I am going back to the Dr. in 2 weeks and am going to ask if I have had c-peptide and antibody tests taken because I have an autoimmune thyroid disease (hashimotos) and have had multiple people ask me if I am sure I'm not Type 1.5 because I'm only 23 and because of how thin I am... but I also have strong family history of Type 2 diabetes (father and paternal grandmother) and I had gestational diabetes. I never even knew to ask what type of diabetes I had I just assumed type 2.
So just curious to find out other peoples experience. I am currently doing very well on strict diet no more than 90 carbs day and exercise. My A1C at diagnosis 7 months ago was 6.1.
If you are a type 1.5 how high was your A1C at diagnosis? And were you originally misdiagnosed as a type 2?
Hey LiL, Thanks for the post. You might want to read through all of the threads over at the LADA group here at TU.
This will give you a wonderful resource of information on various tests and treatments for LADA.
At your age and weight I would agree that you likely are. Good Luck
It is entirely appropriate to ask for tests to diagnose your condition. If you do have type 1.5, many believe that early insulin use can keep your remaining beta cells around longer. Thus, a proper diagnosis can have an important role in determining what treatment direction to take. A full antibody panel is the most effective tests for LADA. You can take a c-peptide, but often it is not conclusive and it will only suggest whether you are insulin deficient.
I had an A1c of 11.7 when I was first diagnosed as Type 2. It was likely because of my age then, 47, and I was underweight if anything. It took an endo to figure out I was Type 1 and it then took her a year to convince me to start insulin.
Well done on the A1C. Keep it down.
Thanks for the link. I’m just really confused because my A1C is so good and I can easily keep my blood sugar at 100- with my diet/exercise so I feel like it’s type 2. lol or maybe I really just do not want to ever be on insulin so I’m hoping I’m type 2. I’ve read a lot about thin type 2 diabetics though…
Your very welcome. At least 20% of T-2’s are misdiagnosed and actually have LADA. If you have a good Endo/Dr and get the full battery of tests this will help put your mind at ease as to what you are dealing with. In any event watch all of your numbers and test often. Just dont forget about it. You want to preserve your beta cells the best you can.
Melitta over in the LADA group is a wonderful resource and has a lot of knowledge on the subject. I would urge you to become a member over there.
Your on top of this, you should do fine.
Thanks! I know at my first endo appt. he checked to see how much insulin my body was producing and I’m guessing the test results came back good because he never mentioned anything to me just said keep up the good work no changes are necessary and my numbers just keep getting better.
For me the initial diagnosis was type 2. I had to ask for a meter after 6 months to start tracking bg. Then after a little over a month the nurse ordered blood tests and sent me to Urgent Care because I was so dehydrated and my meter had spent the past 2 weeks only reading High. She also started me on insulin that day and said she’d inform the doctor of her decision in the morning. The Urgent Care visit was 2 nights in a row for 4 hours each on IVs to rehydrate me and give me insulin and stabilize me. There was talk of admitting me to the hospital. A wrong diagnosis can be dangerous. I am type 1.5 and insulin dependent. At first it was 2 shots of Lantus a day and 4 or more shots of Novalog a day. Now I am on a Minimed pump.
My A1C at diagnosis was 14, and I had symptoms for at least a month before I went to the doctor to be tested for diabetes.
I was diagnosed as Type 2 with an A1c of 10.5. I was 26 at the time…thin before symptoms of diabetes and even thinner at diagnosis. Long story short, I pushed my primary care physician with my care and meds until my appointment with an endocrinologist at a diabetes center arrived. I was immediately given a diagnosis of T1 (probably because LADA is not a formal diagnosis…from what I have been reading here…correct me if I’m wrong). I was like you, had gestational diabetes, but I was given that diagnosis in my 6th week of pregnancy. Controlled my blood sugars with diet an exercise then.
Pauly is right in directing you to the LADA discussion. I just read that the other day and it really explained a lot about how what happened to me happened. I think just by reading it, it will prepare you if your body does progress and your pancreatic function decrease over time. Type 1 diabetes progresses slower in adults which often leads to misdiagnosis as Type 2.
It’s good you are getting the test and asking questions. You are your best advocate. BTW, there are A LOT of misdiagnosis stories at Tudiabetes. Here is one discussion thread.
Wow they caught your diabetes early in pregnancy… mine was caught in my 7th month during the glucose tolerance test and I was put on Metformin and just told that I could stop taking it the day I had my son bc I would no longer be diabetic…WRONG! I am wondering if I am type 2 though because almost all that I have read states that in type 1 or 1.5 your A1C will be very high. So are you now on pump or shots?? I’m so scared of the thought of insulin…yikes!
