Wondering what I have

Type 1 and LADA
1

Hey there, I would like some opinions while I wait for test results, (which is honestly driving me a bit nutty waiting)

Last year I was diagnosed with gestational diabetes having failed both the screening and full ogtt. I don’t have exact numbers but remember the screening one I had up to the 190s and the full one the highest was 190s at one hour and I think 170s for second hour. My fasting was in the 80s. Was sent to nutritionist and diabetes educator. Sent home with a diet and told to test on the meter.

Some back history I am only 29 and I have a very strong family history of diabetes (both parents, brother, and both grandmother’s and one grandfather) so in no way was I surprised by this. Also have a strong family history of thyroid problems.

Throughout the rest of my pregnancy I did fine on diet alone having fastings from 74-93. One hour after meals no higher than 132 and two hours no higher than 120s usually around 100s.

Developed preeclampsia and was induced at 37 weeks because of my blood pressure.
Delivered a beautiful 5lb baby girl no other complications.

Had the follow up ogtt the only number I know was two hour was at 79. That was August.

Fast forward to April… I had been doing random fasting checks every couple of months with my remaining test strips… surprise fasting of 110…

That alarmed me enough to start testing after meals again. After breakfast one hour was 202 O.O two hour 173… tested til I ran out of strips and saw numbers still around those. At that point I was floored… I reasoned ok maybe strips are old I’ll pick up more and test the next day.

Problem was even with new strips… I saw the same kind of numbers… average for the last month 178 for one hour and 131 for two hour. Since testing for the last month I’ve seen several 200+ at that one hour mark and for the two hours lowest maybe 120 but a good amount in the 140 range.

I got lucky in that I had scheduled a doc visit so I was able to be seen beginning of May. She took a fasting and a1c test, thyroid and lipids.

Fasting came back 115 (two points away from my meters test)
A1c: 5.4???(that confused me)
Lipids and thyroid were normal ranges.

So my doc went ahead and ordered the antibody tests Gad and insulin antibodies (I think it was) and those results I’m still waiting on…she did mention that the A1c might not be completely reflecting my numbers if they just started appearing.

Question is this. What are the chances I’m looking at early type 1 or is this just a early type 2? Or am I overreacting?

I didn’t think you were supposed to see 200+ at all at any time, and it’s not like I’m eating 100+ carbs a meal either. Usually have around 20-60g.

I am still breastfeeding my daughter, would this be lowering my numbers at all?

I realise you guys aren’t docs. My mind just needed somewhere to let out all my ponderances as searching this site hasn’t given me exact answers.

2

I don’t know, but these questions came to mind when I read your post. They might help someone else help you.

You don’t mention if the family history is with Type 1 or Type 2?

Did your doctor test for c-peptide?

3

It’s nice they are doing an antibody test. So many Type 1’s are misdiagnosed for years!
But given that, it might be driving you nuts but wait for the tests. Both types of diabetes have a tendency to run in families, And at the onset a type 1 will still make some insulin, until they don’t. Fasting at 110 is no big deal and doesn’t say much except you are probably having a blood sugar issue and the other numbers after eating verify that. 200 is all too common, but as a type 2 you will have to change what you eat. As a type one , it’s a roller coaster at first while you still make some insulin. Our strive is not to be at 200, but it happens until you learn what to do. You can deal with it better when you know what type you are. I do know that when you get gestational diabetes you are much more likely to get type 2 diabetes somewhere down the road.

4

My mom is type 2 but is now on insulin after not being able to get good control on oral meds. Brother on oral meds but rest of my family I do not know what type they were. My mom was diagnosed in her 30s only a little older than I am now and my brother was diagnosed a couple years ago (he is older than me).

My doc has not tested for c peptide.

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5

C peptide will tell you if you are making insulin. This is helpful if you are type 1 because you make insulin for a while and it will give an estimate of where you’re at. The antibodies if positive will mean a definite type 1. If you do test positive for the antibodies make sure your mom and brother get tested too. If you test negative for the antibodies you still could be a type 1, just not have the anitbodies but not making insulin. Much smaller chance of that, but it happens.

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6

Good to know, thank you for the information.

