Are you a LADA? What are your Total Daily Doses?

Lately someone started a survey on here about TDD – I found that very interesting and would like to specifically ask the Type 1.5 or LADA diabetics about their dosages-

Are you a LADA? What are your Total Daily Doses, and how much have they increased over time since diagnosis?
Was there a rapid increase of how much insulin your body needed, or was it gradual? Also: after a few years with it, do you still increase your doses, or have they "settled" somewhere?
And finally: Do you think you still have some left-over functioning of beta-cells, helping you out here or there with control?
Thank you for your answers!

Hi Julez: Hopefully you will get some replies from some slow-onset Type 1s. But I will jump in, as an adult-onset Type 1 (age 35), although I did have rapid onset (nothing latent about it!). My TDD is about 20 units in my Animas Ping pump, which is definitely a small amount as I am 5'9" tall. My TDD when first diagnosed was less than 10 units. I had two "jump ups" as my apparent honeymoon ended, and have been at the same TDD for many years. So for me I "settled" somewhere. I have always wondered if I have some remnant beta cell function because my TDD is low, although I have not had a c-peptide test to confirm that. Interestingly, one of the DCCT research doctors (Bernie Zinman) told me that ALL of the adult-onset Type 1s who were included in the DCCT had some remnant beta cell function. I think having some remnant function is very helpful.

I was (age 34) my onset may have been slow but I missed it, I was too busy to acknowledge it so I was very sick when I gave in and went to the doctor. I used about 30u for my first 15 years but now I seem to be resistant and use about 60u. How much you use is really insignificant...injecting just the right amount each time is the hard part...;-)

The difficulty with this question is that many of us were misdiagnosed as Type 2's initially. So take my case: I was diagnosed as Type 2 in July 2007 and put on oral meds. I did fine on them (I'd kill for those blood sugars today!) until about September 2008 when my numbers started to slowly but surely rise. I put off dealing with it for awhile so by the time I figured it all out and got on insulin in February, 2009 my numbers were hitting the 300s and even 400. A couple months after that I got a c-peptide and it was either .38 or .70 (two different labs). So, in effect, I did the slow aspect phase of my LADA before I ever started insulin. So I never had the starting with teeny doses or only basal OR bolus that many newly diagnosed LADA's report. Since then my TDD has varied up and down a bit but nothing substantial. At this point I think of myself just as a Type 1; the only time the LADA part matters is when I talk about diagnosis.

I'm currently on an "up" phase of my TDD and it averages around 25.

Melitta, in regards to your last statement about some insulin production being good, I've always heard that as well. I don't know if that is common in those who are correctly diagnosed from the beginning. But I wonder if my periodic up and down needs are due to "LADA spurts" and I've heard some who have it even more unpredictably. If that were the case, I'd just as soon get to "empty" and be more stable!

One doctor told me that good control would benefit from own insulin production while another said it would be more difficult due to increased risk of lows.
I'm not diagnosed LADA officially (T1 since a couple of years) but my C-peptide is not gone yet and it's changing very slowly.
There has been no clear trend in TDD, it has varied up and down. But TDD right after diagnosis was higher than now (mostly to gain back weight I think) and I have also seen a shift from bolus higher than basal in the beginning, to the opposite now.

I was dx 1 yr ago, started on Lantus 10u, bolused Humalog 1u/20 carbs....Now I think my honeymoon might be ending or something, I recently increased my basal to Lantus 12u and bolus 1u/ my daily total on average is around 20-25u depending on what I eat and that kinda thing. I have been making some adjustments as of late because for some reason now the 2 weeks before my period my levels seem to rise especially in the evenings. It's a trend I have been noticing over my last few cycles and it is annoying me LOL...but I am working on it.

Maybe it's just my honeymoon is ending I don't know?!

i THINK im a lada. diagnosed in 11/11, the endo started me on 12 units lantus and a sliding scale. thankfully i entered the honeymoon period a week later and my t1 friend advised me about real carb counting and i found tuD.
at the start of the honeymoon i was on 2 units of lantus and 1:30 i:c for all meals.
there have been ups and downs since then, ive thought the honeymoon was ending s many times that now that its like the boy that cried wolf. i think its really here now. cant be sure tho, but you never know.
my needs have gone up drastically in the last couple of months, im now on 9 units of levemir in the evening and 2 in the morning. my i:c is now about 1:26. i think it has been even more drastic than i have admitted because i was so reluctant to raise my tdd, didnt want to be more diabetic..
im considering going up to 10 units in the evening because im still waking up to numbers over 100 most days.
i have highs whereas in the first year i was high like four times. those were the days...
so tdd now 11+3(low-ish carbing, considerable exercise). i think i must have some insulin helping me out with meals, as the I:C ratio is still pretty nice.

