Thanks for the detailed info on you and your brother. There are definitely many faces to this disease.
I had my own experience with a "Key Thought Leader (KTL)." He continually refused my requests for insulin and every time I would see him he would say that I had diabetes because I was fat and then he would cycled me through another mix of triple oral medications never actually admitting that nothing worked. He also suggested I needed to get my 53 year old body down to 8% bodyfat. When I found out he had accepted $250,000 in payments form pharmaceutical companies I realized that a KTL doesn't work for their patients.
I think that I would go back for another GAD Antibodies test, just to be absolutely certain.
When I was diagnosed (after being in DKA)I was told, by a doctor, that I was a "lean type 2" because I was still producing my own insulin. Although I was not as educated about Diabetes as I am now that did not sound right.
I went to an endocrinologist probably a month later, after being on a metformin regimen, still unable to really control my blood sugar readings, and took another one. Lo and behold not only did I have the antibodies but I started bolusing and taking long acting Lantus. I was probably a LADA type for all of a few weeks before becoming completely insulin dependent.
Definitely, look into a second opinion and a few more tests just to be on the safe side.
Anyway, I've been completely insulin dependent for the last three years.
It actually isn't so bad. :0)
Plus the people on this website really taught me a lot.
Cheers!
Wow, to be in DKA and to be told you were still a type 2 and put on an oral regimen? That is definitely time to see a new doc. I'm definitely going to recheck my antibodies periodically and of course Im still checking my sugar.
Yes the people on this site are awesome. So supportive and helpful it really makes me feel better about the whole thing.
Be sure to get the full suite of autoantibody tests: GAD, ICA, IA-2, and zinc transporter (ZnT8). I wrote a blog about antibody testing that might be useful. I also wrote a blog on medical misdiagnosis of insulin-deficient diabetes that might be useful for your situation.
My 30 plus year old story sounds like this ( some of YOU know ) : I had the typical symptons ...peeing , loosing 6 pounds in 5 days , age 42 plus , could not sleep , itchy skin and vagina , drinking water etc.etc. Dr visit and followed by lab test confirmed : I had diabetes ...was put on meds . every week to Lab ...BG's did not come down . Asked GP to put me on insulin 6 weeks later ...HE listened : one shot daily , then 2 ( my choice ) and so it went ...my proactivity paid off !!! To me it did not matter what it was called then , what it is called to day ...I live with diabetes and require insulin daily , that's what matters and got me this far : NO complications ...have been pumping insulin since 2001 ..age 73 , on July 25 ...good days , some not good ...here to tell MY story and thanking my Hubby for being on my side ...( am a type 1 )
Thanks Melitta, for some reason my doc did all of them but the zinc transporter. Is that a newer one?
Sounds like you maybe a T2. I don't believe there is such a thing as pre-diabetic. You seem to have the same symptoms as my T2 wife who is controlling her blood glucose by a very low-carb diet and exercise. I'm hoping that she can stay off meds and insulin. Just stay away from ADA Certified Dieticians. You don't need a Doctor's approval to be a diabetic. You either are or you aren't. Just keep an eye on it. My wife doesn't have to do many finger tests because she is almost always in range.
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The Zinc transporter was recently discovered--I think the paper describing it came out in January. My doctor looked for it when he tested me in June and he said it wasn't commercially available yet.
I saw a new endo today. Not that I donāt like my local endo, I just wanted a second opinion really, especially since there is a big question mark on my diagnosis.
Anyway, he was certainly nice enough and definitely took the time to talk to me. But he was fixated on the inaccuracy of glucose monitors. He says they are only good to within 20%. While that is technically true, based on this study of glucose monitors http://www.journalofdst.org/September2012/PDF/VOL-6-5-ORG2-FRECKMANN.pdf they are usually within 10% the vast majority of the time and even within 5% at least half the time.
If it was just one errant number, I would definitely take it with a grain of salt. But Iāve had consistent elevated numbers every time I eat carby food. Anyway, that led to a bit of a circular discussion. So now I need to go in next week for an oral glucose tolerance test, which is understandable and at least then he wonāt be able to argue with that result. Im not looking forward to drinking glucola though.
Anyway, thought Iād give an update.
Thanks, guitarnut, for the update on availability. Arup Labs in Utah does the ZnT8 testing. Here's Arup Labs information sheet on ZnT8. No mention on the website about whether or not the test is commercially available. And yes, MaximJ, zinc transporter is "the new kid on the block" autoantibody.
The glucose test will not be fun I'm sure but it will show your big spike with carbs.. however, how do they measure glucose then, by vein? I guess it is considered more accurate that way. I think it's crazy to base diagnosis of high bg and D on the relative innacuracy of meters. If you have consistent spikes with high carb foods that is enough really. I found my meter is no more than 20 points off 99 percent of the time when it is off. I sometimes retest when I feel it's wrong. I hope you get this worked out soon!
