On 9/19/03 during a screening for antibodies I was found positive for ICA. At that time C-peptide was 1.5(f) (no reference range listed), Glucose 104(f), and A1c 5.3. I received this information in the mail, with no follow-up to explain the meaning of any of this information. I filed the paperwork away. About a year ago I discovered the finding again and re-evaluated the meaning of this. For a number of years I have been seen at an autoimmune clinic and they would say I have an unknown autoimmune disease. Over the years, from trial and error I knew that when I ate carbs I might as well just lay down and go to sleep. I do exercise regularly, although to a lesser degree as time goes by. I have managed to run a few marathons over the last couple of years though, just slower, with weird side effects/symptoms. I also spent 6 weeks trekking into Everest Basecamp and around the area awhile back.
I am now seeing an endocrinologist and my recent results are: C-peptide 2.2 (ref range 1.1 - 4.4); Fasting Glucose 143; and A1c 5.9. when I check my blood in the morning it is anywhere from 142 to as high as 187.
Prognosis, opinions, how am I doing? Time to get serious. I am 48 years young at this point.
Hi RS: A fasting glucose greater than 125 mg/dl means diabetes. A positive autoantibody test means Type 1 autoimmune diabetes. Has your endo suggested exogenous insulin? I would definitely suggest asking him/her. Here is a link to my top ten tips for the newly diagnosed person with adult-onset Type 1 diabetes that I hope you find useful. Welcome!
You've got the antibodies, and there are some diabetes type things going on, but your C-peptide is still on the low end of the normal range. My guess is that you are LADA (slow onset T1) and should start taking insulin before you have some major life threatening event, but you might be able to get by with 1-2 shots a day of slow acting insulin for a long time. Also, I'd probably want to get another A1C test to confirm that it is at or around 5.9.
When you do eat a lot of carbs what does the BG curve look like? How high do you go and how long until you get back under 100? Have they done that test with you. If you've already cut your carb intake and your A1C is 5.9, that's not within the non-diabetic range IMHO. Also have you had the other autoimmune tests or just the one?
Anyway, if you are LADA T1, the concerns for me would be... 1. trying to keep your body's remaining beta cells from burning out
2. making sure you don't go DKA when/if your body stops producing insulin
3. keeping your BG numbers as close to normal as reasonable to avoid damage
I think starting insulin would be the best way to address these.
Well your fasting levels are higher than they should be. I personally don’t buy into the theory that having any antibody markers automatically makes it a slam dunk that you have type 1 diabetes. Many people go through their whole life with antibodies and never get diabetes— stands to reason then that someone could just as easily be antibody positive and have type 2. Your c peptide being normal even with elevated levels of glucose in your blood is a little bit and perplexing, just as it is in my own case. A typical type 2 would show higher CP levels I would think, at least initially, and a typical t1 would have low levels.
Thanks for the responses. My endo wants to see how things go for the next 6 months. He wants me to really watch my diet and exercise over the next 6 months. In reality, I have been an avid exerciser all my life. I run 3-4 days a week, have ran my share of marathons, and have climbed many of the bigger mountains all over North and South America. I really do not think I can do much more in the exercise area, unless it is changing the amount and times I exercise. Food wise, I can definitely change those habits a bit more if that is what it takes. I was diagnosed as type II about 15 years ago due to having some high readings, although very sporadic. Back then my fasting glucose was in the 80's. Over the years I began having neuropathy in my hands and feet. The docs then thought it might be from long term elevated glucose, although not real high. Approximately 10 years ago I had acute renal failure while mountain climbing which took me 2 days to get out and hospitalized. I have low B12 (take injections) and D (supplements). I would get really debilitating cramps while exercising prior to the B12 injections. I believe that B12 deficiency leaches potassium from the system which results in the severe cramping.
The lab results I posted above were from 12/27/13. Prior to that, on 5/3/13 my A1c was also 5.9; fasting glucose was 133; c-peptide was 2 (ref range 1.1 -4.4). At that point I was in the middle of some really hard marathon training (2 marathons about 7 months apart). I was also really tracking my food, as in weighing and tracking it all. What a pain, but if that is my life, then that is the way it will be. I have been doing the same for the last few weeks again.
At the time of my initial test I was negative for the other Antibodies. How would I go about getting a good BG curve? How and when should I check to get the info?
Of interest is your footnote in your link to your top ten tips. Footnote 1: Jerry Palmer MD in Type 1 Diabetes in Adults: Principles and Practice (Informa Healthcare, 2008), page 27.
Jerry Palmer was the principal Investigator in the study that identified me as positive for ICA's in 2003. I recently contacted the study and have been participating in it for the past few months, and am scheduled for another blood draw within the week.
I've got B12 and D deficiency also. The B12 might have been temporary and metformin induced.
What is your current diet like? Regular sodas, chips, popcorn, bread OR eggs, salad, meats, etc? Are you already fairly low carb and trying to go further. I think if you are already eating around 100-150g of carbs a day and exercising, there isn't a point to doing more.
