Thank you all for the warm welcome! I am hoping you don’t mind if I share my story with you.
I will try to make this as brief as possible.
First, a family history. My father was a T1 who died in 1970 of diabetic complication when I was 4 years old. His mother had diabetes and died after being in a coma, in 1967. All of his brothers and sister subsequently developed diabetes in their 50s or later. I have a couple of cousins on that side with it also. So it is fair to say that diabetes runs in my family. Also, my mother has an autoimmune disease, temporal arteritis, which is in the lupus family. She has two sisters who also have an autoimmune disease.
My mother was fanatical about keeping my blood sugars checked while I was growing up, and I took it seriously also when I became an adult. I usually would request an A1C when I had my yearly Pap smears. I had perfect blood sugars all through my 20s and most of my 30s. I am overweight and pretty much always have been, and I put on a lot of weight in my mid-30s. I had a very serious family crisis and basically ate my way through that whole year and put on a lot of weight. I have struggled since to get it off, but to no avail.
About 6 years ago I had a hysterectomy, and all was going well health-wise, but a few months after the surgery I started feeling completely spaced out and could not focus. I checked my blood sugar on a home meter and it registered nearly 300! I went straight away to the doctor and she put me on oral meds.
Basically what happened is that the oral meds did not work for long. I tried Byetta and it was too unpredictable, but I started on Januvia and that worked great for about a year. Numbers started creeping up, so I started on insulin and Januvia. Worked okay for awhile, then numbers started going up again. I switched from a family practice doctor to a new clinic in town that specializes in diabetes care and they put me on a higher dose of insulin, I took classes, and started getting better numbers. Then the numbers started going up again, so we switched from Levemir to Lantus and added Victoza about a year go. That seems to have done the trick, as my A1C went from an all-time high of 10.2 down to about 7 right now.
Here are a couple of issues I have. I have a suspicion that I have type 1.5, based on several factors. I have BOTH parents with some form of autoimmune disease, my father was type 1, etc. I have asked my doctor why she never ran any blood tests to see how my pancreas is functioning, and she said that basically it was not necessary because I would be treated the same way regardless. She said the blood tests are not accurate and will not really tell me how my pancreas is functioning. She also indicated that I am definitely a type 2 because I am FAT. I cannot begin to tell you how angry and frustrated this makes me.
I have a paternal first cousin who is much, much larger than I am and is on Janumet only. She lives in another town and her doctor ran all the blood work to see how her pancreas was functioning. Why the %^&# did her doctor think it was prudent to run these tests and mine did not, given my family history?
My second issue is this: I said that my numbers have been great on the Lantus and Victoza. And they are, but lately for the past month they have been almost TOO good. I wake up and my BS is 75 or so and if I don’t eat regularly throughout the day, I have a low. I have adjusted my insulin dose to a lower dose and have been kind of playing around with the right dosage, but I have not quite gotten there yet. I do exercise, and of course that brings numbers down too, which can be kind of scary if they get too low and I get shaky. I am also ridiculously hungry more often this last month, more so than I have ever been.
Sorry for the novella, but I was wondering if anyone had any input or advice as to what I should do about blood tests. I personally would like to have some tests run, even if it is just for a baseline for future tests. As to my second issue, did my pancreas suddenly decide to start working? It is giving me its “last hurrah” before it goes out on me completely?
BTW, I have an appointment this Tuesday with my diabetes doctor, so I can hopefully go with more information and insight after talking with you.
Sorry to hear of another person getting the run around from a doctor regarding appropriate testing. Is the doctor who refused an endo? Is it possible to change to a more cooperative doctor?
You need testing to establish type for insurance purposes, aside from the reasons of receiving proper treatment. A T1 or LADA will be eligible for services & devices that a T2 may not i.e., a pump & CGMS, should you want these.
The tests you need are a C-peptide (measures insulin production) & a GAD antibody panel (measures if your pancreas is under autoimmune attack). The results from these tests will yield valuable info. I don’t know which test she feels is inaccurate, but having both is important.
Your pancreas has gotten a break from your previously high BG. The more normal BG is, the more beta cells are being saved from burning out. If you are LADA, spurts of natural insulin are usual. Have you ever been on Lantus without Victoza? Hard to tell if it’s the combination that’s helping. Another reason for proper testing. You may not need Victoza & why take meds you don’t require?
