Amen, brother. :)
Is it possible to be antibody positive and not be type 1 but be type 2 instead?
I haven't heard that before.
i agree with this too, Sam. His cpeptide is LOW, considering he was below 200 when fasting and getting the blood drawn and certainly doesn't fit the profile of a type 2 insulin resistant diabetic. But, it does matter, in terms of medical coveage, insurance, etc...that one gets the correct diagnosis.
Rahul, some will be quick to point out that by convention they may be diagnosed with type 1 if antibody positive, but itās just that, by convention and many donāt agree with that conventionā¦, itās more about defining a condition than common sense or science
Wow, these are really interesting threads! I don't recall you mentioning your mom in the other one but, if you have a family hx of T2, that might make sense that regardless of the other factors (size, etc.), that you could get it. I agree with your mom that dropping $10K on the genetic testing is not likely to tell you much. I'd work through some of the different (i.e. non-Metformin...) oral options to see if they *snap* and provide some benefit. I like insulin too (ha ha) but am not always sure that it's the best fit for every T2 subtype that comes up here. I really appreciate you sharing your story, these have been really interesting threads to read.
He has substantially impaired insulin production, negligible phase 1 response, and no meaningful insulin resistance. I don't understand why it makes sense to call him a Type 2, whatever that means, or to shy away from insulin.
Having antibodies and not getting type 1 or do you mean not getting Diabetes in general? Or maybe I'm interpreting what you said with wishful thinking :)
Sey, I used Acarbose about 5 years ago when I was having hypoglycemic symptoms. I personally couldn't tolerate it because it caused a lot of gastrointestinal discomfort and I didn't notice a large enough difference in blood sugar that made it worthwhile. Since I'm following a similar path I would suggest trying Metformin along with the low carb diet if you aren't given insulin...that's my plan anyway...Good Luck!A correct diagnosis can also be a negative in terms of medical coverage/insurance, because "Type 2s" may not have access to pumps, CGMs, and other very helpful technology. I'd call this an unusual Type 1 (perhaps MODY, perhaps LADA despite negative antibody tests) rather than Type 2.
In all honesty, I was mentally prepared to go insulin, but I didn't bring it up to him specifically, because I wanted his Unbiased opinion. Although I suspect based on what he was telling me that he would have been reluctant to prescribe insulin. That said, I think I will need to go on insulin sometime. I don't know if the time is now or a few years down the road. I think it makes sense to maybe try out what he suggests with Oral meds first. I'll know pretty quickly if I respond or not and if I don't, then insulin would probably be a good option, but it might be difficult to convince an endocrinologist in that regard. I'm actually going to get a 2nd opinion with a new Endocrinologist that just joined our organization and see what he thinks.
I agree with you, I've read in multiple places and journal articles, that in Type 2, the Beta Cells are dysfunctional (likely from genetics) and for Type 2s, there may be a problem with beta cell regeneration, because a normally obese patient can actually grow more beta cells to compensate for high sugars and insulin resistance. I probably don't have that mechanism and maybe I do have less Beta cells to begin with. (I don't know if being born prematurely has anything to do with it).
I think the Acarbose makes sense from what the endocrinologist was saying to some degree. If the end-goal is to make sure my Sugars don't go above 140 and the way acarbose works is to slow down how fast your gut absorbs sugar, it will give more time for my phase-2 to kick in, but I don't know if it will really work and it's definitely not resting my pancreas, just giving it time to respond. But it might at least help prevent glucotoxicity for high sugars.
Interesting enough there is a study on Acarbose for Impaired Glucose Tolerance (IGT) on uptodate.com which shows the below:
In the Study to Prevent Non-Insulin-Dependent Diabetes Mellitus (STOP-NIDDM) trial, 1429 patients with IGT were randomly assigned to acarbose (100 mg three times daily) or placebo for a mean of 3.3 years [48]. Acarbose therapy resulted in a significantly lower risk of diabetes when compared with placebo (relative hazard [RH] 0.75, 95% CI 0.63-0.90). However, 19 percent of patients in the acarbose arm withdrew because of gastrointestinal side effects compared with 5 percent in the placebo group.
In the same trial, acarbose appeared to reduce the risk of a composite cardiovascular disease (CVD) outcome in patients with IGT, a finding that requires further confirmation.
Happy Holidays Guitarnut!
