Type 1 turned type 2

[gijoe]

Hi All,
Good Morning.
I have been a type 1 for the past 22 years of my life and have now been told that my latest blood test show that i am type 2. Is this common for pancreas to start producing insulin after so many years? I am trying to get around this change and wanted to know if anyone else has been in a similar situation. Thanks

 

[Inka]

Welcome @gijoe 🙂 What blood test did you have done? Was it a C Peptide test? Are they saying you were originally misdiagnosed, or do they think you have a genetic form of diabetes (MODY)?

Once the insulin-producing cells have been destroyed by our own immune system, they can’t grow back so Type 1 is currently incurable. I’ll tag @Northerner for you as he has an unusually behaving kind of diabetes.

 

[everydayupsanddowns]

Welcome to the forum @gijoe

Sorry to hear there is some confusion about your diabetes type. We do have a few members on the forum who have unusual diabetes journeys, and whose diabetes seems to defy ‘normal’ classification!

Assignation of diabetes type is often done based on clinical factors of the initial presentation. We do have members who are initially classified as one type, but later clarification suggests that they were actually a different type all along.

It would be interesting to know what the blood tests were which have cast doubt on your initial classification, and what results have suggested that you are actually T2.

Can you remember the names of the tests involved?

 

[gijoe]

Hi Admin,
I was asked to do a C-Peptide test as the nurse felt my blood sugars were swinging from high to low and this test determined that my pancreas are actually producing some insulin.

 

[gijoe]

Welcome @gijoe 🙂 What blood test did you have done? Was it a C Peptide test? Are they saying you were originally misdiagnosed, or do they think you have a genetic form of diabetes (MODY)?

Once the insulin-producing cells have been destroyed by our own immune system, they can’t grow back so Type 1 is currently incurable. I’ll tag @Northerner for you as he has an unusually behaving kind of diabetes.

I was initial diagnosed T1 in another country[22 yrs], then when i moved to England i was put on Insulin [Lantus and Novo] and have been on that for the past 18 years. In July i was asked to do the Cpeptide and was told that i am type 2. Still awaiting a final plan on how to change my treatment. I am just so confused as i have been doing things 22 years in a certain way and now to suddenly change everything. my HbA1c is usually swinging between 58 - 65.

 

[Inka]

Yes, it must feel so strange after all that time @gijoe Hopefully all your experience will mean it’s as easy as it can be.

 

[ianf0ster]

I was initial diagnosed T1 in another country[22 yrs], then when i moved to England i was put on Insulin [Lantus and Novo] and have been on that for the past 18 years. In July i was asked to do the Cpeptide and was told that i am type 2. Still awaiting a final plan on how to change my treatment. I am just so confused as i have been doing things 22 years in a certain way and now to suddenly change everything. my HbA1c is usually swinging between 58 - 65.

Hi, By being diagnosed as a T1 you have effectively been having the same medications (except for Metformin) that a severe case of T2 would get i.e. insulin.

If indeed you are a T2 and producing a reasonable amount of insulin then then I would expect that other forms of managing T2 diabetes open up to you should you wish to take them. For example both T1's and T2's can reduce the insulin dosage they need by moderating their carbs, but only T2's ( but not all of us) are capable of ditching all diabetes medications by going to a Low Carb Higher protein and higher Traditional fats 'Way Of Eating' i.e. not a calorie restricted diet but a way of controlling their BG purely by doing a little exercise and reducing their carbohydrates permanently.

 

[Ljc]

Hi. We’re you told how
much insulin you Pancras is producing?
You see many who have T1 are still able to produce , some insulin , just not enough.

T2s are often found to be producing lots of insulin but for some reason it does not work well.

Then their are us rarer types, . My dear old pancreas sometime produces enough for my sleeping background needs .

I don’t know enough about MODY.

 

[Flower]

Hello @gijoe and welcome

That must be confusing when what has been working for you for 22 years is questioned.

I can remember reading tests done by the Joslin Centre on people who had lived with Type 1 for 50 years+ and some were still producing some of their own insulin after half a century. Click on Results section and second paragraph down

Medalist Program & Study

Honoring Joslin's Heroes The Medalist Program began in 1948 when the team at Joslin first began awarding medals to people who had been li

www.joslin.org

 

[Ljc]

May I ask how you originally came by your T1 diagnosis.
What symptoms you had, tests ect.

Also this nurse that has old you you are now T2 , is she a nurse at the gp practice or a fully qualified , DSN ( diabetes specialist nurse) usually hospital based.

 

[helli]

You see many who have T1 are still able to produce , some insulin , just not enough.

Unlikely 22 years after diagnosis.

 

[Inka]

…only T2's ( but not all of us) are capable of ditching all diabetes medications by going to a Low Carb Higher protein and higher Traditional fats 'Way Of Eating' i.e. not a calorie restricted diet but a way of controlling their BG purely by doing a little exercise and reducing their carbohydrates permanently.

Or they could go for one of the other many ways to control Type 2 that suit them as an individual. You can see from comments on the forum that we are a broad church, as Mike put it, and there are many different diets followed here with great success.

 

[Drummer]

The best man at my sister's wedding was told that he was type one and put on insulin. He had hypos, lost job, house and his family - decades passed, and his consultant retired, new doctor contacted him after a set of tests were done, to say stop taking the insulin, you are not type one.
He spent a couple of hours pouring his heart out to my brother in law, then left and has not been heard of since.
Misdiagnosis is not unknown.

 

[gijoe]

May I ask how you originally came by your T1 diagnosis.
What symptoms you had, tests ect.

Also this nurse that has old you you are now T2 , is she a nurse at the gp practice or a fully qualified , DSN ( diabetes specialist nurse) usually hospital based.

@Ljc I had ketosis … drastic loss of weight and was diagnosed at the hospital. The nurse is a hospital nurse.

 

[gijoe]

The best man at my sister's wedding was told that he was type one and put on insulin. He had hypos, lost job, house and his family - decades passed, and his consultant retired, new doctor contacted him after a set of tests were done, to say stop taking the insulin, you are not type one.
He spent a couple of hours pouring his heart out to my brother in law, then left and has not been heard of since.
Misdiagnosis is not unknown.

That is exactly my case as I used to have a lot of hypos and an episode of collapsing in a store due to hypo. Now with being told this I get very anxious when taking insulin or when I go out.

 

[gijoe]

…only T2's ( but not all of us) are capable of ditching all diabetes medications by going to a Low Carb Higher protein and higher Traditional fats 'Way Of Eating' i.e. not a calorie restricted diet but a way of controlling their BG purely by doing a little exercise and reducing their carbohydrates permanently.

Or they could go for one of the other many ways to control Type 2 that suit them as an individual. You can see from comments on the forum that we are a broad church, as Mike put it, and there are many different diets followed here with great success.

@Inka I have learn to carbohydrate count and follow a strict diet but when ever I do exercise I start getting a hypo. I have been told to titrate my insulin but can’t seem to get it right and keep swinging from high to low. It’s so frustrating that at times I feel like giving up all this control and start living and enjoying life.

 

[Inka]

Diabetes can be very frustrating @gijoe ! It depends what the exercise is, but I normally reduce my bolus for the meal before and top-up with extra carbs during the exercise as needed. Another alternative is keeping your bolus the same but eating more carbs. If it’s prolonged exercise, you could also consider if a reduced amount of basal insulin is appropriate.

In general, to reduce the swings from high to low, I bolus a sufficient time in advance of my meals. That way I can often take less insulin, my post-meal spike is reduced hugely, and I don’t go low.