There are thin T2s & overweight T1s. It’s not that simple. So sorry she made you feel badly.
I think many of us have struggled with getting a proper diagnosis. I was “diagnosed” in 2005 as a T2. Why? Because I was diagnosed by my GP rather than in the ER. I had a terrible time getting proper tests. I was “granted” a c-peptide after 2 years of asking. It came in low. All my doctors dismiss it as meaningless. The test is not reliable, most diabetics don’t produce enough insulin. Finally I was given a GAD65 (one of three antibodies that can positively identify T1), but it was negative. As I studied the matter I found out that the anibody tests are also somewhat unreliable, only 85-90% of T1s test positive for antibodies. And given that most doctors had no interest in a specific diagnosis and did not appear competent to perform diagnosis, I started to reconsider. I finally came to the conclusion that I was unlikely to figure out what was exactly wrong with me and for the most part the label of T1 or T2 doesn’t really matter. What really matters is that you get proper treatment. And so today, I follow an intensive insulin regime. I keep my blood sugar tightly controlled. If you are truly a T1 (and that is what a diagnosis of LADA means), then moving quickly to insulin to maintain tight control is exactly what you want to do.
Our fellow member Melitta has been very active and written quite a bit on LADA misdiagnosis.
ps. And your experience with having suddenly normal blood sugars is common. Some people call it a honeymoon. I had a number of them, triggered by medication changes, they lasted 2-4 weeks, I became “non-diabetic,” one time I ate a burrito with 100g of carbs and didn’t go over 140 mg/dl. But it didn’t last.
pps. I consider myself as having diabetes, I was “diagnosed as T2,” as to what kind of diabetes I have, “I don’t know.”
I’m saddened that you needlessly going through this regarding testing. Especially with your family history their is no reason not to be tested for the antibodies and C-peptide.
Thank you, Gerri, for responding! To answer your questions, I was put on Lantus alone (with Metformin) because I needed a bump in dosage and the Levemir was not cutting it. I did the Lantus for about a year and the numbers started creeping up again. I am the one that actually did the research on Victoza and asked the diabetes doctor what she thought about it, and she agreed to let me try it. I worked very well, and as I understand it, they use it a lot in their clinic now.
The clinic I go to is staffed with an endocrinologist and an internal medicine doc specializing in diabetes. They also have certified diabetes educators and nurtitionists. I feel like I am in a good place for the most part. I am going in Tuesday and simply insist on a C-peptide and GAD, if only for my own peace of mind and to establish a baseline for future tests.
bsc, thank you for your reply!
What you posted in your first paragraph is pretty much what my doctor said. And she added to it that until I lose weight, she will always operate under the assumption that I am insulin resistant more than I am insulin deficient. I have tried like hell to lose weight, and I keep losing the same 10 pounds and gaining them back. Funny thing is I don’t ever gain any more weight, I am stuck at a “ceiling” and never go past it.
Regarding the lows, I had a very scary morning today. I woke up at 5:00 a.m. feeling rotten. I made it to the kitchen and tested, and my bs was 58. I kind of panicked and grabbed a soda and took some sips of it and then got a piece of bread and put a dab of peanut butter on it. It came back up to 100, but it was pretty scary. I have been cutting my insulin dose and my Victoza, but I am wondering if I am having a short little “honeymoon” as you say.
Stevek, that is was I keep trying to get across to this clinic. I have a rampant family history of diabetes, both T1 and T2. My father had the worse case of the whole family. He died at the age of 27. Mind you, it was 1970 and there were not even close to the advances made in medication and treatment that there is now, but I do know genetics play a role. Every one of my aunts and uncles (his siblings) have it, two cousins have it, a grandparent had it. PLUS, on my mother’s side there is autoimmune disease.
You would think a doctor might at the very least find it interesting to study the child of a T1 diabetic and autoimmune affected person. I swear, I think they just get in a hurry and just want to give you your meds and get you out the door.
Casting you as a Type 2 is quick and easy.
I found this post interesting because, as someone who was diagnosed w/T1D at the age of 3, I have always preached how T1 and T2 are two completely different disorders and have absolutely no connection with one another. Anyway, I recently read “Diabetes Rising” and was surprised to learn that some theories point to the two “types” of diabetes being possibly related, and some research indicates that T2 may have an autoimmune component as well (albeit, one that is triggered by a metabolic state). The reason I point this is out is because the whole “Type 1” vs “Type 2” thing is a fairly recent naming scheme in the history of diabetes and I am sure it won’t be long before those labels change as well.
