I'm sorry too... :-( I guess it just goes to show that there are a lot of not so great doctors out there. I really would have expected much better treatment and concern from a research center!
You are spiking to the level was at when I was already in dka and you have trace ketones, those strips are accurate imo... I tested mine at 160 and above when I was already dka and then my doc's office did the same thing the next day, only to send me home in dka with all the other terrible symptoms.
Can you try to find another endo on your own in your area? I disagree completely that there is "no treatment" and that no other endo will do something differently and I wouldn't continue follow up with a pcp.
I also would definitely try to find some experimental prevention programs and read about what they're doing to see if it's something you want to try. As long as they're safe you have nothing to lose. You are in a perfect position now to try something like that.
You went into DKA at a blood sugar of 160 mg/dl? That is pretty odd. Do you think there were other things going on? Sometimes DKA can be caused by other things.
And I doubt that many doctors will be willing to initiate insulin on a patient that is still "pre-diabetic." Anne Peters may well put T1/LADA patients who are diagnosed with overt diabetes immediately on low dose insulin instead of messing around with things like oral medications, but I'm not clear she would start a patient so early.
ps. My suggestion is actually try to get an OGTT test done and at the very least do one at home. If you are over 200 mg/dl after two hours you have overt diabetes. That would help you argue for treatment.
Thanks Melitta and meee, my daughter (she's an NP) is visiting this weekend so it helped to talk to her. She told me to look for an endo on my own and that the one I saw at NIH was a fellow and obviously green based on what she said. My daughter did a clinical rotation with an endo in Virginia that always treats prediabetes with at least metformin. She said that the medical community should be practicing preventive medicine- not just treating illness after it happens. Plus I have had several readings in the past few weeks that were 200+. Some were at 1hr and a few at 2 hrs. She also pointed out to me that if I weren't eating as healthy as I always have, I would be diagnosed with D by now. I still need a referral to get to an endo so I am considering taking the results to my PCP to try and get one from him. I just need to do my homework first to make sure I find an Endo that will treat LADA in the early stages.
Brian, I went into dka, at my diagnosis I was already in it, at 270 not 160, not sure where 160 came from? That is only 10 points higher than the spikes that bjm is having and she is also having small amounts of ketones. My DKA was classic type 1 dka, nothing else going on except I ran out of insulin. I also had multiple complications and I'm lucky I survived it all. If had better doctors and treatment I could have avoided all of this.
I think bjm has had gtt already maybe, but in any case she is having post meal spikes of 2 hours in the 200s to 260's with higher carb meals. I think she has just been diagnosed as type 1 lada due to the antibodies and the blood glucose info and she also has a family history of both type 1 and type 2. Imo, she needs treatment and possible prevention, not a wait and see what happens approach.
bjm: I'm glad you have your daughter to help you and I hope you can find a good endo soon who will start some sort of treatment, sorry that you are facing roadblocks in dealing with all of this but at least you know what is going on and what to watch out for. I know how hard it must be to weather all of this, but you are armed with lots of information which is good.
I feel like if you are having 200 and 265 (especially with any level of ketones, this means insulin deficiency) .you are a full on diabetic no pre-diabetic nonsense . even if you can have lower numbers than that, the fact that you're spiking up to the 200+ range means you're a diabetic. Any random glucose reading of 200 mg/dL+ at any time is diabetes. Metformin will likely give you very little improvement alone and sooner or later you'll need insulin. It's inevitable, you cannot stop an autoimmune attack .
I was having numbers between 150 and 300 (mostly 200's and some 300's sprinkled in) before I was put on insulin and properly treated and I often had at least trace amounts of ketones. Starting lantus alone stopped the ketones most of the time but now I'm on a basal/bolus injection routine and I don't have ketones at all unless I'm really sick and also really really high for some reason (pump set me up for that when I tried it, so I know I still can get high sugar readings and ketones) I'm a type 1, though an adult where it is hard to tell if my onset was slow or rapid but it happened.
