For those of you who love the diagnosis mysteries surrounding Diabetes, I am currently entangled in one. I was diagnosed 6 months ago. My a1c was 12%. The first nurse practitioner who saw me said, because of my age (25), I was likely Type 2. The next day, the doctor came in and said I was Type 1. Since then, I've been taking 13 units of Levemir at night and Novolog with meals. At my endo visit in June, I asked the endo to take a C-Peptide test so I could see how much insulin my pancreas was still producing. On a 0-4.4 scale, I was 2.2, which was in the "normal" range. Taking insulin therapy as though I am Type 1 has been helpful. My most recent a1c was 6.2%. When I visited my endo on Wednesday, he told me he wanted to try oral medication instead of Novolog. So, now, I am on Jentadueto. I'm not sure how long oral medications take to have an effect on your Diabetes, but I am trying to be patient with it. So, at this point, I have no idea if I am a Type 1 on the world's nicest honeymoon or a Type 2 with a less than stellar pancreas. I somewhat feel like I am waiting for the bottom to fall out.
Has anyone else had a switched diagnosis? Or been in the diabetic twilight zone?
Any advice would be great! I am new to diabetes and new to the forums.
Your c-peptide is a bit high for a Type 1, but it is not the definitive test. If you really want to know you should get an antibody panel done.
I'm kind of in the "if it's not broken, don't fix it" camp, and you did wonderfully on your insulin dose. Saying that you are type 2 because you are 25 is absurd I was diagnosed at age 58 and I'm type 1. My suggestion is to get antibody testing, and not wait terribly long if the oral meds are causing your blood sugars to go back up. A couple other questions: You said you took 13 units of Levemir which is a more common type 1 dose, not a type 2 dose. what was your I:C ratio for your Novolog? Are you a good BMI? (You look to be from your pic). Do you have any other autoimmune conditions like thyroid or does anyone in your family? these are all indicators of type 1 but the antibody test is the definitive one. If you are type 1 you want to be on insulin, whether you are in a honeymoon or not.
I range between 13 and 10 units of Levemir because I wake up in the mornings in the 60s a lot. I took 1 unit of Novolog per 15 carbs, except with breakfast. I require more insulin with breakfast. I am a "normal" BMI. I am 5'1" and 117 lbs. at diagnosis. I have gained about 8 lbs. on insulin therapy (not fun). I have no family history of autoimmune disease nor do I suffer from any other conditions.
The interesting thing is that I ate lunch an hour ago. My Dexcom shows my blood sugar has gotten as high as 133 an hour after lunch. The pills seem to be doing something. All night long, I was between 88-70.
Unless you've been having a lot of troubles with lows why go off a therapy that has been working well? Zoe is right - you need an antibody test. Your doc shouldn't be guessing at your diagnosis.
A c-peptide is really not the best determination of whether you are a type 1 or have insufficient insulin production. As other have mentioned, the antibody test is really the best way to definitively show what type you are. Give the circumstances, it seems likely you are T1 and that you are in a honeymoon. It is true, oral medications can work when you are in a honeymoon, but they may not be the best. I firmly believe when you have T1 your pancreas still works "somewhat." And that somewhat makes all the difference between an "extended honeymoon" and easy long term control. But keeping your pancreas working means avoiding high blood sugars (some think high is > 140 mg/dl). If an oral medication works, great. But if you are struggling for blood sugar control than that can lead to bad outcomes.
From your blog, it seems your doctor asked if "you were willing" to do oral meds. It is ok to take ownership of these decisions. This is "your" diabetes. If you are happy with injections, stay with them. Tell your doctor what you want and why and chances are they will work with you.
My blood sugar has been running on the low side today. I just hung out at 70 for an hour. I thought I'd be more concerned with hyperglycemia coming off of this Novolog.
I'm in a diabetic twilight zone, too. I've just been diagnosed a month ago. High FBG, high anti-GAD, undetectable c-peptide. That said, my BG isn't so high that the endocrinologist has put me on insulin yet, and I just got my first A1c and it was 5.something. I'm checking BG twice daily, and the endo seems very surprised that my BG hasn't started creeping up yet. So for the time being I'm just living more or less as normal (my diet and activity levels were already pretty good), and waiting...
