Hello all. Its my first post to any group here. Please be patient with me.
I share a similar story to so many other LADAs. It took several people looking at me saying, “You don’t look like a type 2 diabetic,” and 2 years on Metformin before someone pushed me to get bloodwork. The Endocrinologist I finally got into said that I had been “honeymooning” on the Metformin, but after C-Peptide testing, GADA testing and the like, I was “clearly” LADA.
So what I’m asking here is, “how do you know when your remaining insulin production has fallen off another ‘cliff’?” I was on Metformin for about 2 years when my sugars then suddenly started to climb, without gain in weight and without change in diet. Now I’ve been on Humalog for 1 year (Omnipod pump user), and I feel like I may be falling again.
What are other people’s experiences with this? How long was it before you had to make basal/bolus/ratio adjustments? And what was your first “sign”?
For me, I never saw a second cliff. I have a similar story to you. I was misdiagnosed type 2 and did well on oral meds for 15 months, then my numbers began a steady climb. By the time I started insulin and figured out I was LADA at about 19 months my c-peptide was .38 and .70 at two different labs, so I think I had already fallen off that cliff! In the 2+ years since then I have seen a pretty small rise in my need for insulin that happened gradually.
Whether it is a cliff or a couple stairs, the sign that you are producing less insulin is simply that you need to inject more exogenous insulin to get the same results. If you are interested you could also get another c-peptide and compare it to the original one.
Hi Marcus!
You’re in very good company here! My story started out like yours did…then after about 2 1/2 months it took a very different path. I found out I was pregnant and had to start MDI immediately. I maintained my A1C very well during the pregnancy and after delivery, my BG dropped sharply and stayed down for about 4 months. I guess this was my honeymoon. Then my BG went up sharply and I have not been without insulin since. I never had any of the other testing that others have had. My BG was over 800 when I was first diagnosed. I was immediately put on oral meds because I was 21 at the time, therefore couldn’t be a Type 1.
I had considered asking my endo for another c-peptide, but I wasn’t sure if it would gain me anything(?). My endo had started me off fairly conservatively, and has only made one adjustment to my carb ratio for dinner time, and one minor adjustment to my basal rate. My A1C has varied, but never been out of range, except when I “fell”.
When I saw the dietician last she had mentioned that I had a very “lite” dose of insulin. I also don’t feel like I’m quite as sensitive as I once was.
“I was immediately put on oral meds because I was 21 at the time, therefore couldn’t be a Type 1.”
I wish I had listened to people sooner. I heard SO often, “you don’t look like a Type 2 diabetic”, and kept getting funny looks. My primary care at the time said, “We don’t need to send you to the Endocrinologist. They would laugh at us. You’re an otherwise healthy 32 yom. We can control this.”
Then, when I switched practices, the new primary care simply asked, “How’s the Metformin treating you?” I said good, as my fasting sugars were under 120. Then I saw an APRN, who said, “But how did they diagnose you with Type 2? Did they do any blood work?” That answer was ‘no’, and we simply went on. Finally, an APRN that I work with finally said, "Dude. Force the test. " My sugar had gotten up over 250 without reason. I went back to primary care, who immediately doubled my Metformin, and said they would run the test (GADA), but it wasn’t going to change their treatment. Long story short, I finally go tmy request to see Endo, and started Lantus and Humalog.
I should have listened to everyone who said, “You don’t look like a diabetic…”
I too share a similar story to yours. I was diagnosed with what they taught was Type 2 in Aug 2007. Initially I was put on insulin injections for 3 months to stabilize my BG and then moved on to oral meds, without insulin injections - this worked until Jan 2010 when my BGs became harder to maintain and began using Novolog with meals but remained on Metformin. This past Oct (2010) I hit my next cliff and removed and stopped taking Metformin and began Levimir - problem here was a 12 lbs weight gain that I wasn’t expecting - did some research on the internet and learned that others had also experienced this same weight gain issue. Finally, after speaking with many Type 1 folks I realized that pumping was the best option for me, so in Feb 2011 I started on an insulin pump (Animas Ping) and haven’t looked back. In the end, I had a prolonged honeymoon phase which I am still in - C-Peptide results my beta cells are sporadically producing insulin so I do get up and down swings in my daily BGs, but for the most part I am able to manage my daily BGs and A1C levels fairly well - last A1C for me was 6.7 that I was very satisfied with - eventually I hope to get back into the 6.0 - 6.3 range that I was able to manage to as recently as 5-6 months ago.
Hi Marcus: Welcome to the club! I have written several blogs on misdiagnosis and the prevalence of adult-onset Type 1 diabetes/LADA, check them out.
I fell off two cliffs. When I was first diagnosed, I required VERY little insulin for about 12 months. I fell off the first “cliff”, required a bit more, then fell off another cliff at about 2 years. My insulin requirements have been largely stable since then.
I would also recommend two excellent books, “Think Like a Pancreas” and “Pumping Insulin” (or other book by John Walsh). You can use these resources to gain better control. Best of luck to you!
