Just got some interesting quarterly lab results

Type 1 and LADA
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Hi everyone,

Gonna post a long one for those who are interested in bloodwork, Type 1 weirdness, and general science geekery (there are a LOT of us on this forum like that haha).

The short story is very simple: completely normal BG except mildly elevated fasting BG and a below-reference range WBC. Everything else is normal (or even excellent).

Just got my quarterly lab-work back, and it’s the most “normal” since diagnosis last May, with a couple of weird exceptions…

  • My A1c was 4.6% (lowest since diagnosis)
  • My fasting was 101 mg/dL (first time it’s been out of reference range since diagnosis)
  • My fasting insulin was within reference range for the first time since diagnosis (6.6 mmol with reference being 6.0-14.0 mmol for this lab)
  • Lipid panel is glorious (low overall, high HDL, borderline nonexistent trigs, very low VLDL) and overall calculated cardiac risk is quite low (3.1%)
  • My White Blood Cell count (absolute WBC) was below reference, with neutrophils and leukocytes being at the absolute bottom end of the reference range
  • Everything else is normal

So, looking forward to my regular checkup on Friday with my metabolic specialist (who is convinced I don’t need to see her anymore), and my first appointment with an endocrinologist next Thurs.

My question is, anyone else who’s tested positive for antibodies in the past but has normal A1c, moderately high fasting BG, and low WBC? The only thing I can find out about WBC is that low absolute count is associated with Autoimmune disease (lupus and rheumatoid arthritis are the two I can find referenced online) or leukemia.

For reference, after getting my diet sorted out post diagnosis, my fasting BGs dropped from 180 at diagnosis to averaging in the low 80s. Six months later they were about 90 mg/dL on average, then 95 mg/dL at 9 months, and now my meter says my average fasting BG is 99 mg/dL, and just popped the 101 on my lab results. Had a fasting of 115 mg/dL last week, confirmed by a double test. This is even while my A1c has consistently dropped since diagnosis (7.8 -> 6.5 -> 5.8 -> 4.8 -> 5.2 -> 4.6). I tested positive (at the lowest possible reference range) for anti-GAD at 6 months post diagnosis.

So, the question: is this a “normal” progression for someone with really slow-onset LADA? Going low(ish) carb seemed to get me back to normal (along with Metformin) very quickly, but my low fasting insulin levels, positive anti-GAD, insulin sensitivity, and rapid (unintentional) weight-loss convinced my docs I am Type 1. I have a family history of middle-aged insulin dependency and Type 1 (because my great-grandmother became insulin dependent in childhood), and my youngest brother has been off and on insulin since 21.

The thing which has me weirded out a little bit is the slightly rising fasting BG while having an A1c that is firmly in the “really freaking excellent” range. No idea what that means. When I first saw the slight rise from 3 month average of 83 mg/dL to 90 mg/dL in fasting BGs, I dismissed it as likely not meaningful. But, since that time, it has consistently been going up very, very slowly.

Anyhow, thought I’d crowdsource some experience and wisdom haha. And yes, I know that my numbers are ridiculously good for someone that has been diagnosed as Type 1. I’m as confused as anyone as to why my numbers are like this while being antibody positive and not on insulin.

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Sorry I can’t help you much even though I believe my T1D diabetes onset was slow but I was unaware at the time of its early progression characteristics. I’m thinking many T1D LADA people’s experience is more like mine than yours. We didn’t sense anything wrong until it produced some dramatic metabolic symptoms.

I hope you get some responses here but it’s good you’ve documented your experience as I feel certain others will follow your path.

I’m curious about your younger brother’s use of insulin “on and off since 21.” Is his case like yours? Did he ever receive a diagnosis?

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Thanks for the reply Terry, and no worries on having no input :slight_smile: I know my little corner of the diabetes world is quite odd (and possibly quite small).

My brother was diagnosed as Type 1 at 21, then Type 2 at 25, then back to Type 1 at 30, and now he thinks he’s Type 2 again… I don’t honestly know how much is his interpretation and how much is official diagnosis. Like me, he’s had low fasting insulin (and low C-pep) scores, although it’s always just under or over the “reference” range. Like me, he’s had abnormal A1c (in his case 10+) and totally normal A1c (below 5%) over the years. He is not great at managing or monitoring his diabetes, however, so it’s hard to judge what’s going on with him. From what I can gather, when he eats very low carb he is mostly able to manage with Metformin and exercise. When he is not eating low carb, he ends up on insulin after going into DKA (has happened twice in last ten years). Then he “weans himself off” due to systematically cutting carbs out. Rinse and repeat.