I am on average on 28 ie a day. 16 basal and 12 bolus, obviously the latter one depends on my consumption behaviour.

I was diagnosed in '07 as T2. About 2 years later, a c-peptide confirmed my LADA status.

I believe that from my T1 dx until recently, I have remained pretty consistent in my TDD. I’m not sure exactly why but lately, I seem to have become quite sensitive to my insulin. I hesitate to give props to the apple cider vinegar concoction I am drinking daily, but it is rather a happy coincidence. I was averaging about 20 units but lately, I’d say that I’m down to about 15. I’d also note that I’m about 50/50 in my TDD.

Hi Julez,

I've been diagnosed 2 years ago at the age of 26. I started with 5 units of Lantus and I haven't changed requirement. I'm using more Humalog (4.5 units, I:C of 1:20 on average vs 1.5 units)than before but it's not only because my honeymoon is over but because I can now see with my CGM that I need it (I think that I was not dosing enough and just going low with time by burning energy). I do think that I have good stability in BG because of some remaining beta cells but I don't believe that they are helping me going down much.

Dx'd T1D 1984 at the age of 30. No antibody tests were ever run but looking back I observed diabetes symptoms for at least a year prior to my diagnosis. So my onset was slow and I didn't go DKA. I'm glad I had a smart enough doctor to give me the correct diagnosis. I did enjoy some honeymoon time and started out on 1 or 2 NPH doses per day. TDD about 20 back then.

Over the years I started taking more insulin trying to fight hyperglycemia but often just starting the roller-coaster.

Just about a year ago, I was taking 60-80 units TDD. Since my diet changed and I lost weight, I've cut my TDD to about 32.

I don't think that I've any beta cell function left after 29 years T1D. You know, tho, Dr. Faustman's theory is that the beta-cells didn't get destroyed with T1D, just suppressed. She's experimenting with a tuberculosis vaccine that she thinks can lift the beta-cell suppression. She's affiliated with Harvard and Massachusetts General Hospital. I haven't followed her in a while but the science was intriguing. Sorry, I digress...

My ratio was 10:1 until recently. It's now 8:1, 7 years after initial diagnosis. So my daily Novolog is about 12-0 units and Levemir is 24 unites.

I was diagnosed with diabetes in 08/2011, on metformin & glyburide for a few months, then just metformin, and started insulin therapy in 2012. My insulin needs were changing frequently for about the first 7 months, only recently have things started to level off where they should be and my TDD is about 30 units (10 units Levemir at bed, 7 units in the morning. I don't know if I'm still honeymooning or not?

I'm aged 40 and was diagnosed LADA-diabetic in July 2012, and here's my history:

To begin with, I do have a history of autoimmune disease, as I have Crohn's disease since I was 14 (this diagnosis was preceeded by a heavy attack of chicken pox, by the way).
After only one year of "standard" medical treatment of Crohn's, I only went to alternative practitioners and got along very well with this. In August 2011, my practitioner persuaded me to do an extended blood test, and there, my HbA1c was at 6.4, which neither of us had expected.

End of 2011, I went to see diabetologist (= an internist focussing on diabetes) and she just took another HbA1c (5.8), but no further testing, and asked me to protocol my BG for a week or two, which I did in January. After meals, I reached some values in the 160s-180s, but only because I tried out whencould I find the highest level of BG. If I had done what she told me (measuring 2 hours after meals), BG would have been back to normal already and I'd still be without diagnosis and treatment.
After this, she classified me as type 2 diabetic, but put me on no meds, told me I just should keep an eye on my BG. Perhaps my bad luck was, that I answered to one of her questions that I had gained 5 kgs weight during the past year due to stress at work, which made me 62 kgs at 1.66m instead of 57kgs).

