Hello from a newbie and please read about my non-diagnosis... thanks :)

Hi all and thanks for the warm welcome. I would love your opinions on my story. I will try and give you the short version.
I was diagnosed 3 years ago at the age of 37 with Type 2. My grandmother had Type 2, diagnosed at age 60 and was overweight. My mother has lupus which is an autoimmune disorder. I was always very slim until I started having kids. I have still never been overweight although I have put on some pounds in the last year or two – I find I am always hungry now. I have what I consider a reasonable diet and exercise level. I had impaired glucose tolerance in all of my pregnancies, have 3 healthy children and had 3 late miscarriages (14-16 weeks).
After being diagnosed, I managed with diet and exercise for about a year. Well, not really, because my bgs got high and I probably should have started meds sooner. In the past year and a half I started Metformin, more metformin, added Diamicron, saw an endo, she denied any possibility of LADA, switched off Diamicron to Janumet, then dropped the Januvia but kept the Met to begin a clinical trial in Sept. ’10. A1C’s have been in the 7’s this whole time. Study drug has not helped.
By Nov., the endo added Diamicron 30 mg. I worked up my nerve and asked her again about LADA. She said she is 100% sure that I am Type 2 and my progression is normal for Type 2. I went over the possible markers for LADA – not overweight, family history of autoimmune, under 40 at onset. She just kept saying if I had type 1 I would need insulin. In early Dec., my bgs were still high and she upped the Diamicron to 60 mg, two weeks later still high, upped my Metformin to 2mg per day.
I went to my CDE this week and my last A1C was 8.8. He is recommending I stop the study drug and Diamicron and start on Lantus asap. I am so ready, I don’t even care about needles anymore and I used to faint practically at the thought! But after feeling crappy for 3 years, it’s time. I have an appt tomorrow with my family doctor to get the prescription.
It has been driving me bonkers that the endo will not test me for LADA. I can’t really put my finger on why it bothers me so much. I guess I just feel frustrated that I have tried to eat well and exercise and comply with the meds and still my bgs and A1C are so out of whack. I think 3 years is fast progression for someone with a reasonable healthy lifestyle. The CDE tried to reassure me that it doesn’t matter, I need insulin either way. But it matters to me! I realize you can’t diagnose me but…. I have diagnosed myself with LADA!!! I will still ask my family doc to order the tests. But in any case, I need to let this go and move on and the only way I can do that is to satisfy myself that a diagnosis of LADA makes more sense than Type 2.
I came on here because I thought some of you could probably relate to my story and maybe I won’t feel so alone and frustrated. If you made it this far, thanks for reading my about my diabetes journey so far!

Welcome Beachbum. I am new here too and just diagnosed last October. I went through pretty much the same process only for about the first 4-6 weeks. I am now on Lantus and Apidra. Like you the meds just did not move my readings much at all. I could never get below about 270. Now my morning readings run from 110 to 125. I am still trying to balance my food intake and insulin, but for the most part I am below 150 and feeling much better (still have a ways to go, but better). It amazes me how long some people have to wait for a valid diagnoses. I feel very lucky that my Dr. has listened and been willing to adjust my treatment.

Hang in there and pay attention to what your body is telling you. TUD is a wonderful place to get solid feedback and to learn what others have done. Like many others I would recommend getting the book “Think Like a Pancreas” to better understand what is going on for you. I’m only half way through it and already have learned so much (fun read too)

WOW!! I do identify, but it was endocrinologist that got me going in the direction I needed. My family doctor is the one who screwed me up. Continually increased my oral meds (metformin, actos, and two other I don’t even remember their names). My blood sugars as well as my cholestoral continued to rise. I am no where near overweight, but was eating a ‘diabetic diet’, exercised -aerobics and weight training - daily, but was no help. The meds he had me on were giving false reading on my kidneys - let me tell you, I was a mess. There is a STRONG history of diabetes in my family, both sides and I’m talking Type 1. My sister is considered a brittle diabetic and my father was on insulin as far back as I can remember. But my family doc insisted I was Type 2 and I needed to modify my diet and continue the meds as prescribed. He even accused me of not taking them. My endo was my savior. After taking an extensive history and doing tests, he weened me off the metformin and two others and put me on insulin. Brought my A1c down in the 7 range. It still bounces and sometimes I have a bit of trouble, but the way I feel is like the difference between daylight and dark. (and my renal tests are coming back to the normal range!!)
Don’t ‘ask’ your doctor to do tests. INSIST UPON IT or else find another doctor. There are so many good ones out there that will listen to their patients as they are the only ones that know what is going on with their own bodies. Hang in there. Things will get better~~

Thanks for the replies Randy and Becky. It is nice to know I’m not alone. (Although I wouldn’t wish this on you!) I will get that book, Randy. Thanks for the recommendation.
Update: I went to my family doc today who started me on insulin and ordered the tests for LADA! I feel like I’m finally getting somewhere. I should have just stuck with him in the first place. He actually listens to me.
P.S. I should have mentioned I live in Canada, in an area where we have a shortage of doctors.

