I’m so confused


#1

I have yet to be diagnosed with anything other than hypoglycemia, with varying readings coming from bayer meter and libre (which I’ve found for me isn’t too accurate with lows, but it seems to be an issue?)
I’ve been through a lot of testing and I’m perplexed.
A1c is always below normal limits at around 3.9. However I don’t think I’m having that many dips in the day to cause this number? My endo and I theorized that maybe it’s when I’m sleeping, since a couple years ago I’ve started getting up in my sleep and drunkenly (that’s what it feels like) walking to the kitchen to eat junk. We also theorized maybe reactive hypoglycemia since I have dysautonomia. Now I think she was theorizing hypokalemic periodic paralysis, but I don’t know now after the mixed meal study results. My sugar doesn’t run very high, and at the mix meal study only hit 133, the 3hr glucose tolerance though it went over 200.
So here’s everything, if anyone has any clue
A1c-low
Fructosamine-normal!
Showing a little anemic with iron and transferrin borderline low and TIBC borderline high.
Mixed meal study
Baseline was normal and fasting 12hrs
Then:
Insulin -high at 106, 25 is upper normal
C peptide-high at 5.8, 3.9 is upper normal
Glucose again only shot to about 130.
These results repeated through the 3 hours

My last result at 4 hours my glucose had dropped about 30-40 points in 1hr to 78
And the c peptide and insulin were normal.
In the middle of the test my potassium dropped to a little under low normal and shot to mid range before returning to a little above the low normal.
ACTH and cortisol were fine.
We are waiting on glucagon and steroid test results.
Anyone have these issues with low a1C, hypos, and high insulin and c peptide response??


#2

I think i would get a CGM of some kind to test blood sugar over a 24 hour period. A Libre is quick and fairly inexpensive. I believe Dexom can still be used with a receiver apart from the pump. I understand Medtronic has a professional CGM that your doctors office can acquire for you to use for a 48 hour period. I also know that Medtronic has a separate CGM device, but I am not aware of cost or how well it works. I know my Medtronic CGM is nearly flawless but this is a different product and I am sure there are varying opinions.

Note: I am a Medtronic ambassador. My opinions are my own. They did not pay me to say nice things about Medtronic devices or the company. OK, they sent me a shirt and a cup but even I am more expensive than that.


#3

Have you had any imaging studies done on your pancreas?


#4

Not yet. Everything I read makes me think insulinoma.


#5

I tried the libre, it’s not very accurate at lows. The difference of 20-30 points on a low is huge.
I may contact my doc about cgm


#6

@Kbcd1989 - Out of curiosity, have you always had issues with hypoglycemia (i.e. as a kid) or did your situation arise recently (perhaps associated with some other illness or trauma in your life)?

It sounds awful. You’re pretty much living with the lows every day.

I don’t want to come off like a food nazi, but when all else fails often the it’s the simple things that can make a huge difference. Have you tracked which food(s) / food groups / food combinations cause the most severe reactive hypoglycemia?


#7

It came on shortly after my dysautonomia symptoms returned. They blamed the recurrence of dysautonomia on seronegative sjorgens.
Never had issues as a kid, these issues started after the dysautonomia when I noticed I was getting up in the middle of my sleep nightly and drunkenly going to eat in the kitchen (not good choices). Sleep study didn’t find anything useful, but they weren’t testing glucose either.
I ended up gaining back 90lbs that I lost the previous 2 years, and fairly quickly so.
I don’t even know where to begin with tracking, as I feel dizzy and out of it a lot - what is dysautonomia and what is hypo? I need a good meter, maybe a CGM. But there are worse times that it would be good to know. I used a libre which wasn’t too helpful as it’s not very accurate with lows.


#8

That’s what I’m also wondering about, Kb. I hope it is ruled out, via a CT scan.


#9

I’d imagine your nightly low BG excursions to the kitchen may be helped by toning down on evening (dinner) carb intake, and intentionally eating more protein (meat and cheese). I’d give it a try - often when I eat > 50 or 60 grams of protein my body takes 10-12 hours to metabolize it (which maintains higher blood glucose levels in the middle of night).

I’ve never tried the Libre CGM system. Instead I’ve relied on Dexcom G4 and now G5 CGM for past 4 years. My BG control wouldn’t be possible without a reliable CGM. I’m not sure if Dexcom is insurance deductible for you but for me in Canada, my health is worth self-funding several thousand dollars out of pocket,


#10

Good information, thanks!
If it ends up something that can’t be cured, I would definitely pay for the Dexcom out of pocket if it was pretty accurate with lows. I need a handle on this!


#11

The only meter that I have found to give BGL readings close to what my hypo feeling are indicating when in the lower hypo zone has been the Accu-Chek Performa and Guide.
The FreeStyle Optium and Optim Neo usually give lower readings for me when the Performa BGL readings are below 3.0 mmol/L (54 mg/dL); e.g: Performa 2.9 mmol/L Optium 2.1 mmol/L.
The Libre usually gave me the lowest reading when I was in the hypo zone.


#12

thats what i am continously thinking about


#13

You have mentioned this a few times. Would you be able to explain a bit more what you mean? Many people on these forums are successfully using a variety of technologies so it is possible you could get some concrete advice or assistance if you can elaborate on the issue you are having with this particular technology.