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Type 2 to Type 1?

LouLou70

LouLou70

Member
Messages
5
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Hello. I've just been told that it is highly likely that I am 'now' type 1 diabetic after being type 2 for 10 years. I have had very high hba1c readings, 97 in Jan, 85 in Apr and 63 in Sept. I'm on metformin and dapagliflozin. In late Sept I had what I thought was the worst hypo ever, cold sweats like someone was pouring water over my head, couldn't see properly or hear very well, felt sick. I told my nurse about this and she ordered a urine test to check for type 1. It's come back that I had very little to no insulin in the urine. My question to you all is could I possibly have been type 1 all along? How does type 2 become type 1? I'm so confused. Thank you all in advance.
 
Type 2 doesn't become Type 1, but a Type 1 can also become Type 2 alongside their Type 1.
Type 1 is caused by an auto immune problem causing the pancreas to stop producing insulin, Type 3 is the same sort of thing but caused by drugs or surgery.

What often happens is that in an adult who isn't underweight, there is a presumption that diabetes is Type 2 rather than Type 1 unless the BG levels are so high as to be an immediate danger. Type 1 can only be diagnosed properly via 2 blood tests which are both costly and take several weeks to obtain results (in the UK). Many Type 2 adults are initially diagnosed as Type 2 these days (probably more patients in total than are initially diagnosed as Type 1)!

You were almost certainly Type 1 from the start, but presumably your 'honeymoon period' during which time your pancreas was still (occasionally) producing some insulin, lasted a long time.
 
LouLou70 said:
Hello. I've just been told that it is highly likely that I am 'now' type 1 diabetic after being type 2 for 10 years. I have had very high hba1c readings, 97 in Jan, 85 in Apr and 63 in Sept. I'm on metformin and dapagliflozin. In late Sept I had what I thought was the worst hypo ever, cold sweats like someone was pouring water over my head, couldn't see properly or hear very well, felt sick. I told my nurse about this and she ordered a urine test to check for type 1. It's come back that I had very little to no insulin in the urine. My question to you all is could I possibly have been type 1 all along? How does type 2 become type 1? I'm so confused. Thank you all in advance.
Click to expand...

I had a series of minor ailments in my 40's and had many tests. A GP told me at the beginning that my blood glucose was 'a bit high' but didn't follow up on it.
Roll on around 10 years to sudden uncontrolled weight loss and weeing for England. I was then diagnosed as a T1 at the age of 54. So I believe that while most T1's probably have a rapid onset, that may not be true for everybody, especially if diagnosed later in life.
The difference is difficult to diagnose in some cases and I had people at the hospital telling me I was definitely T1 and people at my GP's clinic saying well , you might be T2 for a couple years afterwards.
 
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I was T2 for over five years until I was rediagnosed as T1, I believe my very strict LC diet hid the symptoms at first and then I was put on insulin a couple of years before rediagnosis due to tablets or LC no longer working on me. Am I T1 or T2? I have very little trust in anything my doctors say to be honest so I don’t really know, they say my c-pep result of 0.05 means it’s impossible I’m not T1, my insulin use now I am on a very strict keto diet is very very low so not sure I can be insulin resistant, the always straight forward world of diabetes huh.

I hope you find some answers
 
Fenn said:
I was T2 for over five years until I was rediagnosed as T1, I believe my very strict LC diet hid the symptoms at first and then I was put on insulin a couple of years before rediagnosis due to tablets or LC no longer working on me. Am I T1 or T2? I have very little trust in anything my doctors say to be honest so I don’t really know, they say my c-pep result of 0.05 means it’s impossible I’m not T1, my insulin use now I am on a very strict keto diet is very very low so not sure I can be insulin resistant, the always straight forward world of diabetes huh.

I hope you find some answers
Click to expand...
This sounds like a very clear initial misdiagnosis to me, why would you think you're anything but T1?
 
Antje77 said:
This sounds like a very clear initial misdiagnosis to me, why would you think you're anything but T1?
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Because I was overweight and told I was T2, my dad and mum were T2, one Nan T2 (one Nan T1) I fit the profile of T2, low carbing worked a treat for ages, I lost 6 stone and got super fit, I wasn’t just T2 I was a cured T2, until I wasn’t lol
 
Fenn said:
Because I was overweight and told I was T2, my dad and mum were T2, one Nan T2 (one Nan T1) I fit the profile of T2, low carbing worked a treat for ages, I lost 6 stone and got super fit, I wasn’t just T2 I was a cured T2, until I wasn’t lol
Click to expand...
Maybe they should have tested you for MODY as well? (Lots of diabetic family members). (I have a T2 dad and T1 mum but as I was diagnosed as a child there was never any question of it not being T1).
 