He’s currently eating low-carb, and his daily BG is quite good (and A1c in the high 5s), but his fasting BG is consistently over 150 mg/dL. So he goes high in the morning and overnight, but normalized during the day (don’t know what that pattern means). He’s almost certainly noncompliant with doctors’ orders, and he’s also a highly unreliable narrator, so to speak… So all I really know is that he’s not currently on insulin and is struggling to keep his fasting BG under control.

My grandmother was also off and on insulin therapy for most of her adult life. She (like myself, my brother, and my great-grandmother) was athletic and very active, and she died of complications from polymyositis that weakened her diaphragm muscles. It’s possible that her blood sugar control (whatever was going on) was exacerbated by periodic steroid treatments of her RA and polymyositis. She would end up in the hospital due to not being able to breathe, on high-dose prednisone and insulin, and then (kind of like my brother), eat low-carb and low-calorie and “wean herself off” insulin over six months to a year. And then repeat the whole process. Again, not really sure what was going on with her. This was coal country, and the medical care was freaking horrible. Like, really really bad.

My great-grandmother was insulin-dependent as long as my grandmother and mother can remember, but this was long before testing for antibodies (she died in the 1980s). Another younger brother has similar characteristics to myself and his bloodwork indicates “prediabetes” levels with elevated fasting BG and 5.5% A1c. Also athletic, active, and eats well.

So, I have no idea what is going on with my family. I’m the only person I know for sure has tested positive for any antibodies, and that was very low levels of anti-GAD. 85% of my Mom’s family are diabetic, and about 50% are insulin-dependent. Another 25% are “sometimes on insulin.” It has definitely crossed my mind that I might come from a “Type 1b” family that hasn’t been diagnosed. My doctors have reluctantly classified me as “weird Type 1” based on my strange results, although I was originally diagnosed as “weird Type 2.”

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Those are head-scratching numbers, yeah. I only have two insights and neither one is especially illuminating.

First. slow onset can be highly variable. It can be only a little bit slow, or downright SLOW. In other words, erratic, unpredictable, and varying by individual (unlike other aspects of diabetes, :laughing: :laughing: :laughing:).

The other one is just a personal anecdote. When I switched to a low carb diet, my lipids suddenly became terrific, too. And I’m a lot older than you.

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Yep, I think you’re right on both counts! My day-to-day BG experience is highly variable, even if over a 90 day period it averages out to somewhat consistent (all an A1c really shows, after all…). I can eat low to moderate carb and have almost “normal” blood sugars, and then have 30g (which is still low carb for most people) of carbs for supper and my blood sugar shoots to 180 and stays there for three or four hours. I can also occasionally have a “normal” meal (especially when traveling for work) and have an absolutely “normal” response. So I’m wondering if I’m firmly in the “fits and spurts” stage of pancreatic function.

And as for lipids and low carb, it’s like magic. Mine were never bad in the first place, but my numbers now are in the “healthy twentysomething” range, which isn’t bad for a diabetic fortysomething. The part I’ve been happiest with is the high HDL and low Trigs.

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Yup. :sunglasses:

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Unfortunately we need to recognize that everyone is different. And there are types of diabetes which could behave as you describe, particularly ketosis-prone T2 (which is actually considered T1). And antibodies may or may not be relevant, some non-diabetics test positive for antibodies. Here is a study of ketosis-prone and ketosis-onset diabetes that looks at the presence or absence of antibodies.

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I don’t have antibodies (other than to insulin itself which doesn’t count) and this was my experience:

  • Diagnosed at A1C 10.7 and 400 fasting
  • Through regular low-carb (atkins style), I worked my way down to an A1C of 5.0 and fasting in the 80s.
  • Over the next year my fasting crept up above 100 so I cranked down harder on my diet, going “super” keto.
  • insert eating disorder here
  • 2 years later my fasting was at ~160 and would continue to climb up to ~200 before I’d eat lunch and then it would hang in the 150’s for the rest of the day.

I’m now on an insulin pump, eating again, and managing like a champ.

