Hospital said Type 1, doctor paperwork says Type 2

(Celeste) #1

Hi y’all. I’m a bit frustrated. First, some background. I was home visiting family for the holidays but was feeling lousy. (If I’m being honest, I was feeling awful for at least a month but blamed it on stress.) After going to urgent care the day after Christmas, thinking I had the flu, and then finding out instead that I had too much sugar in my urine, the doctor sent me to the ER for more tests. An hour later, the nurse came in and confirmed: I was DKA and had diabetes, likely type 1. That’s what everyone kept saying for three days (except the diabetes educator, who said I should get another test to confirm): Type 1, Type 1, Type 1.

I flew back home to STL and got set up with a PCP and an endocrinologist. But all the paperwork they gave me says Type 2. What? When I asked, the nurse made some comment about the insurance company coverage, but the endo sent to get the peptide test to confirm.

I’m frustrated though. I know I need to wait until the test comes back to confirm Type 1 or Type 2, but is this normal for doctors to do this? Or do I need to speak up a bit more? I’m worried about being misdiagnosed, especially since I’m an adult (almost 30) and read how many adults who develop diabetes are automatically diagnosed Type 2 in spite of signs for the other.

(Dennis J. Dacey, PWD) #2

Celeste @yocellie,

Debating whether you have Type 1 or Type 2 should now be secondary to trying to get your glucose levels as close to “normal” as possible. If you were actually in DKA [a loosely used term which some practitioners say happen if your Blood Glucose [BG] exceeds 200] that would explain why you felt so awful. When your body was unable to get the fuel it needed because you weren’t producing [enough] insulin to move the sugars into muscle and other cells, your body began breaking down stored fats and other body parts to give you energy to function. [Not exactly a scientific explanation] The byproduct of this breakdown of fats, etc., is acetone a deadly poison to humans.

The endocrinologist [hopefully s/he is the best] is on the right track in ordering a c-Peptide - a test that will indicate if your body is still producing insulin; a person with TypeOne does not produce insulin, or produces very little insulin. Type 2, on the other hand produce insulin but the body has difficulty using that insulin - thus require a different method of treatment.

You are caught in a widespread “ignorance” within the medical profession which sets the guidance in determining TypeOne or Type 2 as the date printed on your birth certificate. After about 50 years with TypeOne diabetes I received a “medical cure” from a doctor who told me [shortly after I had moved and was attempting to form a ned medical team] that I “… could no longer be considered TypeOne because of my age” - crossed that name off my list.

Whatever type diabetes you have Celeste, I wish you well and that you get the best care possible - STL, I believe has some very good healthcare people. Feel free to message me with any concerns - I’m happy to share with you anything I can based on my more than 60 years trying to live active and well with T1D - I am not a medical doctor.

(Brandon A. Denson) #3

Celeste @yocellie ,

My name is Brandon A. Denson. I was diagnosed at the age of 17. It is becoming more common that adults are being diagnosed at later ages as yourself. Nothing will officially be known until the test results come back and are reviewed by the doctor. In the meantime if you need any help with anything please feel free to reach out to me. I’ll help you in anyway possible. No matter what you’re not in this alone, I can promise you that. Keep your head up and keep pushing.


(karenchq) #4

I am and was diagnosed at T1 at 50. There was question as to T1 or T2, due to age, so came across the same issue as you with diagnosis confusion. It is amazing how many health care providers know so little about T1. A nurse asked me what a normal blood suger range is. An eye doctor specializing in diabetic screening insisted that I could not be T1 due to age of diagnosis. My sister, a nurse, said that in her nursing classes, diabetes was discussed for only 2 days and focused almost entirely on T2 as they were told that they would rarely encounter a T1. I learned quickly that I needed to take charge of my health. If I might suggest a book in addition to “Think Like a Pancrease”, “The Diabetes Manifesto” written by Lynn Crowe and Julie Stachowaik has good advice and explains how to advocate for yourself.

