Suspect that I'm LADA...endo does not!

Hello, I am new and could use some advice! I was diagnosed with T2 a year ago following gestational diabetes. My A1C was 6.0 but GTT numbers were sky-high. A complete change of diet, adding high intensity exercise and dropping my BMI down to 19 resulted in…A1C of 6.0, followed by 6.1. Endo would like me at 5.7 maximum, for the long term benefits (I am in my 30’s) and added Januvia three months ago, which I was very reluctant to take (I am wary of long term effects). Have not had my latest A1C yet, but I have not seen any change in my meter levels since going on Januvia (numbers are actually creeping higher). Now I have reduced my carb intake to 15g of low glycemic carbs per meal but my post-prandial numbers are still in the 9’s (around 170). I see my endo in 2 weeks but emailed him with my concerns that Januvia isn’t working. He responded that it was, it’s just that it’s unable to keep up with my rising levels, and he would add on another medication. (Aargh!)

My question is: is it indicative of LADA that my levels are rising so quickly and/or seem not to respond to exercise, low carb diet or Januvia?

Also, I have read that LADAs should go on insulin ASAP after diagnosis but my doc just wants to try more meds. Of course, I don’t have a LADA diagnosis yet, but my endo seems to think I am not.

Do I go along with him…or look for a 2nd opinion? Thanks for your suggestions. I am new to all of this and very concerned and anxious about managing it properly. I have read that levels over 140 or 150 kill of beta cells, and that means I’m losing a whole bunch of them every time I eat!

This sounds extremely similar to my situation before final lada diagnosis and insulin started. The silly thing was that the reason they wouldn’t look into it further for 2 years was because the aerobic and anaerobic exercise I was doing and mid to low carb diet was keeping my HBA1C within reasonable (good ) levels although I was feeling incredibly tired the docs just seemed to accept that was OK. Sorry I dont have anything more productive to say to you.

I had gestational diabetes with my 1st daughter @ 18y/o. Then was diagnosed pre-diabetes when I was 23, then at 27 I was diagnosed with T2. I got pregnant with my 2nd daughter when I was 32, and had to take insulin during that time because I didn’t have enough insulin for me and her. When I had her my endo. took me off everything. When she was 5-6 months old I got so sick I had to go in the hospital. We couldn’t understand why my B.S. levels were so up and down. My endo. then tested and said my beta cell were no longer working. I got on the pump at that time and have loved being on it because I don’t have to “feed” my insulin. I live a almost normal life, that consists of a low-carb, low-fat, 1200cal. diet. A lot of T1 LADA diabetics are mistaken for T2 diabetics. There are a few tests any good endocrinologist will do to be sure! Why would any doctor not test? You are 90% responsible for you health and your family dr, endo., & dietitian are there to help out and control 10% of what is done. Know all you can about your condition, and know all you can about T1 LADA diabetes. Write down your questions and submit them to the dr. before the appointment, so he can know the answers to them before hand. If you still feel he is not doing all he can then you may want to look for a endo. who specializes in LADA diabetes. I guess it is all determined by how aggressive you want to be. Some docs may not know enough about LADA diabetes to help you much, but as with my endo. I took her all the info. on LADA diabetes I could find, and challenged her to learn more and help me. I am 37 y/o, and I have tight control now (A1c 5.5) and feel great! I have heard of some LADA diabetics that didn’t have to go on insulin right away because their pancreas was still able to use their beta cells. One friend of mine went 3 years before insulin! Now that I have been on insulin for a while I am not afraid of it anymore! I figure if my body is not producing something I have to replace that with something! There is a sigma against taking insulin, why? Fear. If a person needs a pace maker, or medicine to make their heart work right, nobody looks at it like that person is wrong to take that medicine. But to some, being on insulin is a sign of weakness, why? Because there have been a lot of drs. who say the diabetes can be controlled on diet and exercise. To an extent that is true in some T2 diabetics. But no one ever talks about the fact that T1s have to have insulin because their body does not make it! So, just KNOW what you want and go for it! Make sure to place people (drs. included) that will do everything to help you succeed!

