• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Stressing over this- Any ideas?

B

benhippers661

Member
Messages
21
Type of diabetes
Type 1
Treatment type
Insulin
Got this letter and it basically says that they think that I might be type 2, despite being diagnosed as type 1. I had all symptoms of type 1 and have been treated as one but now I’m not sure?
Thanks :)IMG_1258.jpg
 
Post in Type 2 Forum. Sounds like that's what they determined you have. No DKA no antibodies. There used to be a test for insulin levels called "C-peptide" but it's pretty old they may not do it nowdays.
 
benhippers661 said:
Got this letter and it basically says that they think that I might be type 2, despite being diagnosed as type 1. I had all symptoms of type 1 and have been treated as one but now I’m not sure?
Thanks :)View attachment 25683
Click to expand...
Hi Ben, maybe you can scribble out your name and date of birth too, it's not a good idea to show them. I think you will find that for most people on diagnosis, they go through the maybe it's this, maybe it's that process, don't worry, I am sure they will do further tests to try and clarify.
 
I imagine what it means is the doctor is considering changing your diagnosis from Type 1 to Type 2 based on the antibodies tests.

The symptoms of T1 and T2 are the same when your blood sugars are as high as yours were. It is the high blood sugars that give you the symptoms, and whichever type you are you can have high blood sugars. It is quite common to be misdiagnosed initially, and sometimes it takes a while to arrive at the correct diagnosis. It looks like you didn't have the c-peptide test, which is the best one for determining type. I must admit though, the misdiagnosis is often the other way round! Diagnosed T2 and subsequently found to be T1.

Does that help?
 
Bluetit1802 said:
I imagine what it means is the doctor is considering changing your diagnosis from Type 1 to Type 2 based on the antibodies tests.

The symptoms of T1 and T2 are the same when your blood sugars are as high as yours were. It is the high blood sugars that give you the symptoms, and whichever type you are you can have high blood sugars. It is quite common to be misdiagnosed initially, and sometimes it takes a while to arrive at the correct diagnosis. It looks like you didn't have the c-peptide test, which is the best one for determining type. I must admit though, the misdiagnosis is often the other way round! Diagnosed T2 and subsequently found to be T1.

Does that help?
Click to expand...

Yes that does help explain it a bit more. Thank you :)
 
I wouldnt stress about it
I know some type 1’s do not test positive for antibodies although most do. I think theres a sub group of type 1s who are antibody negative (type 1b?) and also Ive seen mention of another sub group who do not show the common antibodies (auto immune diabetes????)
There is also Mody and Lada to consider - looks like your doc is trying to work out an accurate diagnosis
Im not a T1 so my knowledge is limited - Im sure some T1S will be along who are better informed
 
Last edited:
P.s I think the other thing to bear in mind is that diabetes daignosis is not the fine art we would all like it to be - it deals very well with a large group of presentations but struggles with others
Ive been diagnosed T2 for over 20 years but my diabetes has not followed the expected path so It has now become “diabetes of uncertain aetiology” with some further tests being done I’m looking at the shift as something interesting rather than something to stress about, even tho it is a bit disconcerting to have a diagnosis questioned
 
@benhippers661 about 25% of type1s are antibody negative. Being antibody negative doesn't mean you aren't type 1. It means you have idiopathic type 1 i.e. Your immune system has killed/is killing off your insulin producing beta cells we just haven't found the antibodies that are doing that in your system, yet.

You should ask for a cpeptide test to see what your insulin production is looking like. For a honeymooning type 1 this would be normal or low. For a type 2 it's normal to see hyperinsulimia. But some type 2 diabetics have exhausted their beta cells and a type 2 diabetic with worn out beta cells could have low cpeptide.

What were your symptoms on diagnosis? Did you loose weight pre-diagnosis? What's your BMI? You're 15 and it would be very unusual for type 2 to be diagnosed in someone so young unless they are morbidly obese. How are you managing on insulin? Are you having a lot of hypos on your 45u of lantus and your 1:3 I:C ratio? What does your total daily dose of insulin look like?
 
Ben have you only been taking insulin since 9th Dec '17?
I added 2st on starting insulin. If they find you are producing your own then they may stop your insulin and you may lose some of that weight you may have added. :)
Hopefully that will please you and your diabetic team?

I'm now on insulin til bariatric surgery. Maybe after too.
My insulin resistance has been evident for many decades prediagnosis so IR has had free reign.
I am intolerant to most diabetes medication. Metformin and I have a love hate relationship but insulin stops me being rotted away.
I unfortunately need insulin to combat my severe IR high bgs. Exercise reduces my IR but I cannot exercise nor walk much without huge pain. Even with Tramadol.

If I was lucky enough to discover I no longer needed insulin I would be ecstatic.

Myself and many type1s would swop places with you in an instance!