So even for non-T1 weirdos like me, it can be a slow process with occasional “perky pancreas” days that made me question if I really had diabetes. :grinning:

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So, to clarify, my question was about the low White Blood Count number:

Tests: (2) CBC/DIFF (CPT-85025)

WBC [L] 3.7 10*3/mm3 4.0-10.8

As @Brian_BSC says, I think my brother could definitely be in that ketosis-prone T2 category, it fits really well with his symptoms and history. My grandmother’s as well. I did just find an interesting article about WBC and diabetes, and it suggests that low WBC is associated with the early stages of Type 1, while high WBC is associated with early stages of Type 2.

More information on WBC and diabetes is available here.

@daytona, that sounds very similar to my brother’s progression, although he was originally diagnosed in DKA. I suspect there is more overlap between Type 1 and Type 2 communities than we are often led to believe. If both T1 and T2 are categories in which we lump people with lots of variation in their onset, presentation, and progression, then it stands to reason that there are likely overlaps in those categories. I also suspect that we only understand a fairly small portion of the biochemistry of diabetes, and the research community will continue to develop more (and better) tests to figure out what is going on with people.

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Hear, hear. I don’t believe (and never have believed) that the boundary lines between all the different types are anywhere near as crisp as traditional wisdom and popular culture treat them. One more reason why the internecine rock-throwing within the diabetic community is pernicious, hurtful, and utterly pointless.

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Most reasonable course of action for low WBC is to see a Hematologist.

Speaking from experience.

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Thanks for sharing that link! I just had very similar lab results. I was diagnosed a year ago after experiencing symptoms (extreme thirst, fatigue, etc. - all the usuals). As of December 2016, my GAD antibodies were off the charts (>250) but I still had some endogenous insulin production. My most recent blood work earlier this month showed everything in range, except for high fasting blood glucose (seems silly to even test this for someone who’s using a CGM and is on insulin therapy…) and low absolute monocytes.

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@Tim35, I’m very curious about your experience Tim. What were the outcomes of your low WBC after further consultation with a Hematologist?

General update, in case anyone is interested:

I just had an appointment with my Metabolic specialist (started seeing her when I was first diagnosed as Type 2). Have an appointment Thursday with the closest endocrinologist (2 hour drive). I thought my metabolic specialist’s interpretation of results (and my case, in general) were interesting, and may be of interest to others:

  • Low WBC: “It’s either nothing, or could be indicative of something serious. Many people, especially those who are very physically active and generally healthy, have WBC below reference range. In your case, it could also be related to onset of autoimmune disease.”

  • Low AIC: “That’s great!”

  • Occasional persistent highs: “That’s not great!”

  • Consistently rising fasting BGs: “Definitely not great, and getting worse. Glad you’re finally seeing an endo.”

  • Occasional lows related to exercise and heat while not being on insulin: “That’s just weird, and I have no idea what’s going on with you. I wish you lived in a big city, because your particular case of diabetes sounds like something research hospitals would be interested in.”

In short, she has concluded that I (and my family) are in the category Brian was discussing above: DKA-prone Type 2, also known sometimes as “Idiopathic Type 1” or “Type 1b.” She doesn’t think I’m very early LADA (or presymptomatic), simply because I was diagnosed last year meeting all diagnostic criteria for diabetes (180ish fasting BG; A1c of 7.5 or thereabouts; thirst, peeing, vision changes, etc.). I’m a bit concerned the endocrinologist is going to say “you’re numbers are fine, don’t waste my time.” However, my doctor suggested that this particular endocrinologist (who she’s worked with) wouldn’t have scheduled me unless she was concerned about something in my charts.

So, to summarize: I’m apparently insulin-sensitive, don’t produce a lot of insulin, probably had some insulin resistance around diagnosis last year, can go legit low (although mildly) with heat and exercise, have a mildly concerning fasting BG, and an excellent A1c at the moment.

I’ll update on Thursday after seeing the endo.

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tl;dr: I’m cured! /s

Well, just saw the Endocrinologist, and I’m even more confused now than I was before. I drove two hours and spent a considerable amount of money to see her, and the first thing she said after looking at my charts was “have you ever actually been diagnosed as a diabetic?” That sort of set the tone for the entire meeting. She told that I should:

  • quit worrying
  • stop testing so often
  • relax my eating and medication to the point where my A1c was between 5.5 and 6.0
  • continue seeing my family doctor for diabetes care “unless something changes”

She suggested strongly that despite a positive anti-GAD, a family and personal history of autoimmune disease, and a family history of Type 1, I’m just a weird Type 2. A well-controlled weird Type 2. Like my original PCP that I fired, she is more worried by my occasional lows than by occasional high blood sugars, and suggested the “below 140 mg/dL two hours after eating” was ideal, and that if I could hit that 80% of the time I’d be doing just fine.

