Hi Melitta,
I've heard about many cases of this. I think this sort of error is unfortunate, and completely preventable. When I was in Highschool, a friend was diagnosed and treated by her family Dr. as T2. She had many episodes of severe highs and lows. Treated only with oral medication. The thinking was that she had to be T2, because 15 was considered too old to develop T1. This was also about 17 years ago. Do they run antibody tests when you're diagnosed, now?
The glucose control of a healthy person is very tight with only small deviation. In general complications are caused by elevated blood glucose and its deviation. The A1c does not reflect the deviation thus it will only tell half the story.
To stay free of complications a reasonable A1c is a pre-condition but it is not a guarantee. Thus you should always try to reach your A1c goals. For sure your likelyhood to develop complications is increased with a higher A1c.
Just lowering the A1c is not enough. You should also try to minimize deviation:
The interesting point about T2 diabetics is that they often manage to have only small deviation. Their problem is that the total amount of insulin is not sufficient and the mean glucose is elevated all the time. If a T2 is flat at 150 mg/dl this will cause complications for sure. If a T2 is flat around 130 mg/dl this might work without complications. The windows is just small. For most T2 the mean glucose level is constantly rising over the years. The treatment will switch to insulin but often more than 70% of the beta cells are lost then. The switch just came to late - the damage can only partially be reversed but will halt.
For T1s you look at two persons with the same A1c. One will develop complications the other is complication free. What we do not know is their deviation. Perhaps the second person has residual beta cells capable to produce just one unit of insulin per hour (a healthy person can produce 20 units per hour). This can have the consequence that the spike after the meal is 160 mg/dl instead of 190 mg/dl. This will help to reduce the likelyhood of complications. Or the second person is willing to integrate a waiting time between injecting and eating. Thus he will have a smaller spike after the meal. The first person will not accept the waiting time. Again the likelyhood will prefer the second person. People are also different in their clearance rate of the kidneys. The kidneys are filtering the insulin out of the blood stream. If this filtering does happen slower the insulin acts more potent. Furthermore there is a genetic disposition that controls the capability to repair the damages done by elevated blood glucose. Especially the capability to heal nerve damages seems to be very individual and might also depend on eating behaviours.
I have had good A1c's most of my life and have had no classic complications. My doctors have called me me obsessed, even a over achiever on occasion. Today I believe that the best approach is to just do the best you can and try to achieve as many of your goals as possible. Anything can happen to your health, you can spend your whole life hiding from the lions and get eaten by a tiger.
you can spend your whole life hiding from the lions and get eaten by a tiger
I really like this, thank you. :)
To obtain a CDE certification you must be a licensed professional, have 2 years experience AND 1000 hours of diabetes self management experience in the previous year. I have had D for almost 30 years, and have been an RN for 21 years. I have never had a CDE that knew more than I did. Yet, I still cannot qualify for a CDE certification. I know more about D than any of the nurses I work with and most of the physicians. I have been turned down for several Educator positions because my own 30 years of experience counts for nothing and I don't work with diabetic patients everyday. Its ridiculous.
I attribute the fact that they continued to do better with comparable control to some healing having happened while they had better control.
Complications of diabetes are not always reversible but it's not rare for a person's microalbumin levels or neuropathy or even early retinopathy to get better. Sometimes even without improved control. I figure the higher your A1c when you developed complications, the more likely it is that you'll be able to reverse the complications if you get better control.
Hi Zoe: The people that I know who were misdiagnosed around the same time I was had REALLY bad blood sugar control. They were also younger than you at diagnosis, so probably had a more rapid onset. But still treated as Type 2 on oral meds, with their doctors insisting that they problem was with them for not following the regimen. One was running in the 300s (mg/dl) and had been misdiagnosed for 18 months, and he was in a really bad state. So I don't know the answer to your question, and I haven't seen any research on the subject; we can only hope for the best. And I LOVE what JohnG says below, you can spend your whole life hiding from the lions and get eaten by a tiger. I think I am going to make that my new mantra/motto.
I think some people are just lucky to have good healing capabilites and have the ability to be able to not develop complications. Maybe genetically they are different than other people. Look at Lance Armstrong. He has been proven to have different lungs than most people and ability to have quicker muscle recovery after fatigue. Also Michael Phelps had the ability to recover better. So I would leave it up to good genes that help in other ways when diabetes attacks. I guess not enough studies done as to why some people's bodies can run high for years with no damage.
