Feeling lost and confused about my diagnosis

Type 1 and LADA New to Type 1 Diabetes
1

I need some help. I've met with an Endocrinologist twice, but she's very hard to talk to / the way she explains things is confusing for me. Here's some background information:

24yo female, overweight.

8/7/13 Diagnosed PreDiabetic. A1C: 5.9

1/21/14 Diagnosed Diabetic. A1C: 10. Non-fasting C-Peptide: 1.4 (bg was 400+). Islet Cell Antibody: Negative

2/13/14 Non-fasting C-Peptide: 2.5 (while insulin was in my system, blood sugar ~100). GAD Antibody: Positive (Standard range: <= 0.02 nmol/L, My value: 1.22)

Current treatment (started 2/14): Diet, Glipizide, & Metformin. About to start Lantus (more info below)

So, after being told by my primary care physician that I was a T2 with T1 qualities (he thought my C-peptide was low), I went to a diabetes educator who also thought I was "weird" because my diabetes came on so quickly.

Met with the Endo, she said my C-peptide was completely normal and I was a textbook T2. Okay, cool. She put me on Glipizide and Metformin, which has been working okay. She also told me to stop testing as often, which I thought was a weird thing to tell a new diabetic (I've been testing right before and 2hrs after meals, just to get a feel for what's going on).

Then my GAD antibody test came back positive. This is where she really started confusing me. She said this does not mean I am a Type 1, or LADA, or anything like that. Her words: "We're still going to treat you like a Type 2." She said that since my C-Peptide came back normal on the 13th, and since I'm responding to oral meds, I'm T2. Then she lowered my Glipizide and put me on 8 units Lantus. Why would she put me on insulin if nothing has changed?! She said it was a "backup". Backup for what?

I'm just so confused! Type 2's don't normally have antibodies, right? My Endo also said that with diet I probably won't be on insulin forever. But... don't antibodies mean that my pancreas is being attacked? She made it seem like antibodies simply mean there is a potential for an attack.

Sorry this is long... it's just been a rollercoaster for the past month and I feel like I'm back at square one. This antibody test has really thrown me for a loop! ANY information would help.

Thank you,

-May

EDIT:

All of the replies in this thread have convinced me to switch Endocrinologists. Unfortunately I don't meet with my new one until the end of April, so I'm stuck with the one I have until then. I am going to send her the information you all gave me and see what she has to say. Thank you all so much for your support and information! It really means a lot. I'm so glad I found this community.

2

I am not an expert in the test but the positive test would make me more inclined to think that you are correct to think that you are more T1 than T2. I was dx'ed @ 16 but many folks diagnosed out of their youth report slower onsets and, sometimes, data that's not dissimilar to yours.

I had thought the positive test might be T1. Maybe the doc is overly hung up on the weight issue but I have to suspect that they are wrong. There may be some benefit to keeping the oral meds as there are some T1 folks here who've found them useful. It might be a decent idea to try to get a second opinion or ask the doc directly about this. "I looked it up and am concerned that the positive GAD antibody test means I'm more inclined to T1, why do you disagree...". One reason that it may be useful is that insurers may have different standards of care for T2 and T1, generally it seems as if many T1 have access to more "goodies" than T2. And the goodies in question are things like test strips, pumps, CGMs, etc. that are things that you would need to figure this out.

One other thing I'd be curious about once you get going on whatever insulin is whether the Lantus is enough to control your BG or if you are seeing spikes after meals. Even a moderate to low carb meal will send my BG flying up if I don't cover it with short-term insulin. If you see that in your data, that should be another way to disprove the doctor's thesis. Unfortunately, the medical paradigm for LADA/ T2 investigation seems to be "lets try some things and see what works".

I hope you are able to get a diagnosis that satisfies you sooner rather than later. There are many members here who have been given questionable information by health care providers in exactly your situation. Manny Hernandez, Brian (BSC) and Melitta are 3 people who've shared their stories of LADA/ T2/T1 issues but there are many others.

3

Because the autoimmune attack in LADA is a slower progression, it is possible to have a normal c-peptide at the beginning of diagnosis. In my case, it the c-peptide was completely normal but GAD was really high, so the endo determined T1. It was quite a while before things progressed to the point of needing insulin. Bet if we were to re-check my c-peptide now, it'd be pretty low.
Your doctor may have her reasons for considering you a T2, but I would caution you that IF you are indeed T1 she may be resistant to giving you the care you need at a later date. (Pills instead of insulin, lack of testing supplies, etc.) Perhaps it's worth getting a second opinion from a different doctor, as you should be getting the answers and the care you need.

4

here are some helpful posts

http://www.tudiabetes.org/profiles/blogs/positive-autoantibody-tests-indicate-type-1-autoimmune-diabetes

http://www.tudiabetes.org/profiles/blogs/melitta-s-top-ten-tips-for-the-newly-diagnosed-person-with-adult

let us know what happens.