So before insulin did you take pills for the first year? How long have you now been on insulin?
I was originally misdiagnosed as T2. My first A1c was 6.8.
My diabetes was diagnosed in my pregnancy with my second son. I was 29. I had gestational with my first but was not followed up on. I was finally diagnosed with T1 when I developed Hashimoto’s. The two autoimmune diseases go hand in hand.
I think it’s important for you to press for an answer. And you should be proud of how well you’re managing your diabetes with diet and exercise!
I was diagnosed while pregnant as well… I was 20 and only 19 weeks along. They did a metabolic panel to watch for potential changes due to pre-eclampsia (I was having some weird BP problems) and to everyone’s surprise it showed a random BG of over 500.
They “told” me it was just gestational, and I didn’t believe it (nothing I could come up with ever described anyone with GD having a BG in the 500’s), then I was misdiagnosed as a T2 after delivery, and had to fight and change doctors to get the testing done to prove I was a T1. In my case my first doctor (an internist) kept pushing oral meds and did not seem to be concerned with my constant BG in the 300-400 range and would tell me I had to give the oral meds “time to work” (work on what, exactly?). I began self-medicating shortly after since I had been on insulin during my pregnancy, but it wasn’t until I made the decision to fire that first doctor that I started using more insulin on my own.
When I finally saw an endo they diagnosed me as a T1 on the spot, gave me scripts for better insulins (I had been using R and N since they were OTC) did the antibody testing to confirm it, and it was indeed quite positive.
I never had LADA, but since I didn’t present in DKA and there was no “crisis” associated with my diagnosis, everyone seemed to be quite confused as far as what to do with me.
My first A1C after being diagnosed with GD was 8.4 (keep in mind my BG’s indicated it should have been higher) and after pregnancy, without adequate insulin, it gradually climbed from the mid-6 range to 7.9 by the time I finally saw an endo about 5 months after delivery.
Insulin isn’t scary… the complications associated with running high BG’s are though… don’t be afraid of it if it’s what your body needs.
I was on pills. Metformin and other stuff, which I forget. I’ve been using insulin for about seven years now.
After a year of MDI I switched to the pump.
I am now on the pump. Just because you are able to be on metformin now doesn’t necessarily mean you aren’t T1. You need to get those antibody tests. You will know for sure and insulin would help you preserve your beta cell function longer. I am surprised that they put you on oral meeds while pregnant. I was under the impression that oral meeds passed through the placenta. That’s why when my blood sugars in the morning were a little higher they tried a little bit of insulin for a couple of days. I went low and they just rearranged what I should eat.
A1c that is higher doesn’t necessarily mean T1. Like I said, from what I read, the onset of T1 is slower. I am sure that if I had gotten the proper tests to begin with my A1c would have been lower. I believe that I was coming down with this shortly before my pregnancy. I was experiencing a little weightloss and feeling tired. Maybe my becoming pregnant and being put on a diet helped me stay healthy. I have written up my diagnosis story on my blog. It was a long complicated one. I am not trying to insist that you are T1, but the possibility that you are in the very early stages can fit your description.
I would really insist that your doctor run those tests. Are you going to an endocrinologist or a diabetes center? I really like the wholistic care that they provide.
I am not on Metformin, I was only on Metformin while pregnant…I was told the day I had my son not to take it any longer bc I was no longer diabetic. They found it 4 years later during a physical, my fasting bg was 126 and A1C 6.1=diabetes. I am in with a very good endo and I know that during my first initial visit he tested my antibodies and checked to see how much insulin my body was producing but never mentioned either result to me so I assumed I was type 2 because he told me to continue treatment with diet/exercise only. I will make sure to check out your blog, thanks for the feedback
Thanks for all the informative responses I can use as much information as I can get! I go to the Dr. next Thursday and will be asking him if he has an “official” diagnosis.
Oh. I must have misunderstood. If your doc ran all of those tests, they are doing the right things. My endo sends me a copy of my lab results. Great to look at my own numbers and to have when I go for my regular checkups with my general doctor.
I hope you get an answer to your diagnosis (T1 or T2). I know during pregnancy I just thought I had to make it to the birth of my daughter. Then when she was 1 1/2 I had to come to terms with being a new mom and having a disease that was here to stay. I am a stay at home mom and I have to be healthy to care for my children. It’s something we work at each day.
Hi Lil, in addition to testing for C-petides have your doc test for GAD antibodies. The depletiion of C-petides adn the depletion of GAD antibodies will let you know if it’s 1.5. I also have Hashimotos. But given yoru age, my question isn’t 1.5 vs. 2 but ratehr is it 1.5 or 1 (really no meaningful difference other than the age it hits).