Hi Sam Iam: Wow, 17 years ago a 15-year-old was diagnosed as Type 2 because she was considered too old to develop Type 1? That is really bad. I don't think that many doctors run the antibody tests now, although my cousin who is a family practice doctor has diagnosed MANY adult-onset Type 1s, and she always orders 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) plus c-peptide if she has any suspicion the person might have T1. And I encourage so many people here on TuD to get the antibody testing, because it can help to get the correct diagnosis and treatment. Within the medical community there is a lot of resistance to doing the antibody testing, with excuses such as "it's too expensive" (full price out-of-pocket is about $471, that is a fraction of the cost of treating DKA or complications) or "it doesn't change the treatment" (there is a world of difference between insulin and Type 2 meds).
Needless to say, this is outrageous.
You might be right. That's pretty disturbing. Maybe a T1 kid should shoot for a higher A1c, and gradually lower it every decade or so. Again, wish there was data.
This has to be true. That where you said being diagnosed young. I've gone weeks with Glucose levels over 600 and felt normal without getting the severe symptoms of DKA. However, once I gained control, I can feel a high at 220
The only mention i noticed of deviation was the assumption that the control group had greater deviation. I think it makes some sense, but again, very difficult to study.
Interesting about T2. I wonder if this is the experience of people here? 150 all the time is about 6.6 A1c. I have never had a reading that low as an adult (yet). A couple of times, friends of mine, both overweight, on their 30s - 40s described diabetic symptoms. I tested their blood, and their BG was over 300. Their doctors diagnosed them as T2. These instances were several years apart.
DCCTpeople did very few BG tests: I don't think they measured deviation, and this is an argued matter still today.
DCCT and the follow up study showed that comparing two groups with the same A1c, the group which years before had bad A1cs on onset developed more complications.
They called it methabolic memory, but I don't know more than this.
DCCT was a very important study but had very ancient tools (1983-1993): I don't know what they used for BG testing, I think they did it 4-5 times a day.
Today they don't do anymore such studies because it could be much expensive. The most similar thing is or could be TUANALYZE ...
Another thing I have read is that long-time, complication-free Type 1s tend to use less than 0.5 units of insulin per kg of body weight TDD, and are regular exercisers.
I'm one of those T2s who started around 9, went immediately down to the low 5s and has stayed there ever since, mostly just with a low carb diet. I have been taking 1000 mg of metformin a day for a couple of months. I have had lots of issues, though, that the doctors say are more typical of long term high blood sugar, which I did not have. My own theory is that I got knocked out by an autoimmune thing, of which diabetes was one of the effects, not the cause. Most of my malfunctions are nerve-related, my eyes and kidneys are fine. (In fact, my glasses prescription is more than half as strong now as it was 5 years ago.) Because Kaiser just stamped the generic Big D on my forehead and has never investigated any other cause for my problems, it concerns me that I could have a relapse and end up in worse shape. My neuropathy came on rapidly. As far as complications being reversible, I had pretty severe amytrophic neuropathy and lost a lot of leg muscle and was in a wheelchair for a while. The muscles returned after a couple of years of exercise (on my own), but the nerves are still shot. So my legs are strong, but I'm clumsy. I don't walk, I lurch.
I suspect it depends on the level of ādamageā already done to your system at the time of diagnosis and what type. Some of the damage you can repair over time, everyone is just dealt a different hand in the āgameā and what you decide to do about it!
I just try to balance things for myself, diet vs. exercise vs. monintoring for trends, trying to keep the daily levels in the 5ās. The a1c level is just one piece of the puzzle, probably can have great a1c levels, a crappy diet, and no workouts. If I donāt workout-I know itā¦
I did pretty good so far, reversed a lot of issues for me healthwise as to how long it will last - who knowsā¦ For some people, the cards just arenāt there, got a cousin-in-law if she gets ten more years, great! T1 with other major health issues.
That's pretty disturbing. I could eat a whole pizza when I was a kid. Now, that would probably kill me in a second.
Sorry to hear about the neuropathy. Sounds like you're a very strong person.
WOW you're right in all you said...1..2..&...3 WE are the doctors..nurses..dieticians..nutritionists..etc...when it comes to T1& PUMPING.
TO ACIDROCK23