5

I'm no doctor, but based on what I'm reading this sounds like what is considered LADA, which is just a fancier name for slow onset type 1 in adults. So the type 2 meds MIGHT work for you for a while but you will eventually need a long acting insulin like Lantus (which I see it sounds like you're starting?) and meal time insulin (Novolog,Humalog, or Apidra) . I was started slowly on Lantus first myself but I think I am more of a rapid onset type 1 than not because when I was on lantus alone I couldn't easily come down from the 200's but lantus alone did help a lot better and more stable (I mean I could be crazy but I felt less swings as soon as I started the stuff). In any case I still feel like my diabetes is really odd when it's probably normal because I use less insulin than I think some people use but I'm pretty sure I'm really sensitive to it because 1 unit brings me down a LOT and I tend to hypo if I correct even with just 1 unit.

6

Hi May: If I were in your shoes, I would get a new endocrinologist--she's not confusing, she just has her medical facts wrong. Your endo may be "faked out" by your weight, but she should use evidence-based medicine, not your weight, to give you a correct diagnosis and correct treatment. You have been diagnosed with diabetes (A1c greater than 6.5) and you are autoantibody positive, so by definition (World Health Organization's definition and Expert Committee's definition) you have Type 1 autoimmune diabetes. The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus says, “Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults).” The presence of autoantibodies can be used to distinguish between autoimmune diabetes (Type 1a diabetes) and Type 2 diabetes or other non-autoimmune diabetes (for example, monogenic diabetes (aka MODY)). Autoantibodies are not present in Type 2 diabetes; if autoantibodies are present, the person has Type 1a diabetes (according to the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus, “Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta cells does not occur.”)

Here is some additional good information from the Type 1 Diabetes Sourcebook (ADA/JDRF, 2013): “It is often unappreciated that many individuals with Type 1 diabetes will have significant amounts of C-peptide, representing residual beta cell function. The standard teaching that T1D is defined as complete absence of beta cells is inaccurate and is a disservice to both patients and providers. Among 411 participants in the Joslin Medalists study (those with T1D greater than or equal to 50 years), 67.4% still had detectable C-peptide” (Pages 26 and 27). “Adults developing T1D may follow a less precipitous course with few or no symptoms and an elevated glucose level identified incidentally on routine blood work. These individuals may be treated (unsuccessfully) with oral agents before it is determined that they are actually patients with evolving T1D who need treatment with insulin" (Page 3). “Initial Treatment for Adults: Adult patients can vary greatly at presentation, from a more acute picture, with DKA and marked hyperglycemia, to a more gradual course such as is often seen in LADA. For those presenting acutely as well as those presenting more indolently, starting insulin is the mainstay of therapy” [emphasis mine] (Page 79).

7

Haven't read all the other posts yet, so I may have more to add, BUT for now --

Antibodies nearly always indicate T1 ("nearly", I said). To my nonprofessional eye, this sounds as if LADA might be a possibility. Various reasons, the antibodies and the uneven onset being two of them. But LADA is basically just late-onset T1.

Now as for the insulin. It is becoming more common to treat T2s with it. The Joslin Clinic, which is pretty much the gold standard of diabetes care, now puts newly diagnosed T2s on insulin right away. (Maybe they know something?) There are numerous reasons for this, too, but the most important one is just pragmatic: it works. And it is indeed true that if you intervene early enough, the need for insulin can end up being temporary for many T2s.

I am a long time T2 who started insulin -- at MY own request, not the doctor's -- about a year and a half ago. It has given me a level of control I never dreamed of before. Wish I'd done it ten years ago.

As for the confusion: it's hard to avoid when you are getting conflicting signals from different sources. Most diabetics learn eventually that you must be your own expert and advocate. No one knows your body like you do, and for sure no one has as much at stake in the outcome!

It's way too easy to get tangled up in diagnostic nomenclature games (T1? T2? LADA? MODY? etc.) and miss the forest for the trees. At the end of the day I don't care whether you classify me as T1, T2, or T78. What's important is, what do I DO about it? I use the treatments that work for me, whatever they are. Where your life is concerned, control is what ultimately matters, not what you call it.

P.S. OK, now I've read the other posts. Melitta's analysis is spot on, as usual.

$0.02

8

I would find another endo. It sounds like you are slow onset type 1 to me and you don't want to go into dka when your insulin supply shuts down and end up in a medical emergency. Get all the antibody testing and find someone who will give you the proper treatments. This is your life that is on the line here. Good luck :)

9

No wonder you are confused. But you are getting great info from TuD folks here. The D is all about being a well-informed self-manager. And sadly, the general level of knowledge in many medical personnel is either out-of-date or learned in one semester of medical school devoted to diabetes. Do your own research and don't be afraid to challenge your medical team, while acknowledging that they are part of your system for gathering info. They probably want to take care of you. You may eventually be able to Teach them!......Please keep us posted...Blessings...Judith in Portland....

10

All of the replies in this thread have convinced me to switch Endocrinologists. Unfortunately I don't meet with my new one until the end of April, so I'm stuck with the one I have until then. I am going to send her the information you all gave me and see what she has to say. Thank you all so much for your support and information! It really means a lot. I'm so glad I found this community.
-May

11

No problem. I'd switch endos in your situation too, good luck with the new one. I got pretty lucky as far as the endo thing goes (my endo is a type 1 diagnosed at 22 , just like me) so fortunately you're lucky too this time around.