As a newly diagnosed LADA- I am wondering about the progression of your diabetes to full blown insulin dependency. I know that for people with my combination of autoantibodies (GAD65, IA-2A and ICAs) that within 5 years of diagnosis we are totally insulin dependent- with little to no remaining islet cells (based on lack of insulin production).
My question is: How long ago were you guys diagnosed and when, if ever, did you become totally insulin dependent?
I’m a graduate student- and so you know- most of the people I work with in the lab believe that LADA is simply type 1 that progresses more slowly- likely based on our genetic makeup tempering our immune response.
I was diagnosed 14 months ago and just recently saw a small rise in my fasting numbers. (from 80 to 100) I still have a lot of second phase insulin production but I only had a borderline positiveon islet cell antibodies so I am probably very early in the process. I am curious to hear from every one else. I eat a very healthy, low carb and mostly raw food diet which I’m hoping will slow the autoimmune attacks.
How did you come to be diagnosed?
I did a study on campus that measured insulin sensitivity and glucose tolerance.
When they did the OGTT for me- I was 230 after 2 hours. After that, I went to an endocrinologist and they tested me for antibodies, and repeated the tests. Then it was a waiting game- watching my tests go up until they reached the point where I was clinically diabetic- but everyone knew it was only a matter of time and I imagine it is still only a matter of time till I have no islet cells left.
I had an A1C test because I was tired all the time and my doctor ran a number of tests. It was 7.2 so I started testing and found that I briefly went up to 180 after eating small amounts of carbs. However, I come right down again so the OGTT came out negative. (175 after 30, 60 and 90 minutes, but 112 after 2 hours. The first endo I saw told me I didn’t even meet the criteria for pre-diabetes but my own doctor thought something was wrong and agreed to the antibody tests. I was the one who mentioned LADA after reading about it on Jenny’s blog. I got the diabetes diagnosis immediatley even though I am not typical. My endo thinks I am nuts because I keep my numbers totally normal- under 120 ALL the time, even after meals. I use insulin about 4 units of insulin before meals and will be adding Levemir tomorrow. The funny thing is that my A1C runs about a point higher than my average BG so probably if it didn’t I wouldn’t have been diagnosed at all. 7.2 didn’t correspond at all to my fasting numbers of around 80 and post meal numbers of 120 or so at 2 hours. My average BG is under 100.
I was diagnosed Oct 07. Since then, I’ve had to really restrict my intake of carbs. In an effort to eat more carbs and better regulate my BS levels, I’ve tried Januvia, but it didn’t do anything. I just started Metformin a couple weeks ago, but I’m seeing my post-meal readings continue to rise. My fastings are rarely, if ever, under 130. I aim for 120 or less post, but that is becoming harder and harder to achieve.
Did you see your fasting and post-prandial readings just gradually rise over those 3-4 years? Any other indications that your diabetes was progressing?
It hasn’t been 5 years yet… only 2 since my original indication that I was on my way to being LADA. But yes, my fastings and such have definately gone up.
When I started my fasting was in the 90s, then it went up to 95-105, then 105-115+. I went on insulin at this point, because I could easily go over 200 after a meal with a decent amount of carbs. The highest I have ever seen is 320- after 3 hours post lemon meringue pie, but I can easily shoot up my BG to over 200-250 by eating alot of sugar.
I’m on lantus now- only 7 Units, but I have no illusions that it will stay that way. My understading is that insulin will rest your pancreas- so it doesn’t have to try so hard, and maybe prolong insulin producing capabilities, but no one knows for sure.
When my endo first saw me, I think he really wanted me to be a type 2- made me lose weight, try metformin, januvia and prandin, none of which made any difference. Eventually they called me LADA- and changed my diagnosis in the computer to Type 1.
I was diagnosed as type 1 at the age of 21. I started on insulin immediately-- as I was diagnosed in the ER close to blacking out with a BG level over 600 and an A1c of 12.3.
But I often wonder how long the process was. I had an annual physical almost a year prior to diagnosis-- and the doctor did not alert me of high fasting blood glucose or A1c, but I don’t know what my levels were. My insulin production ended (quite noticably) about 3 months after diagnosis. Prior to that, for me “high” was 150-180. After three months, when I saw my first BG over 400, I figured the honeymoon was over.
Does the level of antibodies reflect how far along you are in the process? Or only whether it will take place quickly or slowly?
