Type 1 or 2?

I was diagnosed in 2000 as a type 2. In 2018, I got an endocrinologist that did bloodwork and said I was type 1. I have been going to adiavetes class at my library and an RN told me that if you’re diagnosed as type 2 you’re always type 2. I explained, to her, that my Dr said my pancreas produces no insulin now. She said it didn’t matter. Can anyone clear my confusion? Thanks.

Do you have access to the tests that were done with results?

With type 1, tests for anti-bodies such as GAD-65, confirm Type 1.

There are some type 2s that progress to the point their pancreas no long makes any, or enough insulin, so require insulin. So they are essentially “insulin dependent” but that term was previously used to describe type 1.

You might be able to find dr records with diagnosis code, if you want to prove this to the nurse.

1 Like

If you truly make no insulin it doesn’t make any difference, the treatment is the same. Even antibody tests are not the definitive answer because there are T1’s that do not have detectable antibodies but if you do have them they are proof positive of T1.

I would go with my Endo’s training and experience, after all he or she is the one with a document on the wall proclaiming him/her to be a doctor.

3 Likes

I think I’ve read several times that 1/4 type 2 Diabetics are actually type 1, just slower developing.

I’m sure its wrong for someone to say once a type 2 your always a type 2.

You can have both type 1 and type 2. You can have one then develop the other. You can have type 1 without known antibodies.

It sounds like this nurse isn’t well educated on the subject.

  • Prediabetes. Blood glucose levels are higher than what’s considered normal, but not high enough to qualify as diabetes.
  • Type 1 diabetes. The pancreas produces no insulin.
  • Type 2 diabetes. The pancreas doesn’t make enough insulin or your body can’t use it effectively.
  • Gestational diabetes. Expectant mothers are unable to make and use all of the insulin they need during pregnancy.
1 Like

Funny you say that because my granddaughter is an LPN and she said the same thing about this RN.

ChrisP

    March 2

I think I’ve read several times that 1/4 type 2 Diabetics are actually type 1, just slower developing.

I’m sure its wrong for someone to say once a type 2 your always a type 2.

You can have both type 1 and type 2. You can have one then develop the other. You can have type 1 without known antibodies.

It sounds like this nurse isn’t well educated on the subject.

Healthline – 1 Jun 18

Diabetes: Facts, Statistics, and You

Whether you’ve received a diagnosis of diabetes, have a family member or friend living with the condition, or are looking for preventive measures to decrease your risk, we’ve rounded up the most up-to-date stats and figures surrounding diabetes.

I smiled when I read your reply. And, yes, the Endo has the document on the wall!! :slight_smile: Thanks for replying.

@Esther2 as someone who has traveled a similar path, ignore your RN and his/her lack of current knowledge. Go with what your Endo states. In addition, obtaining CGMs pumps and the like are significantly easier as a T1 for most insurance companies.

1 Like

I don’t care about proving it to the nurse but I will try to find the records just for my own curiosity. Thanks.

MM1

    March 2

Esther2:
endocrinologist that did bloodwork and said I was type 1.

Do you have access to the tests that were done with results?

With type 1, tests for anti-bodies such as GAD-65, confirm Type 1.

There are some type 2s that progress to the point their pancreas no long makes any, or enough insulin, so require insulin. So they are essentially “insulin dependent” but that term was previously used to describe type 1.

You might be able to find dr records with diagnosis code, if you want to prove this to the nurse.

1 Like

I do know that. The nurse, of the endo, that said I was type 1 told me it would be easier for me to get a CGM being type 1. Still wasn’t because I had to fight with my insurance for 2 months but finally did get a Freestyle Libre. It has changed my life for the better. My husband is a great caregiver and is, now, able to get up through the night and check my sugar without ever waking me unless I’m high and need to take insulin or low and need glucose tabs. Every Type 1 needs one.

2 Likes

My PCP diagnosed me at age 67 as type 2 based on my a1C. After about 2 years of ups and downs, I saw a CDE at an endo clinic. She ordered the c-peptide and antibody tests. There result was, I was really a type 1. You may have always been type 1, if your first doctor did not do all the tests.

1 Like

A husband caregiver or CGMS?
:smiley::smiley::smiley::smiley::smiley:

2 Likes

There still are ignorant medical professionals out there. I remember back in 2010 a pcp doctor telling me medications wouldn’t work on a type 1 so you have to be a type 2. Last year I had a chiropractor tell me my type 1 could be cured because I didn’t get it as a kid. I don’t think she still believed me when I tried to explain it to her.

And, so many of the medical professionals think they see themselves as Gods. Makes it very hard to disagree with them. The majority of PCPs know just enough about diabetes to get them by. There were 30 people in my diabetes class and I was the only one seeing an endocrinologist. And they all said their Dr have them metformin, never explained how to use it or what they should eat.

