Just got some interesting quarterly lab results

Type 1 and LADA
41

Yep, I’m not yet on insulin, and I am on Metformin. And she is worried about the low BG (I have actual, exercise related low BG), which is why she wanted me to raise my A1c. And yes, honeymoon was mentioned as well. Her suggestions for raising my A1c (which I’m fairly certain I am not going to follow, at least not totally) were pretty simple:

  1. Cut back on the Metformin, and quit worrying about fasting BG til it gets a lot higher;

  2. Eat more carbs (I’m on a moderately low carb diet, around 90-120 g per day including a lot of fiber, so between 30-70 g net per day);

  3. “Feed your exercise” by raising BG beforehand and keeping it higher during exercise.

Of those, I think the last one I will actually work on. I’ve stopped endurance training because of a combination of low BG (not super low, but dropping down to 60s and even 50s if it’s hot out) and losing weight. I’m still not sure I can manage to balance training, carb consumption, BG, and weight, but I’ll give it a shot (I miss cycling and would like to start training swimming and running again for a triathlon).

Yes, I’m almost positive that I’m in the “pre-symptomatic” stage of T1. I have a ton of relatives with T1 and other autoimmune disorders, am insulin sensitive, and other such symptoms. My grandmother and youngest brother have also had the “extremely slow onset” variety of LADA, where they were diagnosed with high BG, then quickly got it under control with diet and exercise, until eventually (10 years for my grandmother) they became insulin dependent. So I figure I’m likely in that long, slow phase.

As for work and being diagnosed Type 1, I’m not worried about it. I work for the government, but I’m in an office job (research fellowship) at this stage rather than field, so diagnosis won’t affect my work status. And the agency that I’m likely to work for full time starting next year doesn’t have issues with Type 1s as long as they aren’t field-deployed to remote areas (which I won’t be). In fact, several of my colleagues at the agency are Type 1, which is kind of cool: I know exactly two Type 1s in real life, and both are adults who I work with.

42

You expressed some dissatisfaction at your docs attitudes (ADA hegonomy?) earlier in this thread. I think it’s great that your doc is thinking of where you are right now, she has mentioned the honeymoon, and getting you to a level of health care that’s right for you wher eyou are right now. I think it’s actually very nice that your endo is discussing bg regulation strategies at this point and giving you some choices to prevent hypos, even though you aren’t full-blown.

There is so much emphasis put on lowering bg’s, here and in the media, that it sometimes takes a doc to remind us, that “backing off” by cutting doses really is the appropriate thing to do. I’m not sure exactly how you back off Metformin if you are already taking presumably the smallest size but I think some do cut it in half.

I’m perfectly familiar with the “eat before exercise to prevent hypos” strategy but, just my opinion, reducing medication to not require eating before exercise seems preferable.

I remember back to my first weeks in the hospital after diagnosis and back then the standard treatment for hypos was sugar in orange juice. Man I hated it when they forced that on me. To this day I cannot stand the taste of orange juice, or even just look at it, without recalling those incidents and me being unhappy with being forced to eat when I wasn’t hungry. If I had to pick one thing about diabetes that I dislike, it’s that sometimes I have to eat whether I’m hungry or not just to keep my bg from going low. I think I hate that even more than having to take medication or checking my bg. It’s not that I dislike eating yummy things! But sometimes I’m not actually hungry. And other times my bg goes low and I eat everything in the fridge.

1 Like
43

I sure agree with this, as I think would most of us here who are also hopeful of losing a pound or two. I know things are not like the days of N/R (I think it’s @DrBB who described this regimen as “eat or die”, or something to that effect) so I guess it’s all relative, but still…

44

I think you’re right, but the issue for me has been not cutting back the Metformin to the point my fasting BGs are above 120 mg/dL, while maintaining everything else. Unfortunately (or fortunately, depending on how you look at it), my only two tools for changing my BG are eating (or not eating) and taking Metformin (or not taking it). Balancing carb intake with exercise and Metformin dosage to maintain weight while not having high BG has been… challenging for me.