Looks like I might be the old time LADA here - I was diagnosed with gestational diabetes 32 years ago when I was 3 months pregnant with my 2nd child. It tested normal right after my daughter was born (but nursing lowers your bs even if you are producing no insulin). Another pregnancy 2 years later resulted in high bs that did not go away - so they diagnosed me with type 2 diabetes (at age 31) and tried to control it with diet & exercise - this was before blood glucose testing, A1C’s & the studies that proved good control was important - so it was a couple of years before I left my gp and went to an endo who put me on insulin - I was amazed at how much better I felt since my control had not been that good before. The color bs test strips came out about then so I was able to start testing my bs on a regular basis which was also great. I started out on a couple of shots per day - progressed to multiple shots (this was before humalog and other designer insulins also - so it was regular before meals and a longer acting at morning and night). With an math/engineering background I am a little OC about my control - I test 8 to 10 times per day - but it has paid off since after 32 years I have no complications - and I gave birth to 2 more (unplanned) babies with A1C’s of about 6.5 during my pregnancies. I have been on an insulin pump for the past 12 years - I love it and humalog - makes my life much easier.
I think I was still producing insulin for the first 5-10 years. My blood sugar was easier to control and would sometimes end up lower than I expected from my insulin intake. I am pretty sure I have not produced any for quite a few years - now I can go rapidly from normal to 500 if I mistakenly don’t do a bolus (too many buttons to push sometimes I unintentionally quit before I have pushed them all) or my pump runs out when I am away from home (or when I am asleep and don’t feel/hear the warning.
I probably didn’t hear the name LADA until about 14-15 years ago - my endo called me a type 1.5 at first - then switched to type 1 after a few years. It is sad that LADA is still being misdiagnosed as Type 2 after all these years - especially since I read it includes about 10 % of the adult onset diabetes population. I think I have convinced my daughter to see an endo - but she is very afraid of needles (though she has been testing the past week since we suspected something was wrong) - that I don’t know if she will be enthusiastic about starting on insulin right away even though I told her that was the best in the long run - she actually is so stressed about finding out she is diabetic that her her fasting bs rose the day after the doc told her.
Even with an A1c of 14 I never developed DKA. This is probably one of the reasons why LADA is often misdiagnosed as T2 (DKA occurs more often in T1) and the fact that in the beginning we also seem to respond to oral meds. My progression was gradual for about 2 yrs after my initial dx in '05 (my fasting bg was 125) then rapid about Nov '07 at which point my oral meds were just increased and januvia was added with metformin; No help from that either so I finally demanded a referal to an endo. I only wish I had been put on insulin sooner.
I started off taking .5mg of glipizide for the first year. I went on insulin, due to being prego. After I had Niya(2005), I was taking 2.5mg glipized (2 tablets twice a day) 500mg metformin (bid). think my being prego helped push me other to insulin a little faster; I may be wrong.
When my Endo placed me on the listed above, I was fine until Dec 2007. I noticed a change in my fasting and post readings…lol I would only eat 20g of carbs and my bg’s would be 180-220. My Pcp couldn’t figure it out. They added another tab of metformin before lunch, it worked for 2 days but after that I still continued to get highs.
LOL, I tried telling my PCP that I Type 1.5/LADA and the NP said it was the samething as Type 2. LOL, she was wrong.
I went back to another Endo and the NP checked my GAD65 and my antibodies were very high; if you would like to know the total let me know. I knew I would have to be placed on insulin, I was ready for it. I hated seeing HIGH numbers.
I was diagnosed with LADA last February. I was put on insulin immediately. The doc actually injected me with Humalog before I left. My fasting sugars were about 180 at that time.
My dad is T1 so he told me to test my blood when I told him I was tired all the time and lost 20 lbs. I’m a grad student too and being tired that often made me act as fast as I could. My endo did say I am still in the “honeymoon” phase. The beta cells must be spitting something out, so I guess a year and a half in I’m still not totally insulin dependant.
Hi… I got diagnosed at 25 and was insulin dependent 2 years later. I’ve had it 13 years now. I felt SO much better when I started the insulin because my body just needed it to feel better and get my sugars more normal. Exercise, diet and pills just didn’t do it for me. I actually wish I would have started earlier because you sometimes don’t know how bad you feel until you feel much better. I now take Humalog and Lantus- both pens.
I was diagnosed as a T2 on April 24, 2008 at the age of 35 in the ER with DKA. While there my future endo ran some tests on me and two weeks later re-diagnosed me as a T1. Now, I had started insulin, with a sliding scale, and metformin right away. Since the test came back positive for antibodies and a very low c-peptide result we dropped the metformin and switched to a basal/bolus regimen.
