Misdiagnosed as Type 2 am Type 1 diabetic

By Markus Latest Reply 2014-03-11 01:53:25 -0500
Started 2010-10-15 11:33:36 -0500

I'm just wondering if anyone else out there was diagnosed as type 2, only to find out much later (3 1/2 years in my case) that they were type 1? I switched specialists because I was too eratic with my BG control…too many lows and too many highs. I am 46, 6'1" tall and weigh 165 lbs. My new specialist on my first visit asked if I was ever tested for type 1. My results proved that I am type 1. Just a bit frustrated at how hard I've been working to get this under control and then find out that I was misdiagnosed.

15 replies

Trudie Ann
Trudie Ann 2014-03-11 01:53:25 -0500 Report

I don't think I was ever tested. I went to my MD because I felt bad all the time. He did some blood work and called me the next day to come back in. When I did he told me my blood sugar was so high it maxed out. He put me on metformin and diet change and it came back down. We moved to another small town and I found a MD in my ins. net work, but no specialist. I have highs and lows but they seem to balance themselves out on my check up tests. When I test high I bring it down with my meds. When I'm low I drink oj or chew a glucose tab. But as far as I know I was never tested as to which type I am.

Markus 2010-10-18 10:41:21 -0500 Report

Thanks to all for your feedback. The C-peptide levels is what confirmed that I am T1. My new specialist thought to test me after seeing that I was such good physical condition and yet sensitive to insulin. I had been on humalog 75/25 mix along with metformin. I had lots of low BG's along with lots of highs as well. My A1C has never been below 7.0 since I was first diagnosed with diabetes. I'm now taking Levemir (long acting) at bedtime and Novolog (fast acting) with each meal in an effort to more closely mimic what my body should be doing. I will soon be set up with an insulin pump and frankly cannot wait.

I don't mean to ramble. I just wanted folks to be aware that if things aren't going the way you think they should based on their efforts, to seek another opinion. If your doctor only spends 2 minutes with you each and every visit, is he/she really earning their pay? I think George Carlin said that somewhere out there is the worst doctor in the world…and 10 people have an appointment with him today! I used to think that was funny.

kdroberts 2010-10-20 09:58:12 -0500 Report

Interesting. A c-peptide on it's own is not usually a good test for type 1 since a type 2 with low/no insulin production would also have a low test result. It would seem likely though based on you being insulin sensitive and in shape so maybe that's how the doctor played it.

lm874972 2010-10-17 12:55:29 -0500 Report

Hi I am new to this, but I saw the posts about the misdiagnosing and had to post. I just found out I was diabetic about 2 months ago after getting checked at hospital and finding out my blood sugar was 650. I have asked about whether I was a 1 or 2 and was told it doesn't matter and there was no way to check. So what test is it that I should have them do to correctly identify.

GabbyPA 2010-10-18 09:35:34 -0500 Report

OMG...that is horrible! I hope you have gone to your doctor since and gotten a proper diagnosis. There is a HUGE difference in treatment and there IS a way to tell the difference with testing. Kdroberts has the tests listed below, take a look at those, write them down and take them to your doctor.

mo91108 2010-10-15 12:24:57 -0500 Report

Oh I had the same problem, but I found out about 3- 4 months later. I was diagnosed as T2 in the hospital, but I found out about T1 and had them run tests to see how much insulin my pancreas was producing. Came back as T1. It's super frustrating

CaliKo 2010-10-15 11:41:06 -0500 Report

Wow, that is frustrating, I'm sure. I'm definately T2, I respond so well to diet and exercise, but I'm curious — what test do they use to distinquish between T1 and T2 when its more difficult to tell?

kdroberts 2010-10-15 11:39:14 -0500 Report

It's actually quite common. They estimate that up to 20% of type 2's are mis-diagnosed and are actually type 1's. I was never formally diagnosed as type 2, although I was being treated as on, and it took a few years to be diagnosed as type 1.

GabbyPA 2010-10-16 12:42:17 -0500 Report

But if you are diagnosed as a type 2 and are a type 1, doesn't the issue with insulin become a huge factor? I could understand it for a short time, but for so many years? I thought that would kill an type 1?

kdroberts 2010-10-16 15:10:08 -0500 Report

Yes, if its a quick onset. It took a couple of years for me to need insulin but I still have a little production. It boils down to the lack of understanding of the disease.

GabbyPA 2010-10-18 09:37:39 -0500 Report

There is certainly a good share of that going around, unfortunately. Did you see lm874972's post? Oh my! And that was in a hospital...wow.