Realizing how lucky I was. Diagnosed 26 years ago at age 43. Told immediately type 1.5. Have had arguments since then with other doctors that I didn’t know what I was talking about when I said I was type 1.5. Ended visit saying a raise by any other name is still a rose and either way I was still insulin dependent.
Thank goodness for my first doctor!!
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I too was misdiagnosed in 2009 by my pcp. He did order a C-peptide, which came back at 1.0 so he says “your a type 2”. I then started months of trying different pills with no good results. About a year into it, I asked for insulin but he would only give me Lantus, so my after meal bs’ were always high. It was in 2011, while in the hospital for afib, that my new cardiologist put me on Humalog to get my high sugar under control. When I was being discharged later that week, I again had to ask my pcp to keep me on Humalog. He didn’t want to but did right me a prescription. I eventually made an appt with an endo and never went back to that pcp. It still was another couple of appts before the endo checked my C-peptide, which by then was 0.4 and she told me I was a type 1. She ordered the antibody tests to confirm. That was 2015, so quite a few years to get the right diagnosis.
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It’s interesting hearing about all of these tests, but I don’t know what the tests results that are quoted here signify.
When I said a few days ago that I wasn’t tested for antibodies when I was diagnosed, it was because (as I understand it) they didn’t know about “juvenile diabetes” being an autoimmune disorder in 1986. As faras I know, they didn’t have antibody tests in 1986, at least not in relation to diabetes.
When I was diagnosed, I was told that “for some unknown reason” type 1 diabetes just happened, but that it was usually children that it happened to. My doctor was puzzled (I was 21 at the time) but as I clearly needed the insulin to survive (admitted to the hospital with BG 998), they diagnosed “juvenile, or type 1” diabetes.
BTW - This was also before the a1c test. But it would have been appalling, I’m sure.
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This is basically where I am. Autoantibody negative at diagnosis, but insulin sensitive, low fasting insulin and low normal c-peptide (not fasting). But my blood sugar was normal when they tested my fasting insulin and c-peptide so a I was told that doesn’t necessarily mean anything. I’m also thin, active, and eat healthy. Plus a family history of adult-onset T1 and T2.
My official diagnosis is T2 but we use what makes the most sense for me instead of some “standard” treatment, so at this point it’s not that important what the official diagnosis is. The biggest problem is getting insurance to cover stuff.
Doing what works is kind of how my doctor treats me. Sounds like you
could be right where I was about 8 years ago.
After I tested negative for the antibodies my big test was a regular
C-Peptide test. The whole purpose was nothing to do with treatment
but to qualify me for Medicare coverage with my insulin pump. I
learned a lot from the tests which were all done fasting with glucose
near 70. I found that my C-Peptide tracked exactly with my insulin
basal needs. If my dosages were high on the test day my C-Peptide
would be extra low. It took several years but eventually my pancreas
output dropped enough for Medicare. Soon as I adjusted to needing basal
bolus insulin I got my A1C down around 6.5% Then with CGMS and pump
I have been able to hold around 5.4 to 5.6%
My treatment has been relatively stable since diagnosis. Originally I
was on Metformin alone till I found it was clearly not working in a few
weeks, and that is why I went to an Endocrinologist. Then I was put
on Victoza too which I have stayed on till recently and now I use
Ozempic which seems to be the same thing except a shot is needed only
once a week. Then as I got worse year by year I just added more
insulin so now I am on the amounts the tables say I should need if I was
type 1 at my weight.
I was on Metformin for years till I had to stop due to stomach issues
getting worse. It was helping reduce my Liver storage of glucose but
I have to compensate now with the GLP1 and Insulin.
Having a tslilm X2 with basal IQ now has gone a long way to make me feel
almost normal again. I used to avoid exercise often because it would
make me wake up hypo at night. Now the Dexcom and pump can handle it.
I was diagnosed T2 at age 53 (25 years ago) and treated for several years with Metformin. However, when my A1c didn’t improve significantly my Endo started to add insulin to my treatment. When my c-peptide started to decline and settled in at 0.01, I needed to increase my insulin dose and eight years ago I started using a pump and CGMS.
When my doc recommended I stop using Metformin, My A1c started to rise significantly. Based on this, my Endo advised that the increase was evidence that I still suffered with insulin resistance. Apparently, I am a type 2 who also lacks insulin production. I guess I am aT2/LADA??