Hi Beach Bum: Your story is similar to so many of us here on TuD, including TuD’s founder Manny Hernandez (who has LADA/Type 1 but was misdiagnosed as having Type 2). Sadly, it is really common. Take a look at my blogs about misdiagnosis, especially my “Manifesto for the Misdiagnosed.” There are several Canadians (Nel and Kelly) who also were misdiagnosed, and Kelly has been collecting stories of misdiagnosis, and Kelly has written letters to the Canadian Diabetes Association regarding the problem of misdiagnosis. Also, Zoe (here in California) is someone who was not on insulin for several years, she had LADA, and she has just started using an insulin pump!

I am really glad you are going on insulin and that the appropriate tests have been ordered. Hang out here at TuD and you’ll get lots of support. Ask us any questions that you need to ask.

Hi Beach Bum and welcome! You are definitely in the right place. As others have said before me, unfortunately ignorance and misdiagnosis is still running rampant in the medical community though I do hear inklings that it is getting better (some people are actually diagnosed LADA at the start!). Your endo’s response to your questions: “You can’t be type 1 because you would have to be on insulin” reveals that she doesn’t have a clue that LADA even exists! I actually saw an endo in Guatemala where I lived after I’d already figured out I was LADA. She was humble enough to admit she had never heard of it, but looked at my list of characteristics (lost 40 lbs at and after diagnosis, sensitive to insulin, low c-peptide, another autoimmune disease and only 15 months till I needed insulin) and said simply, “You are type 1”.

And yes, after a frantic search to figure out why my numbers were rising so soon and the oral meds were no longer working, and concluding myself that I was LADA it felt SOOOO good to hear those words. They were confirmation. I was right; I wasn’t crazy and it all made sense. It wasn’t until later that day that I thought, “I’m happy to be type 1, what am I nuts??!!”

The endo won’t test you for LADA because he’s never heard of it and he doesn’t want to either admit that or do the work needed to improve his knowledge base. Hopefully your regular doctor will be more humble. (My own doctor admits he doesn’t have any type 1 patients and I just tell him what to write and he does it). Starting on insulin is an adjustment in your life (you will probably find the actual injection a lot less scary than you thought - it hurts less than testing), but it sounds like you are very ready. I understand your frustration. It was almost exactly two years ago that I started my search to figure out what was going on and I still remember how overwhelmed I felt. Things will get better for you now. I’m glad you’re here.

Daria: I am sorry to tell you, but the tests may not come out conclusive. The Lada and type 1 autoimmune markers will only be present intermittently, when an actual assault is in progress on the pancreatic cells. Also, there is a form of "idiomatic Type 1… which means " don’t know why. For my, I have oversimplified that type2 is insulin resistant, and type one is insulin deficient. THAT IS AN OVERSIMPLIFICATION, but it helps me live my life. If it is any consolation, I recently had an endo tell me that I was Type 2, even though my correction factor is 1unit to 90- points, and I use @ 22 units/day, and I almost starved to death when on orals, because my c-peptide was never over 0.5… The CDE is partially correct, in that it doesn’t matter what you call it if you need insulin, either from overproduction of insulin in a long term type 2 literally wearing out the beta , or autoimmune attack of beta cells. it is even possible to be “lottery lucky” and have both type 1 and type 2 in the same body. HOWEVER, charting is everything, in terms of insurance payments and care. Remember also, that until the 1970’s type 1 was not recognized, and LADA has only recently been recognized and defined as a subset of the type1 class

Um… as far as I know, with GAD antibodies, which are the main ones for LADA, they will stay positive for a very long time.

As for , It certainly was recognised, it was just called “juvenile diabetes” and doctors certainly knew the difference between that and “mature onset diabetes” (Type 2). Names were changed because it was recognised that younger people got Type 2 and older people got Type 1.

LADA has been recognised since 1986, that’s 25 years!

Through your honeymoon period (while your beta cells are being destroyed), GAD antibodies will usually stay positive. I’ve read differing opinions on whether they stay positive through your life. At one stage I read that GAD antibodies were the most likely ones, of all diabetes antibodies, to stay positive through life, but an explanation wasn’t given and I can’t find where I read that.

It bothers me, reading this, that the idiot endo does not want to test you for LADA!! What the heck…why not?? What is there to lose!! She’s probably afraid to be proven wrong. You CAN demand to be tested!

LADA has been known about that long,but it still hasn’t been recognized by the ADA. The best a doctor can do is say “Type 1, slow onset”. This despite the fact that there are approximately 2 million people just in the U.S. with LADA, about double the number of people with “regular” Type 1.

beachbum5…how are you doing ??
From the CPG http://www.diabetes.ca/files/cpg2008/cpg-2008.pdf page S10 a note about LADA .Show this to your Endo !

