Replies to This Discussion

Permalink Reply by Sam Iam on May 9, 2012 at 10:34pm

I think that in this case, luck is a stand in for things that we don't understand yet. Of course, on a certain level, luck is our genes.

According to the NIH, 60-70% of diabetics suffer from neuropathy.

They list the usual suspects as risk factors; smoking, being overweight etc.

also, interestingly "autoimmune factors that cause inflammation in nerves"

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Permalink Reply by Melitta on May 9, 2012 at 9:31pm

Hi Sam Iam: I think that the "1.5s" as you call them (I call them adult-onset Type 1s) develop complications at a greater rate because so many of them are initially misdiagnosed as having Type 2, when they really have Type 1. So they are not given exogenous insulin initially, go for a period of time misdiagnosed and mistreated, and develop complications much more rapidly (even if they get things under control once they get on insulin). I was misdiagnosed as having Type 2 diabetes 17 years ago (I was hospitalized in DKA but diagnosed as Type 2 because I was 35 years old). I was only misdiagnosed for one week, given the correct diagnosis of Type 1 diabetes and have been on intensive insulin therapy since then. I know a number of people (mis)diagnosed around the same time I was, and all of them went for many months or even years misdiagnosed and undertreated. And tragically, all of them have complications, and I do not. I think that those lucky adult-onset Type 1s who are correctly diagnosed and immediately put on intensive insulin therapy have an extremely good chance of having a complication-free life, but a correct diagnosis is a rare thing based on what we see here at TuD and in the scientific literature.

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Permalink Reply by Zoe on May 9, 2012 at 10:09pm

Melitta, would you say this is also true for those of us who were slow onset (LADA)and though misdiagnosed as Type 2, were able to maintain good numbers for months or even a couple years on oral meds before getting correctly diagnosed and put on insulin?

In my own case I waited too long (maybe five months) as my numbers slowly but steadily rose, which is what motivated me to do the research to understand my correct diagnosis. So of course I have concern about those 5 months. But what about those who do well on the oral meds and then are put right on insulin? Do we know if damage is done during that time on oral meds even if blood sugars are good?

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Permalink Reply by Melitta on May 10, 2012 at 7:45am

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.

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Permalink Reply by Sam Iam on May 9, 2012 at 11:05pm

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?

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Permalink Reply by Melitta on May 10, 2012 at 11:00am

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).

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Permalink Reply by Holger Schmeken on May 10, 2012 at 12:04am

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.

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Permalink Reply by Sam Iam on May 10, 2012 at 11:39am

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.

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Permalink Reply by JohnG on May 10, 2012 at 5:57am

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.

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Permalink Reply by smileandnod on May 10, 2012 at 6:55am

you can spend your whole life hiding from the lions and get eaten by a tiger

I really like this, thank you. :)

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Permalink Reply by PatientX on May 10, 2012 at 8:01am

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.

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Permalink Reply by garidan on May 10, 2012 at 1:03pm

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 ...

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