It is possible I am producing a little insulin, but I guess I would need another c-peptide test. I have read where the pancreas shuts down because your BG is very high and that may have caused my low c-peptide score before. I do know that I have a very easy time controlling my levels and I only get into trouble when I eat all my carbs in a high GI form like this morning. Usually though, I run pretty damn good numbers, and when I exercise the next day I run a flat line all day.
I’m about 7 months into my diagnosis. Metformin is working for me at the moment. Fasting bg is 85-90. I seldom go over 170, but I don’t have much of a sweet tooth. Its easy to keep it under 120 if I don’t overeat.
I’m glad to see the site is buzzing with LADA-related info, as when I joined it seemed under-represented. With the slow progression of LADA, does it make sense to pursue a treatment like Diabecell. Seems like insulin dependence could be put off indefinitely with such a treatment.
It’ll be 3 years in September for me. I was originally diagnosed as a T2 (despite having lost 40 unexplained pounds) and put on Lantus and Metformin. Fortunately, my diagnosis came with an Endo referal where I got my c-peptide and anti-body tests. My diagnosis changed to a T1, I was taken off Metformin and given Humalog. No honeymoon period for me. My islets were already dead. Totally insulin dependant.
I injected for a year, then switched to a pump.
As I understand it, your progression will be your own. Some people go fast, others take a long time to get to full blown dependancies.
BTW, I’m in the same camp as your peers. From my perspective, T1 and LADA are both auto-imune diseases that have killed off your beta cells making you insulin dependant. The only real difference is the age it happens and the possible honeymoon period. Although I’m not sure if childhood diagnoses also have a honeymoon period.
I was first diagnosed as pre-diabetic in late 2003. During that summer I struggled to stay healthy, it seemed like I was constantly battling sinus and respiratory infections and other nagging bugs. I finally went to a primary care physician late that summer. He ran some blood work and noticed that my fasting level was a bit elevated. I don’t recall the exact #, but it was in the 130 range. As we went over the results he kept going back to the BG # a decided to send me for a glucose tolerance test. His exact words were “I don’t think there is any way you can be diabetic, but I have to go with my gut on this one.”
During 2004 I was able to maintain control via weight loss and diet restrictions. I dropped from just under 200 pounds to 175. (I’m 6’0") My A1c stayed below 6 until the end of 2004. That is when things began to slowly unwind.
From 2005 until near the end of 2007 my A1c slowly crept higher, despite monitoring my diet and trying different oral meds. By the end of last year I was losing weight at a steady rate. It didn’t matter what I ate nor how often I ate, I was losing a pound or two per week. My BG levels weren’t sky high, but I was struggling to keep it below 150 on a good day, 200 on others.
At my wife’s urging I made an appt with an Endo. During our first meeting he walked into the room, looked at me, looked at my chart, closed the door and took a seat. His first words were to the effect “You are probably wondering ‘How the heck can I be a diabetic…’” He ran me through the standard tests and came to the conclusion my pancreas was most likely enjoying its last hurrah. I began taking NovoLog and Lantus. Within days the change was evident. I had energy back and was not constantly hungry. A few months later I was back to my normal weight (170-175) and feeling great.
I started off on relatively small doses of both (14 units per day, significantly less if I’m active) but recently my BG levels have started to climb. Its really annoying because I had fantastic control through the first half of the year (averaging less than 110) but since late June it has been a struggle. I increased my Lantus dose to 17 and began taking a small dose of NovoLog in the morning. So far I’m all over the charts, from 60-280, but I will figure it out!
I was diagnosed in 2001. Controlled with diet for a short while, then diet and meds (metformin), then more meds and no control, then finally started insulin in December 2004. My MD believed I had type 2 until confronted with my spiraling out of control A1C in 2004, and I never saw an endo til I was pregnant, so I’ve missed out on most of the sophisticated tests. While I’ve been on insulin for almost 4 years now (gulp!), I still have little to no resistance, but without the insulin my bs shoots up quickly. My pump average is around 18-20 units per day right now,
My fasting numbers are around 110 to 120. I have not really noticed any change in the last year since my initial diagnosis. My doctor put me on glimepiride, which did lower my BG, but I’ve stopped taking it. The bottom line is that no matter what, I will be completely insulin dependent so I figure that I should start treating myself that way now. I was a little bit afraid of the “burn out” effect with glimepiride, although my doctor doubts it.
Sometimes my BG is so well under control that I have moments of “Maybe I’m cured!” But then I’ll have an episode of 300 after a meal and that usually snaps me back to reality very quickly.