I’m really not sure what to do with the minimal amount of advice she gave, and she’s not willing to be involved in my case “unless something changes.” Not even sure what that “something” would be, but… I suppose it’s “maintain and see what happens” for me for the near future. The one interesting bit of info she did give me, that I’d like a few opinions about, are her insistence that population studies show that having an A1c too low is associated with complications (of the macrovascular and cognitive function variety) almost as much as having an A1c too high. Even occasional hypos, she says, can cause heart and brain damage, especially over the lifetime of an otherwise healthy diabetic.

This makes me wonder if this is the “other half” of the advice we diabetics sometimes get from doctors about not lowering our A1c too much. In particular, she mentioned studies indicating that low A1cs (i.e., below 5.5) and recurring hypos (even relatively mild) are associated with early onset dementia in both Type 1 and Type 2 diabetics.

One thing she did mention which does make a certain amount of sense. I’ve cut way back on my endurance training because of repeated (and repeatable) mild low blood sugars starting an hour into a ride (or run or hike). She said that, despite the fact that I’m not on exogenous insulin, I should treat it as if I am: “fuel your exercise, and if that means you have to eat carbs before your workout, do it. Starting with a BG around 140 mg/dL is going to be fine for someone like you, and you know you’ll work it off in an hour and be back to normal.” I may actually experiment with this and see how it works out.

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I have always wondered about this and I have no answers.

I once consulted an endo about a strategy to control blood sugar during exercise (hiking) (this is pre-CGM and probably MDI with R/NPH days). I asked “so should I err on the side of being high (load up with carbs) or should I err on the side of going low and correcting?”. I never got a straight answer but I got a look that suggested that neither was appropriate.

So anyways… I just visited Dr. Google and got this like to a study based on DCCT folks:

https://www.diabetesselfmanagement.com/blog/low-blood-glucose-doesnt-affect-long-term-brain-function/

I think the big problem with low blood sugars is the more immediate risk of death (i.e. not waking up from sleeping through a low, crashing a car when low, loss of control, loss of consciousnesses) which freaks the doctors out as well as parents of toddlers with diabetes (like me).

I have heard that low blood sugars in toddler’s can impact brain development and that is why target blood sugars for toddlers are higher.

The ACCORD study is one discredited study that claims tight control causes a higher mortality rate, but the study is flawed in a few ways that you can read about in other discussions on this forum. It does not address cognitive abilities.Perhaps this is where the comment about macro-vascular issues came from.

The long damage from high blood sugars is well documented, but the long term damage from low blood sugar data is not studied as much in my opinion.

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In addition to what @AE13 mentioned, overnight lows that aren’t treated can cause heart arrhythmias that can be fatal (“dead in bed” syndrome). I read somewhere that this kills up to 6% of childre and young adults with Type 1. But from what you’re saying, you don’t have problems with overnight lows so much as lows during exercise.

I suppose the good side of all this is that, if indeed you don’t have LADA, it means that your current level of control won’t necessarily deteriorate over time.

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Not to be rude - but I flatly do not believe this.

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You don’t believe what? That I read it somewhere? Or that it’s correct?

I’m no diabetes researcher, so I can’t speak to the latter. But I did read it:

“The number of deaths of this kind per 10,000 patient years has been estimated to 2-6.4 For a population of 100,000 persons with diabetes, this represents 20-60 deaths per year or approximately 6% of all deaths in persons with diabetes aged less than 40 years.4”

http://www.childrenwithdiabetes.com/d_0n_g00.htm

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I do apologize for clearly offending you.

However I stand 100% by my post.

I will neither argue the math, the trivia nor continue anything which could be construed as a personal attack of which this is not.

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You didn’t offend me—I just wanted to clarify that I did read this inforamtion and didn’t just make it up. It is hard to tell intentions and tone in writing online. I truly can’t tell what you are disagreeing with and am not sure what point your posts are raising. I’m sorry.