I'm stuck in the twilight zone too - and actually have been for years. I was diagnosed as diabetic about 5 years ago, then went to an endo who did all the tests and told me that I'm not diabetic. Ha ha. I went to the doc for flu a couple of weeks ago and mentioned how I've been feeling really tired and sleeping a lot and he did blood tests, which revealed that I'm diabetic. My doc is more interested in treating it effectively than labelling it, which I find frustrating because when I'm worried I tend to be a control freak. He told me I definitely don't need insulin, but that I'm not really a Type 2 either. I keep trying to remind myself that this is a marathon and not a sprint, and the long-term BS results are what really count not the diagnosis.
The main determinant of your type is whether or not you are positive for antibodies. These are present in Type 1 and they mean that your immune system is attacking your pancreas. Although even these can be a bit shaky in the honeymoon phase....
Just thought I would jump in and give you my experience. I am 5'7 and 112 pounds tested negative for antibodies and my insulin levels are high. I am a thin type 2 I have tried metformin and didnt see any difference with my bgl now im on onglyza and still not much better with bgl. Its frusterating trying to find what works. Do get tested for antibodies that makes a big difference in the meds you take and what will work. Best of Luck!
Hi Jordan: Since you bring up the mystery, I offer up my "we need a detective in the house" blog. The NP saying that because you are 25 years old means you are Type 2 is patently absurd; Type 1 is far more likely at that age (and Type 1s should be on insulin, not experimenting with a drug (Jentadueto) that is for people with Type 2 diabetes). My diagnosis was switched from Type 2 to Type 1: I was misdiagnosed because of my age (35) not my etiology (I was hospitalized in DKA). There are LOTS of us here on TuD with "switched" diagnoses: Manny Hernandez, founder of TuDiabetes, was misdiagnosed as having Type 2 when he has Type 1. I would suggest being your own best advocate! Let us know how it all goes.
I was considering in making a similar thread. I am on that same boat as you. I was diagnose with diabetes at 10 and six months later I was in an Honeymoon that lasted up until I was 22.
The thing is that during this so called honeymoon period I was never order to do a A1C. Only after I went to a thorough eye exam in which my eye doctor asked what meds I had been taking because they were not working at all. During that honeymoon period in the last 6 years of that I was taking glucophage or metmorfin.None of those work because I was constantly panic by checking my glucose. Sure back then I was informed that going to insulin was bad so I used to lie a lot to my doctor about my glucose monitoring results in order to avoid going back to insulin. I was surrounded by type 2 diabetics so everyone treated me as such and the misinformation back then was reigning a lot. Now after 6 years of going back to insulin I have managed to have my A1C levels between 6.1 to 7. I am currently taking 40 of lantus because of my hyperthyroid and the way is screwing up my metabolism. But before being diagnose with this new condition I used to take 15 to 20 units of lantus.
The thing that bothers me the most is that the doctor that I used to have before did not tried any other method of treating my diabetes so I really do not know if I would had work with the pill. At least I know that I am doing wonderfully with the insulin which is the only med that I am taking right now. Still my current doctor goes with me back and forth with the diabetes type. Is really annoying. I understand what you go through. It angers me that I need to have a referral to see an endo and that comes rarely, so I am looking forward to the end of this month to bombard my endo with my current doubts with my type as well with my new diagnosis with hyperthyroidism.I just wish I did not had another condition so he would not be overwhelmed by my questions of both conditions.
I need to correct the dosage is actually 30 not 40. Most of the doctors I know are more concern in treating it than actually knowing the actual type. In fact most of them if you are an adult and obese they will diagnose with type 2. While if you are a teen and obese they will label you as type 1. The funny thing is that when I was diagnosed with diabetes at age 10 I was morbidly obese then before diagnosis and treatment I lost a tremendous amount of weight. I don't recall if I ever had a ketatone panel done back then but I sure remember my dad being pretty frustrated that my diabetes was not getting control at the hospital, him being a type 2 diabetic. The same occurred when I was put back to insulin. As of today I still fluctuate weight ranges but never going back near the weight I was before going back to insulin or when I was diagnose with diabetes. I am the first person in my family to be diagnose with diabetes in her younger days. So I at times feel weird when they are talking to me on how irresponsible I am for letting myself going back to insulin and not managing my glucose with metmorfin or had attempted other types of pills. Now I have made my peace with the insulin over come the fear of the syringe and continue on with my treatment with it.
Your "Bete's" could go ether way and there are also a few more reasons that could cause your body to not produce enough insulin or regulate BG. I was diagnosed a T2 and placed on oral meds, they failed to control my BG and I was placed on insulin after becoming very ill. I was tested for antibody's about five years later and was positive but only a small amount. Now many years later I'm insulin resistant but have less than >.05 c-pep, my BMI is normal or low and I no longer test positive for GAD65. My brother has always been skinny and uses pills pulse about 15u of insulin every day...his c-pep is in normal range, has never tested positive for antibodys and high blood sugar does not cause him to produce dangerous amounts of ketones like me. Although we have the same build and appearance our diabetes manifested itself in a diffrent ways. I'm completely insulin dependent and he can skip his insulin injections without any immediate life threatening results.
