Hello everyone! I am not entirely new to diabetes as I had gestational twice, but I am new to what I am dealing with now. I presented with the typical symptoms of thirst, frequent urination, could eat a whole cow, and unintentional weight loss. I made an appointment to see a GP and he decided to run and A1C and other things I can’t quite remember. Well 2 days later on a Sunday no less I get a call from him saying that my A1C was a 12.6. I freaked because I knew that was not good. He instantly called in some Metformin and a bit later a cholesterol med. I asked him about LADA/1.5 and he admitted to not being familiar with that, but decided to bring me and test for antibodies since I asked. A week later the results came in and he said I was positive for Islet cell antibodies, but that everything else was fine and my c-peptide was normal. I am still not certain what all this means exactly. He then decided to start me on Insulin right away since I had experience with it and referred me to an Endo. My doc was great in admitting to me he was thoroughly confused with my labs. Well, yesterday I saw the Endo and he took me off the insulin and started me Victoza and glipizide. I asked him about the antibody test and he dismissed it and said only time will tell if I am type 1, so we are going to treat it as type 2. I have a family history of type2 as well as the gestational. Now I’m not saying he is wrong, but all the reading I have done says that antibodies are not present in type 2? anyone have any thoughts? I am 5’8" and 170. I am obviously not thin, but I am not significantly large either, kinda just average I would expect. I cut back on all my carbs and have increased my activity (probably not enough) but I am trying. My fasting has been staying around the 200 range. I just don’t feel as though I got any more answers after seeing the Endo. I would appreciate any thoughts on the matter. A friend of mine is an E.R. physician and she is confused as well and suggested me seeing another endo. I did look up the doctor I saw and he doesn’t actually treat patients with type 1, so I wonder if this is something that isn’t on his radar so to speak. I apologize if this is long and/or doesn’t make much sense. I had so much information thrown at me recently I don’t know which way is up.
I don’t know about the antibodies question but you’ll find plenty of T1s around here who wouldn’t regard that as anything like an acceptable fasting number. If that’s the best the non-insulin treatment can do for you–and that’s a real “if”; I don’t know much about those medications–but if it is, it’s nothing like good enough.
I would recommend getting a second opinion (seeing another endo). My Dx is Type 2; however, due to a number of anomalies in my case, my PCP referred me to an endo for LADA testing. In my case, the antibodies test came back negative and, since at the time my c-peptide was more or less “normal,” and because I was already on insulin due to intolerance of all the “Type 2 meds” I tried, the endo left my Dx as Type 2. He said he would definitely have changes the diagnosis if the antibodies test came back positive.
In my case, my treatment plan would not change regardless; however, your case (and every case) may well be different. There are many approaches to LADA, and it does tend to progress slowly; however, I think you should be seeing an endo with a better understanding of LADA and Type 1, so that you and your doctor choose the best plan for you.
this might help
I think you should see another endo too.
Crazy right? 160 was lowest fasting and that’s when I wasn’t hungry for dinner and had like a small snack only. I was surprised to be taken off the insulin. I am just confused
thanks for this! @MarieB This site is one of the reasons I asked for the antibody testing. I have another appointment with my GP this Friday and hopefully I can see another Endo sooner rather than later.
Adding my voice to the chorus . . . see another endo. If antibodies are present, it seems unlikely that you have T2. As far as I have been able to determine, T2 does not–ever!–involve an autoimmune attack on the islets, which is what the antibodies are a marker for.
But now for my favorite soapbox (those who have heard me say this fifty times before may be excused): I don’t care whether someone is type 1, type 2, type 97, or type 106. At the end of the day, achieving control is what matters, and you need to do what it takes to accomplish that–whatever that may be. Consistent fasting BGs in the 200 range are simply unacceptable in any regime. If that’s the best you can manage without insulin, then . . . . fill in the blank.
I’d also encourage you to find a specialist in diabetes whose jugement and expertise you trust, and start self educating yourself on diabetes management-- there are a lot of great books out there on the topic and once it becomes more clear if you’ll be on insulin or not we can probably custom tailor some recommendations for you.
I wouldn’t worry too much about whether you get labeled as T1, T2, LADA, whatever… at the end of the day you’re in individual, with complex physiology who is going to have to manage their blood sugar and whatever they categorize it as doesn’t make much difference…
I strongly believe that you need to get the correct diagnosis because it can make a big difference in ability to get the technology and supplies you need. If you are Type 1 or LADA, you will have a much easier time getting insurance coverage for things like pumps, CGMS, and a high-than-normal number of test strips.
