I was diagnosed as type 2 in April 2003 based on a fasting blood glucose of 124. My doctor gave me oral medications, one after the other for the next 3 months. When the oral meds did nothing to bring down my bg he questioned me “Are you sure you’re taking the oral meds I prescribed for you?” Then he put me on long lasting insulin once a day, which still did not help much. By then I was getting frustrated with myself for not being able to lower my bg readings. So I requested a referral to a Endocrinologist. My doctor’s response was…“Why… would you want to go there, he isn’t going to tell you anything that I can’t tell you?”
I blundered along for several years, all the while feeling lousy and also beginning to suffer nerve damage in my feet. I didn’t know at the time, the pain was called neuropathy. Finally I was feeling so bad and had lost a lot of weight, that I found a different doctor and again requested a referral to an Endocrinologist. That Endo ordered a whole bunch of blood tests, one of which was the c-peptide. The results came back that I was making next to no insulin. He immediately put me on rapid acting insulin plus changed the long lasting insulin to twice a day. I owe this man my life because he cared enough to order the proper lab tests.
It is hard to believe that over the years not one of the doctors I had could have seen the obvious clues. I had two children, one was 10# 4oz, the other was 9# 3oz…never was tested for gestational diabetes. When I was tested for hypothyroid, that too came back that I needed thyroid medication.
I don’t know what medical school is teaching their students, but hopefully some day the students will learn to think outside the box and not just make a diagnosis on age, appearance or what they think they learned in medical school. I live in IL near a very large metropolitan area and there are many good doctors in this area. My Endocrinologist is one of them
YOU can order the GAD65 test online…and go to a local lab corp to have your blood drawn and in 2 days have the results emailed to you. Cost me $98.00!! Well worth the money!!
Thanks, Kady. On my first visit back to Dr. S. after all of this drama, it was a little awkward. But, we both agreed to put it behind us, and now, we have a very good doctor/patient relationship.
It’s wonderful to finally get the right diagnosis, but I’d been “treated” as a type 1 for almost 10 years. It didn’t affect my treatment in any way, thank God! I really feel for those who spend years trying to figure out what’s wrong. Getting the right treatment is crucial!
Mayumi, I sure hope you at least told your original doctors how wrong they were and that their ignorance caused your complications! Especially the one who wouldn’t send you to an Endo!
It’s always been my feeling that no matter what disease and how much some docs don’t like it, that we must educate ourselves as much as possible. Yet, with LADA, back in 2003, I wonder whether most doctors would have known about it, let alone patients? Definitely less than know about it today!
Did your neuropathy improve once you were on the right medication and under better control? It does for some, not for others.
As Korinne says, on many diabetes forums you will get a response of “Type 2’s can be thin” if you say you don’t fit the profile for T2 but have been diagnosed as T2. In fact, thin T2s (insulin resistant) are quite rare; too often the “thin Type 2” is in fact a misdiagnosed Type 1. Just because a doctor gives a diagnosis of T2 does not mean it is a correct diagnosis, since blood glucose and HbA1c do not distinguish between T1 and T2.
Its sad and depressing that some just take what their doc says at face value…UGH…what if I did that…what if so many of us did that…where would we be in a year or 5…worse off, still struggling with our BS management!!! Thankfully, we have these informational forums to help us figure things out and try not to take some peoples comments too personally. I know at the beginning of my journey, on another forum I was hit hard by people’s comments, telling me I was a thin type 2 like their mother or aunt or whatever…very negative, not what I needed…but now I am able to be less emotional and I know that people are just passionate about their OWN diabetes…as we all are!!
Hi Kady: I have seen those “thin T2 like their mother” comments, and they are quite adament, and I reply back, “Did your mother have a definitive diagnosis?” Antibody testing is the gold standard for Type 1 autoimmune diabetes. Again, if a doctor gives a diagnosis of T2 based on a blood glucose value or HbA1c it is not a definitive diagnosis.
