LADA myths

I just posted a new blog on LADA myths. I welcome feedback and please let me know if I missed any myths!

Very interesting. However, living with LADA does seem to be a different experience than living with child-onset T1. We do seem to experience more variability in how much insulin we produce at any given time, more like what is reported by parents of newly diagnosed children during their honeymoon period.

I have heard expressed by members of the scientific community that diabetes is more of a continuum rather than an either/or T1/T2 scenario. The truest element of your blog is that all diabetics should be treated according to how much insulin they produce, how sensitive they are to insulin, and what their blood sugar numbers are throughout the day. Not how old they are; not whether they look like supermodels; not some outdated superstitions.

What leading Type 1 researchers are saying is that yes, autoimmune diabetes represents a continuum or a rainbow from one end to the other (babies to the elderly, and other factors besides age). But autoimmune diabetes is a different disease process than Type 2 diabetes, so MDs such as Dr. Anne Peters make a clear distinction between T1D (autoimmune) and T2D. Dr. Peters, in Type 1 Diabetes Sourcebook, says:
• We want [medical] providers to know that patients with T1D are not the same as patients with T2D; thus, we describe the specific approaches for patents with T1D across the life span. Page 73.
• The pathophysiology of the two diseases [T1D and T2D] differ on a basic pathophysiologic level such that T1D is marked by insulinopenia while T2D is characterized by obesity, hyperinsulinemia, insulin resistance, and relative insulinopenia. Page 104.

Thanks for your post and blog. It should be sent out to all dr’s treating adults with type 1. I was first told I had type 2just from a finger prik at the dr’s office , because of my age she said it had to be type 2 and we would give it 6 weeks on oral meds and diet change and see how it goes. Ya no , made myself endo apt and total blood work up and at 48 type 1. So thank you for your blog and support that it is different in onset and NOT type 2

same here...I was just given a basic CBC with and A1C test as well. Went back to my Endo and demanded the GAD and the Cpeptide be done. My suspicions were correct...the gad65 was outside of normal range on the high end and my cpeptide was normal. Maddening. I have been treated as a Type 2 since my dx back in August 2013. This is actually Type 1.5.

Hi Janet: Are you on exogenous insulin? As a Type 1, confirmed by autoantibodies, you should be.

While oral meds may NOT be effective in some Type 1s, they worked for a time during my long honeymoon (about 15 months) because I had sufficient pancreas function to flog it.

No, and I am wondering if I should. The admin at the doc office said that we are going to continue treating as type 2 with my medications and exercise..but I am wondering if I need to circle the wagons again...grr.

Whether you need insulin or not should have nothing to do with what Type you are. Though the reason for needing insulin in Types is different--if you need it, you need it. If you cannot get good A1Cs with oral meds, good diet and exercise, then you need insulin. Period.

I used oral meds for meals for 15 months (though I was on Lantus from the beginning) before I needed mealtime insulin. It's not unusual to have a long "honeymoon" before you need insulin. I should have known I was really Type 1 (or 1.5) because I have another autoimmune disease (psoriasis)-- and I have a brother with Type 1 who was diagnosed 43 years ago.

Hi Janet: You are autoantibody positive--that means you have Type 1 autoimmune diabetes. If I were in your shoes, I would insist that my doctor treat me for the disease I have. The appropriate treatment for Type 1 is exogenous insulin. Early insulin treatment in those with slowly progressive Type 1 can preserve remnant beta cell function and prolong the honeymoon.

Here is some information from The Type 1 Diabetes Sourcebook (ADA/JDRF 2013):

• We consider all patients with evidence of autoimmunity to have T1D. Page 5.
• Adults developing T1D may follow a less precipitous course with few or no symptoms and an elevated glucose level identified incidentally on routine blood work. These individuals may be treated (unsuccessfully) with oral agents before it is determined that they are actually patients with evolving T1D who need treatment with insulin [emphasis mine]. Page 3.
• Initial Treatment for Adults: Adult patients can vary greatly at presentation, from a more acute picture, with DKA and marked hyperglycemia, to a more gradual course such as is often seen in LADA. For those presenting acutely as well as those presenting more indolently, starting insulin is the mainstay of therapy [emphasis mine]. Page 79.

