I want to share my story to see if there are others who have been in this situation. I was diagnosed with T1D in April 2008 at 20 years old. My A1C at diagnosis was 6.1. I can’t even remember why I was tested but I had no “diabetes” symptoms except for being thirsty all the time. I was referred to an endocrinologist who tested me for GAD65 and that test came back high (4.1) so I was put on insulin - levemir 5 units at night and humalog - carb ratio 1:20. I averaged 11 or less units daily. My endo told me that I was in my honeymoon phase and I will eventually need more insulin. I didn’t believe I had diabetes then and I still don’t believe I have full on Type 1 now.
In the meantime, I moved and had to find a new endocrinologist. Fast forward to 2014 and I asked if I could be put on an insulin pump to alleviate having to take MDI when I’m at work and in lunch meetings, etc. My basal rate was .20 and my carb ratio remained the same. Total daily insulin still under 11 units. My endocrinologist said to me “I’ve never met a type 1 who needed such little insulin.” I asked her if it could be something other than Type 1 and she said no. I went to a diabetes conference (can’t remember the name of it) and all the Type 1’s who asked questions and revealed their dosages all took way more insulin than I have ever needed. 30, 40, 50+ units a day.
I was pregnant in 2015 and came off my pump after my last pregnancy because all the alarms between my dexcom and pump were driving me nuts. I went back on MDI and found a new endocrinologist because the other one constantly reprimanded me during my pregnancy that my sugars were too high (my A1C through the length of my pregnancy ranged from 5.7-6.2 ).
Without having mentioned the fact that I am skeptical about my diagnosis, the newest endocrinologist told me that she didn’t think i had Type 1 even though the antibodies were there given the fact that I am on practically the same insulin dosing as when I was first diagnosed in 2008. She wants me to be tested for MODY but I have to wait until November because I am pregnant again and she said it’s best to wait until after this pregnancy is over. I am very excited that a doctor is also skeptical of my diagnosis.
I’ve done a lot of research these last few weeks regarding MODY and a lot of the information says that antibodies should not be present. I also don’t have a family history of diabetes (we have a few other autoimmune diseases but I was the first and only one to nail down the T1D diagnosis). I’m wondering if anyone here has been diagnosed with MODY after being diagnosed as Type 1? If so, can you share your story?
I know of others who have been tested for MODY after being given a diagnosis of T1, I hope they can come forward and give you perspective. I have been tested for MODY but came back negative and I have written about my experience. In my blog there are a number of posts on MODY (a good place to start reading is here). There is even a movie on the subject of patients being rediagnosed by Kovler from T1 to MODY. It is called “Journey to a Miracle.”
I actually find it odd that you won’t be tested while pregnant. The test itself is just a blood draw. Perhaps your doctor just doesn’t want to make any changes to your treatment while you are pregnant.
I hope you get this figured out. One of my students was diagnosed with mody when he was in the army. He was very tall and thin and he was losing weight- his a1c was what clued them in to a diabetes diagnoses and he was discharged. I can’t remember what he said about the mody diagnosis and how they figured that out, I think there was a family history. He doesn’t need any insulin though, he just has to watch his diet and overall health, so he was saying he is very lucky.
Your doctor is confused–MODY is a function of one of a variety of single genetic mutations, which you were either born with or not, so pregnancy plays no role in whether it’s diagnosable.
As best we can tell, people carrying one of the MODY mutations have an equal likelihood of also developing more “normal” diabetes, including Type 1 and the catch-all Type 2, as the general population. I don’t think we understand at all how MODY diabetes might interact with such more normal diabetes, though it’s plausible they should interact.
MODY-2 or GCK-MODY is the specific subtype for which the current recommendation is not to treat at all. But that’s not true of some of the other MODY subtypes.
Given your presentation, I’d recommend emailing the researchers at the Kovler Center at Chicago, if they think you’re a plausible candidate, and I’m pretty sure they will, they’ll provide you with advice. In the past they used to test people for free, but they don’t do that much anymore because they don’t have the funding to do a lot of free testing.
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