T1, T1.5 or T2?

#1

Back in December 2017 I switched endocrinologists.

My old one labeled me T2 and kept giving me orals which helped some but not very much. After trying victoza and that not doing much, my old endo stopped all orals and put me on Novolog and kept the Victoza. My A1C went down some, bust still in the low 7 A1C range.

My new doc did antibody tests 12/19/2017 and found:

GAD-65 <5
IAA <5
IA2 < 1
but
CPEP 0.7

Unsure what time of day the cpep was run and if it was fasting or not.

He said Anything 0.8 or lower was clinically Type 1 and if I was on medicare, I’d meet the criteria for T1 but since I was already on insulin, further testing was a waste of time since it would be the same treatment. He also said that if it would help for insurance, he would re-label me T1.

I’m currently on a Dex G6 and omnipod but highly insulin resistant running anywhere from a low of 60 units per day of insulin to a max of 120 units depending on what I eat.

But now I want to branch out and talk about Diabetes on the boards and on facebook.

Just not sure how to label myself. Am I an insulin dependent T2 or a misdiagnosed T2 turned T1 (1.5)?

A1Cs have been pretty steady with the latest being 6.0 on 2/5/2019 but I’m not doing all that great on preventing highs and lows.

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#2

I’m not a doctor, but I agree current designations are overly complicated and confusing. Treat the patient(s) for the symptoms they present

#3

Given that you one day will be on Medicare make sure you are labelled a T1 if you can.

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#4

I was diagnosed T2 25 years ago. I started on Metformin but after several years graduated to insulin and eventually an insulin pump nine years ago. Several years ago, my endo recommended I stop the Metformin; however, my daily insulin use increased significantly which my endo said confirmed that I continued to be Insulin resistant.

Because my c-peptide now consistently comes in at < 0.01, he now indicates that I am a T1 on medical reports. I now primarily read and post on T1 forums.

#5

I was diagnosed as T2 29 years ago but was told would be treated as T1 due to my symptoms. Started on oral meds for a few months but then was put on insulin and endo told me that I had been miss-diagnosed and should be listed as T1. Ran C-peptide this year and found making plenty of insulin, just highly carb intolerant with ratio I:C of 1:3. I was then told my symptoms really only matched MODY but since no relatives had diabetes, she could not have test ordered. I ordered and paid for test myself and DNA came back no positive variants for any of the MODY genes.

So now after 29 years at age 70+ (125lbs 5Ft 9 male BMI 18.5 50+ units of humalog a day, 8 Lantus), Joslin is still not able to tell me what kind of Diabetes I have as it does not fall into any of their known buckets. A few months ago went onto low carb diet and have been able to completely come off of all medications including insulin.

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#6

That’s totally awesome! Glad to hear it. Way to go!

#7

Thank you so much!!! Never would have believed possible but tried and it worked.

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#8

If you want to research this for your own curiosity, then you should. Its interesting.

However, when speaking with medical professionals, I would refer to yourself as a type 1 or an, “insulin-dependent diabetic,” because that will prevent confusion. That communicates the important stuff that they need to know. Otherwise, there may be confusion. You are more a type 1 than a type 2 if your taking insulin and thats the most important thing for them to know…especially in an emergency. I would write that on medical alert tags, for instance.

However, they might assume that insulin is ‘old hat,’ to you. So, maybe you say that you are a “Newly diagnosed type 1,” or a “Newly diagnosed insulin-dependent diabetic.” Thats best of all.

How comfortable are you with manipulating your basal settings? I think that is the number one way to get the roller coaster behavior stabilized. Although, you might have a relatively large amount of work to do with meal insulin, compared to the rest of us. You might just be a ‘big eater.’ Start with your baseline basals.

Your dosages don’t seem out of the ordinary to me. Yesterday I took 64 units, but ate next to nothing. I see 70 u and 80 u days over the past week. I’m certain that I hit 100 unit days when I eat a lot. I am 5’9" female, 165 lbs, type 1 for 25 years.

#9

I would say you are not type 1 autoimmune without antibodies but definitely label yourself as type 1 because you will have access to what you need. So prolly it is insulin dependent type 2 at this point with c peptide low.

From what I have read normal c peptide levels are 1.1- 4.4. ( my lab range anyway) But I found one that says .7- 4. .7 seems a little low for normal to me, but it depends on the time of day and other stuff maybe.

