Hi all . First timer here, figured I’d share my story . Much like every other post I’ve read about LADA, there was quite a bit of confusion about my diagnosis over a span of 5-6 years. Lucky for me my Endo isn’t narrow minded and heavily relied on my input/what was best for me .
Diagnosed as T2 originally five years ago, but as soon as C-peptide and antibody tests came back that quickly switched to T1 (0.5 ng/ml; positive for GAD65 only ). Started MDI, but once I got my basal figured out I was finding I rarely needed to bolus. So I was being well controlled on 10-12 units of Lantus daily . Over the next 6 months I had to keep lowering basal doses due to hypos til eventually had to come off insulin all together . Naturally the “I’m cured” thoughts creep in although you know deep down that isn’t true . This is where I have been over the last 6 years until blood sugars started creeping back up lately which really got my research juices flowing and became convinced that my case is LADA. Doc tried pushing various orals , but I respectfully declined and asked to be put back on MDI which has now made things immensely easier to control . C-peptide is still hovering between 0.3-0.5 so it’s still a toss up when the failing pancreas decides it wants to work, but there is an odd sense of relief that with it losing steam things are more predictable.
Crazy the many masks this illness wears and how everyone’s experience can vary drastically, but reading this forum has been such a huge crutch/resource for me when I was trying to get this thing figured out . Until looking deeper into it I never would
have guessed a 6 year honeymoon to be a possibility. Kudos and respect to all the true Type 1s out there that were completely insulin dependent from the get go . In a way I feel like I got a victory lap and some time to really figure this thing out .
I’m one of those classic Type 1, diagnosed with juvenile diabetes 50+ years ago. Clear cut case, diagnosed by doctor smelling my breath, in addition to frequent peeing.
I have great respect for those who get the run around, misdiagnosed, or made to feel that nothing was wrong, or worse, mis-diagnosed.
Welcome, there is so much to learn and share with others, regardless of “type”.
Many primary care physicians use the old: Juvenile, Adult diabetes diagnostic (mine did, 30 years ago). If you’re younger than 20, it must be Juvenile, Type 1, no insulin. If you’re older than 30, it must be Adult, plenty of insulin that no longer lowers your blood sugar. This is right the majority of the time, but wrong for a small minority (Type 1 is much less common than Type 2, so figuring all first diagnosed as adults are Type 2 is usually correct, but not always).
One correct diagnostic is a proper glucose tolerance test: come in fasting, check blood sugar and insulin level, drink glucose, and check blood sugar and insulin levels after 1 and two hours. No insulin, Type 1 (sugar will always be high). High sugar and high insulin, Type 2.
Or c-peptide test. Plenty of c-peptide and high fasting blood sugar, Type 2. No c-peptide, Type 1 (and, with no c-peptide, fasting blood sugar will always be high).
Putting a T1 (or even a likely T1 not quite yet diagnosed) through a glucose tolerance test seems kind of medieval and cruel.
I say that having walked away (in my adulthood) from several endos who insisted that I had to have a GTT if they were going to treat me. Even though I had been taking insulin since I was a kid and spent weeks in hospital recovering from DKA at diagnosis.
If a person older than 30 walks into a new, primary care doctor’s office (always a good idea if one moves to a new location from which one’s previous physician’s office is too far away to be useful) and the new primary care doctor orders a fasting glucose (which should always the case) and that fasting blood glucose comes in at more than 7 mmol/l = 126 mmol/dl, the doctor will (correctly) diagnose diabetes. If this is a new diagnosis, one cannot know if one is Type 1 or Type 2, and many primary care physicians will (incorrectly) say one must be Type 2, since Type 1≡Juvenile is ‘always’ diagnosed before age 30.
For a person newly diagnosed after age 30, the glucose tolerance test (where they measure both insulin levels and blood sugar levels) is the standard way to correctly determine if one is Type 1 or Type 2 (as opposed to incorrectly figuring that all those first diagnosed after age 30 must be Type 2, as is far too often done).
If one is already correctly diagnosed as Type 1, a glucose tolerance test is a really dumb idea (sorry, it’s a great idea for the physician’s pocketbook, and which is more important, the patient or the physician’s pocketbook?).
Most of the times recently I’ve switched doctors they just believed me when I told them I was T1.
When I was 20-something it was a very different story and I think they usually saw me as an unshaven kid with long hair and ripped jeans looking for a doc to prescribe drugs.
Yes starting in the 90’s there was a heavy trend for docs to be less hands-on and talky than in previous decades, and more order-these-tests and then we’ll talk.