I’m not sure what my Dx is as I’ve never really been told what I am…
I’m 6-0 tall and only weight 148-150lbs… I’m a runner for 12 years and have always lived a healthy life but last September I was told my BG was “high”. I’m not taking any medication and my last a1c was 6.0. If I eat a piece of bread my numbers will soar to over 200 but some high carb foods are ok with me… Whenever I tell people I’m type 2 they always tell me “no way” your so thin…
I truly believe I’m LADA and I’m on my “honeymoon” so until my fasting (currently at 95) starts to rise there isn’t much I can do…
I’m so glad I found this site… Its helping me with this chapter in my life…
But on the other side of this issue is the concerns raised in the book “Diabetes Rising” and “The Autoimmune Epidemic,” namely that environmental factors, pollution, toxins and viruses are triggering rises in autoimmunity and type 1 diabetes in particular. There does seem to be some clear path where viruses trigger various autoimmune reactions as though the bodies immune system is initially set off and then goes haywire. And I really wonder whether there are toxins or other things which are triggering the rise in t1. I think it is good to have challenged your immune system so that it is prepared to fight against a broad range of attacks, but it is probably prudent to avoid long term elevated exposure to pollution, toxins, heavy metals, insecticides, poisons and all that stuff. I worry more about the water I drink and the food on my table and I try to tell my kids about those concerns.
I have often thought that antibiotics have played a role in the autoimmune response that leads to T1. Just a gut feeling as David was diagnosed about 40 days after a bout with a virus that had him on antibiotics at age 10, for the first time in his life.
Based on what I have read, I would tend to think that the bout with the virus is probably what triggered things. One study I found (http://cat.inist.fr/?aModele=afficheN&cpsidt=21501941), did not find a connection between antibiotics and t1. On the other side, there quite a few studies that seem to implicate virus’s triggering t1 (http://www.sciencedaily.com/releases/2009/03/090305141639.htm). Often the autoimmune attack follows being sick, sometimes months later.
At age 31, I moved myself from NYC to Seattle. I was always good about getting yearly check-ups. My first in Seattle was just a couple of months after that stressful move. I saw a general doctor, I have no recollection of how I found him. For the first time, my fasting glucose was high. The doctor called me with the news. I’ll never forget what he said to me: “You’re overweight, aren’t you?”, clearly assuming that I was Type 2. But I have never been overweight. I immediately sought out an endocrinologist, Dr. Peter Capell, who was wonderful. He quickly realized that I was not Type 2. It was clear I was still making some insulin but he put me on insulin.
I’m still not sure what my diagnosis is, but it certainly isn’t Type 2!
started off t2 with 2500mg of met f and 1 avandia and a1c of .12. went from 190lbs to 145lbs and had to ask to see an endo for a second opinion. fam doc said no need as he was an expert!! i was persistent and got to see the endo. 2 minute diagnosis of type 1 and on the pump now for 1 month. bg going the right way. seems to happen alot. my dad is t2 and sees the same doc, therefore like father like son.
As I understand it, there’s a “type 1” and a “type 2” hypothyroid disease in that 1 is an autoimmune disease, the other is not. “Type 1” hypothyroidism, which is called Hashimoto’s Thyroiditis, is a risk factor for developing Type 1 diabetes. I was diagnosed in reverse because I had diabetes before developed low thyroid. They tested me for the antibodies against my thyroid, and that’s how they discovered I was actually a Type 1 diabetic.
Hi Denise, See my note earlier in the discussion about hypothyroidism. Ask for a test for antibodies against your thyroid. Maybe they’ll believe you then.
Have you read the book “Diabetes Rising” by Dan Hurley? He discusses some promising studies about preventing Type 1 diabetes in children of high risk and extending the honeymoon. Taking vitamin D is one of the ways. I suggest you check it out. Dr. Bernstein’s book also has some ideas about extending the honeymoon.
I am new to all this but you sound like LADA to me. If you ever want confirmation…you can have your doctor order a GAD65 test or do it yourself. There are so many people with LADA…we really need to get the word out about it. I never even heard of it b4 Nov.09, neither did any of my friends and family!!!
My fasting BS rarely goes over 100 either…def. a sign of type 1’s. I bet you have great blood pressure and low triglycerides also!!!
It’s worth noting that there are other types of antibodies that indicate T1 (not just GAD), and many T1s are negative for one, but positive for another.
Also, with respect to a fasting BG always under 100 being an indicator of T1, the opposite is actually true. A T1 (who is not using insulin) will have significant rise in fasting BG. For example, I once (accidentally) dislodged my pump’s infusion set in the middle of the night. My BG before bed was under 100 mg/dl, but when I woke up, it was over 300 mg/dl. I ate nothing.
I believe LADAs still honeymooning will see better fasting numbers, but once those beta cells die, a fasting BG will be high without insulin.