.
If you actually have insulin resistance, your insulin dosage needs would be higher than expected for a standard T1 with no insulin production or resistance. Compare your TDD with T1s of your weight and activity level, to determine whether you probably have insulin resistance. I presume you were never tested for antibodies, and it seems a little late to test now.
T1s also get better mileage by taking metformin. Metformin makes one more sensitive to insulin. But metformin restricts the liver from releasing glucagon. I feel that normal liver action is very important to keep one from harm from hypos.
You are probably a slow onset T1. The older one is when dx’d with LADA, the slower the onset. My speculation only… the body fights the onslaught on the beta cells for as long as it can. It is just when only about 10% of our beta cells are left that we begin to show symptoms… high blood glucose levels. That is also why LADAs are often still within the normal range when first tested. As time goes by, their c-peptide drops below the normal range.
I average 160 carbs a day and 68 units of insulin.
My story is similar to those already related.
I was initially diagnosed T2 at 35 but none of the T1 indicative tests were run. I “controlled” my BGs for ~10 years with diet but eventually had to go on meds.
First Metformin was tried, did nothing but make me sick, then Onglyza, also no effect but at least I wasn’t sick. Next was Victoza which helped for a few months but I was miserable, always nauseous and complete loss of appetite. By the time I finally stopped using ti I’d lost over 20lbs, horrible stuff.
This whole process lasted close to a year but my endo at the time (not the original doc) decided to test for antibodies and I came back positive for insulin allergy and was
re-diagnosed as LADA which opened up all sorts of possible options my insurance would cover.
I remember a c-peptide test coming back normal but my BGs were high at the time but aside from that I can’t remember other specific tests.
Anyway, I’ve been on a pump for the last 5 years, just got a Medtronic 670G. My A1Cs have been in the mid 6 range, I average less than 30 units of insulin a day and eat what I would describe as a relatively high carb diet (>100 grams a day).
I don’t know how things would have been much different had I been diagnosed LADA immediately as it took a long time for my A1C to creep up enough to do something about it.
I’m curious how my experience compares to others as my slide into insulin dependence took a long time.
Wheelman
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I was also misdiagnosed. Summer of 2003 was when it started. I caught my sugar when it first showed a fluctuation and waking at 115. That seems insignificant, but I had bought a meter because I could and decided to test about every 3 months in the morning. I had always been in the 100-105 range. I went to the doctor right away and told him I had had an uncle that had type 1 and something is going on. I was told don’t worry about it, it’s just a temporary thing. Even though my numbers were going up my A1C was still under 6, I was told not to worry.
Switch Doctors, closer group as now 3 years later I’m waking in the 200 range, I tell the new doctor again I had an uncle that had type 1, am I type 1? No type 2, They try me on different medications, they made me sick and worked some but not well. Started me on long acting insulin and then to an endo after a couple of years.
Again, am I type 1, I had an uncle etc…no you are type 2, lets try some of those medications again. Aaagh NO, refused to go back to him and switched my PCP to an internist, hoping they would at least know more than a general PCP.
I didn’t ask about being a type 1 anymore because now I had been told by 3 doctors, you’re not. The new doctor added fast acting insulin and I thrived so to speak, But my numbers would creep up sometimes because at work I would skip insulin thinking I am type 2, my body just has to deal with it.
A new endo was added to my group and my doctor sent me to her right away and she actually tested me for type 1 without me asking or saying a word about it. All the testing came back I was type 1. LADA.
I am happy about that because as a type 2, I wasn’t thriving. I swam 75 laps 5 days a week, ate well and I was losing a battle. As a type 1, I am thriving knowing I have to have insulin, all the time. I can deal with that because I know I have to now. My last A1C was 6.4. Thanks to a CGM and an insulin pump.
I believe because I was overweight, the doctors I had before just assumed it was type 2. Even with the relationship of my uncle, they ignored the possibility. That the first endo didn’t even test when I asked about that is scary, because how many has he ignored and people have gotten sick because of the wrong drugs being used on them and the lack of proper insulin usage. My original PCP actually told me the drugs wouldn’t work at all if I was type 1, so there is just a lot of ignorance out there and preconceived ideas.
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