My tests came back "normal" but I think I'm diabetic

[Evie]

Apologies if this isn't the right place to put this.

I recently went to the doctor and finally decided to get checked out for reactive hypoglycemia. I'd avoided mentioning my symptoms in the past because there is a family history of diabetes, and I was worried that perhaps I was wrong about it being hypoglycemia. The doctor told me that he agreed with my assumption that it was reactive hypoglycemia, but we'd do other tests as well to rule out other issues.

My usual symptoms: I'm frequently dizzy, disoriented, my body feels weak, sometimes my legs go numb while walking. During my worst 'episodes' I'm outright delirious and can barely communicate. However- everything fixes when I eat. And some foods such as a peanut butter and jelly sandwich, or ice cream, would trigger the reaction more than others.

I was given the following tests: BMP, C-PEPTIDE, TSH, HEMOGLOBIN A1c (GLYCOSYLAT).

The nurse/secretary calls me this morning to tell me my results were "perfectly normal". My appointment to discuss it with my doctor is in one week but I'm really anxious.

My doctor gave me a Freestyle Freedom Lite meter to keep logs of my waking blood sugar, after-meals, and any time I feel symptomatic. From my logs I'm really convinced I'm diabetic. I was 323mg/dl a half hour after lunch today, yet other days I'll be the complete opposite, falling as low as 44mg/dl.

Is there any remote chance that the nurse was right and I'm not diabetic(even with those ridiculous numbers)? Would it be worth asking for an oral glucose tolerance test? How could none of those tests manage to find anything?

I'm just so frustrated. :(

edit: My blood sugar upon waking is usually 80-95. The day of my blood tests(after 12+ hours fasting) I was at 69 before eating. Also: I'm 20, female, and have a BMI of 20.1 if it's relevant. I have not experience any unexplained weight loss.

[foxl]

323?!?

Has your doctor run an A1c, as well? (ETA D'OH you did. But that too is not the end-all of diagostic criteria. How about an oral glucose tolerance test to go with the rest? They like having evidence under lab conditions).

I think I slunk along under the radar for some time, personally. It happens.

I had hypos about 18 yrs before diagnosis (lost weight in between).

[Grunch]

If you were in fact at 323 then you're diabetic, but maybe your finger was contaminated. Ask them what your A1c was and go for the glucose tolerance test.

[foxl]

Yes, I too thought about possible contamination but then did not say it!

Hypos like that though often precede onset of T2D.

And if you are young and quite thin ... I would be looking at antibodies, depending on your C-peptide -- you need to ask about wether it was upper or lower end of normal.

Also, look into MODY -- many people with a family history of T2D end up turning out to have MODY. It looks like insulin resistance, but is not classic T2D and there are better treatments for it if it is understood.

Blood Sugar 101 website has a lot on MODY ...

[JJeenn]

Do you wash your hands before testing? Was that 300 reading the only high one you've had, or are you getting them regularly?

If it was just a single reading and you're not washing your hands before testing I'd be suspicious that it was a meter error.

I use a Freestyle meter and it's quite prone to giving false high readings if my finger is at all dirty. Whenever I'm high I wash my hands and retest to confirm it before taking any action because of this.

If you're washing your hands and are getting multiple high readings, then it would definitely be a good idea to talk to your doctor and get additional tests done (I'm thinking a glucose tolerance test and antibodies, as others have said).

[Evie]

The family history is all Type 1's by the way :x On my dads side of the family.

I'm guilty of not always cleaning my hands before hand. The majority of the time I do (the times I haven't are usually when I'm rushed or feeling symptomatic, so I'm trying to hurry up and get it over with so I can eat or run to class/whatever).

Over the course of 17 days of tracking I've had 44, 66, 69, 74, 76, a lot of 80-107's, a few 121-130's, 141, 146, 147, 149, 157, 218, 282, and today's 323.

Today I tested (admittedly without cleaning my hands ahead of time):
323 mg/dl at 1:47pm
227 mg/dl at 2:05 pm
158 mg/dl at 2:25pm
130 mg/dl at 3:10pm

I thought to test myself at 1:47 because I noticed I was feeling unbearably thirsty, but I was cold and hadn't been moving around a lot to make me so.

I'm thinking that maybe tomorrow I'll try to eat a similar meal like I had for lunch today and then test to see if I can replicate the results with clean hands? My body should be somewhat predictable, right?

[Grunch]

With those results it seems like you did have a real spike. What's your age and weight?

[Evie]

4'6", 83.4lbs...

[Grunch]

Your age? Definitely ask for antibodies testing and OGTT.

[Evie]

20, stated in my edit. I'll definitely write some notes for that, thank you.

[jer.lawrence]

I agree that it sounds like something, over 300 is nuts. What did you have for lunch to cause it to spike that high?

It looks like (based on your numbers, time, and description) that you ate around 1:15? Two hours after 1:15 (3:10), you were back down to 130, which is within the technical "Non-Diabetic" range. Did you feel like you went low afterwards?

I'd be shocked to learn that you are NOT diabetic, but the 2h pp WAS under 140..

[Evie]

I agree that it sounds like something, over 300 is nuts. What did you have for lunch to cause it to spike that high?