Hello Maxim,
Iām new to this forum and have a very similar experience to yours (I wrote about it in a recent post). Iām wondering if you ever got more clarity or ended up testing positive? Iām looking for clarity myself. Thanks 
I am having a similar experience. FBG in the 90ās. A1c 5.0 but post meal numbers reaching 200. I had gestational diabetes twice. Was feeling very fatigued the last few years. During a visit to the ER for Pneumonia, I noted that my FBG was 112. A week after, I went out an bought a meter and started testing. My post meal numbers were close to 200. I went on a low carb diet immediately. I showed my meter to doctor who was very alarmed by the numbers. He sent me for some blood work and after seeing my FBG drop to 85 and A1c at 5.1, he dismissed my concerns saying my meter was broken. The next time I went for a blood test, I took my meter with me and my FBG on my meter was only 4 points off. Needless to say, I remained on the low carb diet. A few months later, after reading more about diabetes, I insisted that he do a 3 hr glucose tolerance test with insulin. My fasting insulin was low. FBG was 87, 1hr, glucose was 210 insulin was 55. Glucose was high but insulin was normal. Second hour, glucose was 125 and insulin was 45. Glucose and insulin were considered normal. Third hour, glucose was 115 and insulin was 33. Glucose and insulin were both considered high. My doctorās response was that he needed to do some research. A couple of months later after listening to my concerns about running out of insulin, he agreed to do a c peptide test and check for GAD antibodies only. C Peptide was low at .62 and GAD was negative. His email response was weāve done a lot of tests for now. Will do some more later. Thoughts? Anyone know a good specialist in NYC?
EM15,
Well your insulin levels are escalating as your BG doesā¦ And itās bringing them back down to normal levels, though not as fast as youād like. My opinion is that what you just described looks more like insulin resistance than insulin deficiencyā¦
The fact that your insulin levels and c-peptide levels are low when fasting is basically irrelevant because your glucose levels were normal at that timeā¦ So basically there was no call for an insulin response to be taking place in your body at that time, and whatever level was there was is seemingly the correct amount to balance your glucose right in normal rangesā¦
It may be a battle to find a doctor to treat this based on your low a1c and essentially normal fasting BG levels, Iād think theyād likely just tell you to improve your diet and exercise more and wait and see if your a1c starts increasing to the 6 or 6.5 + range or fasting levels start creeping Up north of 130 or soā¦ Not saying that this is the most aggressive treatment possible but I am saying that I suspect it may be what you hearā¦
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Thank you, Sam. The thing is that I am 5ā4 weighing barely 105 lbs. i drink over 50 oz of fluids a day and often have mild dehydration probably due to frequent urination. I have a slew of vitamin and mineral deficiencies. I walk 4-5 miles a day, do 1hr a week of weight training and 2 hours of reformer Pilates. I am not the typical type 2. But I agree, I donāt think any Doctor is going to take this very seriously until my FBG and A1c start to rise. I wonder whether I just stumbled on this very early which is a good thing.
This wonāt help your odds to find a doctor who will take it seriously with a healthy FBG and A1C either. It sounds like you have a decent Doctor, Iād just keep expressing your concerns and exploring the issue with themā¦ How this all ties into your history of gestational diabetes is a question I donāt know much about eitherā¦
I am little, exercise a lot for my age (even teach a few classes) and your description of your issues match mine (insulin resistance). I am on a LCHF diet too. Now, doctor-ordered lab testing reveals that I am normal. Do I still have prediabetes? Yes. If you want to show a diabetic number to your doctor, you need to go off the LCHF diet about three days prior to a blood draw.
I probably sound like a broken record to the Tu Diabetes gang, but being deficient in minerals and vitamins can be related to celiac disease and no tummy issues have to be involved (I was only anemic/low iron stores). Google it!
Hi Cindy,
Thank you for the response. My doctor has come around to saying that I am a little diabetic. Not sure that makes sense. Itās like saying someone is a little pregnant. I am feeling so much better on the low carb diet that I canāt see myself coming off of it for even one day. My blood pressure has dropped by nearly 30 points. My nerve pain in hands and feet is 95% better. I did try eating a bagel and testing. 4 hours after eating a plain bagel, I registered 152 on my meter. According to Joslyn diabetes center, that is diabetes. So at this point, I have no doubt. I am just trying to figure out the type. I read last night that the C Peptide test doesnāt show how much insulin your body makes but how much insulin it secrets. So I am going to check for MODY 3 and MODY 1 and see what I find out.
Man, you totally just wrote my story. Diagnosed in May this year as Type 2, but āweirdā (not obese, active, etc.). Went on metformin and low-carb, has worked wonders for my A1c, but doctors think Iām not Type 2. Just got antibody tests back as negative, with a ākeep testing and see what happensā from my doctors.
Low-carb and working out is working for me now (my a1c is 5.1), but I also canāt eat ānormalā meals. Less than 20g carbs per meal is the only thing that works right now, and Iāve got some other weirdness (very low insulin production, etc.). I test three times a day, and know the signs of DKA and am under orders to go to the hospital with a high BG.
Other than that, I have no idea what to expect! Am I honeymooning? Am I just a weird Type 2 with minimal insulin production and resistance? Will I need to be on insulin?