Treatment for Early Type 1/LADA

Hi,

I am very new to all of this (super fun!) diabetes stuff… I was just diagnosed as Type 1 or LADA. I am 21 years old, 105 lbs, eat healthy, and am active. My glucose tolerance test results were fasting 132 and after 2 hours 252. This is what primarily diagnosed me with diabetes. Then my doctor tested me for GAD65 antibodies which came back positive. My A1C came out to be 6%. They confirmed me Type 1 or LADA since I am young, thin, and was GAD antibody positive.

At the doctors they gave me a meter to test my BG for 2 weeks - then I was told I will see an endocrinologist who will look at the results and figure out the best treatment from there. Over the past 2 weeks my fasting numbers have varied between 108-144 and my 2 hour after meal numbers are always in the 200’s (sometimes low 200’s, sometimes high).

I am curious what treatment the endo is going to give me. Do you think they will start me on low doses of insulin to maybe preserve some of the insulin producing cells I still have (which I have heard is best - but are my numbers even high enough to start insulin??) Or will they start me on pills which might burn out my pancreas and make me insulin dependent quicker? Or will they simply just tell me to continue eating healthy and testing my BG? They did not do a c-peptide test so I am not sure how much insulin I currently have left.

I am just curious what treatment you all think is most likely for me based on my results and this early in the game.

Thanks!
Kelly

Kelly,

Welcome to the fun.

Based on your numbers, assuming that you are following a diabetes diet (at or under 60g carbohydrates per meal), then there is almost no doubt that you’ll be prescribed insulin. Your fasting numbers are right on the border of starting basal insulin, but your mealtime numbers are far beyond the recommended two-hour numbers.

If you are not prescribed insulin, I’d find a different endocrinologist.

Jeff

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Here’s an excellent post from @Melitta for the newly diagnosed LADA

Our community was founded by someone with LADA, so lots of informed people here.

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You will likely be starting insulin soon, assuming your endocrinologist confirms the T1 / lada diagnosis… If lack of insulin is the problem, insulin replacement is pretty much the only option.

You may already eat a healthy and balanced diet, but you’ve also just realized a major change in your body that will likely cause you to have to reevaluate your relationship with carbohydrates also… That picture will become more clear as you see most blood sugar test results before and after meals, you’ll see which types of foods are problematic for you.

Your fasting levels arent terribly high, but your post prandial levels are higher than you want… You may be able to largely manage with diet and small doses of mealtime insulin for a long long time…

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While nobody wants to be diagnosed with diabetes, I’m glad your doctor caught this early! There is a lot to learn and it can be pretty scary. I’ve really appreciated the opportunities on TuD for support and information. :grinning:

What kinds of carbs are you eating? Foods on the low/moderate end of the glycemic index (GI) will generally cause lower post-prandial spikes than high GI foods like potatoes, rice, most bread, cereal, etc. Here’s a link to the Harvard Gi/GL chart.

Good luck and stay in touch!

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Hi: your post-meal numbers are high, and IMO it looks like insulin would be useful. Early insulin use leads to better health outcomes for people with T1D! If the endo wants to use Type 2 meds, I would object if I were you. Just my two cents, and welcome to TuD!

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Definitely try to have the C-peptide test done – this is the only way to get a correct diagnosis from the beginning, which would then suggest different treatment plans. I would also recommend looking into being a participant in a clinical trial – there are a number of them for people at risk of diabetes or with recent onset. One source of info here: https://www.diabetestrialnet.org/studies/index.htm.

Good luck!

Hi everyone!

Just updating you because I had my first endo appointment this morning. She confirmed the Type 1 or LADA diagnosis but because my numbers were high but nothing crazy, I was trained on the insulin pen but they waited to actually prescribe it/start me on it until they got my bloodwork from the c-peptide test and insulin test. Results were posted this evening and my insulin level came in at 8.9 uIU/mL (Reference range 2.6 - 24.9 uIU/mL)! I am super happy that I am obviously still making insulin but also pretty confused now that I tested positive for antibodies and have high post-meal glucose levels yet I still have a completely normal level of insulin. So, I’m happy with the results but now very confused because I think all of us expected to see a low insulin level. C-peptide results haven’t been posted yet but I am assuming they will come back normal as they typically coincide with insulin levels.

I wonder if I will even start any treatment now that I know I have plenty of working insulin?!

Has anyone else been positive for antibodies, had high BG levels, but a very normal level of insulin?!? Maybe I just caught the LADA extremely early?

Idk! Help!

Thanks,
Kelly

What were your glucose levels when the insulin / c peptide levels were taken… That can make all the difference in the world…

There’s a real confusion about the reference ranges with these labs, because their “normal” levels assume normal glucose levels… If you had s glucose level of 100 (normal) your insulin levels were normal…

If yo had elevated levels of glucose and those “normal” levels of insulin / c peptide… Well then they’re actually low. It’s a moving target and the lab reference ranges don’t explain that well

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Though I tested negative for GAD65 antibodies, I had a similar issue/concern regarding the c-peptide test at that time. It came in at 1.2 at a lab with a reference range (fasting) of 0.7-2.2. Endo declared it “obviously Type 2” since “c-peptide was normal,” as was insulin level. Problem was that that test was not taken fasting, rather it was around 90-100 minutes after lunch. My BG at the time was 102 – should have had higher c-peptide, I believe.