There are a significant number in the general population who do not and will never have diabetes of any kind and are auto-antibody positive⦠It is not an end-all definitive test⦠Human physiology isnāt black and white.
Actually what you guys are saying is correct.
I actually should do a Oral Glucose Tolerance Test with 75g of carbs and check my C-Peptide and insulin levels at the 1hr or 2 hour mark to see if my C-Peptide goes sky high. If it does, then it fits with Type 2 more, if it stays low or normal, and my blood sugar is 300, then I'm more likely insulin deficient. I know you guys are right on this, I'm just suffering from testing burnout and this one is more annoying to test then others, because it requires a 2hour testing period and I am deathly afraid of what 75g of carbs will do to my body. But I should get it done at the next blood test.
BTW my FBS was 91 on this blood test.
If we are looking at raw numbers and using a HOMA-IR (Insulin resistance calculator)( http://gihep.com/calculators/other/homa/ ) I have normal insulin resistance, but this is not as accurate as what you guys are proposing and getting a C-Peptide after eating.
Ultimately it is about controlling the sugars and I have a feeling I'll end up on insulin earlier rather than later. I probably will end up going through the same path, trying a few orals and seeing how it works and if I fail then end up on insulin. Although for the last week after talking to everyone here, I have gone back on to a very LCHF diet which keeps my postprandials barely less than 140 because I am basically not eating much carbs at all. The Insulin would at least give me a little bit of freedom to have some carbs, on certain occasions. I mean I want to have cake or a cookie once in a blue moon!
Oh BTW, my mom is on Metformin 850mg three times a day.
It actually has "controlled" her sugars for 20 years meaning her Hemoglobin A1c has been less than 7.0 (controlled as in American Diabetic Association standards), but not controlled if we use Bernstein/ Strict Control Standards.
She used to be on Januvia, but I was really concerned about the studies and reports of Pancreatic cancer with it and so we decided for her to stop, especially since my grandmother died of pancreatic cancer and we have a family history of it.
a correct diagnosis is just that. if it is type 1 or type 2, accurately diagnosed, it is what it is in terms of coverage. type 1's have no ability to produce insulin, often times they too cannot get coverage for these things, which are often live saving, i.e., CGM coverage for T1's on Medicare. There is no such diagnosis code for LADA. It's a ridiculous name, it's just type 1 diabetes.
Sure, just recognize that the label can negatively affect treatment options. And the labels are so imprecise anyway that I'm not convinced the treatment ramifications are so significant. Personally, as a possible MODYer whose been called a Type 2 at times but mostly a Type 1, especially these days, I'm very happy to have the latter label associated with me.
For me, the bottom lines would be beta cell preservation and avoiding even modest increases in the risk of complications. If you can keep your blood sugars tightly controlled through diet, exercise, and oral meds, go that route. As soon as you can't, go on insulin.
My sense is that the mainstream medical approach is often to wait until things get bad, but the problem is at that point you've degraded your body to at least some extent. I've had both run-of-the-mill endocrinologists and top-tier research physicians over the years, and one thing that pretty consistently distinguished them is that the latter camp was much more open to aggressive early insulin to try to preserve beta cell function and ameliorate the physiological consequences of even transient highs.
Of course, you're a doctor and my only formal medical qualifications are being a former EMT and having a fair bit of wilderness rescue experience. And a dozen years of being a diabetic who presented pretty similarly to you.
I'm not sure what to think, I believe figuring out your type is important if you can, but one thing I'm sure of is it would be a bad idea to spend 10,000 on MODY testing! Your mom is right. I can't believe it is allowed actually for that much to be charged for the testing whether covered by insurance or not. I think one of the reasons I believe it is important other than various obvious treatment issues is due to what happened to me- misdiagnosis and dka/ serious complications, this is something you want to avoid at all costs, if you know you have type 1 you can keep an eye out for those symptoms and signs etc. That is much less likely to happen if you have type 2 since dka is much rarer unless you're ketosis prone type 2. You may be one of those cases where it isn't possible to say, some type 1 don't have antibodies and you may be a very long honeymoon(hopefully), I'm sure I had symptoms for years, some very obvious in the 5-7 years before which brought me to multiple docs, before I was ever even diagnosed which was 3 days before I ended up in the icu in dka. And I had hypoglycemic events about 10 years before the other symptoms came on which I tested for but didn't discuss it with anyone. As others have said and I agree, what is really important is your treatment now and managing things. I also agree that the type 1 label will make it easier generally for you to have access to various treatments, although I have seen people who are type 1 here being denied cgm and maybe other things depending on insurance and requirements, in that case she hadn't had bg under 50 so she was denied cgm.
