Shannon I very much have to agree with you that I am not a type 2 diabetic. I have found that with our medical system you are either DKA (the obvious) or guility of being type 2 unless proven otherwise (and it is up to us to prove). I spoke with my new PCP and being a PCP his conclusion is type 2. Today I went and picked up my lab results (which I will be taking to an this new endo) and noticed that not only am I positve for GAD (5.9 ref <1.0) but also for IA-2 (48 ref <0.8). I just don’t undestand the thinking of the PCP’s in this situation. To me it is completely obvious that LADA is the diagnosis. My insulin level was 12 (ref < 17), CPeptide was 2.5 (ref 0.8 - 3.1) and my BG was 167 mg/dl. The most significant marker to me was my A1C going from 6.1 to 6.9 just over a month so things are shifting. This new PCP has placed me on Junivia (as he is thinking type 2) not even touching the BG levels.
Thank you all so much for your help and support. Having others in my situation take the edge off of the process. I am so fortunate to have found such a great support group.
I was serious about the whole waiting list at the endo thing. I was scheduled to have my scheduled appointment in a week and a half and they called me yesterday with 3 openings for this monday. I’ll be going in early. I am struggling like you to get a proper diagnosis, I don’t respond to oral medications have a low c-peptide and I’m getting pretty alarmed at my blood sugar readings. Over the last two years I’ve been consistently rebuffed on my requests for autoantibody tests and a basal insulin. Getting a proper diagnosis and appropriate treatment is very important. Hopefully, we will get some movement at this appointment, I’ve really lost patience.
My original appointment for the Endo was Feb 11, 2010 but the week before I called and was able to get it moved up to Feb 1, 2010. I think I will take your advice and call weekly over the next few weeks to see if I can slip in a little bit earlier. Seems wrong that you are getting constantly rebuffed on antibody requests. If it wasn’t for my son being a type 1 then I might be in your situation. My son is 16 and was originally diagnosed as type 2 but that soon changed after he seen a ped endo who ran the antibody panel and seen he was producing antibodies. But he was in a situation where he was elevated BS but no ketones. So fortunately the PCP’s atleast have some reason to have tested me… but it wasn’t after a much heated debate. The first PCP only tested me for GAD but the second tested for IA-2 (which both have now tested positive). Now I am interested about insulin antiobodies.
Let me know how your appointment goes… I am interested in your outcome.
Metformin could work for a Type 1 in the honeymoon phase because it works by reducing the amount of glucose your liver makes AND increases your sensitivity to insulin. So if he has some pancreatic function, it would help at first.
I was initially mis-disgnosed as a type 2. For almost six months, I was given metformin in increasingly higher dosages (until I was at 2000 mg/day). During that time, my BG was never below 200 mg/dl, I lost 40 lbs, and I ended up in the ER in DKA.
The metformin did nothing for me except make me really sick (I vomited nearly everyday while taking it). As it turns out, I am very insulin sensitive, so the metformin didn’t help increase my sensitivity.
So, I was basing my opinion on my own personal experience with it. As with everything else, YDMV.
Not all Type 1 is auto-immune. There is a 1a - auto-immune, and a type 1b - Not autoimmune (idiopathic) diabetes. It usually found in minority populations, but it still exists. Also antibodies are only positive about 80% of the time, even in auto-immune diabetes. just a clarification.
Well, my appointment was interesting. In a total surprise, my HbA1c came in at 6%. It is as though my HbA1c is unrelated to my meter readings. My endo did agree to the GAD65 test, he apparently never/rarely orders the other tests. I was rebuffed in my requests for insulin. We had some discussion on whether I am insulin resistant, he thinks I am and should lose weight. He thinks going on and off metformin twice with no change in HbA1c or meter readings says nothing about insulin resistance. He thinks if I lose weight it will help, I am 205 lbs, 15 % bodyfat and he suggests I should get down to 195 lbs and 8% bodyfat. I’m just not sure I could do that, I’m a 50 year old man not some teenager.
