Type 1 Confusion

arunemils

Member
Messages
15
Recently I have been diagnosed with T1

My sugars can still be as low as 4 and the doctors haven’t put me on insulin yet.
Is this normal and if not is there a chance I’m not T1?
 

arunemils

Member
Messages
15
Hi it is impossible to say and I'm afraid none of us can give any sort of diagnosis simply because we are not medically trained.

I run at 4 a lot but I'm still T1.

I guess the reason you have been diagnosed is because of some blood tests that have been done?

Had a glucose test and I was at 19


Does life expectancy shorten with diabetes
 

MeiChanski

Well-Known Member
Messages
2,992
Type of diabetes
Type 1
Treatment type
Insulin
That's really strange if you haven't been put on insulin yet, because as far as i'm aware as soon as anyone is diagnosed is put on insulin asap. But hey, I could be wrong. I'd be quite worried if you're running at 19 for a long period of time, has it come down? Are you seeing a diabetes specialist nurse or consultant to advise you on how to control your diabetes? if you look after yourself, diabetes doesn't shorten your life, my boyfriend's friend's grandma lived until she was 104 with T1.
 
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arunemils

Member
Messages
15
No! only if you ignore it.

I am half way through my 5th decade and apart from a bit of background retinopathy I am complete and fully intend to be around for a while yet :)

Thing is that you may be in the honeymoon period where the pancreas still produces some insulin, but if your testing and hitting 19 then I would be straight back on to your medical team and ask them for advice or to sort some sort of health care out.

I hit 19 on my glucose test but I’m now back to low scores
 
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MeiChanski

Well-Known Member
Messages
2,992
Type of diabetes
Type 1
Treatment type
Insulin
Diagnosed after doing a glucose test

They said they are confused as my sugars go low when I change my diet but I’m too healthy (tall,skinny,sporty) to be T2. ThYs what they said
T2 can happen to people who are either quite young and quite sporty. It is often assumed that T2 is the obese majority, As people say you don't need to be fat to be a diabetic and they too, are running on high BG. DNA/genetics play a role in some cases.
 

SB.25

Well-Known Member
Messages
369
Type of diabetes
Other
Treatment type
Insulin
Hi, if I was you I would ask for a GAD antibody blood test and a c-peptide test.

GAD checks for antibodies which cause T1 (however 25% of T1 do not have the antibodies. My consultant told me that at the moment they can only test for 3 antibodies but they know that 7 antibodies can cause T1).

C peptide checks to see how much insulin you naturally produce. A high c peptide indicates T2 and a low c peptide indicated T1.

The tests combined can help to clarify whether you are T1 or T2. However it can still raise uncertainty. I am negative for antibodies(could indicate T2) but a low c peptide with high blood glucose (indicates T1).

In the end it’s the treatment which is most important and getting good levels rather than what type you are (albeit is good to know a type and I can’t wait to finally have one!).

The other test to have is MODY (a genetic form of diabetes) which is caused by a single gene mutation. This is a rare form which I am currently being tested for.

Hope this helps!
 

arunemils

Member
Messages
15
Hi, if I was you I would ask for a GAD antibody blood test and a c-peptide test.

GAD checks for antibodies which cause T1 (however 25% of T1 do not have the antibodies. My consultant told me that at the moment they can only test for 3 antibodies but they know that 7 antibodies can cause T1).

C peptide checks to see how much insulin you naturally produce. A high c peptide indicates T2 and a low c peptide indicated T1.

The tests combined can help to clarify whether you are T1 or T2. However it can still raise uncertainty. I am negative for antibodies(could indicate T2) but a low c peptide with high blood glucose (indicates T1).

In the end it’s the treatment which is most important and getting good levels rather than what type you are (albeit is good to know a type and I can’t wait to finally have one!).

The other test to have is MODY (a genetic form of diabetes) which is caused by a single gene mutation. This is a rare form which I am currently being tested for.



Hope this helps!


I had the antibodies test and I had none.
The MODY test could be what I am as I only
One t1 in my family and it’s my great grandma
 

SB.25

Well-Known Member
Messages
369
Type of diabetes
Other
Treatment type
Insulin
I had the antibodies test and I had none.
The MODY test could be what I am as I only
One t1 in my family and it’s my great grandma

Did you have a c- peptide test? If so, what was the result? If not I would perhaps ask for one.

Just because you didn’t have antibodies doesn’t mean you are not T1.

MODY is a rare form of diabetes - look on the website for further information :). THe test itself is quite expensive as blood tests go, so it took about a month for me to get accepted for having the test. I understand I am the first person to have such test in 4 years in my london borough. I am currently waiting for the results which take 8 weeks.

I am also not the usual T2 diabetic - young, slim and pretty healthy. So that is why there are doubts that I am T2 - albeit is possible.
 

arunemils

Member
Messages
15
Did you have a c- peptide test? If so, what was the result? If not I would perhaps ask for one.

Just because you didn’t have antibodies doesn’t mean you are not T1.

MODY is a rare form of diabetes - look on the website for further information :). THe test itself is quite expensive as blood tests go, so it took about a month for me to get accepted for having the test. I understand I am the first person to have such test in 4 years in my london borough. I am currently waiting for the results which take 8 weeks.

I am also not the usual T2 diabetic - young, slim and pretty healthy. So that is why there are doubts that I am T2 - albeit is possible.

I would do anything for my results to be t2
Atleast it’s easier to manage but at this rage I’m t1


I had glucose tolerance test done
 

SB.25

Well-Known Member
Messages
369
Type of diabetes
Other
Treatment type
Insulin
I would do anything for my results to be t2
Atleast it’s easier to manage but at this rage I’m t1


I had glucose tolerance test done
I think it’s a matter of opinion of what is easier to manage.

