How Long Until Insulin?

Hi Lada People,

I’m curious to know how long from the time of your diagnosis until insulin was prescribed? Is anyone managing LADA with oral medications?

At one point, my primary care doctor suggested I take Januvia.

I started insulin shots the day of dx. Age 52. My internist did not know which type I was. Seems unusual compared to others’ stories. Dx’d T1 8 mos later by endocrinologist, who happens to be T1 himself.

I was misdiagnosed as Type 2, Jessica, and I did fine on oral meds for about 15 months. Then my numbers started a slow but inexorable rise. I started on insulin at the 20 month mark but probably should have started sooner as by then my numbers were way too high. Many studies say that LADA’s should be started on insulin right away to preserve Beta cell production.

When I was 48, I was misdiagnosed as Type 2, started on Metformin and told to cut way back on carbs. Threw a fit in a group training session because even with almost no carbs I couldn’t control my blood sugar and was on the verge of anorexia. Someone listened, sent me to an endo who ordered GAD test and voila, three weeks later I was dx LADA and started on Novalog and Lantus.

Thanks for the feedback. I have read that some people with LADA can go as many as six years from time of diagnosis to full insulin therapy… but that doesn’t seem to be the case with most people.

I think one huge factor is how quickly one gets an accurate diagnosis. Previous doctors had told me to watch how much sugar I ate and to watch my weight ( my ob and a PP who was leaving to practice elsewhere), but they never quantified how much sugar (and we PWD know it’s not just sugar=carbs) and for a long time I was underweight. Basically, they figured it wasn’t their problem. My husband believes I’ve been having blood sugar-related problems for as long as he’s known me (36 years) and that it took that long for them to get so bad they couldn’t be ignored. I was never hospitalized; I told my doctor this is what it is. So one way to look at is 36 years without either meds or insulin, just healthy eating and exercise. And blind ignorance and luck.

It depends person by person - I was 44 when diagnosed (also as Type 2) and lived in oral meds for nearly 3 years. As the honeymoon phase waned, I remained on Metformin while beginning long acting insulin (Levimir) for nearly 6 months until I switched to all insulin: Novolog and Levimir. in the end I made the move or to pumping last Feb and find the flexibility much greater

Hi Jessica
I was started on MDI (multiple daily inections) straight away . . . I don’t think I would have coped otherwise.
I was diagnosed in April of this year. I believe there is a theory to start on insulin to protect what islet cells are still healthy for as long as possible ?? I never used any oral meds.
cheers
Andrea

15 months. I was first diagnosed as type 2 by the doctor, even though the diabetes educator was positive I was type 1. I was put on metformin and then eventually januvia, but kept losing weight and with no A1C improvement. I was tested for GAD, etc. then and put on insulin; I still haven’t figured out tight control, however! I’ve been on insulin for 10 months.

Hi Jessica: There are numerous studies that show that starting insulin in LADA as early as possible preserves remnant beta cells, thus giving you better control for a longer period of time and really reduced risk of complications. Then, if you talk with people who have LADA but were misdiagnosed as having Type 2, it’s pretty much universal that they will say it was such a relief to finally get on insulin. So if I were you, I would insist on seeing an endo and getting trained on intensive insulin therapy and initiating it as soon as possible.

I was lucky. I had an Endo for other reasons and told him I thought I was diabetic. My fasting bg was way normal, so he told me I wasn’t diabetic, but he gave me a meter after I continued to state my case. After the first 186, I went low carb immediately. A friend had told me about Dr. Bernstein - I belong to this group on Tu Diabetes. My first suspicions about diabetes were in Jan 2009. My last A1c was 5.6 in Aug 2011. I expect this one to be better. Endo tested my GAD antibodies after I brought in my Celiac genetic testing, and LADA was confirmed with very elevated GAD antibodies. I don’t have celiac, just the gene. I exercise hard, sadly, don’t eat much because of my age, 58yo, but it has kept my pancreas producing a very small amount of insulin - enough to cover my restricted low carb diet. I eat low carb vegetables, but no readily available carbs like bread, potato, tomato, pasta, sugar, onions, etc…I get severe thirst even with some brands of peanut butter. Exercise is not optional for me.

Blood sugar problems for 36 years before diagnosis?! Did you have any symptoms ?

It’s really interesting, Sheila, that you thought you were diabetic although your fasting bg was normal. Did you have any symptoms?

Actually, I believe the studies have shown that the most LADA are on insulin within 6 years, but that some went as long as 12 years. That is a long-time. That is different than saying when one should start insulin for the “best outcomes.” I actually believe that as a LADA as soon as one starts to find their blood sugar over 140 mg/dl after meals, then insulin should be considered.

ps. I am diagnosed T2, but started insulin 5 years after diagnosis. I was not prescribed insulin until after I started insulin.

i was diagnosed in April of this year and i’m now just starting insulin.