In the end, he wants me to take Actos, suggesting it will help my insulin resistance. That is three drugs. I might be able to increase the Actor further to max dose, but that is the end of the line on meds. I did discuss insulin with him, but to no avail. I’m disinclined to start insulin without my team being involved with my decision, but I am still concerned. My morning fasting is up to 140 mg/d and I am able to get under 140 mg/dl 2hrs after meal less than half the time. When I exercise, my blood sugar spikes and takes too long to come down. In truth, some of the discussion at my appointment was bizarre and confusing. My endo was not prepared for my questions and said things at times that were weak or just wrong. I know I am a difficult patient, but it left me with questions. I’ll have to give some thought to things.
While I can understand your concerns about fasting and post-prandial numbers, I think your endo is probably correct in assuming insulin resistance. I’ve had my A1c differ significantly from my meter readings. This was usually due to high overnight BG and significant post-prandial spikes. Now that I wear a CGM, I see it all very clearly.
You are making insulin (otherwise, you’d be seeing much higher numbers), which is great. It is important to remember that T2 is about a lot more than weight. Genetic factors and age significantly outweigh (pun intended) lifestyle in determining likelihood of a T2 diagnosis. Weight loss can help with insulin resistance, but for some, it doesn’t even make a dent. You might fall into that bucket.
You wrote that you’re taking three meds. Aside from Actos, what else are you taking? There might come a time when you need insulin, but I wouldn’t rush it. An insulin regime is a whole new life, and one that T2s rarely escape after starting. It’s not fun.
At least your endo is sending you for the GAD65 test (which really is the “benchmark” for diagnosing LADA - the other antibodies are considered rare in LADAs). You’ll know once and for all where you stand. Please keep us posted.
Thanks for your thoughts. I’m currently on max doses of metformin and Byetta. While I may well be insulin resistant, I’ve followed Bernstein mostly over the years I’ve been diabetic I’m not clear that IR is the leading factor in my blood sugar control. I have been tested with a low c-peptide, so I am also likely insulin deficient. If my insulin resistance was a primary factor in my condition, one would expect that Metformin would have some benefit and it has no effect. I am also quite muscular having undertaken weightlifting over the years and changed from being “skinny fat” at 30% bodyfat to my current status. But you are certainly right, t2 is about more than weight and insulin resistance happens for other reasons than simply being overweight.
I came to terms with moving to insulin some time ago. I’m diabetic, I’ll always be that way. Insulin won’t make that go away, and it won’t necessarily make life any easier. I’ll always have to watch what I eat and exercise. But I already take two injections a day and I have to take those injections an hour before meals. And I am starting to see complications emerge, despite the control I’ve had the last few years and if I am going on insulin anyway in the very near future, I’d like to be on insulin while still preserving as much of my remaining beta cells as possible.
After a much anticipated appointment with the Endo the time has finally arrived. My appointment was scheduled for Feb 1 but yesterday the Endo informed me that they have an appointment for today. When you spend the past few months pouring over information to become more knowledgeable you are apprehensive as to the outcome. After having all the labs performed to include antibodies, BG testing 4-6/day, and what I now know about LADA I will be very well prepared for a good discussion with the Endo. I am sure that most of you will agree but the fatigue associated with higher blood sugars wears on you after awhile and I look forward to feeling like myself again. I best described it to my wife where the fatigue feels like your body isn’t getting any oxygen, in this case sugar, for energy.
So my appointment is at 2pm and I look forward to sharing my results with all of you that have given me some excellent input.
Fine. When I made my last medication change last summer, I experienced what I called a honeymoon. My fasting levels dropped 30-40 points and at one point I actually ate a 90g burrito and had no rise in blood sugar at 2hrs. That lasted about two weeks. Despite my initial gloom, the second day of actos my morning fasting was 105 mg/dl. You can guess what is happening. Honeymoon. Last time, I was a bit loose (did I mention the Burrito), this time I’m buckled down. I’ve restarted the Dr. B level diet (< 50g /day), started intermittent fasting on the weekend and upped the exercise. By all indication, I am having another honeymoon. My postprandials have all been on target, < 10 mg/dl rise, my fasting is down about 20 mg/dl and I’ve lost three pounds. Most markedly, during exercise, I am seeing a 10 mg/dl rise, not a rise into the 200s and beyond which I had before. It has now been two weeks, my last honeymoon lasted a few days longer. I’m expecting this one not to last, but I’ll do everything in my power to give it a chance (no burritos).
