internists, endos) for most people. That’s about the same as average glucose levels of 154 and 140. Newer guidelines use Time in Range (mg/dl) greater than 75% with only a few percent above 225 or below 58 . Worse values than those, high highs or low lows doesn’t matter. Both correlate with greater degrees of complications or danger.

When I transitioned to a pump my endo gave me conflicting information - a desirable A1C below 7.5 because I’m “older” and a pump target of 110 mg/dl that’s equivalent to an A1C of 5.5 .
Neither has any basis to make them relevant to my treatment. The first is a “good enough” target for people who aren’t in control to start based on statistics of all persons over age 70. It applies to populations not individuals.

The second number is aspirational for the endo, not practical for a patient and not motivational. You can tell a pump or a person to strive for it, but few will achieve it. It has no value as a training objective. You don’t give a student a goal that they don’t have a high probability if easily achieving. Kindergartners aren’t introduced to numbers and told they will be expected to do double entry bookkeeping, and if they do it wrong …

Why was I given an A1C target for old sick people and a target suitable only for those with the great control needed to avoid going very low?

I learned a lot about T1D and the tools available to manage it from experience, research, and the shared experiences of others with T1D. When one person has an experience its interesting. When many have the same experience, it’s important. When a clinical trial finds something statistically significant, promising and worth further investigation, it’s not proven reliable or relevant to treatment. Too many medical guidelines are based on weak statistics, not an understanding of what’s happening or why.

I asked for a Tandem pump with Basal IQ to start because 1) my problem was nocturnal hypo, and 2) my variation in a day was wide, and 3) I knew that getting the basal profile, ICR and CF right were critical for either of Tandem’s pumps algorithms to work well and not need a lot of manual corrections, and 4) pump infusion is not 100% reliable.

The last factor is critical for my testing and my treatment. Unreliable measurements and interruptions make it hard to separate values from noise and distortion. Many more tests are necessary under varying conditions.

Sites are a problem, not just fat layer thickness but permeability. In general, the longer you do injections or infusions, the more the interstitial tissue becomes resistant to diffusion and infusion. Sites become less reliable, the probability of a “bad” site rises from single digits. After +40 years of MDI, my failed site percentage for pump+CGM is much more than 10% every time I change site, higher when I use an easily reached one.

The tech is pretty reliable, the human body isn’t.

I never know when a site will fail. My sensors have failed up to 72 hours after insertion with erratic behavior during the second day. Some infusion sites have failed immediately, others randomly.

So having a target of 110 instead of higher significantly increases the probability that any level of looped system will either let me pass in to or push me into danger unless I check the response attentively. What the FDA allows from an approved pump algorithm provides statistical safety, not assured safety for me. I have a permanent alarm set for 2 am to check on my system.

One day out of 10 my system isn’t trustworthy. The right ICR, CF and meal carb grams and a working pump motor mean absolutely nothing if the pump gets the wrong glucose level and/or the insulin doesn’t get delivered to the bloodstream.

110 mg/dl is fine for an endo to want for his patients, but imo it isn’t a safe pump target today. The middle of the desired “in control” range 135, is safer.

I set my target to above 120 so the Basal IQ algorithm didn’t interfere with my determining my basal profile, ICR and CF. I need extended boluses to be completely delivered and measure the results. I needed suspend Tandem’s algorithm to avoid a sudden short compression or activity dip triggering a shutdown of delivery during the extension and not delivering the remainder. Control IQ is better, but does almost the same thing.

It makes sense to use technology to ease achieving what you can do without it. It doesn’t make sense to rely on technology that isn’t reliable to do what you must b00e able to do if it fails. Loop systems at their best aren’t as good as open systems with an attentive, capable human manager. I already know that I will be trading convenience most of the time for a loss of QOC in my management, more work for me when it’s not working and more work to maintain the tech. It’s literally just like Windows 95.

My point is that if you accept diabetes, know that it can be managed but not tamed, understand how it behaves ans and how to monitor and manage it, then you can live without it interfering badly with your life or hurting you badly for a long time. If you don’t, won’t, or can’t it’s like trying to live with a hungry tiger.

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OK, lots of good information here and well worth this discussion. There are topics posted about hypoglycemia, the dangers and advice for avoiding or at least minimizing lows.

Now it is time to get back to the topic - T1D Food Question