Jessica,
I’m a bit of a different story here. Dx in May 2009, age 49. My extremely evidence-based DO put Type 2 on the chart but suspected LADA, later confirmed by a GAD test. He said insulin was inevitable, and any Endo would do it immediately, but he said he found NO evidence of any better outcomes for immediate insulin use. He respected my desire to buy all the time I could. Until early this year, my DOs predictions were exactly right. Metformin and glipizide and lifestyle changes had brought an 11.1 A1c down to around 6.5 until fall of 2010 when it began to rise. At this point, the DO said we can double the metformin to (2000/day), but it won’t go down as far or for as long. And he was right. But as soon as my daily fasting BS (all I track) flattened out after the drop from the extra metformin, I motivated. Western medicine only had one road, and it sucked. I explored East in terms of acupuncture and meditation and researched intensely, picking up diet and supplement clues. If you want the detail, it’s here. Something (or combination) is working. After an 8.8 on 1/11/11, my A1c trended down to a 7.2 on 4/12, By the time we had the 8/5 A1c result of 6.3, my daily fasting numbers were steady around 110. We cut out the glipizide. My 90 day average right now (116) equates to an A1c of 5.5. I won’t know for sure for years if I’ve really restored Beta function and stopped the autoimmune attack. But I’ve got no complications, and won’t in this A1c range. And as strict as my diet is, it seems infinitely less of a lifestyle hit then the 24/7 rigamarole surrounding insulin. And I’ve bought 2 and a half years already. My original goal was just to hold on until some miracle pump, or islet transplant, or…whatever. But now, down near normal and holding, when the only conceivable graph line was supposed to be flat at best, trending up, it’s undeniable my Betas are holding their own. Sorry for the length of this. Usual disclaimers: everybody’s different, not everyone will choose to forego beer and chips. I don’t wish to disrespect anyone, but I question the knee jerk use of insulin. Ask. Learn. Take charge of your health.
Russell

Hi Russell: There are studies that show better outcomes with early insulin use/intensive insulin therapy in new-onset LADA, and no studies that show better outcomes by delaying insulin therapy–your doctor simply didn’t do his research. Personally I don’t think it is really appropriate to use the term “knee jerk use of insulin” when LADA is slow onset Type 1 diabetes, and the appropriate therapy for Type 1 diabetes is exogenous insulin. I don’t disagree that there can be unusual cases, and you may very well be one. But for most people with adult-onset Type 1 daibetes, the sooner they get on intensive insulin therapy, the better the outcome (improved metabolic control, prolonged functioning of remnant beta cells, decreased risk of complications, decreased risk of DKA).

Hi Melitta, My DO didn’t say he couldn’t find any studies. He just couldn’t find any he thought were good science. I completely stand by the term “knee jerk”. I’m being reached out to by people with appalling stories of being thrust onto insulin with no information, inadequate testing, and in no immediate danger. For the Type 2’s this happens to, it’s even more unconscionable. And I must say, I’ve never heard anyone assert that insulin prolonged beta function. But I’ll take your word that some study shows that too. But the point is, the epidemic’s upon us. I can guarantee you that all 300 million+ diabetics will not choose the same path even if they could afford it. The odds that I’m utterly unique in terms of my holistic solution are almost nil. I’m finding that many people, like me, find the compromise of an insulin lifestyle to be an absolute last resort. I just can’t stand the fact that people who should, aren’t being given the choice.

Hi Russell: Bruce Buckingham MD at Stanford has had incredible success in prolonging beta cell function in newly diagnosed Type 1s by using intensive insulin therapy (pumps) coupled with CGMs as soon as possible after diagnosis. Dr. Buckingham spoke about his study results at a Taking Control of Your Diabetes (TCOYD) conference in Santa Clara CA in 2010.

Here’s some information from my Bill of Rights blog: “In the Diabetes Control and Complications Trial (DCCT), all subjects with adult-onset Type 1 diabetes had some residual beta cell function (Bernard Zinman MD, DCCT). Those who were assigned to the intensive insulin therapy group were slower to lose residual beta cell function than the conventional therapy group (risk reduction 57%). Clearly, early intensive insulin therapy has enormous benefit. As demonstrated in the DCCT, “intensive therapy for Type 1 diabetes helps sustain endogenous insulin secretion, which, in turn, is associated with better metabolic control and lower risk for hyperglycemia and chronic complications.” LADA researchers in Japan (Kobayashi et al, 2002) have conclusively demonstrated that better preservation of beta cell function occurs with exogenous insulin compared to sulfonylureas, and that sulfonylureas hasten beta cell destruction.”

For most people with new-onset Type 1 diabetes, at any age, initiating intensive insulin therapy as soon as possible after diagnosis does have tremendous benefits and better outcomes. I am talking specifically about people with immune-mediated destruction of the beta cells. But people do need appropriate training and assistance, that is for certain.

Thanks for the data. I’m a packrat with this stuff for the archives.
I found this on Dr. Buckingham’s profile at Stanford:
"Consulting: Dr. Buckingham receives fees of $5,000 or more per year as a paid consultant for the following companies: Medtronic Minimed"
You klnow Medtronic makes CGMs and pumps, right? I imagine they’d love everyone to have a set. Can you say “conflict of interest”? And it’s rampant. Insulin and insulin-delivery is HUGE money. Some would argue that these studies find what they were designed to find.

But getting this cynical is not productive. It’s not going to change anything. This whole issue with insulin is only one small part of my message. I’m really more interested in how we change stress, diet, and lifestyle to live better, regardless of the state of our pancreas.
OK, I find this discussion is depressing enough, that I think I’ll attend to my other, and new threads, and let you have the last word, should you choose.
Russell