How Weird Am I? My 13 Year Honeymoon Continues

Type 1 and LADA
1

I've been lurking here for a few months and it's nice to be here among such knowledgeable people!

I'll try to give a brief as possible synopsis of my diabetes history: In 2001, I was diagnosed with diabetes with a fasting blood sugar of 240. It was surprising, since I was a 34 year old guy, who was 5'10" and never weighed over 150 lbs (135 at diagnosis), in good shape and had no family history of diabetes. I immediately did a lot of reading online and wondered if I was actually Type 1. However, my PCP didn't think it was necessary to test and treated me as a Type 2 (which I now know is way too common). With metformin and carb restriction, I was able to keep my numbers in line. As the years went by, my A1C crept up from the high 4s, through the 5s to above 6, while reducing daily carbs, increasing metformin to the max dose and adding glyburide.

Then in February of this year, my numbers were suddenly out of control. I was waking up in the 200s, with a few readings over 300, despite eating as few as 30 carbs per day. My PCP suggested upping the glyburide and still didn't want to do the antibody test. At that moment I was done with him and scheduled an appointment with an endocrinologist.

The endo was great, immediately mentioned LADA and ordered the antibody tests. My GAD test came back at 53.5 (lab standard <5), which confirmed our suspicions of LADA. He started me out on 10 units of Lantus, with no basal. My daytime numbers were great, but I woke up the first morning at 56. I had to continue lowering the dosage because I was waking up low (even after bumping my bg up to 135 right before bed), which was a surprise since I always had my worst numbers in the morning due to dawn phenomenon. At 5 units upon waking, the morning numbers were much better, although I could only eat about 10-15 carbs per meal to keep my numbers in the normal range (obviously needing a bolus, which is on the agenda for my next appointment).

That brings us to this week when I couldn't keep my morning numbers up on only 5 units of insulin. One night, I went to bed at 135, got up 3.5 hours later at 54, corrected, and was back down to 66 when I got up 4 hours later. It appears my pancreas may be on a last chance power drive. So I wondered what would happen if I didn't take any insulin (but just took metformin). I'm on day 2 and I've only one post-prandial reading above 130. I woke up this morning at 98, which is better than most of my pre-insulin readings in the last 10 years (even when my A1C was in the 5s).

tl;dr version: I've been Type 1 (specifically LADA) for 13+ years and just went on insulin 6 months ago. I'm still keeping my numbers in line with only a few units, if any, insulin. Has anyone experienced a honeymoon this long??

I know the consensus is that it's best for a Type 1 to go on insulin ASAP to maintain endogenous insulin production (and I don't doubt that), but for some reason I made it this long on oral meds and low carb.

As Seinfeld would ask, "What's the deal with his pancreas?"

I appreciate any insight!

2

you mean, to mantain endogenous production?

well…when I first started researching into LADA I often read it can take 5 to even 20 years for people with LADA to fully depend on exogenous insulin

3

There's a lot that medical science does not know about T1D progression. With a wide spectrum of human genetics, it's not unreasonable that some LADA people will have a longer honeymoon period than others. You appear to be an outlier in that data-set.

As with many things about treating T1D, you may not understand all the reasons why your blood glucose moves like it does. You simply must play the hand you're dealt! Needing much less insulin than most, that's a large advantage to you. BGs will not only be easier to control, but with using fewer units of insulin, your mistakes will be much less consequential, too.

You were smart to fire that first doctor. There's nothing more dangerous than an expert that doesn't know what he doesn't know.

Insulin is your best treatment and it appears that there are times when you don't even need it! That's a blessing. But you must pay attention with constant checking with your meter.

Perhaps your adoption of low carb eating allowed your pancreas to comfortably keep up your food. Good luck. Many here wish we had your situation. No diabetes is easy, however. Keep up the good work.

4

Thanks, Krisa. I edited my error.

I know people often go many years without fully depending on exogenous insulin, but haven't run across any who weren't on ANY insulin for so long. I'm sure there are others, though.

5

Thanks, Terry.

I agree that it's a good thing to need a smaller amount of insulin. It's a little concerning, though, that I've had several fairly bad lows (40s and 50s) on so little insulin.

As for the doctor, the scary thing is that he is listed as having "special expertise" in diabetes. His philosophy was to be reactive to the diabetes as it progressed, while I (and most here, I presume) believe in being proactive.

6

That does seem like a really long time to be off insulin and have LADA! I'm curious to know how many carbs you were eating after diagnosis with the metformin. You mention eventually being at 30 carbs a day, but I imagine you didn't start that low. Also, your A1C seemed to be low at 4 with a fasting reading as high as it was at diagnosis. Were your post meal readings high too? Sorry for all the questions, but I' haven't met anyone that was off insulin so long with a diagnosis of LADA. I'm trying to keep my carbs to 25 per meal and snacks and have reduced my average to 120 after a month. Your story gives me hope that the progression will be slow :)

7

In the first few years, I was mostly doing about 15 carbs for breakfast, 45 for lunch, 45 for dinner and 15 for a 4th meal. I was initially on both metformin and glyburide and I had a lot of lows (my first A1c after diagnosis was 4.6), so I ditched the glyburide and had more stable numbers on just the metformin. My postprandial numbers tended to be in the 110-140 range (btw, before I first started on the medication, I had a postprandial reading of 410). Probably due to my history of reactive hypoglycemia, I often had lows if I didn't eat within 4 hours or so of my last meal.