2 Likes

I’m almost sure my first Dr wouldn’t have done those tests. I’m going to try and find my records this week in order to know for sure.

The question I would like to ask this RN is, “What if the original diagnosis is wrong?” I think the point she might be trying to make is that people do not transition from T1D to T2D or vice versa.

I do know that people with T1D can become insulin resistant, a hallmark of T2D. In fact that happened to me. But I don’t agree that I had “double diabetes” as some have called it.

Seeing a positive test for antibodies will conclusively back up a T1D diagnosis. This can be further supported by a low number on the C-peptide test, an indicator that your pancreas only produces trivial amounts of insulin.

It’s unfortunate that in the US, the insurance industry treats people with T2D in a discriminatory way and often refuses access to important tools like a continuous glucose monitor. This is unjust.

2 Likes

I am not sure that it is a discriminatory issue more than an issue that T2D are less apt to need a CGM than T1D. Medicare does not differentiate between T1D and T2D for Dexcom coverage. Instead, they require patient to meet certain criteria which demonstrate need for a CGM. Many insurance plans are the same and will cover CGM as long as patient has a letter of medical necessity and meet the same criteria or similar criteria for the Dexcom Medicare coverage. Insurance companies are known to deny first attempt but then often cave on appeal or repeated requests.

Here is the link that shows the criteria for both T1D and T2D Dexcom Medicare patient coverage:
Dexcom Medicare T1/T2 Coverage

Why don’t you agree with the double diabetes diagnoses? I assume as you say you have been diagnosed with insulin resistance. Do you use any medication typically used for T2 or is not beficial for typical T1 patient?

I take a broader view of the value of a CGM. It provides one of the best customized educations possible for anyone with an impaired glucose metabolism. That includes T1D, T2D, gestational diabetes, MODY and pre-diabetes.

It can inform eating, exercise, sleeping and other lifestyle choices. This education, of course, is only effective to those who pay attention and are willing to make lifestyle changes in response to CGM observations.

I was diagnosed with T1D 35 years ago. About 15-18 years ago, I started to become insulin resistant due to chronic overdosing of exogenous insulin. This led to weight gain and insulin resistance. When I finally figured out what was going on 7 years ago, I was able to restore my insulin sensitivity through a carb-limited diet, greatly reduced insulin doses and much better glucose control.

I am no longer insulin resistant. I only take about 22 units of insulin per day, about 0.3 units/kg of body weight. I take no T2D drugs, but did try Metformin many years ago and couldn’t get past the gastric distress it caused.

I suppose you could see this as simply semantics. I see my autoimmune T1D as the primary controlling diagnosis and insulin resistance like I experienced as a complication of that primary diagnosis. T2D, however, is usually, but not always marked by insulin resistance, but is also driven by other related conditions like metabolic syndrome. Science understand less about T2D than T1D.

I concede that my insulin resistance is similar to T2D insulin resistance in that excessive insulin drives insulin resistance. In my case it was the added insulin that drove my insulin resistance but with T2D, it’s the home-brewed variety that increases insulin resistance.

This is a hard debate to bring definitive facts to the discussion since science doesn’t understand a lot about T2D and its causes. What I’m pushing back against here is the confusion between diabetes types among the general public.

I’ve heard people declare that they are no longer T2D and and are now T1D since they just started taking insulin. If a T2D tests negative for auto-antibodies with a normal C-peptide test, then they cannot be classified as T1D.

I do agree there is some overlap between T2D and T1D but I still see them as distinct conditions.

2 Likes

I totally agree with your broader view, you don’t need to convince me. It is medicare and the Insurance companies, however, that pay for most if not all CGM expenses and it tends to be quite difficult to broaden the view of these entities so in the meantime we all do our best to work within their tunnel vision in order to get our CGM’s and supplies covered.

The Insurance companies and Medicare set the rules of the game and we play by their rules to get or keep our coverage.

Just a comparison, two years before I was diagnosed I gained 20 pounds for no obvious reason (to me). In retrospect I was over producing insulin, because I was insulin resistant(?) (am not sure which comes first. I decided to change my diet and exercise (not based on diabetes) and lost the 20 pounds quickly.
Then I was diagnosed T2 with A1c of 12. I have balanced my system with going to a low carb woe and exercise No medications. No metabolic issues. My first C-Peptide was typical T2 High BG high C-petide. Then after going Low carb it was a1c 6.0 and mid range C-peptide. (10 dx 10 years ago this month) now 5.6.
I am not trying to be sarcastic. This is the truth.

I agree there is a lot of confusion. Unfortunately I don’t feel your analysis is helping much.