(brod) #5

Have you had a C-Peptide? I have had a couple to convince doctor who look at this fat boy and think he can’t possibly be type one. Sorry, C-Peptides shows I am type one. This was while I was temporarily in another state. My regular endo nearly hit the roof when he found out I was on a type 2 medication. Do you know you could have died he told me.

(joe) #6

@yocellie hi Celeste,

yes its normal. A decisive and absolute diagnoses is very difficult, many doctors will diagnose based on overwhelming evidence rather than absolutes, and many times with diabetes doesn’t give overwhelming evidence.

C-peptide test does NOT DIAGNOSE type 1 diabetes. it is an indication of how much insulin your body is making. there may be a zillion reasons why your body may not be making insulin, T1D is just one of them. I am a mechanic and not a doctor but imo, t1d may be the best reason but its not the only one.

there is a actual test for T1d antibodies (I think it’s GAD-65) but even that is imperfect and often expensive and the information doesn’t change how the doctors will treat you.

with a low c-pep, they will treat your high blood sugar with insulin rather than “kickers” or absorption drugs. Kicker drugs increase your body’s natural insulin production, absorptioon drugs make your body use available insulin better, both have their own nasty side effects, and will not work unless your body can actually make insulin. That being said, some type 1’s need to take type 2 meds to help them absorb the injected insulin… I don’t have any idea what to call this may be a Type 2 Type 1? but if you need this medicine it can help…

I know we all like to have answers. but you may not ever get a definitive answer. anyway who cares, as long as you are getting the best treatment . I try not to blame doctors for not having the time to actually explain stuff to every patient - it certainly isn’t nice, but they do have pressure to see many patients.

(Celeste) #7

Hey y’all, thanks so much for your responses.

I did the c-peptide test and the nurse said it looks like I’m in the honeymoon phase still, so I’m on a medication that’s supposed to help extend the phase. The great news is I’m only taking long-term acting insulin in the morning and the other medication at night. Numbers are looking good (still experiencing some lows, though, because I take too long to eat sometimes), and the endo seems pleased. They said they put type 2 on my paperwork to help with insurance stuff, so I guess not going to worry?

Now my only concern is how much weight I’ve lost and keep losing, to the point where my colleagues are concerned. But from what I’m seeing based on other people’s posts, that seems to be something to expect.

(Hollie) #8

I’ve also had some question about whether i’m type 1 or 2 or a variation but I’ve come to realise that until my blood sugars suggest one or the other I should just be happy i’m treating it and looking after myself. And there is no 100% definitive test but at the end of the day it’s just a label! Either way it’s not our fault :blush:

(carl benwon) #9

All I know, they thought I had type 2 also, gave me the metformin and I knew it wasn’t working. My regular internist prescribed Lantus for me and I was doing fine at 17u/day for months. A lot has changed in the last month though! I’m now really showing type 1 and doing both long-acting and short-acting insulin. The short-acting for each meal. I test a lot and learning a lot too! I get night sweats too and attribute it to high sugar during the night. I seem to awake higher than I asleep.


(Ashley) #10

I’m not sure a type 2 diagnosis is going to be any better insurance wise. I would imagine it makes things harder to get covered. They are willing to cover more test strips for type 1 than type 2. You may run into problems if you want to go on an insulin pump or continuous glucose monitor as well. Your medical diagnosis should be ACCURATE. If you are ever in the ER or hospitalized they are going to treat you based on your given diagnosis not on the diagnosis you say you have. I would push to get it straightened out.

(Amanda) #11

I’m in STL too and a few weeks ago had almost the exact same scenario. I went to the urgent care thinking I had the flu, they diagnosed me in DKA and sent me to Barnes. I spent a week there and they couldn’t decide if I was type 1 or 2 either but I was, and am still, on an insulin regimen. They did the GAD test and it came back positive so they gave me the type 1 diagnosis.