Early stages LADA, glucose all over the place

Hi. I’m new here. A few weeks ago my doctor told me she suspects that I’m in the early stages of LADA. Day to day, my blood glucose is all over the place. Even from the same number of carbs, one day I’ll be relatively low (like 140 post prandial), the next my glucose shoots up past 200 and stays up for three hours. She’s having me wear a CGM that she can monitor, which I’m glad about so that Im not alone with watching the variability. I’ve been trying to wrap my mind around a LADA diagnosis. I previously had a diagnosis of reactive hypoglycemia and my lows must be why my A1C is 4.9. I started testing my glucose recently out of curiosity and discovered the high numbers. My fasting is generally around 100, sometimes a little higher or lower. Recent fasting c-peptide was .51. I just had bloodwork done for GAD antibodies and am anxiously awaiting the results. I would love a reality check around the day to day variability of my glucose levels. Have you seen this with your LADA? It seems like even if I were to add insulin (my doctor told me right now it would be tiny amounts before meals), my glucose levels are a moving target. I’m so distracted by all this, it’s practically all I think about.

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Welcome @Caterpillar! Certainly your c-peptide is on the low side, and the GAD testing will help add another piece to the puzzle. Everyone’s diabetes is pretty different, but I am sure someone here has had a similar start to their diabetes journey.

One misconception I want to mention is the lows = lower A1C. In fact lows have a negligible effect on your A1C, which is a measure of your blood glycation over the last 3 months. This occurs quickly at higher blood sugar levels. So your low A1C is just because your highs currently aren’t lasting for a long time, not because your lows are offsetting them.

With that being said, the blood sugar measurements you are seeing are certainly not normal, and it appears you are heading towards the path that many of our members have followed, just not at as rapid a pace as the younger members.

In LADA the honeymoon period can last quite a long time, whereas my son’s was only honeymooning for 7 months or so, and yes it is really frustrating at times to try and manage a moving target. Getting the CGM and monitoring it can really help you figure out what is happening, even when it isn’t predictable, so that is a great development. You can see the CGM data correct? They didn’t put you on the one that only the doctor’s office can see did they?

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Does your doctor diagnose and treat type 1 diabetes? Generally for that you would want to be seen by an endocrinologist.

A c-peptide value as low as yours suggests that your beta cells have been damaged and can no longer produce a normal amount of insulin. It’s good to hear that you are awaiting the results of GAD antibody testing, but there are additional antibodies that also typically would be tested for by an endo.

I developed type 1 in my early 50s, and when the antibody tests came back the endo announced “you’re type 1, you need insulin” and they wasted no time getting me started.

Without meal bolus insulin, it’s reasonable that in a low carb meal, your remaining small insulin production might be able to keep up, whereas in a large carb meal there would be insufficient insulin so you’d go high and stay there a while. If your blood glucose is too high, you need more insulin.

It’s true that glucose levels are a moving target. We chase them all the time, pushing the BG (blood glucose levels) back towards a good number. Some modern insulin pumps have “hybrid closed-loop” software, which means they listen to the CGM data every 5 minutes, and adjust the amount of insulin accordingly. But the technology is still kind of like “self-driving cars” which really aren’t fully there yet. They help, but we are responsible for the overall management.

It probably would be best to find an endocrinologist who has a good reputation for treating type 1 diabetes. The folks on this site will help too.

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Hello. Thank you for responding. I’m still trying to get a referral to an endocrinologist by my primary doctor. He ordered an incomplete set of tests: ICA, fasting insulin. A1C and fructosamine. Out of frustration, I ordered the c-peptide- and now GAD myself. I know I need the others and to have an endo on board. Whoever I see will set the stage for everything that happens next. Right now I’m not happy with this medical group as it seems they wait for patients to get very sick before they start to treat. It would be helpful if I can vet who I’m referred to. Should I try to get an endocrinologist who specializes in diabetes? I’m really quite out of my element.

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Hi Chris, thank you for the welcome and for explaining the A1C. We were a little baffled because the fructosamine (I’m still not sure why my primary doc ordered it) was 250, which corresponds to an A1C of 6.0 and that jibes better with the numbers I’ve been experiencing. Any idea why that would be? I realize my numbers are low and I’m not in any immediate danger. One of the reasons I even became aware of this presently was this winter I got a diagnosis of moderately advanced coronary artery disease. I’m 58 and otherwise very healthy, so I started looking into other possible risk factors that could further contribute to the heart disease. Yes, I can see the CGM data - it’s amazing. I never would have guessed the variability there can be with similar foods and carb loads day to day. I like your analogy of self-driving cars! It is amazing how technology has advanced and yet still has limitations.

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Unfortunately I do not. Really sorry about the CAD diagnosis, and as you know having diabetes certainly increases the risks of CAD, although I would think that you haven’t been diabetic long enough to contribute to this. But honestly, maybe you have had altered glucose physiology for a while. The CGM is definitely a game changer in being able to control your blood sugar, even with a sputtering pancreas. I think one of our member Eric had a good analogy in the thread below on why your body reacts differently on different days.

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In hindsight, I wish I had gone to the endo clinic instead of my PCP after my diagnosis (DKA in hospital) because I did not have access to the type of diabetes education I needed and did not go home with effective D management tools such as CGM. Those first few months were a total mess!! Through the diabetes online community I learned about resources such as Think Like a Pancreas by T1D Gary Scheiner and Using Insulin by John Walsh. I am glad you found your way to FUD, the best source of support and information ever!

