Replies to This Discussion

Permalink Reply by Tess on October 9, 2011 at 10:20am

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.

Permalink Reply by Zoe on October 9, 2011 at 10:22am

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.

Permalink Reply by mary on October 9, 2011 at 10:39am

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.

Permalink Reply by Jessica Apple on October 9, 2011 at 10:42am

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.

Permalink Reply by mary on October 9, 2011 at 11:01am

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.

Permalink Reply by Erik Jansons on October 9, 2011 at 11:31am

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

Permalink Reply by Jessica Apple on October 10, 2011 at 3:20am

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

Permalink Reply by AndyJane on October 9, 2011 at 7:32pm

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

Permalink Reply by Khürt Williams on December 23, 2011 at 11:04am

Same here. Perhaps all those others misdiagnosed had really bad doctors. I went straight from the hospital - they had to get my BG under 200 - to see an endo who did a bunch of test to confirm the diagnosis.

Permalink Reply by swedishfish on October 9, 2011 at 7:36pm

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.

Permalink Reply by Melitta on October 9, 2011 at 7:51pm

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.

Permalink Reply by Sheila Fitz on October 9, 2011 at 8:51pm

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.

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