Fenn said:
I was T2 for over five years until I was rediagnosed as T1, I believe my very strict LC diet hid the symptoms at first and then I was put on insulin a couple of years before rediagnosis
Click to expand...
Fenn said:
Because I was overweight and told I was T2, my dad and mum were T2, one Nan T2 (one Nan T1) I fit the profile of T2, low carbing worked a treat for ages, I lost 6 stone and got super fit, I wasn’t just T2 I was a cured T2, until I wasn’t lol
Click to expand...
But you needed insulin within two or three years after your initial T2 diagnosis, if my calculations are correct.
This in itself is a reason to suspect something other than T2 is going on, especially in someone who is taking their diet very seriously.

Being fat or having a family history of T2 does not protect you from autoimmune conditions, and it's not unusual for the honeymoon period to last a couple of years.
I fit the profile of a T2 (39 year old couch potato, BMI of 35, some family history), but needing insulin shortly after diagnosis despite changing my diet made us look a bit further.
In hindsight, I likely had diabetes for two years before diagnosis (that's when the thrush started) so I guess that's where most of my honeymoon period went.

Your story sounds like a classic T1 (LADA) history to me.
 
This is still, I think, a grey area.
For myself, I have been diagnosed as T2 for 15 years now, but my BG control is getting harder each year.
I expect that at some point (unless I hit the age when HCPs say "" poor old thing, not worth the hassle" and relax my targets) I will move onto stronger medications and perhaps insulin.
At that point, would some go "Hah! I knew it! T1 all along!" or perhaps would it turn out that my pancreas like my knees has become tired and worn out?

As I understand it you can have two major tests.
One is for antibodies to diagnose an auto immune reaction which is killing off Beta cells.
The other is for insulin production.
There is a further test for insulin resistance - that is you are still producing insulin but it is not working very well.
Evidence of low to zero insulin production with detection of antibodies is a pretty strong diagnosis of T1.
Just low insulin production is probably T1, but not definitive.

There have been theories that the pancreas can just wear out after a long time of abuse producing too much insulin to counter insulin resistance.
Again this is not tested for at diagnosis, nor later on.

So some things are less clear cut than others.
I would be interested (if I hang on for another 5 years) to see someone try to convince me that I have had a 20 year honeymoon period.:D

Oh, and T2s on insulin are not classed as T1 so where is the dividing line?
 
LouLou70 said:
I told my nurse about this and she ordered a urine test to check for type 1. It's come back that I had very little to no insulin in the urine.
Click to expand...

I think you may have misheard.
As far as I can tell at the moment insulin isn't normally found in urine and a lack of insulin in the urine would not indicate T1, nor in fact T2.
Urine tests are usually for sugar and ketones.

If anyone knows of the test the OP reported, I would be very interested to know about it.
 
LittleGreyCat said:
I think you may have misheard.
As far as I can tell at the moment insulin isn't normally found in urine and a lack of insulin in the urine would not indicate T1, nor in fact T2.
Urine tests are usually for sugar and ketones.

If anyone knows of the test the OP reported, I would be very interested to know about it.
Click to expand...
A C-peptide test to determine insulin production can be a urine test, so it sounds like this is what has been tested.
 
Antje77 said:
A C-peptide test to determine insulin production can be a urine test, so it sounds like this is what has been tested.
Click to expand...

Interesting.
I didn't realise there were urine test options.
For one heady moment I thought I might be able to buy cpeptide sticks to go with the keto sticks in the bathroom cabinet.
However no such luck.
Is there any reason to do the urine test instead of the blood test?

Also noted that cpeptide to creatinine ratio is used sometimes to try and differentiate between T1 and T2 and diagnose MODY.
However almost impossible to get the test.

Every day a school day!
 
LittleGreyCat said:
I think you may have misheard.
As far as I can tell at the moment insulin isn't normally found in urine and a lack of insulin in the urine would not indicate T1, nor in fact T2.
Urine tests are usually for sugar and ketones.

If anyone knows of the test the OP reported, I would be very interested to know about it.
Click to expand...
It was a gad antibody test and showed 'little to no insulin' in my urine.
 
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