Five months later, my insurance insisted on a new c-peptide test before authorizing a CGM. That time it was done fasting at a lab with reference range of 1.1 to 4.4… M c-peptide was 0.7 (BG was 92). A year later the test was repeated at the same lab and it came in at 0.6 (BG 89). I had already been on insulin for 6 months at that point, so my doctor ordered no additional antibody tests were done; however, since there would be no change in my care plan (except maybe a better relationship with my insurance company…)

Regardless, I do make some insulin, which perhaps increases if my BG would go “very high” (I have never seen any test above 350), but to maintain anything like ‘normal BG’ levels, I have to take insulin – even a 2-3-hour interruption in basal insulin can and has caused my BG to go up close to 100 points, especially in the early morning, due to our wonderful “friend” Dawn Phenomenon.

Regardless, congrats ofd sorts, @kaplageman on getting some clarity on your diagnosis – and good luck!

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The c-peptide levels are so ambiguous that my own doctor, whose expertise absolutely amazes me, has even gone so far to proclaim that their only value is to “determine if it is zero, or something other than zero”

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Your C-peptide test results are absolutely normal for a LADA/Type 1 diagnosis. The early to mid stage of LADA is a process of declining beta cell (insulin producing cell) function. Your numbers are explained by the fact that your pancreas makes insulin–just not enough. It is generally accepted that by the time that you have elevated bg readings, enough for diagnosis, your body has already destroyed the majority of your beta cells. I and millions of other individuals with LADA are in the same boat as you. Our bodies still make insulin–enough to fall in the “normal” reference range on a C-peptide–but it just is not enough.

As others have commented, C-peptide is a pretty crude tool best reserved for the determination of zero production or not zero production.

As for your treatment going forward, the C-peptide results should not change the fact that you should begin insulin therapy. Early insulin therapy is the gold standard for treatment of LADA/Type 1. There have been numerous studies which show that early insulin therapy is likely to prolong your endogenous (natural) insulin production. This means better control of you bg’s for a longer period.

Rest assured that you are not alone in your results in the slightest. You have a case of “normal” LADA.

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Jeff,

Thanks for your responses they have been very useful! I agree that my insulin results were somewhat normal given I am in the early stages of LADA - I was just not expecting it at all! My endo found it interesting that my fasting numbers were in the low 100’s but my post-meal numbers were always 200’s because she said that most LADAs [including you I have read] start with needing only basal and no meal time (whereas I might need only mealtime and no basal in the beginning). Based on everything I’ve read about early insulin treatment, I might still push for super small doses of mealtime insulin since I’ve heard nothing but bad things about LADAs using oral or Type 2 meds. She definitely mentioned her concerns about me potentially going low at times with insulin since my BGs are high but not absurd (also my a1c was just 6). Going back in a week now that we have the bloodwork results so we will see what the final verdict on treatment is!

I’m sure I’ll be updating you next week again lol! :smile:

Kelly

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I only used mealtime insulin for quite a long time… There really is no such thing as typical… Each of our conditions is quite unique and you kinda just gotta figure out what works for you…

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Hi everyone! Another update!

Visited the endocrinologist on Wednesday and she decided to start me on insulin injections. I am starting small taking 1 unit of humalog with each meal. She said she wanted to hold off on basal as long as possible since my fasting numbers are still only borderline bad and there’s some concern about me going low with it. Injections are annoying but I’m glad they are lowering my post-meal numbers slightly! Likely she will up the dose to 2-3 units in the next couple weeks but she wanted to start with 1 unit to see how I react and see how sensitive I am to the insulin. Hopefully at some point I can move to the pump but I get that it doesn’t really make sense this early since I’m only taking 3 units of meal time a day.

Would you all agree with that? Something that’s a little confusing to me is that pumps can deliver tiny increments of insulin so it may be good for someone who’s only taking small doses. Also I think pumps require a basal rate (unless you suspend it) so I’m not sure how I would get around that lol. Anyways, I’m sure I’ll end up with one down the line when I start basal insulin and my daily dose increases.

Thanks again for everyone’s advice!

Well it sounds like you’re starting off in the right direction.

I don’t pump, but the main appeal I tend to see in them is the ability to adjust basal rates… If you’re not taking basal that’s really not a factor… You’re just starting insulin so there will be a lot to learn and see to determine to what extent a pump might be helpful for you or might not be.

When I first started insulin it appeared to be the foregone conclusion that I’d be on a pump almost immediately… Years later I manage very well without one and they don’t appeal to me… Other people love them…

Take some time to learn your condition then make decisions armed with knowledge and experience would be my advice.

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@Sam19, I don’t have close to your years of experience, but I was doing OK on shots as well. I did not want a pump because of all the problems I’ve heard people have had with them. Last year, my endo finally decided that he could not resolve the lows I was having - probably due to varying basal needs throughout the day - so he suggested and put me on a pump. A year later, I HAVE had nearly ALL the problems with the pump that worried me – and I’m still happy with it. It has resolved the problems I was having with regular lows; however, and added some convenience as well.

All that said, yes, @kaplageman, it’s far too early to think about pumping – first you have to learn about how insulin works for you and how to use it, etc. Glad you’re on a good path so far!

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I don’t think I have years more experience I’ve only been on insulin since early 2012… Didn’t mean to give the impression I had decades under my belt but see how it might have been read that wsy

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Ok, so you have MONTHS more experience :slight_smile: I started on insulin in October, 2012.

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Running an insulin level instead of C-peptide is old fashion incompetent nonsense.

John