So I agree with everyone who says that you should see another endo–one with Type 1/LADA experience.
Thank you all for taking the time to respond. It is not the label I was most worried about, but the right diagnosis so I am given the proper treatment. I was just worried about having the antibodies perhaps my treatment should be a different route than him solely treating me as Type 2. I don’t know if that even makes sense.
One more vote for getting a second opinion. Saying only time will tell if you’re Type 1 is like saying we’ll wait until you experience a real health crisis before we consider insulin. You have antibodies and you have diabetes. That is the usual definition of Type 1. You may also have insulin resistance but if your body is no longer producing enough insulin forcing your pancreas to squeeze out every last drop is not going to help you in the long run.
It may take a few weeks with any form of treatment to get your fasting numbers down to around 100-120 or even 140, If you A1c is 12.6 you’ve been running very high for at least 3 months. So you might want to give your current treatment a chance but I would think in terms of a few weeks not a few months.
If he tested your c-peptide when your blood sugar was very high (any idea what it was at the time), the c-peptide may appear ‘normal’, because your poor pancreas was sputtering as hard as it could to put out insulin.
Your presentation sounds very much like type 1 (or Lada). Your gestational history, also makes type 1 more likely. THe fact you have antibodies is a clear giveaway for Autoimmune type diabetes. The fact that your a1c was 12.6 is also an alarm. From what I have read, even in type 2, if a1c is that high, then you should be on insulin (each medication is only expected to reduce a1c by about 1%, if I remember what I read correctly). IF you were type 2, then a combo of 4 drugs might bring you down to about 8.0. Still not ok.
Glipizide is not a good drug. It forces your pancreas to put out more insulin (too bad if it can’t). My only advice echoes everyone else’s. Change Drs. Go back to your GP and get back on insulin. Find an endo who will treat you properly. You may or may not need an insulin sensitizer as well (such as metformin).
You need an endo with T1/LADA experience. Run do not walk to a new endo practice.
I know someone who was diagnosed as T2 for quite a while–before actually being correctly diagnosed as T1. Echo…2nd option…
That is depressingly common. See Melitta’s post (Marie provided the link up near the beginning of this thread).
And piling on to what has been said, this really does sound like it could be LADA. You need a definitive diagnosis, and you certainly don’t have one yet.
I don’t remember if a specific number was given for c-peptide I’m sure he did, but I don remember he said it was within normal range. Someone else told me today that I would most likely need to be positive for at least 2 antibodies to be considered type 1/LADA? I read up on Victoza and it’s side effects are very scary.
I think one positive is enough, but unsure. As to Victoza side effects? Read the label on ANY med and you’ll find scary side effects. Personally, I can’t take any of the D meds - I tend to find bad side effects. As a result, insulin quickly became my only option. Despite my fear of needles, I have managed and am not really unhappy with the choice - it has let me maintain very good control most of the time… Had a bit of weight gain from it, but otherwise, doing good – it isn’t something to fear.
That’s interesting (and alarming) that this endo decided to treat you as a type 2 until proven otherwise…I had the same symptoms as you did, and was put on insulin immediately - my endo said, like some others here, that the label doesn’t matter as much as whether or not the treatment is working for you. But more importantly, he also told me the opposite - let’s assume you’re a type 1 until proven otherwise. And with an a1c and fasting levels that high, insulin seems like a no-brainer. I echo everyone else - go get yourself a new doc ASAP!
If this were happening to me, I’d disregard the order to ‘be off insulin’ and use the insulin that I got from my earlier diagnosis. If my BG moved to a better range, I’d have evidence to convince the current endo to keep prescribing insulin and supplies. If he isn’t swayed by evidence, I’d definitely be off to another endo. I very much agree with @David_dns - we should do what we need to in order to control our BG, regardless of the label we get assigned.
I think that’s what I’d do, too. My situation is not all that different in some way… While I came back negative for antibodies, my C-Peptide is low. My docs decided not to change my diagnosis, however. – BUT, the difference in my case is that my treatment is using insulin, so, since a change in diagnosis would not would not change my care plan, my doctors feel it unnecessary to further investigate the validity of the Type 2 label.
… of course, they don’t have to fight for every nickel from my insurance company - at least not on a continuing basis - like I do…