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Update:

My Antigad came back negative though I’m waiting to hear back on what the number actually was.

The insulin antibody was supposed to be done but for some reason wasn’t. So waiting to hear from my doc if she will let me get it done.

Doc told me diet exercise and maybe metformin.

So once again I’m in limbo until I hear back from her.

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8

You may be in limbo a lot longer than you think. I am treated at Joslin Boston considered one of the, if not the top clinic in the world and after 29+ years I am still in limbo since all they know is that I am diabetic, and prescribing me insulin keeps my blood glucose and A1C under control. They have run dozens of tests over the years and I even had DNA testing done this year as MODI was suspected as closest type to my symptoms but nothing to date falls in line with any of their protocols.

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@CJ114 is right people think it’s a given everyone fits neatly into the T1 or T2 boxes but that’s not always the case. My BG has ranged from 50 (without insulin) to close to 300, I was already hypo-unaware before I even tried insulin. My A1c is always low, around 5.3 although my Dexcom says 5.8 but still not bad. No autoantibodies so far, c-peptide bottom of normal although haven’t had it tested in a years. My BMI is 19, I am not insulin resistant and my fasting is around 96. My GP prescribes Afrezza for high carb meals only and that’s all I need. I do have LADA in my family and have the most common gene for it. So good luck, monitor yourself and find a doctor that will listen and look at meter results (use one that has a computer program with it, that’s how I got a doc to pay attention and put a Dexcom on me years ago to see the rollercoaster BG I was experiencing.)

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I’m hoping my doc is ameniable to the other tests but most likely won’t hear back until Tuesday due to the holiday on Monday.

If not. Well, like you said find a doc that will do the tests.

Just mostly trying to keep hope that I won’t get stuck in limbo, I want to be able to have more kids and according to my ob need to get my fasting blood sugars down from their current state before I start trying again.

I just want answers, which I know takes patience. But patience is Hard!

Thanks for listening.

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11

@Lilli2,
What is the “most common Lada gene” you refer to? Did you have genetic testing covered by insurance?
Thanks,
Karin

12

If you are doing more meter BGs after meal (which is good), your meter average won’t line up with A1C.

My suggestion is to focus on the post meal. You can try reducing carbs, or split into more mini meals that may result in better numbers after meal. Or talk with doctor about starting small doses of meal time only insulin.

Maybe ask for RX for Freestyle Libre 14 day to get good analysis of BGs for 2 weeks instead of just fingersticks.

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13

Insurance did not pay for the testing. I had genetic testing to screen for Celiac that I paid for, my endo said one of them was also the most common haplotype for adult onset LADA, there were a couple others more common in T1. Of course having the gene does not mean we will develop the issue;)

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Thank you, @Lilli2,
But do you know which is the gene that is most responsible for adult onset LADA. Several in my family, including myself w/ adult onset.

:slight_smile:

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Was told by my endo S1-S5 are the most common in T1, HLA-DQB1 402 is more common in adult onset

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Thank you, @Lilli2!!

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17

So when weight loss is mentioned as a sign of diabetes, what exactly does that entail?

I ask because I weighed myself today as I’ve started to notice that my belt had to be a bit tighter and I’ve lost 10 lbs in just a week? Isn’t that a bit much?

18

Ten pounds in one week IS a drastic weight loss (especially if you have not been trying to lose weight), but you also mentioned that thyroid problems run in your family. The weight loss could be because of diabetes-- if your glucose is SO high that your body cannot use the glucose in your system and starts to consume fat-- or it could be due to a thyroid issue. Auto-immune diseases go hand-in-hand, so you may want to get a TSH test to see how your thyroid is behaving.

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My thyroid was normal when checked about 3 weeks ago.

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Well my islet cell antibody test did come back negative. My doc wouldn’t (or couldn’t) run the other tests even though I requested them. I do live in a rural area so entirely possible to not have access to other ones. So least as of right now I’m waiting to see if metformin does anything for me and hopefully if I can get my fasting numbers down my OB will give the green light to start trying for another baby.

So ultimately still in limbo but keep testing to make sure it doesn’t get worse than it already is.

Thanks for all the help and hopefully at some point I can get a clearer answer.