And I am very fortunate, and understand that. I have the easiest damn case of Type 1 on the planet I’m pretty sure, at least for now. The only thing that bothered me about the Endo’s directions were the advice to raise my A1c. She was absolutely convinced that, as a diabetic, I should not have a “normal A1c or blood glucose.” The logic seems tortured to me, since I’m not on insulin: it is commonly assumed that low A1cs (below 5.5%) are derived from frequent hypo events caused by insulin reactions. However, in my case I have very infrequent and mild lows (like…two or three a quarter) resulting from intense endurance exercise (or work). My A1c isn’t a reflection of frequent insulin-caused lows or the infrequent exercise lows I actually have, it’s a reflection of that I’m not overloading my endogenous insulin production with more carbs than I can handle and my use of a low-dose Metformin.

If I was taking exogenous insulin and experiencing any lows at all, I could totally understand the direction to relax the strict control. It seems completely nonsensical to me, on the other hand, to purposely compromise my fasting BG and postprandial BG in order to have an A1c between 5.5% and 6.0% (which she believes would be “ideal” for me as a diabetic). I’m not sure she’s wrong, but I’m having difficulty figuring out why I should run higher than “normal” BGs just because I’m diabetic when I’m otherwise non-symptomatic (at least with my medication and diet). The other bit of “iffy” direction I got is that when my BG does become compromised, she said she’d prefer I add another oral rather than insulin.

For whatever reason, I seem to live in an “insulin as a last resort” corner of the U.S. I’m serious about that: despite being antibody positive, I’ve had three doctors (two primary care and one endo) state that the goal of my management should be avoiding insulin dependency as long as possible. All of them describe acute hypos as the real danger of being Type 1, and all of them view complications of high BG as being unavoidable. I find that…incompatible with what I’ve learned from Type 1s here and elsewhere. When I questioned my first doctor about this, he gave me a story about how he lost a med-school professor who died from a critical low, and this was supposed to be taken as a cautionary tale on why I should never (if possible) use insulin.

Anyhow, I couldn’t possible use insulin now other than as an occasional correction for a postprandial or the rare persistent, mild high BGs I have every once and awhile. So, the “treat this as if Type 2 and eat to fuel exercise” direction makes perfect sense, for now. Not sure I’m going to purposely raise my A1c, but I will definitely try to start training again with eating to up my BG beforehand.

As for orange juice…I used to be a drunk, and I drank far too many screwdrivers. Even the smell of OJ makes me sick to my stomach these days, and I can’t imagine that being the only cure for a low! But yes, even in my limited experience (of having to eat my way out of a persistent low BG from exercise), I really dislike it when I have to eat. I recently tried to gain some weight through heavy lifting and eating like I was 16 again, and I more or less gave up because I literally couldn’t force myself to eat 4,000 calories a day (and wasn’t gaining weight anyways).

45

This is a point that Dr. Bernstein takes exception with almost all his fellow clinicians. Bernstein believes that all diabetics have a right to normal (read non-diabetic) blood glucose levels.

I am one patient tired of the seemingly reflexive reaction of doctors looking at a sub 6.0% A1c and automatically assuming serious and frequent hypoglycemia. I know from reading various study reports that non-diabetics often drop below 70 mg/dL (3.9 mmol/L) during the early morning while sleeping.

The American Diabetes Association published conclusions made by the International Hypoglycemia Study Group, in its goal to standardize hypoglycemia records during studies:

The statement outlines proposed glucose levels to define severe hypoglycemia as:

Level 1: A glucose alert value of 3.9 mmol/l (70 mg/dl) or less. This need not be reported routinely in clinical studies, although this would depend upon the purpose of the study.

Level 2: A glucose level of <3.0 mmol/l (<54 mg/dl) is sufficiently low to indicate serious, clinically important hypoglycemia.

Level 3: Severe hypoglycemia, as defined by the American Diabetes Association, denotes severe cognitive impairment requiring external assistance for recovery.

The complete statement will be published online at Glucose Concentrations of Less Than 3.0 mmol/L (54 mg/dL) Should Be Reported in Clinical Trials: A Joint Position Statement of the American Diabetes Association and the European Association for the Study of Diabetes | Diabetes Care | American Diabetes Association on Nov. 21, 2016.

I view my Level 1 hypoglycemia as an alert for me to take action. My response to Level 1 hypos is much different than Level 2 hypos, the “serious, clinically important” kind. I get the impression that many clinicians encourage a Level 2 response for Level 1 hypos. I don’t agree.