Please visit also : Canadian Diabetes Association’s Easing the Burden of Diabetes THINKahead.Posted by nel on June 4, 2011 at 5:42pm in Canada Diabetes
…as a participant I did stress, that I was misdiagnosed in 1983 ( age 42 plus ) and received meds for almost 2 months , followed by insulin treatment .
I have been promised , that the 2013 Clinical Practice Guidelines will reflect the tests required .
Hope to see you around …also in the Canada Group ??

Hi all. Thanks so much for all the replies and support and understanding. So… it turns out I have Type 2. I had the testing done and it does not look like it is LADA after all. I am surprised but still just happy to have a diagnosis.

I understand you fully! I had the same type of problem with my medical team too until recently. I’ve had diabetes for around 4 years now and have only just got the confirmation that I have LADA/type 1.5. My doctor insisted it was type two and like you I was told that it didn’t make any difference if it was or wasn’t because both are treated with Insulin. However, it matters a lot. I have only just stopped taking metformin, because if you are type 1 or LADA and your pancreas isn’t making any insulin, then the pills are doing you no good. And if you do turn out to be a LADA or a type 1 you have to be more careful what and how you eat, how you exercise and how much insulin you need to take. The regime is totally different as a regular dose of insulin won’t work. Meal-time insulins have to be varied to your carbohydrate intake. Believe me, I would rather be a type II insulin user than a type 1… lol. It’s a real nightmare having to do so much carb counting… but “it is what it is,” so to say. My advice is to keep pushing for the test, wear them down. The sooner they get you on the right medication the less complications you are likely to suffer.

Just read your last post. Congratulations on getting your diagnose. Best wishes. xxx

Hi BeachBum: Good that you have gotten more information. Did you get the full suite of antibody tests (GAD, ICA, IA-2) + the c-peptide test? One of the Canadian LADAs, Kelly, was told that she didn’t have LADA, but she was actually GAD positive, slightly above range. She just had very slow onset LADA. As I said to her, you can be “a little bit autoimmune” just like you can be “a little bit pregnant!” So I would suggest reviewing your test results. Finally, what is truly important is getting the correct treatment, which, if you are insulin-deficient, is exogenous insulin. How is it going with the Lantus?

It took 4 years after I was erroniously diagnosed as a type 2 diabetic (at age 48), and visits to several different endocronologists before one finally listened to me and and my several notebooks full of notes on what and how much I was eating, how much exercise I was getting, what medications I was taking when, what my blood sugar was running........
Our family doctor had put me on long acting insulin which helped, but not enough. One of my biggest pet peeves is doctors (any kind of doctor) who won't truly listen to me. Unfortunately, in my experience, those are a very small minority.

Been there done that.....it took 5 years to change my diagnosis from Type 2 to Type 1. By that time me A1C was almost 9, and I was down to 118 lbs (I'm 5-8+). My doctor sent me to an endo, who immediately put me on 2 types of insulin and gave me both antibody tests, and I failed both miserably--or is that passing with flying colors? Now I'm on a pump(love it). Shots are no big deal--the needles we use are almost too small to see.
I would recommend Taking Control of your Diabetes, by Dr Edelman of TCOYD (and go to one of their programs if one is near you). The book will tell you everything you want to know about diabetes, and is a great reference. Also lots of new information at diatribe, and great recipes on Dlife and the magazine Diabetic Living--the pictures alone will make you hungry.

I just CANNOT understand why you are not allowed to be tested!! What does she have to gain or lose from this...while YOU have everything to gain. What has it to do with the endo anyway....this is YOUR body, YOUR decision and YOU have all the pointers indicating that the test is a valid choice. The doc says she's a 100% sure? Well...with what proof?
I feel it's time to take it up a notch....raise your voice. This all fall under the "God Syndrome" umbrella.

I am with Linda totally on this one. I wish I had a dollar for every tuD member who was told they had Type 2 and then turned out to be LADA after all. I could buy us all a nice no-carb . . . . something.

Anyway: you need a new endo. I don't care what the context is! A doctor who watches a patient's condition steadily worsen and says they know exactly "100%" what's wrong without doing the relevant tests is a doctor who is not doctoring.

As others have said, you are the one with skin in the game here -- no one else. You are doing exactly what you should be: demanding the diagnosis and the treatment that can save your life. Don't be deflected or diverted and don't take no for an answer. It's your health, not theirs.

P.S. And as important as it is to have the correct diagnosis, there's something infinitely more important. The bottom line here is not what pigeonhole you fit into or what label is attached to you. At the end of the day, what matters is having stable blood sugars. Whatever it takes to do that is what it takes. Insulin, pills, diet, whatever. That goal is what matters. Eyes on the prize!

- David