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FUD indeed has seemed like the most supportive and knowledgeable forum I’ve come across. Any tips for how to find an endo who is good specifically with LADA? I don’t know why, but I keep hearing about doctors who in the modern age still won’t acknowledge LADA and throw meds at it like type 2. I hope they are few and far between.

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I got a couple recommendations when looking for my second endo from a certified diabetes educator who herself was a type 1. That was very helpful. For the first endo I just lucked out: I looked at the available endos in my insurance, and picked one who was in a large group, relatively young, and well educated, on the theory that with those criteria I’d likely either get a good one or a complete reject (and I’d switch right away).

If you find yourself with a doctor like that, the right thing to do is to fire them and go hire a different doctor. It’s a nuisance but it solves the issue. After you figure out what you are doing, you can get by with any physician who will write prescriptions at your request; any compliant physician will suffice. That said, a good endo is better because they’ll see emerging issues before you will.

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Yes, in the 90s I had severe reactive hypoglycemia that appeared to resolve itself. I remember my doctor at the time told me I was at risk for diabetes, but it was never mentioned again. Now when it goes high, I can see with the CGM, that I start to feel like I’m out of gas. For the last few years, I always thought that was just a mid afternoon energy slump. Before teaching a night class, I would usually try to eat a bunch of carbs from the vending machine to pick up my energy, which wouldn’t work. I’d feel better when my teaching adrenaline kicked in, and now I can see my body at that point my was metabolizing the extra glucose.

I do suspect it’s been out of wack for a while. I guess it could have contributed to the vascular damage - although family history of early CAD Im sure plays a bigger role.

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First of all - welcome!!! Fear no more, you are picking up momentum in the right direction for sure! It has lead you to medically discovering your body, reassessing your team of drs, and most importantly it has led you here! You are asking all of the right questions, and it seems you will have no problems advocating for your best health.

I did not get the Diabetes help I truly needed until I found an Endo that did the right tests, asked the right questions, and was able to give me the specified care it takes to understand just how your body is rejecting glucose. I was assumed type 2 for about 2 1/2 years of my diabetes career. They kept adding medications that would work for a short while, and then seemingly not at all. By the time I got my c-pep checked it was a whopping 0.3 and instantly my Endo was like “you’re type 1”. I told him I read a lot online (which is both good and bad lol) and upon discovering what LADA entails, felt I fit the criteria. He agreed and I was diagnosed with Type 1.5 near the end of this past May.

In regards to fluctuating blood glucose responses, I will agree I see this too now that I have my Dexcom CGM active. Most mornings I bolus for breakfast, every now and then there will be a day I find I am chasing my CGM to catch a high that never happens. Just don’t drive yourself crazy over it, let your body tell you what it’s doing. So that you may learn to give it the TLC it needs, when and if it needs it.

You are in such good hands here. I’m sure I speak for all of us here when I say we’re so happy you’ve found FUD. :slightly_smiling_face:

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If you are comfortable sharing a metro area, we may be able to point you in the right direction. Short of this, the only way we have found that works is set up an appointment and talk to them. When in the early phases they only get one strike. We lucked out and got an amazing endo when we were first diagnosed, and that made all the difference. After three years with her, we switched insurance, but by that time we already had everything we needed, and just need a doctor to renew prescriptions.

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Thank you for the warm welcome! It’s very empowering to learn the right questions to ask my physicians and this group is so helpful. I need to relax more about things because I can tell it’s going to be a process that takes some time to work out.

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Sure! I’m in Sacramento and right now a limitation is I’m with Dignity Health. I have an HMO so would pay out of pocket if I go out of network. That would open up the options. I used to be with UC Davis healthcare, connected to the teaching hospital where care is often cutting edge. As soon as I afford PPO insurance, I’ll switch back in a heart beat.

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This really is a process that takes time, but go easy on yourself. I was a mess when I turned up on the doorstep of this community, you will get to see yourself really grow as long as you take deep breaths and learn as you go! It’s all at your own pace. We’re all here for you in any way possible. :relaxed: Trust the journey, things will get easier as you go for sure.

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Well, I got my GAD results back and I’m confused. I hate when I’m right on the line on lab work because I know there can be differences from lab to lab or day to day. My GAD titer came back 4.99 and positive is >5. Should I let it go and assume I’m truly not positive for GAD?

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Thank you. I really appreciate it! Deep breaths.

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An endo would look at several tests and put the pieces together to form a diagnosis, rather than deciding based on a 0.01 margin on one test on one day.

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That makes total sense to me and I appreciate the reality check. I’m still trying to make a clear case for my primary to send me to an endo. He’s the gate keeper in this HMO system and I feel like he’s flying blind so I’m trying to educate myself as much as possible. He didn’t order GAD for me, only islet cell antibody (ICA), insulin, and fructosamine which points to how little he knows. He didn’t even respond to my message asking if we could run a full panel so I’m trying to get my ducks in a row before scheduling to see him. He’s someone who would disregard a .01 and he didn’t even try to understand my c-peptide - didn’t know what it was, even though the lab marked it as low. To make matters worse, he’s a new doctor to me so we don’t have a history of trust on either side yet.

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That is really frustrating. Clearly, you aren’t making this ■■■■ up, and you have something going on, whether it be diabetes, hypoglycemia, etc. Like, this is what endo’s are for. We have been in Kaizer’s HMO, but haven’t felt like they have kept us from seeing a specialist at any time, which is to their credit.

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