2 Likes
46

“Eat now or die!” ™. But yeah, that was really the R/NPH experience I was referring to, not basal-bolus or pump. Though those have their own version: “let’s see, x am’t of carbs at lunch = x units of insulin, except I need to subtract a bunch if I’m going for a bike ride later, except then I’m committed to that ride and it looks like it might rain and I don’t want to have to ride in the rain but if I take all the insulin for the carbs now I’ll be risking a scary crash unless I eat more carbs then and I don’t want to have to eat more carbs when burning carbs is part of what I’m trying to do in the first place…” etc etc. Still, I’ll take that version over the old “OMG this meeting is going on forever, it’s 12:03 and I can feel I’m already crashing and the sandwich line is 15 minutes long!”

1 Like
47

Yep, it seems to me that I experience infrequent “Level 1” hypos due to certain kinds of exercise when my starting BG is in the “normal” range (75-95 mg/dL). I have only ever experienced one “Level 2” (I tested twice to make sure I was actually at 50 mg/dL, and was at 52 mg/dL the second time) hypo, and ate a fairly high-carb energy bar (which shot me up to 190 mg/dL) to “fix it.” This was about a month after diagnosis, and I figure I likely overreacted by eating too many carbs.

What seemed to me to be “strange” about the good Dr.'s advice to me was that although she didn’t think I should be on insulin, she did seem to think I should treat hypos as if I was on insulin therapy. That’s what doesn’t make sense to me. She seemed to think “normal” A1cs were fine for diet and exercise controlled Type 2s, but that because I’m Type 1 a different set of rules apply. When I asked why this was, she offered that there was research suggesting low A1cs in diabetics were associated with early-onset dementia and other cognitive issues in adulthood.

48

The statement outlines proposed glucose levels to define severe hypoglycemia as:

Level 1: A glucose alert value of 3.9 mmol/l (70 mg/dl) or less. This need not be reported routinely in clinical studies, although this would depend upon the purpose of the study.

Level 2: A glucose level of <3.0 mmol/l (<54 mg/dl) is sufficiently low to indicate serious, clinically important hypoglycemia.

Level 3: Severe hypoglycemia, as defined by the American Diabetes Association, denotes severe cognitive impairment requiring external assistance for recovery

I would like to submit, from my personal experience, Level 4: Overreacted, ate everything in the fridge and bg now more than 1000.

4 Likes
49

One of my unanswered questions in life is “What is a low blood sugar?”

I was taught when I was first diagnosed that anything below 70 mg/dl was low to be treated (but was a somewhat normal part of life) and below 50 mg/dl was something to be avoided. When we changed to mmol/l, that became 3.8 mmol (I know - 3.88888 just go truncated to 3.8 instead of rounded up) for “treat the low” and 2.8 mmol/l for you should avoid this. I use these numbers to this day.

At some point, people (Diabetes Canada clinical guidelines) decided to round up (I guess) and now the clinic my son goes to says anything below 4.0 mmol/l is a low (I assume that much like 70, this was chosen to be a nice round number). But they (Diabetes Canada clinical guidelines) still say 2.8 mmol/l (50) is a danger low.

Many years later, I because friends with someone who’s brother was a Type 1, who practices “extreme control”. He told me that his brother used 60 (3.3 mmol/l) as his low limit. This was surprising to me, but made some sense.

I also noticed that reading Dr. Ponder’s “Sugar Surfing” book, that he was calling something around 60 as a a low in his graphs. This again surprised me because of the conventional teachings.

In my personal experience, being in the 2’s (40-50) is when I see the classic low symptoms (sweating, shaking, flashbulbs in the eyes), but I am still able to treat myself. I definitely try to avoid this area. In the 3-3.5 (54-63) range I know I need to do something.

Over 3.5 (63) (ok 3.5 to 4.0 (63-72)), I can function normally but will treat in this area, or if I recently ate a meal and have dropped in to that range I will wait it out until I rise. I see this as the ALARM region - where I need to do something. I do not see this as a “bad place to be” or a “failure” but just a temporary BG that can be safely dealt with. Back to the OP’s definition of low, I do not see this as a dangerous place to be for a short time period.

I actually set a CGM alarm at 4.5 (81), because I usually want to live in the 4.5-5.5 range (81-99).

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Struck me as strange when reading your account too. Meant to comment on it, then forgot. Must be that early onset dementia.

1 Like
51

Level 2 leads directly to Level 4 in my case.