When I was diagnosed with diabetes just over six years ago, my fasting C-Peptide and Insulin levels were in range but low. As my GAD and IA-2 Antibodies were extremely high, my Endocrinologist said, āWith a Fasting BGL of 10.4 mmol/L, your Insulin Levels should be in excess of 30 not 3, so you are definitely not Type 2, and oral medication will not help you.ā Within two years, I was diagnosed as Brittle Type 1.
Now as I approach my 63rd birthday and six years down the road, I still have the same Endocrinologist, a very switched on GP and Diabetic Educator. I have collected and recorded a lot of data and I do not like the diagnosis āBrittleā but I have to make drastic changes at times to keep BGL stable and within range.
Although my insulin usage can exceed one unit per kilo of body weight some days, insulin sensitivity is actually my Achilleās heel because I have gone more than 24 hrs without insulin and had good BGL results.
I will make the statement now āEVERY ONE IS DIFFERENT SO YOU MUST KEEP GOOD RECORDS TO WORK OUT WHAT IS GOING ON.ā
I am an outside person and I do a lot of physical work so when it comes to bookwork, I have a lot of trouble keeping BGL down even with high insulin usage. When a cup is full, more water will only make it overflow and the excess has to go into another container. Although my BMI is in the high twenties, suggesting I am overweight, I have very little fat tissue.
So when I do bookwork for several days my Glycogen reserves are completely restored. Physical activity is minimal, my glucose usage is low and I have never had high fat tissue so there is no where for glucose to go and BGL stay high.
The exact opposite occurs when I have been working hard for a few days. During the second day my Glycogen reserve are getting run down and I have trouble maintaining BGL, even although I have drastically reduced my insulin usage.
It was over five months after being diagnosed, before I started insulin which was too long. During this period before insulin, I found that if I had breakfast and allowed BGL to rise to 18mmol/L, BGL would fall quickly as I started work. BGL would remain stable all day and would stay below 6.0mmol/L, no matter what I ate as long as BGL did not fall below 5.3mmol/L. Most mornings I would have a BGL of between 8 ā 11mmol/L and it was very hard for me to get this level down. Some mornings I would wake up with a reading of 8.0mmol/L start work and it could be midday before I ate, after I had achieved a reading of 5.8mmol/L.
Before I was diagnosed with Diabetes, my BGL were perfect, with fasting BGL always below 5.0mmol/L and never going above 6.0mmol/L even if I had just eaten a large carbohydrate meal. Prior to Diabetes, I rarely saw my doctor, but my son had been diagnosed with Type 1 in 1996 so I used his meter to check my levels.
Although the immune system causes the destruction of the insulin producing β-cells, the high sugar levels, ( D-Hexoses, 6 carbon sugars) hasten the process. Recent work has shown that Amylin, also produced by β-cells, is a regulatory hormone but is only produced in small amounts. The Insulin - Amylin ratio is about 100:1. I often wonder if it was not the β-cells that produced Amylin that were destroyed first, in my case, causing unstable BGL when I was first diagnosed because I did have some control if I followed a set routine.
For every reaction there has to be an equal and opposite reaction for equilibrium to be established. So if there is too much Insulin and glucose levels are dropping too far, Glucagon triggers the release of glucose. Amylin is the regulator. Amylin has also been implicated with causing complications if human Amylin transforms into a β-hairpin conformation. (Please do your research into Amylin ).
I was considering an Amylin type injection to stabilize my BGL but there is not enough evidence to suggest that it would be of any benefit for me.
Insulin is only part of the story and there remains a lot more to be discovered before it can be said that there will be a cure for Type 1 Diabetes.
All the best, Sey and I hope you sort things out soon.
Rahul_Boston, if a person has been diagnosed with diabetes (FBG greater than 125 mg/dl) and is autoantibody positive, the person has Type 1 autoimmune diabetes. Type 1a diabetes is defined by disease process, which is immune-mediated destruction of the beta cells of the pancreas leading to insulin deficiency. Autoantibodies are not present in Type 2 diabetes; if autoantibodies are present, the person has Type 1a diabetes (according to the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus, āAlthough the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta cells does not occur.ā)