Yea, I am thinking I will have to have a long and hard talk about the course of my treatment. When your pancreas was slowing down, did you get frequent headaches, nausea?

Hi Janet: I had rapid onset Type 1 diabetes at age 35, hospitalized in DKA (horrifying that I was still misdiagnosed as having Type 2). So my pancreas didn't slow down, it crashed and burned. Maybe someone else can answer your question?

I hear ya. I have the start of gastroparesis too…I hate my body.

Melitta, interesting blog. Thank you. I was drawn to this LADA group not because I have been diagnosed with LADA but as an adult onset diabetic. After one year of weight loss and attempts of using sulfa drugs like diabeta, I was sent to an endo and put on insulin. But at the time there was confusion on my diagnosis as T1 or T2. With no testing of antibodies, my endo told me I was T1 (juvenile type diabetes). I am in the process of finding a new primary care doctor. The one I checked out yesterday stated he was sorry to "burst my bubble". I do not have T1. Because I have not experienced ketoacidosis or have been to the hospital with diabetes. I know he's wrong and is checked off the candidate list for primary care. Now I wonder if I should be tested for autoimmune markers. I have always considered myself and treat as a T1. But what I got from your blog was how critical doctors are of LADA. Do I need to have proof of my diagnosis or just more searching for a primary who is up to speed with and accepting of LADA?

Many doctors assume if you're diagnosed from your late 20s on that you're a Type 2. Your primary care doctor does not have to believe that you're Type 1. It's your endo that should be the doctor most responsive to your diabetes. It's pretty clear that many doctors are stuck in the juvenile diabetes? You're not a juvenile!

I see my endo more often than my primary care doctor--especially when things are changing rapidly. Look for a primary care doctor (I like internists) who is open-minded. But this notion that you have to have ketoacidosis or go to the hospital to be a Type 1 is bogus. I've never had the K and only been to the hospital ONCE for my diabetes (a strange persistent low) in almost six years. I've never even had ketones once though I've tested for them many times and was in the high 400s when I was diagnosed.

Look for a doctor who doesn't think you have to be wounded to be a soldier!

Your doctor doesn't have to believe you're a T1 to be your doctor but if they are the mindset of my being a T2, their care will be based on my being a T2. Yes, I will continue to look for an open minded internist.

I am being tested for LADA at the end of next month. My Dr told me up front he wasnt very familiar with it (he is a family medicine) but said he would research it. My concern is that I might have it because I have two auto immune conditions since I was 12 (alopecia universalis and psoriasis) and everyone on my moms side of family has at least 2 auto immune conditions (current max being 4 in my mom and 4 in my grandma). I am very anxious to get this done, ive been on 2000mg metformin and 100 mg januvia since april and i still range anywhere from 120-250, have gone below 100 a couple of times but it doesnt last long. meds have miserable side effects. I lost 10 lbs in the first month, eating low carbs but mostly from the stomach problems of the meds. dont have access to a scale currently but am sure Ive lost at least that much or more in the last month since my last visit. feels like the end of july is so far away still, getting kind of depressing seeing my numbers bouncing all over the place constantly.

Ksadair, is there any chance you can been seen earlier? The weight loss is usually a sign of uncontrolled Type 1 diabetes, and really is not good. Any chance you can see an endocrinologist?

Maybe is just the metformin? I’m trying to work it out with my spouse so I can go earlier but he doesn’t seem to care really how anxious this makes me he went with me when I get diagnosed and pretty much blamed me for not exercising even though I very active at work I have a physically demanding job. So now I have him wait for me. As long as I don’t go to dka or something I should be ok til July I think I mean if it’s gone this long already. I know that doesn’t sound good I’m just not able to rearrange things that easily right now