I'm there right now jholt87. After coming close to having a Diabetic Coma, I've been med free for two weeks now. Yes, like you, I've been waiting around for some thing to happen, half hoping to return to the familiar (20 units of Levemir and 2x1000mg Metformin), hoping this is real and this thing may be over, and more confused than anything else.
I've played out everything I can think of in my mind. Was I really a Type 2 Diabetic, or was I just insulin resistant because of my weight (IRS)? Am I honeymooning? The list goes on and on.
I'm finally at the point where what is.. is. If this a honeymoon, great. If it I end up back on Metformin, fine. Going back to Levemir isn't the end of my world as I know it. Given how they just figured out LADA, it would not surprise me if IRS is misdiagnosed as Type 2 Diabetes. They have come a long way in understanding what is going on, but do not know or understand EVERYTHING yet - probably not even close.
I have a good relationship with my doctor. I play hockey with the guy, so if he ticks me off I can flatten him on the ice *snicker*. I know no one has all of the answers, so all I can do is test. That's where I am with all of this... whatever it is. Worrying about it does me no good. Trying to figure it all out doesn't do anything for me either. If my readings go back up, I'll make a phone call or tell my doctor while we are on the ice. I'm just trying to sit back, enjoy the ride, and test.
Get a correct diagnosis: many if not most people with adult-onset Type 1 diabetes are misdiagnosed as having Type 2 diabetes. It is important to get a correct diagnosis to get the correct treatment (exogenous insulin); being treated as if you have Type 2 diabetes may be extremely harmful. Get the full suite of antibody testing (Glutamic Acid Decarboxylase Autoantibodies (GADA), Islet Cell Cytoplasmic Autoantibodies (ICA), Insulinoma-Associated-2 Autoantibodies (IA-2A), and Insulin Autoantibodies (IAA, Footnote 2). Don’t just get GADA, because many people with adult-onset Type 1 diabetes are only ICA positive. Antibody testing is the gold standard test for Type 1 autoimmune diabetes: if you are antibody positive, you have Type 1 autoimmune diabetes. The suite of antibody testing, full price, costs $471. The c-peptide test, which shows how much insulin you are producing (virtually all children and adults with new-onset Type 1 diabetes are still producing some endogenous insulin), is useful, but does not provide a definitive diagnosis.
I do not bet but in your case I would put my money on T1 as the correct diagnosis. We have seen multiple cases with unusual honeymoon periods. At the end this is just a race between the immune system and the regrowth of the beta cells. From the work of Denise Faustman we know that most long term T1 diabetics have preserved small amounts of beta cells. This has been found by detecting small traces of c-peptide in nearly all T1 patients. Thus I would conclude that the immune system does not try with all force to kill the beta cells. Only some rogue beta cells sporadically do. In your case they stopped their attacks for a while. With residual beta cells of around 40% of the original number it is still possible to have a good A1c. But the elevated production rate will put stress on the beta cells hindering them to regrow. Exogenous insulin will help to reduce this stress and regrowth is the result as you have experienced. The big unknown is the reaction of your immune system in the next months (if T1/LADA is the correct diagnosis).
Someone who has an A1c of 12.7, as jholt had, and who is antibody positive, has Type 1 diabetes and is most certainly not a non-diabetic. If a person is diagnosed as having diabetes with a fasting BG of greater than or equal to 125 mg/dl, and the person is antibody positive, the person has Type 1 autoimmune diabetes. I have read a lot of studies about Type 1 diabetes, and have never seen the stat of 8% of non-diabetics are GADA positive. I don't think you have your facts right; if you think you are correct, cite a study in a respected journal. No study has ever followed GADA positive people without diabetes for any length of time--people can get Type 1 diabetes into their 80s and 90s.
Perhaps in combination with the full set of tests it can be useful. If all the tests came back negative but the GAD+ is positive this is inconclusive. But one positive test plus GAD positive might reveal a better insight. Of course it depends. Perhaps it is recommendable to do the other tests first.
There is no mention of the "8% of non-diabetic individuals are GAD positive" on page 511. Again, jholt (the OP) has been diagnosed as having diabetes, is antibody positive, and by the definition of the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus has Type 1 autoimmune diabetes.