Also I think most type 1 don’t use that much insulin which suggests insulin resistance. It can vary though. Not that type 1 can’t have some form of ir too but it usually happens later.

When I was diagnosed I was in dka and antibodies were pos / high for gad 65 with c peptide at .4 - 2-3 months later c pep was much lower at less than .1

I would think of trying a basal insulin too at this point to get your a1c down lower.

#10

There are some people who don’t test positive for the antibodies, but don’t make insulin, they will have an abnormal (low) C-peptide level. They haven’t figured out what exactly is going on in this group. But it is still considered type 1 or sometimes 1.5.

#11

Apparently, after many years of attack, the antibodies disappear along with the beta cells. That is why none show up in long time T1s. The antibody tests are most revealing when performed early.

#12

Here’s the spread from Tidepool

#13

Can you explain the color coding of the second chart?

#14

Wow. I knew I was abnormal, but now I just hate everything. Average 250 units a day with monitoring carbs. :persevere::exploding_head::persevere:

#15

I’m thinking that the blue square is the 50th percentile or median total daily insulin dose for respective age groups. The dark grey portion encloses the 25th-75th percentile while the light grey portion below that is the 1st-25th percentile and the light grey upper portion is the 76th to 99th percentile.

#16

I am 62 and I use a total of about 50-55 units a day, but I don’t eat a lot as I’m retired now.

You have to understand this is a median average and only about 20% of type 1’s use a pump. You also have some type 2’s that are insulin/pump users that don’t have to take full doses. You also have low carbers that don’t use as much either as they take it for protein but have lower carbs and so don’t use as much insulin. And then you have the probability that some are putting in Tidepool numbers and are paying more attention to your numbers and maybe even being “good” because you are seeing a doctor and that is why your are entering your numbers. I never changed what I did but my husband who is a type 2 (not on insulin) would eat better the couple of weeks before a blood test for the doctor so he who have better numbers. He’s not entering numbers obviously into Tidepool but I’m sure some people do the same thing that have pumps. But I did only enter my information for the month before my doctors visits,

So in other words stats don’t always mean that much as they can be skewed. Plus a Median is not an average, it’s the middle number reached by a group of people. So with the first chart that says median, I am over the Median number, but with the second chart where everyone is listed I am in the majority group of use. So say you have numbers 12357, the median is 3 which is lower than the average would be or in this set the numbers 2, 4, 8, 15, 21, 36, 47, the median is 15, the average would be 19. Some believe a median is a more accurate “use” number than a average because it is the middle number. Personally I would say drop off the lows and the highs and then average the remaining numbers. (Olympic scores often do this)

I used to use a lot more insulin when I was on shots, i would take bigger doses to cover snacks over a period of time, plus 1 shot a day of long acting was almost double basal than what I take on a pump. I think I was probably closer to 100-120 units a day when I was taking shots. So honestly people using 100 or 120 or 150 units of insulin, I don’t think I would worry about it. I would pay more attention to your A1C. And then maybe your carb ratio? Mine varies from 1 unit to 3 carbs in the earlier am, and by afternoon and night I am at 1 unit per 7 carbs. 1 unit per 3 carbs is a pretty common calculation. Don’t fret about your insulin because that can vary by what and how much you eat. My opinion is the object to me would be your A1C test, After all your body would make as much insulin as needed in a “normal” person.

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#17

I think the blue dot is just showing the mean value.

#18

As I understand it, to be Type 1 or 1.5, there have to be antibodies. So even though my pancreas doesn’t make enough insulin and am on pump, because I don’t have antibodies, I am Type 2. However, insulin resistance is not my real problem, I don’t relate so much to Type 2 blogs so mostly look at stuff for T 1 and 1.5.

I read an article about a Scandinavian report that chose to use five labels for diabetics. All those with the antibody thing were in first category, categories three, four and five were for different levels of insulin resistance. Category two was for folks, without antibodies, whose pancreas produces little or not enough insulin. Finally!, I thought, a category for me. I use 20-22 units/day average.

#19

In my book, Suzan, you are a T1, maybe LADA. Antibodies don’t show up as beta cells die off because the attack ceases. Antibodies are detected in early stages not when testing is done years after initial diagnosis.

#20

@Susan

The UK lol I think has about 8 categories. I know my type 1 Diabetic Educator calls herself a 1.5. she doesn’t test positive for antibodies but her pancreas doesn’t make insulin.