A completely non-nutritious, yet tasty, overindulgent meal :o 1 slice whole wheat bread with 1 tablespoon almond butter and roughly 1/3 apple on top and then I ate a coconut larabar. Roughly 428 calories, 103.7 carbs(52.4g sugar) (yeah, those were painful to see when the math was finished). As far as I know though, even if a "normal" person ate something that bad they shouldn't hit 300's right?

My earlier 282mg/dl reading was a week or so ago and I'd eaten one 6" Italian sub and 3 cherry tomatoes(bread again, much?).

(For what it's worth, I usually eat a fairly healthy diet.)

It looks like (based on your numbers, time, and description) that you ate around 1:15? Two hours after 1:15 (3:10), you were back down to 130, which is within the technical "Non-Diabetic" range. Did you feel like you went low afterwards?

I think I ate around 1:15 yeah. I was putting some shopping away and such, so I didn't track time well. Something (very odd, as far as I can see) that I've found is I feel worse/most symptomatic when I'm in the 80's. Which is "normal" ranges, so it confuses me greatly. I tend to feel fantastic around the 200's. At the 323 mark I felt kind "wired" body-wise, and really thirsty with a slight (possibly unrelated) headache coming on. Not really weakness or the usual symptoms though.

[foxl]

Evie, I would push your PCP to see an Endocrinologist, and pronto. It really looks like something is going on and you need autoantibody testing and a full evaluation -- maybe continuous glucose monitoring -- to provide evidence of your variation in blood sugar control.

[Moonglo]

I agree with all above... not to mention that, on rare occasions, labs do make mistakes. I would not dismiss your hunch here... definitely keep looking into it.

[Evie]

Ugh. I give up. :mad:

Okay, so I tested myself every 30 minutes after dinner for two hours, and also tested my dad. He ate a slightly higher carb meal.

(cleaned my hands well before each)
I was at 75mg/dl before eating.
Finish eating dinner at 5:30
6:00 - 190mg/dl
6:30 - 352mg/dl
6:40 - 198mg/dl
7:00 - 165mg/dl
7:30 - Here's where nothing makes sense. We had my meter checked at the doctor's office a few days ago because I got similar readings like this(they found it to be accurate and working fine). It came up 104mg/dl, which seemed strange to me because the progression seemed like it should have been higher, so I retested. The second was 154mg/dl. The third was 99mg/dl. The fourth was 311mg/dl. These fingers were cleaned well, I seriously don't get it. All had good sized blood samples too.

My dads tests, even when he did a few within a minute of each other, don't have more than 1-5 points difference. .-.

edit: forgot to add. My dad hit 146 at his highest, 30 minutes after the meal, then went back down to 105, which seems to be his "average" (he's always 100-105 when I test him).

[jer.lawrence]

I can't really speak to meter variance, maybe someone else can.

I believe "Normal" ranges are considered to be 70-140 -- over 140, and "damage" can start occurring. It's likely not noticable at first. I was up to 320 when I got my first test done, and that's where I started noticing symptoms. I also still feel fine if I go a little high, but I think (and it could be my imagination) that I can start to "feel" it if I go around 170 or so. I get more fatigued and don't feel like doing anything.

But, anyway, YES, see a doctor. Those numbers are pretty wacky. It does seem like your meter is a little odd as well, with readings all over the place like that.

[jer.lawrence]

What kind of meter is it? Could you try a different one?

Edit: I got my second meter (of course, both of them are OneTouch) about a week ago and tested them side by side -- they were within 5 points of one another. Yours do seem all over the place.

[Evie]

My doctors appt. is on the 23rd, so I'll address everything with him at that time. It's a Freestyle Freedom lite. I don't currently have access to another one. Finances are kind of tight at the moment and we just bought a new pack of strips (which our insurance refuses to cover), so I think I'll just have to wait until my next visit.

My grandmother is the closest type one to me, but she lives 3 hours away, so that is not feasible at this time.

[UpNorth]

I think you really should ask about the tests others have mentioned. No one without diabetes should ever be able to go over 300 even after having cotton candy! You definitely have something going on, and with such a family history... Keep an eye on it, avoid too much carbs and stay hydrated.

[Evie]

*sigh* Yesterday was a trip. I occasionally have really severe, really sudden bouts of hypoglycemic symptoms, but usually it's more gradual. Yesterday I had two severe episodes in the same day.

One was in the AM, I tested:

7:25 - 76mg/dl upon waking
8:00 - Breakfast (steel cut oats, some apple, 1tbsp honey)
8:30 - 273 mg/dl
9:00 - 232 mg/dl
10:00 -121 mg/dl
10:51 - Felt horrible. Was a struggle just to stand straight, my breathing was coming out hard and shaky. It happened within a few minutes. I testd at 62mg/dl. Ate some and it fixed.

Later was when I was at work. 3 hours after I'd eaten dinner I felt as if I was going to pass out and was fighting myself just to converse somewhat normally with customers(talking seems like it takes hella much energy in that state >>). I tested as 54mg/dl.

My dad's been wanting takeout lately, so tonight we had chinese. My two hour post-meal finally looks how you'd expect I think (not that that's a good thing =\ ).

7:00pm - finished meal
7:30 - 221mg/dl
8:00 - 339mg/dl
8:30 - 199mg/dl
9:00 - 165mg/dl

Anyways... I won't post any more readings, as you guys have probably heard this all before, but I'll update ya after I get an official diagnosis (which is pretty much in the cards, eh?).