Having dealt with D for many, many years, I have one big piece of advice for you: If you are not happy with how you’re being treated by a doctor, CHANGE DOCTORS. At the very least, you should be getting antibody and c-peptide testing to determine what your pancreas is doing. A low c-peptide and presence of antibodies would indicate you’re a T1, whereas normal to high c-peptide levels indicate T2 (even if antibodies are present; keep in mind that some people develop antibodies after taking insulin for some time).
These tests are not costly and should be covered by your insurance. The doctor has nothing to lose that I can see by ordering these tests. Having these results would also help indicate what treatment method would work best.
One other thing: From what I understand, T2s generally don’t have trouble with LOW blood sugar because they are generally fairly insulin resistant (at least that’s always been my understanding). If you’re having trouble with lows, that might be more indicative of your being a T1.
And, yes, you can be overweight and still develop T1.
I am another vote for the change in doctors. You mentioned your cousin that lives in another town. You know her doctors were willing to run those tests for her. Would it be possible for you to go there – at least to get the tests done. If a doctor is not meeting your needs (and your writing this post says that this is something important to you), then you need to find someone that will. Unfortunately, sometimes it takes trying out several doctors before you find one that is a good fit.
If you know in your gut something is not right, don’t accept someone telling you that it is.
Regardless of whether you change doctors or you convince this one to run the tests, make sure you get copies of your labs. You might be at the very bottom of the range and your doctor could tell you that your c-peptide is normal – well, it might be normal today but you are only one step from falling over the edge. If you get your copy, you know exactly where you stand. I have been burned at least 3 times that I know of with doctors giving me misinformation based on what they “saw” on the labs. One of those almost cost me my leg.
Also be sure you get the exact number(s). Too many people are told their test results are “normal” without being told what that means. For some tests, it is not “normal vs abnormal”. As a Type 1 diabetic (including LADA) “normal” would be very low or none. As a Type 2 diabetic “normal” (typical for type 2’s) would be quite high because Type 2’s produce more insulin but are unable to utilize it easily due to insulin resistance. If I get one of those lab reports that says “x test normal” I’ll ask for the actual test results. One good way to go is to have the doctor indicate “copy to patient” in the lab orders, that way the full lab report will be sent to you, not the doctor’s idea of what you “need to know”.
Kelly, thank you for your input. I feel like this clinic will order the tests for me. She basically talked me out of it last time, much to my chagrin, because she said insurance would not cover it probably, I did not really need it, the tests were not accurate, I’m fat, etc., etc…
I have always been of the belief that you are the one ultimately responsible for your own care, and there is really no excuse not to be educated on a disease, especially with all the technology out there. My mother has had her vasculitis for over 25 years now, and I have done exhaustive research on it so that I can help her make decisions on her care, and I am trying to take care of myself in the same way.
You better believe I will get those results in my hands when they come in! I want to know the exact numbers. I will bring them here and get some advice on them and then go from there.
Thanks you so much for your input! I would say that I am pleased with the care I have received overall with this clinic, and I do admit that they have definitely educated me on my disease. But like you, I do not see what a doctor has to lose by having that information available to them. I mean really, what would it hurt? I have my appointment Tuesday and i feel sure she will order the blood work if I insist. She might even want to order it, given my latest bout of low blood sugars for no reason.
I made the mistake of sharing with my doctor how heartbreaking it was to lose my Dad at such a young age and how it was such a mystery how and why he died. I get the feeling she thinks I “want” to be a T1 like he was, which is far from accurate. The longer I have this disease, the more I do understand how and why he died. I just want to have a good baseline of information so that I can know what is going on in my body.
I don’t know, maybe doctors don’t like it when their patients get “too educated” on a subject. I happen to think it is my obligation to be as informed about my disease as I can be. You are your own best advocate. My opinion will never change on that.
I will keep my fingers crossed for you that she does them for you.
Being able to get online and learn about stuff has really been a lifesaver for me. When you can actually talk to other people that went thru stuff and find out their doctor ordered certain tests, you know what you need to ask for. I was diagnosed pre-internet age so things are really different now.
Like Zoe said, you need to find out what normal means. I like to find out what optimal is!