This experience made me look for another doctor and found a more sensible one who took more time to listen to me and drew conclusions from my having Crohn's disease. She did an antibody test and the outcome was that I'm positive on GAD-antibodies (in July 2012).
This doctor strongly advised me to start with insulin very soon, as there was evidence from studies that would help beta cell function to last for a longer time. So in September 2012, I started with NovoRapid as bolus and no basal insulin (my fasting BG was 100-105 autumm-winter, and now is usually in its 90s).
Until now, my bolus doses are very low, my I:C ratio is around 1unit:30 grams. When I ride my bike to work (20 min), it's no insulin for breakfast, and no insulin either, when I'm planning to do sports the same day.
I had to find out about this all by myself, as the "diabetes counselor" working with my doctor says, as LADA-diabetics mostly have an intact glycogen/glucaon cycle, I could test out my dosis without the risk of hypos. She told me to increase by 0.5 unit if I went over 150 after meals. That's how I experienced some hypos where I measured values in the 50s down to the mid 30s, once even as low as 28 mg/dl, just after having an accelerated 10 min walk to catch my bus in the morning last winter...
So that's why I returned to I:C ratios around 1:30.
Next thing I tried was injection 15-20 mins before meals. This works fairly well, especially if I'm planning to eat faster-acting carbohydrates. This was a suggestion of my doctor's, and it's based on the fact, that the graph of the insulin effect curve becomes steeper, as more units are injected. So, with my few units (for my regular meals, it's 1.5-2.5 units), the curve is not very steep and the maximum effect of insuline only reached after ca. 1.5 hrs. Therefore: please be careful to imitate this if you are on higher doses!!

Im focusing on my after-meal values, as this currently is the only time when my BG goes too high: it goes up to the 170s until 200s when I try without insulin, sometimes even with insulin, if its effect comes too slow for my digestion. This is also where I see that probably my rest function might be currently decreasing: two years ago, my BG went back to normal values faster and more reliable after meals. Now, for the last 2 or 3 months or so, it stays higher for up to 3 hours after meals.

Like Zoe, I was diagnosed as type 2 (28 years ago), and placed on oral meds for about a year. I then progressed to 1 shot of ultra-lente (don't remember how much - maybe 18-20 units?). Then, I went to the devil's insulin (NPH) + regular for about 20 years - TDD about 30-35 u/day (2 shots/day).

Finally, I went to 'true' MDI - Lantus + Humalog with a TDD about 35 u/day. Five years ago, I started pumping, and my TDD has remained pretty constant at 25-30 u/day with Humalog or Novolog. I had some Apidra, and had to bump up my TDD to about 30-35 units/day.

I make no insulin - c-peptide < .1.


I'm enrolled in Dr. Faustman's trial, and I don't think that the beta cells get 'suppressed'. The way she explained it to me (IIRC - it was about 3 years ago that I first interviewed with her - sure wish I'd have tape-recorded that interview) - is that the autoimmune attack DOES destroy the beta cells.

She thinks the TB vaccine (BCG) halts that autoimmune attack. We constantly re-generate beta cells, and since the autoimmune attack is no longer there, the beta cells are no longer destroyed (of course, they'll die off naturally, but then get replaced), and we produce endogenous insulin.

My sincerest apologies to the OP for taking this off-topic.

10 years since my journey began. I'm at 18 units of lantus and 5-7 units of novolog 2-3 times a day now. When I first started on insulin over a year ago it was only 10 units of lantus. slowly watching my pancreas poop out. :-/

I was misdiagnosed as a type 2 about 16 years ago, and was eventually put on 3 medications and still had high numbers and high A1c's. Finally read about LADA at a diabetes online support board and asked my doctor to do a C-Peptide test. I had practically no C-Peptide. Never did have the antibody test. At that time I was put on insulin and diagnosed type 1.5. I've been on various insulins and just recently started pumping. My insulin to carb ratios has stayed the same (1:15) and my TDD has been consistely approxiately 35 U.

incredible story Gail...! I cant believe how many people have to go through the ordeal of a misdiagnosis before the doctors finally get it right...And once again, in the end, YOU were the one who practically diagnosed herself!
May I ask how long it was between being diagnosed type 2 and starting insulin, on other words how long you were on those oral meds?

I was on oral medications for 3 years .... lost 60 pounds!! Family was worried about me I was so skinny. Gained most of it back, unfortunately! LOL