Worth pursuing?

Hi! Wondering if I should talk to my doctor about Type 1.5 or just accept that I’m a Type 2 diabetic.

A little background, I’ll try to keep it short! Diagnosed Celiac in 2010 at 33yo. I’ve had issues with hypoglycemia all my life as long as I remember until going gluten free. I’ll still get them but not near the frequency they were. Two pregnancies, 17 years apart, both with gestational diabetes. First pregnancy I was very underweight, second (very recent) I am 50lb overweight. First pregnancy was diet controlled.

A1C had always been good until late 2015 when I got into pre-diabetic territory at 5.9. Doctor chose no treatment. Tested in first trimester mid 2016 and A1C has climbed up to 7.1. This shocked me as to how fast of a progression took place. Nothing had changed and my diet had gotten a lot better. Went on insulin right away and had a heck of a time with it, it just seemed to not want to work well. Every time the insulin was raised, my BG went crazy after meals for a day or two. Up over 200 after 3 hours! Could never get fastings in order despite strict adherence to the GD diet until glyburide was added in the 3rd trimester. Baby has been born and all meds discontinued BUT my OB has proclaimed me a Type 2 diabetic with no follow up OGTT or A1C (which would be off until 12 weeks postpartum anyway) Numbers on monitor are OK, sometimes good, rarely over 200 with high carb meals. I have noticed that my high levels occur between hours 2-3 and go down to around normal by hour 4.

Due to the long term hypoglycemia issues, Celiac, GD and possible Type 2, would it be in my best interest to try and convince my doctor to order the tests for Type 1.5? I can accept the diabetes diagnosis but I want to be sure I’m diagnosed with the right type. Thanks for reading!

There are so many stories here about adult T1’s getting initially misdiagnosed as T2’s, myself included. I would encourage you to get the test done. It’s a simple blood draw and they check for the antibodies associated with T1/LADA.


Thanks! I’m a little nervous about approaching a doctor and asking for the test. We get care at a military base since my husband is AD, and we are moving very soon. I tried to get in to see my doc here but no non urgent appointments for over a month.

Is there a way to ask for the tests that won’t make it seem like I’m trying to do their job? Most experiences have been good on base…only one doctor who completely shushed me and I changed ASAP. My OB was pretty direct and determined about me being Type 2 and I don’t think I’ll get anywhere with her. I think she thinks overweight always = Type 2 but I did not become overweight until going gluten free and healing my gut. I was terribly malnutritioned for awhile before that diagnosis.

seems to me there’s a lot of reasons to get the tests. celiac is autoimmune, so is T1 - knowing that so many adults are in fact misdiagnosed may help you convince someone to order the tests.

@Melitta mentions the relationship between GD and LADA here

and she mentions the specific antibody tests to ask for here:

good luck and let us know what happens!

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Thank you and I will come back and update! :slight_smile:

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Don’t be afraid to ask for a test that can help you out in the long run…Different insulins (should you need it) work differently for folks (I can’t use Levimire, it does odd things, but Tresiba is a godsend to me) …knowledge is power and enables you to get the right treatment…I worry when Dr don’t want to test for it based upon symptoms and existing auto-immune conditions…it’s like saying let’s treat that breast lump as a lump and not test it for cancer…

Best of luck and push for those tests…there are online labs that you can purchase the test from (and use at any quest) but they are expensive…

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And remember not every PWD2 is overweight, and their ae PWD’s who could stand to lose some weight.

One key queisotn, is there T2 in your family tree? That is usually the biggest risk factor for T2.

Yep, my father. He’s the only one on both sides. Insulin dependent for years now and was on metformin in the beginning. He had an awful time getting diagnosed in the beginning due to an ignorant doctor. I don’t think it got under control until he went on insulin.

I wouldn’t be surprised if I was T2 due to family history, but I wonder why I had reactive hypoglycemic episodes for decades while my A1C or random sticks were always fantastic until the last few years.

Another thing I thought about to add to what I discussed in the OP was a positive Rheumatoid Factor test I had a few years ago. I was sent to a rheumatologist and every test run were negative. Rheumatologist was stumped as my level was high enough to indicate disease but nothing was showing up on tests. I figured it could be from the Celiac but that’d been well under control for a few years at that point. RA does run rampant in my mom’s side. Interesting enough, I had bad knees until I went gluten free. Voila, no more burning joints. Since T1.5 is autoimmune that got me thinking.

We have to remember that the A1C isn’t the be-all and end-all in terms of measuring D mgt. Let’s say that, for simplicity, that the goal A1C was 5. If you ran at 5, 5, and 5 your A1c would be 5. But it would also be 5 if you ran 0, 5 and 10.
That’s where CGM - even the professional CGM that is blind to the patient (although I don’t really like that idea - how are you supposed to learn anything) and the HCP can see that you have peaks and valleys. I don’t know a lot about T2, but from what I’ve read, hypoglycemia can be a precursor to T2.

I still self monitor since I have test strips left over from pregnancy and am not letting them go to waste. If I feel low, I’m usually low. I never can tell if I’m high now that I’m not pregnant. When I was pregnant and over 200, I felt like garbage. And that was with insulin! I’m not taking anything now.

I definitely have some insulin resistance as I am usually above 140 after 2 hours now. Not by much, maybe 160s. The first hour is all good, my spikes tend to occur somewhere in hour 2-3 or 3-4. I really wish I could do a OGTT but the A1C is always pushed instead. I once tested at 250 after pho and Pepsi at a Vietnamese restaurant and my doctor gave me an A1C test. Of course it was completely normal at 5.2 so my concerns were dismissed. So I get what you’re saying about peaks and valleys. I should just do a log and try that way. Hard to argue with written proof! :smile:

I need to try and figure out where my spike is. Idk if I should try a GTT at home by making a super carb meal and testing hours 1-5.

Feel free to tell me to go away if I’m in the wrong place.

So I decided to make a high carb breakfast for Easter and do a bit of a challenge. Forgot to get a fasting BG and had a small square of 85% dark chocolate. Oops.

Here’s the meal: 2 4" GF waffles made with GF bisquick and 3 sausage links w/maple syrup, butter and 1 c. of whole milk. I didn’t go crazy with the syrup. Through MFP I totalled up about 153 carbs…without the milk. Ouch! Knowing what I know, I never fix pancakes or waffles anymore, this is just a test!

Baseline: 118
1hr: 216 uh oh (I did get very sleepy briefly)
2hr: 167 not great but looking better
3hr: 203 huh?

I did have a diet Coke and water during 2-3hr and I also nursed my daughter. The last number is immediately following a nursing session. I can’t seem to get any info if nursing raises BG.

I can understand the first hour spike with all the simple carbs. I very rarely eat this kind of a meal so I almost never see that high of a number. What gives with the second spike? Any guesses? Not looking for medical advice, just passing time until I can see the doctor and request testing. :slight_smile: