Hi Sey: I am sorry that you didn't get more definitive answers, but by doing all that testing you do have a lot more information and knowledge. My one bit of advice would be to not avoid using insulin due to fear--if you are insulin deficient, using exogenous insulin is the answer. It is difficult when a person doesn't fit into some "box" as in your case. Certainly there is the possibility of idiopathic Type 1--the detection rate of autoimmunity in new-onset Type 1 diabetes is about 94% with four autoantibodies (GAD, IAA, IA-2, and ZnT8) ("ZnT8 Antibodies Complement GAD and IA-2 Antibodies in the Identification and Characterization of Adult-Onset Autoimmune Diabetes" Diabetes Care January 2010). New autoantibodies are being discovered, some people are T-reactive cell positive but autoantibody negative (but the T-reactive cell positivity points to an autoimmune process), and researchers think that the overrepresentation of the HLA DQ2/DQ8 high-risk genotype in patients with idiopathic T1D suggests an immune-mediated disease process ("Contribution of Antibodies Against IA-2 and ZnT8 to Classification of Diabetes Diagnosed Under 40 Years of Age" Diabetes Care August 2011). On the subject of MODY/monogenic diabetes, I suspect that the concept of MODY being diagnosed at younger ages (and therefore that you are not MODY) is just another misguided myth. Certainly some TuD members (including April/Annie) have had confirmed monogenic diabetes onset at older ages (April/Annie had testing done at Kovler).
Well this is all very confusing to me because i never had autoantibody testing, even with the original unknown type diagnosis , it was all because the hospital of diagnosis was incompetent and thought adult=you're a type 2, not at all trying to figure out anything else when my diabetes doesn't work at all like type 2 once insulin gets added into the equation (I use very little for both meals and corrections and I'm quite sensitive to it, 1 unit is my forever correction dose unless I have a death wish)
Regardless, there's still somethings that we're unsure of. IF your c-peptide is this without high blood sugar, that will be probably type 2, but if you're high and get this c-peptide it kinda leans towards type 1 . I do feel it's possible to test negative for autoantibodies and be type 1 because like others have said, this DOES happen. You'll just have to see though how this goes with trying other medications and diets. I hate to say wait and see though because I've been in the wait and see shoes due to an incompetent doctor and hospital. If you have type 1 and it's just not really showing up in the tests quite yet but it's starting to happen , waiting can still be dangerous and all. If you have type 2 it can still be dangerous while you're finding the proper treatment . That's just how it seems to be though, unfortunately.
With insulin sensitivity (I'm similar), you may find a pump helpful in future, it lets you do extraordinarily fine dosing, makes the units and half units of pens seem ridiculously crude (and the four-unit minimum of Afrezza kind of silly).
Thanks Christopher!
That's exactly what I'm trying to do. Basically control my sugars to protect the remaining beta cells. Right now I'm on a Very Low Carb High fat Diet and it is helping a lot. I'm going to start off with that (this is my 2nd attempt at it) and if my thyroid and cholesterol levels remain normal, I might be able to use a very restrictive diet to control this for awhile, (I do around 50g of Carbs per day right now). If I start getting hypothyroid symptoms or my cholesterol shoots through the roof,then I might have to consider try taking Metformin or Acarbose to see if it works when I eat more carbs. the endocrinologist did recommend an incretin mimetic as a possible regimen. He thinks it will help with the 1st phase insulin, but I am wary because of all the reports and studies on pancreatic dysplasia and cancer with this class of drugs. They did studies on Mice and saw dysplasia in the pancreatic cells, but at the same time, it kind of regenerated some pancreatic cells too, so it's difficult to say regarding the risks versus benefits. Thanks for your advice! I appreciate it!
1.) www.23andme.com
spit into tube-send off-no health reports, but all raw genetic data available ($99)
2.) go to snpedia.com look to the left at 'promethease'
3.) click on 'promethease' to learn how to download all your raw genetic data from 23andme for anaysis for $5
4.)search snpedia for topics like diabetes or TCF7L2 etc which will then have summaries and links to research, and also will link to 23andme so you can check out how your alleles compare.
Sey, what does your mom do to control her diabetes besides take metformin? does she eat low carb? does she exercise?
Hi Terry,
I agree with you. At the end of the day, it's about the numbers and whether I can truly keep my sugars below 140 postprandial with an Oral Regimen. I guess I won't really know until I try, but I will be proactive and I will know very quickly if something works or something doesn't, and if it doesn't I'm not going to dwell on it and move on to the next appropriate step (which might be insulin). I'm pretty confident that Insulin is in my future, (and maybe immediate future), but I'm taking an accelerated method-wise approach. I think by the end of these next 6 months, I will low.
I'm starting off with a very strict LCHF diet as of the moment, and it is able to keep me barely under 140 (80% of the time) and maybe it might be sustainable, but going on insulin would at least allow me to maybe eat a little bit more carbs every once in awhile which would make my life a little easier. I also don't know how this LCHF diet is truly going to affect my numbers (my sugars, cholesterol, thyroid) and will re-evaluate that in 6 weeks to see if it is sustainable.
You're right, the bottom line really is beta cell preservation. However, to some degree this is a difficult point to discuss with people around me and even to other physicians and endocrinologists. Most endocrinologists I don't feel really focus on postprandials as much as the overall HgbA1c. This might be an uphill battle if I end up needing insulin to control my sugars. I think I might need to be really persistent, especially since my HgbA1c is 6.0 at the moment and in the medical community that is considered "well controlled" which we know is not the case. I'm still very back and forth regarding starting a trial of Oral medications, and I haven't bitten the bullet yet. I don't even know what I'm waiting for and why I haven't just started either a trial of metformin or acarbose at least just to see if it works. I think it's because the people around me feel like if I can control my sugars with diet, it would be better to avoid taking medications and so I'm still working on diet control.
I’d say the bottom line is preserving normal BG levels, irrespective of beta cells.
Lol, that's the bottom bottom line at the end of the day. I was just reading and studying about ALS. My significant other works in a lab that researches ALS and I have a few patients with motor neuron diseases, and at the particular moment in time, I feel like I should feel grateful that my diagnosis is diabetes and not ALS.
Why wouldn’t 23andme genetic testing substitute for incredibly expensive MODY testing?
My mom actually does not exercise (at least actively, but she does a lot of house chores, washes the car and goes out to buy groceries a lot so she is active in that sense) and she does mildly low carb (I would estimate around 100g-120g of carbs.. she watches her carbs, but she doesn't go full blown low carb as she still eats rice and breads). She is thin though. She only takes Metformin 850mg three times a day and amazingly her diabetes has not progressed much for 15 years. I'm not quite sure why this is... but I'm hoping to follow in her footsteps.
Take a break, if your burned out on testing. That's OK. It'll be here waiting for you when you get back. Diabetes is a loyal friend. Does your mom live nearby you? If your gonna play around with the insulin, I would feel better if you stayed with her for a week or so, just to be on the safe side. Sometimes the hospital has trial Dexcom sensors that they lend out to pt.s who are considering buying one. You might inquire around town. Some hard, fast, continuous data might be beneficial for you. Have you ever worn a sensor?
Wow... you sound like me. My mother's whole family has diabetes even the skinny people. I am thin too and follow a low carb diet but still have postprandial spikes if I'm not careful. My endo is repeating the antibody test and wants to do the MODY panel. We're checking right now to see if my insurance will cover it.
I'm investigating if I can do the MODY panel too. Wish it was cheaper and more readily available. My brother recently started checking his sugars under my advice and his postprandials are also high (he's three years younger age 31 and he only weighs 120lbs), goes to around 170 with a bowl of rice, but not quite as bad as my postprandial spikes that go in the 200s at times. There must be some sort of gene involved I think, and it would be nice to know. I think it would affect management to know the underlying mechanism, because the sulfonylureas while I wouldn't recommend them usually as 1st line, they seem to specifically help MODY patients, although fast acting insulin would be beneficial too. I'm doing kind of okay with a low carb diet for now, but will see on my next blood test.
Yeah... White rice is definitely not my friend. I go over 200 when I eat it. I tried glyburide when I was pregnant and had "GDM". I hypo'd all the time. Looking back at my records, my fasting BS was always above 100. Just not above 126 which is why my previous MD's never called me a diabetic. With daily hard exercise and careful eating, I have brought my A1C down from 6.0 to 5.4 But I feel like I am eating a very spartan diet. Lately, even when my post dinner BS is below 140, my fastings are in the 115-130 range. I feel like I can't win:(
If you have no insulin resistance, then they should put you on insulin.
For me, if metformin plus cutting carbs and exercise didn't work, then I'd go the insulin route.
T2 diabetes as a whole has been found to have an even higher genetic connection that T1. MODY being autosomal dominant is even more deterministic. If you can demonstrate that you have several family members with likely MODY you may find the main centers more willing to work with you. Kovler is the main center in the US working on MDOY and Athena is the primary diagnositic center (and they are $$$). You might check Hattersley's group at Exeter (see DiabetesGenes.com).
Each of the forms of MODY are different. MODY-2 is characterized by chronic high fasting blood sugars which get worse with age as well as a delayed (or higher threshold) for a glucose induced insulin response. Various authorities suggest either a low carb is the only treatment or that insulin works. Many other forms of MODY respond to low dose sulfonylureas, but not MODY-2.
23andme does cover a lot of the researched diabetes genes (there are many), but when i went to snpedia and looked up mody1 and then connected to my 23andme account, it said that snp was not found- they didn't test for it, i guess. there are like 6 snps associated with mody1, and after i coundn't find any results on my 23andme account, i didn't look up the other mody ones.
Hi Brian,
Thanks for the links, I will look into these with time. A couple of people here have mentioned Kovler and I've been to their website, but have yet to contact them. Really busy these next few weeks, never feel like there's enough time to take care of myself these days.