I think you need to be careful about leaping to insulin. You have an A1c that is barely into the pre-diabetic range. Your GAD test is barely readable, there is some level of noise in the test. And while it is interesting that you had readings over 200 mg/dl, that is not uncommon with someone with pre-diabetes. Often readings at 1 hour soar and then come down. While the diagnostic criteria says that you can be diagnosed diabetic when you have (multiple) readings over 200 mg/dl concurrent with overt symptoms you rarely find any doctor depending on that criteria. And they won't base a diagnosis on readings you did yourself, there is too much room for error. A tiny bit of sugars or soap containing glycerol on your finger will give a false reading. And while you might think sugar in your urine and ketones is a red flag, these are not out of line for pre-diabetes. You start dumping sugar in your urine once your blood sugar reaches 180 mg/dl and anyone fasting, testing first thing in the morning or after exercise may naturally see ketones.
It is fine to push your doctor aggressively to monitor your condition and take aggressive treatment actions. And yes, there seems to be studies that you do better if you manage your blood sugar well. But right now the information you have given suggests that your only problem is surges after meal. The use of a rapid insulin to try to address that can be very problematic, particularly when you still have lots of natural insulin production. Insulin use when you only have pre-diabetic blood sugars can cause real problems with hypos and you should only undertake that very carefully with your doctor.
I understand what you are saying Brian and I don't disagree that I should wait until my fasting readings are higher to start a basal insulin and I wouldn't consider fast-acting until my readings don't come down quick enough. One of my concerns is getting frequent lows. Right now my fastings are running about 108-115. To clarify, the 265 and 250 readings were 2h pp in the evening (yes, I ate cereal before bed). The urine and ketones showed up in an evening test and not after exercising. I always wash my hands before I test and have compared my meter to the lab during yearly fasting tests so I know it's accurate. I've read that Metformin can help somewhat,but doesn't preserve beta cells directly, but thiazolidinediones have been found to preserve beta cells. My purpose now is to preserve beta cells, so I don't have to go on insulin for as long as possible.
The comment about my GAD test being barely readable and has some level of noise in the test interests me. The studies I have read (particularly "Latent Autoimmune Diabetes in Adults (LADA): Usefulness of Anti-GAD Antibody Titers and Benefit of Early Insulinization")compare high and low titre GAD antibodies but use U/ml as units while mine was in nmol/l. I was trying to convert it to determine if I have low titres but had no luck. I went on the MAYO clinic site http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+In... to read the test interpretation and from there it seems like anything over .03 was significant. So if you are able to determine high versus low I'm curious to know how.
Also, I forgot to ask… How important is it to stay under 140 at 1 hr in preserving beta cells? I tried reducing meals to 30 g carbs and still spiked at 167. I’m lowering it to 22g to see if I can stay under 140 at 1 hr.
I was diagnosed as diabetic at 1 reading of 279, so I disagree with that part of what you're saying. Of course I had multiple other red flag symptoms and lab results and I should have been immediately hospitalized as I was in dka. But still, my doctor did get that part right at least.
Please understand that the study you refer to "Latent Autoimmune Diabetes in Adults (LADA): Usefulness of Anti-GAD Antibody Titers and Benefit of Early Insulinization" started insulin in patients "early" when their HbA1c reached 7%. Mellita has been a passionate advocate for starting insulin early instead of messing around with ineffective oral mediations and waiting until you end up in the emergency room and I totally agree with her. And I even go further than Melitta and feel like everyone deserves early effective treatment (yes even T2s).
And yes, I believe that sustained blood sugars over 140 mg/dl start to do damage and in particular cause damage to beta cells (glucotoxicity). The standard of treatment for all people should be to minimize damaging blood sugars (over 140 mg/dl) and to not treat to "failure." Current T1 and T2 approaches only escalate treatment when your A1c goes above 7% or you end up in the ER close the "bad stuff." We deserve better.