Also, the sheer amount of exercise you are doing might be masking how far your diabetes has progressed. If you were T2, the exercise would probably compensate for the typical insulin resistance, and I'm guessing you don't have a lot of fat in your midsection. So if you were T2, it might actually be pretty far along.
My guess is T1, but I'm not a doctor or medical professional. The thing for me is that if you are T1, you NEED insulin, and honestly I don't feel that an insulin regimen is a bad way to go for T2s. A T1 without insulin is probably going to be pretty miserably sick for a long time and then if untreated, you can end up DKA.
By curve, I was just thinking of some idea it takes for your body to respond to about 40g of carbs. For example, if you drank a 12 oz soda (regular sugar) on a fairly empty stomach, would you be back around 100 after a couple hours? Just the typical sugar tests they sometimes give.
I have never taken any meds for my diabetes. I have been trying diet and exercise. I am probably just in denial and should take meds. I have been miserably sick for the past 7 years. My diet is fairly good. No sodas, chips, or bread. Lots of eggs, meat, vegis, etc. I have the occasion where I will eat a piece of cake, but I pay the price dearly when I do. My daily carbs are below 150, often around 100 or so. I am actually spent most of the time, as in drained. When I do measure my food, I feel like a completely different person. Before the B12 shots I was really drained, but since taking it I have rebounded to the point where I have been able to do a few marathons again. I only exercise when I feel like it, so I do not keep a specific training schedule because of how I feel most of the time.
I really would like to know if insulin would help? I would love to feel good instead of just getting by all the time. I am trying to figure out if I should just tell my endo to just start me on insulin and stop just trying to treat it with diet and exercise. He says he does not like to use meds if we can control it without.
If a person is diagnosed with diabetes (FBG greater than 125 mg/dl) and the person is autoantibody positive, the person has Type 1 autoimmune diabetes by definition. The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (ADA/WHO), as published in ADA journals, says, "Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur." Michael J. Haller MD, in Type 1 Diabetes Sourcebook (ADA/JDRF, 2013), says “We consider all patients with evidence of autoimmunity to have T1D” (page 5). Lou Philipson MD, Director of the University of Chicago Kovler Diabetes Center, says “Most but not all patients with type 1 will be positive for auto-antibodies against proteins of the beta cell. Typically we test for anti-GAD65, anti-IA2, anti-insulin, anti-ICA, and/or antiZnT8 antibodies. A positive test in any one of these is consistent with autoimmune type 1 diabetes, and insulin is the only appropriate therapy, although combinations that include insulin can often be helpful.”
Hi RS: It is your life and your health. Most people with slowly progressive Type 1 diabetes are so relieved and feel so much better when they finally get on exogenous insulin. Every single person I know in that situation has said that their only regret is that they did not go on insulin sooner. I would suggest you talk with your doctor, be your own best advocate, and make your wishes clear.
Your fasting levels are very high, 142 to 187, you are getting damaged, and who knows how long you are at that level. Your c peptide is kind of high for those levels of fasting but I'm guessing you need to be on insulin asap- c peptide should be tested fasting and non fasting. The autoimmune destruction can speed up quickly and you don't want to end up in dka with more damage and maybe die, soyou have enough for an official D diagnosis and to start on insulin to bring down your fasting levels. Normal bg is between 80-90 fasting and usually not higher than 120 after a lot of carbs although some may go higher it could mean they have glucose issues or they're pre D- have you tested yourself to see how high you go with 60g of carbs? I would do that. It's good that you're cutting carbs. You have type 1, almost positively, and you're lucky to have caught it very early to avoid a major disaster with dka and hospitalization and serious complications. so insulin is the only way to properly treat it. With type 1 no one really knows when your pancreas will shut down and you will go into a crisis but it can happen very quickly. I think I would change doctors if I were you because no amount of exercise and diet is going to properly treat type 1, you are just wasting what is left of your ability to produce insulin whereas if you supplement insulin you may be able to keep producing your own for a long time and you will hopefully feel much better.
Well I certainly acknowledge that people like that are the experts-- I simply don’t agree. If a person can have any of those markers and live their whole life without diabetes, why couldn’t they develop type 2 diabetes just like any other person could. My endo also agrees and has stated that he can not definitively make a t1 diagnosis for me even though I am obviously diabetic and am gad65 positive
That being said, he treats my case (appropriately) as type 1. There are very few black and white absolutes in physiology like you and the doctors you cite make… Bodies are complex mechanisms
I think that I would make it clear to your endocrinologist, that you are already eating right, exercising as much as possible (quite a lot from the sound of things), and don't have a big gut to lose. Point out that any limitation to your exercise regimen is mostly due to how crappy you feel, and you would like to go on insulin. If they still want to wait 6 months, then get a 2nd opinion. Maybe they are waiting until your numbers get worse so that the insurance allows a diabetes diagnosis.
As for diabetes meds, the oral/T2 meds tend to address insulin resistance problems, but a LADA/T1 needs insulin. So had they put you on metformin (which probably would have made your B12 issues worse), it might have made you sicker or simply extended the time before you got the needed insulin.