I gradually lowered my carbs as the bg rose. After 5 years, I think I was at about 10, 30, 40, 15 carbs per meal. At about 10 years until earlier this year, I was at 10, 20, 20, 10. I was mostly able to keep under 140 postprandial at those carb levels until earlier this year.

Hopefully, your progression will be slow as well. Feel free to ask any questions you want.

8

Hello Badlands,

I don't think that is unusual to have a slow progression for adult onset type1 although some people progress more rapidly to needing insulin or to dka. I know now I had many symptoms for years before I went to dka, overt symptoms for at least 4-5 years which none of my doctors even tested for and failed to diagnose. Long before that I had hypoglycemia and I often felt ill when eating a lot of carbs especially things like pasta/wheat. How we know how much insulin production we have left- I think it goes by your c peptide level, but we may still be having some "spurts" of insulin production at times and not know it. Everyone's honeymoon is different and some people, often children who have type1 and who go into dka have no honeymoon at all, probably because the autoimmune attack is much stronger- they usually test positive for all antibodies. In most cases the sooner you start insulin the better because this can prolong your honeymoon if you have one.

It's not unusual to have hypos while you get your basal dose adjusted, unfortunately there are other things that affect hypos such as your remaining insulin production, food, activities etc. I would try lowering your dose by 1 unit every 2 days until you wake up in a good range like 80-100. Many people also have DP( our bg rises in the morning regardless of food etc. due to glycogen from the liver to wake us up) and many people on mdi end up splitting the basal dose into 2 to help that. On a pump you can adjust your basal for dp and for activities or lows. I have also found from advise from my cde that eating 1 T flaxseed & chiaseed with some cream before I sleep will often keep me flat overnight, but it doesn't always work and I still need an am basal dose to help and sometimes fast acting.

You should ask your doctor what to do about metformin vs insulin- it may just be better to lower your basal until you don't wake up hypo.

9

Thanks for the insight.

I find it interesting that so many of us had reactive hypoglycemia before being diabetic. I had issues with very high carb food for more than a decade before diagnosis.

My plan has been to apply for a pump as soon as the Animas Vibe gets FDA approval, although that's taken longer than expected.

It's funny that your CDE recommended flaxseed and cream before sleeping, as I always eat a homemade flaxseed muffin and half a cup of greek yogurt (plus a tablespoon of sunflower seed butter) before bed.

10

I am currently following around 100-130 carbs total a day ...close to your start. When you say under 140, was that 2 hours post meal or 1 hr? If it was at 2hrs..did you ever have spikes over 140 to 200+ at 1 hr then go low at 3?

11

Susi (who blogs at LADA Life) was misdiagnosed as a Type 2 for more than 20 years, and she also had really high GAD levels when she was finally correctly diagnosed as having Type 1 diabetes. She does regret that she took so long to be on insulin.

12

I just checked out her blog and found it quite interesting. She's not sure if she was initially a Type 2, though, as she was somewhat overweight at diagnosis and it seemed to disappear for years on diet alone with no medication.

13

I generally check for the peak, which for me tends to be around 90 minutes after I finish eating (of course, it varies depending on the meal's macros), so I don't think I had too many spikes over 140.

When you get those quick spikes, are you eating a decent amount of protein, fat and fiber with your meals? They help level out the spike.

14

You may consider switching to Levemir. Lantus has definite peaks & valleys that make it difficult to dose. The manufacturer states it's level & last 24 hours. Both statements are incorrect. I had staggering lows on Lantus when it peaked despite lowering doses & changing timing. My control improved immediately on Levemir, which is best taken in two doses. An added plus is Levemir doesn't sting & a vial doesn't lose potency at 28 days like Lantus.

15

Type 1 diabetes is weird, man. That's all I can really tell you. I've had diabetes for just over a year now and I've had fluctuations of using very little insulin to using a lot of insulin (well for me at least, not for most people still lol) to using very little. I recently went from using 11 units of lantus to 6 units of lantus , I assume it's the combo of galbladder hell (you can read my blog posts on here if you wanna know what I mean by that) and not eating very well and losing some weight but now I"m getting back into normal life and so far I think I only might need to bring it up to 7 units at most , though 6 is working alright right now , as soon as I start eating entirely normal I might need to be at 7 or 8 but anything more would be overkill. I say this because my fasting levels were most affected, and I was waking up hypo every day for a while despite a snack before bed. I do use bolus insulin as well as lantus (I use novolog) on a 1 unit to 15 carb ratio and it works really well. It works wonders. I was started on lantus only but added novolog a few weeks later and it changed my life for the best. I was diagnosed as an adult too, though I was 22 and I still had a type 2 misdiagnosis despite being a rather healthy eating skinny vegetarian that's never been overweight in her entire life and has had random unexplained weight loss and not gain. However, unlike you, metformin didn't work for me at all and I don't think it would of mattered how much I used because I found my numbers when not on it were the same as on it (and both were really bad and I would often celebrate being 200 mg/dL over my usual readings) .

I don't think it's unheard of to have a honeymoon or weird production for that long. You're clearly someone with type 1, which is why I said type 1 is weird. It seems particularly weird in people diagnosed in adults.

16

Recommend trying levemir. The benefit of 2x/24 hr dosing is that you can use a different morning and night dose, as required. I for example use 15 units and night and only 5 in the morning. I've always been weird.

Even a dose of 1 - 2 units of insulin each 12 hours is still a valid dose (seems like you are very insulin sensitive), if that is what it takes to get your blood sugars back to normal.

Sounds like bolus may be in your future, though you may find 1/2 - 1 unit is enough to cover a meal if you continue with the low carb.