As I looked further into the specific regime my endo put me on, I found that the reason he hyped it was the focus of Dr. Ralph Defronzo’s talk during his 2008 Banting lecture. At the time he argued that the ADA stepwise treatment protocol was harmful, that diabetics usually did not respond well to medications and needlessly suffered years of inneffective treatment. Instead he suggested that type 2s be immediately put on the most effective medication regime (Metformin, Byetta and Actos/Avandia). If that worked, then it freed diabetics from years on small incremental medication changes and the resulting high blood sugars. If it did not work, then you could move on to insulin early and avoid the fruitless years of high blood sugars. Moving effectively quickly to find effective treatment avoided risks of complications and further loss of beta cells. Not too shabby an idea. Of course I’ve not seen much move from the ADA to adopt it.
I’ve pretty much decided to wait out this medication regime. In three months we can see if my readings have improved. I’ll keep an eye on things, if my blood sugar has a blow out, I’d see it an handle it, but I’m pretty tight on the lifestyle thing.
Overall, this is fantastic news. I’m assuming by “honeymoon,” you don’t mean what is traditionally referred to as the T1 honeymoon.
I think that by increasing your exercise and eating lower glycemic index foods, along with the new meds, you’ve managed to increase your insulin sensitivity, which is fantastic. You might be surprised at how long and how much that kind of change can impact your blood sugar.
Congratulations and best wishes for continued success!
Yes, by honeymoon I mean a resumption some useful insulin response which presumably will at a later time fail. Of course, diabetic would gladly take such a gift. Given that I’ve followed strict diets for a some time already it is not really a change in glycemic index, just carb levels which already were low. I doubt I will get any marked increase in insulin resistance from exercise, I’m lean and muscular already. What I will get if I have a little insulin available is better glucose uptake and the blood sugars that go with it. I already see that by the improved blood sugars when I exercise and afterwards. Thanks for your best wishes.
It has been two months since I started this discussion and today it is confirmed… LADA. The Endo even had to ask me how I was feeling. My response, “Fine”, his response, “With these numbers you shouldn’t be feeling fine”. I will admit that having a much deeper understanding of LADA made our discussion (between myself and the Endo) much better as we could get down to business without the much longer discussion of defining LADA. What made me most pleased is when he said that a year ago he would have started medication but recently he was convinced that early MDI was beneficial in presevering what we could of the beta cells and hopefully give some extension to my honeymoon period.
So with that said we are starting the insulin process and moving, hopefully within the 3-6 months, to a pump. I so much look forward to feeling like my old self and having the energy that I use to. I cannot thank all of you enough for helping me along learning all about LADA… and Shannon I am glad you don’t have to bet your next paycheck anymore… you were right on target. I am so fortunate to have found such a great community. My hats off to every one of you.
Mitchell — So glad that you finally got an accurate diagnosis and way to go on taking this all in stride. Have you taken your first insulin injection yet?
Congratulations on finally getting your correct diagnosis. You must be very relieved. I’m also relieved because I really couldn’t afford to lose that paycheck
It sounds like you’ve already wrapped your head around everything, so the hardest part of this new diagnosis is done. The other helpful thing is that you and your son can experience T1 life together.
If you have questions or if there’s anything else I can do, please let me know.
It is good to hear that you finally have a diagnosis. While all of us would certainly prefer to hear the words “we checked and you no longer have diabetes,” once you come to terms with have D you just want to get on with life and treat it properly. Now perhaps you can put that uncertainty behind you. I am quite impressed with our attitute towards all this (as your endo is probably as well). For many people, getting the news that they have LADA or T1 is like getting told you have terminal cancer. Of course, you know that what you have is quite different, a chronic condition no doubt, but in this day and age one that can be managed. I hope all goes well for you.