Has your consultant left you on lantus and novarapid?
When do you see them next?
 
catapillar said:
@benhippers661 about 25% of type1s are antibody negative. Being antibody negative doesn't mean you aren't type 1. It means you have idiopathic type 1 i.e. Your immune system has killed/is killing off your insulin producing beta cells we just haven't found the antibodies that are doing that in your system, yet.

You should ask for a cpeptide test to see what your insulin production is looking like. For a honeymooning type 1 this would be normal or low. For a type 2 it's normal to see hyperinsulimia. But some type 2 diabetics have exhausted their beta cells and a type 2 diabetic with worn out beta cells could have low cpeptide.

What were your symptoms on diagnosis? Did you loose weight pre-diagnosis? What's your BMI? You're 15 and it would be very unusual for type 2 to be diagnosed in someone so young unless they are morbidly obese. How are you managing on insulin? Are you having a lot of hypos on your 45u of lantus and your 1:3 I:C ratio? What does your total daily dose of insulin look like?
Click to expand...

Hi thanks for the reply :)
My symptoms started very suddenly one time on holiday. Now I know this sounds stupid but I refused to go to the doctors for just over a year (yes I know how bad that is). In that time I lost weight without trying. I know my BMI is high as i am on the large size. Since diagnostics I’ve only had one hypo but that was totally my fault. I’m about 50 units bolus a day according to mySugr. Thanks :)
 
ickihun said:
Ben have you only been taking insulin since 9th Dec '17?
I added 2st on starting insulin. If they find you are producing your own then they may stop your insulin and you may lose some of that weight you may have added. :)
Hopefully that will please you and your diabetic team?

I'm now on insulin til bariatric surgery. Maybe after too.
My insulin resistance has been evident for many decades prediagnosis so IR has had free reign.
I am intolerant to most diabetes medication. Metformin and I have a love hate relationship but insulin stops me being rotted away.
I unfortunately need insulin to combat my severe IR high bgs. Exercise reduces my IR but I cannot exercise nor walk much without huge pain. Even with Tramadol.

If I was lucky enough to discover I no longer needed insulin I would be ecstatic.

Myself and many type1s would swop places with you in an instance!

Has your consultant left you on lantus and novarapid?
When do you see them next?
Click to expand...

Hi thanks for the reply. I’m going for a blood test Friday I think and my check up is in 2 or 3 months. I am still on lantus and novorapid and they increased my carb/insulin ratio
 
benhippers661 said:
Hi thanks for the reply. I’m going for a blood test Friday I think and my check up is in 2 or 3 months. I am still on lantus and novorapid and they increased my carb/insulin ratio
Click to expand...

Make sure you get a print out of your blood test results. That will show you which tests you had, what your results were, and hopefully what the standard range is.
 
benhippers661 said:
Hi thanks for the reply. I’m going for a blood test Friday I think and my check up is in 2 or 3 months. I am still on lantus and novorapid and they increased my carb/insulin ratio
Click to expand...
Stick to your consultants carb/insulin ratio. Are you finding yourself hungrier and craving more carbs?
Are your current insulin units not reducing double figures on your meter?

People our weight can still be type 1 and some even have the same bariatric op I'm lined up for this year.
However many type2s are typically overweight, but not all. As type1s, not all are slim or not overweight.

I'm pleased your being investigated by a consultant. They will want to be sure before reducing/removing any insulin.
Was there any mention of metformin tablets?
 
ickihun said:
Stick to your consultants carb/insulin ratio. Are you finding yourself hungrier and craving more carbs?
Are your current insulin units not reducing double figures on your meter?

People our weight can still be type 1 and some even have the same bariatric op I'm lined up for this year.
However many type2s are typically overweight, but not all. As type1s, not all are slim or not overweight.

I'm pleased your being investigated by a consultant. They will want to be sure before reducing/removing any insulin.
Was there any mention of metformin tablets?
Click to expand...

Hi, I’m not finding myself too much hungrier for carbs. I am finding myself hungrier after school but I don’t eat during the day so I assume it’s that. The consultants didn’t mention any tablets.
 
So youre on 95units a day?

To find the average TDD you time your weight in kg by 0.53

So for you that would be 0.53 x 128.6 = 68. So you are on a much higher than average total daily dose than most type 1s. Your I:C ratio of 1 unit for every 3g of carbs also suggests some insulin resistance, when you consider that the average for type 1s is 1unit for every 10g of carbs.
 
catapillar said:
So youre on 95units a day?

To find the average TDD you time your weight in kg by 0.53

So for you that would be 0.53 x 128.6 = 68. So you are on a much higher than average total daily dose than most type 1s. Your I:C ratio of 1 unit for every 3g of carbs also suggests some insulin resistance, when you consider that the average for type 1s is 1unit for every 10g of carbs.
Click to expand...

I’m not sure what I’m on exactly. I just inject what my meter tells me too
 
Back
Top