Please, please, please don’t be afraid of getting a second or even a third opinion. A family practice MD, actually diagnosed mine by doing a C-peptide test. Two of my brothers are currently diagnosed as T2, neither of their doctors will run the test. You have to take control of your situation and insist on the best care you can get. I personally feel that some doctors see a type 2 diabetic as steady income and not really interested in taking the time to delve into a more comprehensive diagnosis.

From what you’ve written, I think your suspicion is correct. I went through a similar diagnosis journey (as have many others on this site).

Ask your doctor to do an antibody panel (GAD, ICA, IAA) and a c-peptide. I would recommend that you do NOT have this labwork done while fasting. My current endo told me to eat a candy bar before a c-peptide test to show what your insulin production is in a high blood glucose environment.

If your doctor refuses to run these tests, get a 2nd opinion ASAP.

P.S. High BG levels do not kill beta cells, but they can cause lots of other complications.

I can only echo what others have said. I went through similar experience last year and I too wondered why there was no improvement in my A1c after giving birth, reducing carbs, losing weight, and ramping up exercise. You can confirm with the T2s, but it’s my understanding that medications like Januvia are effective and those who take it show improvement quickly. Ask your pharmacist how long it should take before you see results.

It sounds like your doctor is operating under the assumption that you must be T2 because your numbers are mild. Many, many of us on TU are living proof that not all T1s present with high numbers. I don’t think you should “go along” with anything you’re uncomfortable with. Your doctor can run tests to rule out T1/LADA such as the GAD antibody test.

I would also keep a diary of your carb intake and exercise regime in relation to your numbers. I think if you present this information to him in this way, he will take note. If he doesn’t, then it’s time to find a new doc.

Hi Ligetia: You have gotten some good advice from some very caring people here. If your BMI is 19, you likely are Type1/LADA (remember that LADA is just Type 1 autoimmune diabetes at a later age with slower onset). It is actually very important for ALL people with Type 1 (including LADA) to initiate intensive insulin therapy as soon as possible after diagnosis, to preserve your remaining beta cells. Take a look at the blogs I have written, including the one on autoimmune gestational diabetes. A recent article in the July 2007 issue of “Diabetes Care” indicated that autoimmune gestational diabetes (new onset Type 1 diabetes) accounts for about 10 percent of all Caucasian women diagnosed with gestational diabetes.

You need to be your own best advocate, so don’t take “no” for an answer. Medications for people with Type 2 are harmful for LADAs–many hasten the destruction of beta cells.

Shannon is correct, you need a full antibody panel and c-peptide testing for a correct diagnosis. If you are antibody positive you have Type 1 autoimmune diabetes.

Best of luck to you, Melitta

Thank you all so much for your feedback and excellent advice. I hope my endo is open to ordering the antibody and c-peptide tests, and if not I’ll see someone else. Perhaps with my dietary and exercise logs will convince him. In the meantime, since Januvia has never changed my levels, and because there is so much bad press about it, do you think it is safe to ‘experiment’ by not taking it for a few days and seeing if numbers go up or stay the same? Does anyone know if the difference (if any) would be immediate, or would I need to stay off for a few days or more?

I’m a LADA and was diagnosed in my 40’s through use of a c-peptide and GAD65 test. These are blood tests that are easily performed. I do not know what my BMI was at diagnosis, though it was low. I was still managing to jog 20 miles a week, though I had been complaining for years prior about when jogging it felt like it was pushing a rusty wagon! Insulin saved me. Get the blood work.

Hi! My situation was similar in the respect that I was diagnosed as a T2 at first. Luckily, I ended up pregnant within 2 1/2 months and had to go on insulin. I had about 3 months worth of a honeymoon after my daughter was born, then there was no question that I was a T1. I have been a diabetic for 23 years and just went on a pump earlier this week. It is absolutely incredible! I wish you luck and make sure you stand up for what you believe! Who knows your body better than you do…

I agree, Get a second opinion! You know your body, not your Endo. If Januvia and diet aren’t working its likely LADA.
Get the tests

Have a test done for GAD antibodies and c-peptides. The presence of GAD antibodies and a very low C-peptide (less than 0.5) indicate LADA. Type 2 will not have the antibodies and typically have elevated c-peptide ( above 2.0). This is the only way to know for sure.