I’ll do that Zoe, Thanks!
Hi Sparkysmom: There are quite a few people here on TuD who have Type 1 diabetes but were misdiagnosed as having Type 2 diabetes because they are adults and overweight. Weight has nothing to do with whether or not you have Type 1 diabetes–even some kids these days are found to have Type 1 and be overweight. I have been writing/blogging about misdiagnosis for awhile, and a number of people on TuD (Susi, Lila) have really encouraged me to address the fact that many of us test positive for antibodies that indicate Type 1 diabetes (GAD, ICA, IA-2) and are “no longer at fighting weight.” BSC linked to one of my blogs, but another is my Field Guide to Identifying the Misdiagnosed Type 1 Diabetec, and I think you’ll be able to identify with what I write. I am sorry for what you are going through–use TuDiabetes to get the support you need, and congrats to you for insisting on proper care for yourself.
Melitta, I have really enjoyed reading your blogs. I am so grateful that someone such as yourself is willing to take the time to explore and learn about the different types of diabetes and share your information with the rest of us. I am anxious to get the ball rolling next week with my doctor and see what my test results are, if only for my own peace of mind.
I think that “optimal” is a better word to use than “normal”. The problem with many lab tests is that the question is raised, “normal for who” or “optimal for who”. I guess that is part of how the doctors make money, interpreting lab results, some of which actually do take specialized knowledge, some of which can be figured out by us by doing a bit of research online, and some of which are obvious when it doesn’t apply. My last A1C was 6.5 and it said “Diabetes”. When it was 6.3 it said “high risk for diabetes”. I assume the people that have worked to get their A1C’s down to the 5’s or even 4’s list as “non-diabetic” which of course is not the case.
I think C-peptide is one of the hardest to qualify on a lab report since there is no “good or bad”, no range of “normal”. But with a bit of information we can see it as defining likely type 1 vs likely type 2, or use it to compare to previous tests to see how much less insulin we are making. For instance I had two about 2 1/2 years ago (different labs), one was .38 and the other .70. I would be interested to see if I took one now if it said.00 which I suspect it would.
Hi there.
You should definitely ask for the C-peptide and antibody tests, and change doctors if your current doctor isn’t willing to order these tests. Low C-peptide and positive antibodies are more indicative of T1.
However, a word of warning. Doctors selectively ignore data. They see what they want to see and conveniently ignore all other clinical evidence. I suspect that in your case, all they see is Fat Person and so the immediate conclusion is T2. I know you haven’t had the tests done so far. But even if the results come in and they point towards T1, it’s perfectly possible that they will still insist you are T2.
How do I know this? Because that’s what happened to me. Diagnosed in full-blown DKA (classic T1 presentation). Low C-peptide. Off-the-scale for antibodies - they lied to me and told me I tested negative for antibodies. I only discovered my antibody results a year after diagnosis. Tests also indicated that I am not insulin resistant. But my official diagnosis is still ‘atypical T2, functionally T1’. By definition, being antibody positive makes me Type 1a. But some doctors go by phenology, i.e., fat people cannot by definition be Type 1. However, by other definitions, autoimmune destruction of beta cells does not occur in T2, and since I have clear evidence of autoimmune attack, I cannot be T2. By definition I also cannot be LADA since mine was rapid onset with DKA.
So please demand that those tests be done, but be warned that even with the results of those tests, you’ll still have to combat doctors’ prejudices. But at least it will be a step closer to knowing exactly what is wrong, because that takes you a step closer to knowing how to fix it as best you can.
Your experience actually makes me a little angry! “atypical T2, functionally T1” is a mouthful. I have been reading about all the variable values and even how the numbers can vary from lab to lab, so I am trying to go into it with my eyes wide open. Having been labeled T2 and being flat out told it was because I am fat, it really would not surprise me what my current doctor’s office would say. Like you said, they see a fat person and all they want is for me to go out there and exercise and diet. Okay, I agree with that, I do need to eat right and exercise, just like everybody else does. I maybe even need to do it more becuase of my diabetes. But if I am being given the wrong treatment (i.e. too much insulin, not the right kind, etc.) based on their preconceived notion of my type WITHOUT having run tests that are available to them, well that just makes me little to no confidence in my health care provider.
I say, just ran the *&^@$#! tests even if it is just to shut me up! I’ll keep you posted.