Whilst a lot of T2 can manage with diet and exercise or even with some tablets, they are usually insulin resistant and consequently have to watch what they eat continuously.

If you are T1 and inject insulin, you can eat a normal diet and if you did want the occasional treat, you can inject insulin for it. Although many T1s still have a healthy/low carb diet to minimise the amount of insulin which is needed, this is not always required.

You will learn what is best for you and what foods you can and can’t tolerate and the impact it has on your levels.

Personally I feel much better and have more every now that I am on insulin :).
 

MeiChanski

Well-Known Member
Messages
2,992
Type of diabetes
Type 1
Treatment type
Insulin
I would do anything for my results to be t2
Atleast it’s easier to manage but at this rage I’m t1


I had glucose tolerance test done

I don't think you can alter or change how your body works or coping. Again it is a matter of opinion, I'm glad doctors picked up on your diagnosis asap. whereas with me, they took 3-4 weeks to say i'm a T1 diabetic and vomiting is the last stage/symptom of DKA. T2 diabetics from what I read have a much stricter control on their BG levels and avoid a lot of certain foods to keep themselves in range. While i'm sitting here with a sandwich nomming away with insulin on board. With the right Diabetes team, equipment and insulin, it'll be like second nature. It all took us time, years, days, weeks, months to get it right, but hey we have our dark times. Although i'm not feeling 100%, I can say I feel a lot better than I did in 2001.
 

arunemils

Member
Messages
15
I don't think you can alter or change how your body works or coping. Again it is a matter of opinion, I'm glad doctors picked up on your diagnosis asap. whereas with me, they took 3-4 weeks to say i'm a T1 diabetic and vomiting is the last stage/symptom of DKA. T2 diabetics from what I read have a much stricter control on their BG levels and avoid a lot of certain foods to keep themselves in range. While i'm sitting here with a sandwich nomming away with insulin on board. With the right Diabetes team, equipment and insulin, it'll be like second nature. It all took us time, years, days, weeks, months to get it right, but hey we have our dark times. Although i'm not feeling 100%, I can say I feel a lot better than I did in 2001.

I am lucky as they found signs
Of t1 accidenlty from a random blood test

Insulin will take time
To become apart of my lifestyle but
Isn’t something I
Want to do
 

arunemils

Member
Messages
15
I think it’s a matter of opinion of what is easier to manage.

Whilst a lot of T2 can manage with diet and exercise or even with some tablets, they are usually insulin resistant and consequently have to watch what they eat continuously.

If you are T1 and inject insulin, you can eat a normal diet and if you did want the occasional treat, you can inject insulin for it. Although many T1s still have a healthy/low carb diet to minimise the amount of insulin which is needed, this is not always required.

You will learn what is best for you and what foods you can and can’t tolerate and the impact it has on your levels.

Personally I feel much better and have more every now that I am on insulin :).

I guess but insulin isn’t something I want to be on. But If it’s needed I will use it

Hopefully there’s a chance but life’s life
 

MeiChanski

Well-Known Member
Messages
2,992
Type of diabetes
Type 1
Treatment type
Insulin
I am lucky as they found signs
Of t1 accidenlty from a random blood test

Insulin will take time
To become apart of my lifestyle but
Isn’t something I
Want to do

I'm sorry to hear that, but if you're depressed/angry/etc in any way, please speak to your Diabetes team for help or advice. it is a bit of a shock so it'll take time to accept that you have this condition. I remember my DSN gave me this very serious, stern and deep talk, he said to me "you need to take insulin because insulin is your life".
 
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arunemils

Member
Messages
15
I'm sorry to hear that, but if you're depressed/angry/etc in any way, please speak to your Diabetes team for help or advice. it is a bit of a shock so it'll take time to accept that your have this condition. I remember my DSN gave me this very serious, stern and deep talk, he said to me "you need to take insulin because insulin is your life".

It was a shock and when I was diagnosed I would think I was in a coma dreaming and it would give me bad paranoia,
I am going to seek counselling for my paranoia soon and hopefully it’ll go. But insulin is life and it’ll just become apart of my life
 
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MeiChanski

Well-Known Member
Messages
2,992
Type of diabetes
Type 1
Treatment type
Insulin
It was a shock and when I was diagnosed I would think I was in a coma dreaming and it would give me bad paranoia,
I am going to seek counselling for my paranoia soon and hopefully it’ll go. But insulin is life and it’ll just become apart of my life
Yes, there is a lot of help available and therapists tailored to long term health conditions, such as diabetes. but again if you have time please contact your DSN, they are the best at advising your insulin needs and dose adjustments, maybe ask about the DAFNE course for carb counting, it gives a better insight on foods, activities, sick day rules etc.
 

arunemils

Member
Messages
15
Yes, there is a lot of help available and therapists tailored to long term health conditions, such as diabetes. but again if you have time please contact your DSN, they are the best at advising your insulin needs and dose adjustments, maybe ask about the DAFNE course for carb counting, it gives a better insight on foods, activities, sick day rules etc.

Okay thanks :D

Hopefully one day there will be some sort of
Cure.
 
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Diakat

Expert
Retired Moderator
Messages
5,591
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
The smell of cigars
Do you have any follow up appointments booked? I find it unusual that doctors have said you are T1 and sent you off with no plan to start insulin and no instructions regarding high levels.
Your profile has you at 16 so still a minor and in need of more care than an adult may expect.
 
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