I'm one of those who was misdiagnosed as Type 2, then later diagnosed as Type 1, but I'm really LADA.
Six years ago, I was 33, a Masters swimmer and runner, with no diabetes in my family. So being diagnosed with Type 2 was quite a shock. After the shock wore off, I started doing my own research and started to suspect my PCP was wrong.
He had me on just about every Type 2 pill (including Avandia) and they didn't work. I eliminated most carbs and exercised after every meal to try and control my blood sugar.
When I finally got to see an endocrinologist he ran the C-peptide (low normal) and GAD65 (positive), so he changed my diagnosis to Type 1. (Like many doctors, he doesn't recognize LADA.) He suspected my hypothyroidism was Hashimoto's and I also tested positive for that.
I started shots a few months after the Type 1 diagnosis because I hurt my foot and wasn't able to exercise enough to keep my blood sugar down. I switched to an insulin pump a year later because I don't use a lot of insulin (TDD = 15 units) but I need more basal overnight than I do during the day.
Ok, was that TMI? Looking forward to meeting you guys!
I am not a Type 1, but that was not TMI at all! Welcome to our family. We’re glad you found us. Your story is a very common one among our members… Unfortunately, many health care providers are sorely misinformed about Diabetes, to the point of being a major detriment to their patients… I just hope that, with places like this, and awareness growing… that one day, it will be less so. Glad you were smart about your diagnosis and did some research of your own.
Welcome, Tina. I was in the same exact position three years ago, except my doctor’s had a little excuse in that I was 58 and had been somewhat overweight (though I proceeded to lose 40 pounds!). I too figured out my true diagnosis on m own and with a lot of help from people on here and other websites. I went for a little over a year on orals before my numbers start to climb and climb and I got on insulin. Sounds like you’ve weathered the storm well, and you’re right no doctor or endo will ever write the words LADA, or at least not until it’s recognized by the powers that be. I don’t really care if I’m called LADA or Type 1 because it’s ultimately the same, but I wish more info would go out to the medical profession so less of us would be misdiagnosed. What would we do without websites like this? Welcome.
when I was first diagnosed they thought type 2, then the test kept coming back as inconclusive then finally my endo at the time said “you have LADA”. the good thing is I researched it through this site! I started a group for LADA if you want to join :)…
Welcome Tina! I’m so glad that you found us!!! I was diagnosed with type 1 at 21. Actually the ER doctor diagnosed me as type 1.5, but my endo later corrected that and told me I’m just plain type 1 (she didn’t recognize LADA either).
Anyway, glad that you are here!
(That was not even close to TMI – hope to learn more in our discussions!)
Welcome Tina - TuD probably has more LADA members than most doctors have ever seen. I am glad you have found us.We diabetics must be our own advocates for our health and not be satisfied with answers we don’t think are correct.
Thank you! I think LADA Week will be very helpful for awareness. I wrote a little about it on Facebook and Twitter, so hopefully a few more people know about it now.
Thanks for the welcome, Zoe. Glad you figured out your true diagnosis! When people ask, I always just say “I’m Type 1” so I don’t have to get into a long explanation. But maybe that’s a mistake. The more people who know about it, the better!
Maybe I’m misinformed, but isn’t LADA just a form of Type 1? (As in, Type 1 diagnosed later in life?) I could see some doctors not recognizing it as something else, because as far as I understood it, it’s still Type 1… Please let me know if I’m way off the mark.
Yes, it’s a form of type 1 but it develops differently (more slowly) and therefore is treated differently. For example, for the first year or so after my diagnosis, I was able to control my blood sugar (with A1Cs in the 6s) with diet and exercise, because I was still producing some insulin. It’s my understanding that a “true” type 1 produces no insulin, therefore insulin therapy is needed immediately.
There are discussions as to whether certain oral medications (or early insulin treatment) are harmful or helpful to people with LADA. I think if more people with LADA are correctly diagnosed, studies could be done and we could find out for sure which is the case.
I say Type 1 as well because I’ve found many people just aren’t interested in more; but the people close to me or if someone expresses and interest, I go into it more.
It is just a form of type 1, Kari, an autoimmune disease, but other than being diagnosed later in life it is most different by being slower onset. This is why many of us get misdiagnosed, because we can do ok on type 2 oral meds for months or even years before our insulin poops out on us.
I find it confusing sometimes to know if someone is “regular type 1” but diagnosed later in life. I guess I’d need to know more about their onset to know that. It’s further confused because doctors diagnose us as simply Type 1 even if they know we are LADA because it doesn’t officially exist.
One of these days I’ll do a survey on how many typical type 1’s (sudden onset) there are who were diagnosed later in life (say 30 or over). It would be ok if people answer that here, I just don’t want to hijack the thread.
We’re glad you found us. Your story is a very common one among our members… Unfortunately, many health care providers are sorely misinformed about Diabetes, to the point of being a major detriment to their patients… I just hope that, with places like this, and awareness growing… that one day, it will be less so. Glad you were smart about your diagnosis and did some research of your own.