Hi I was diagnosed as a type 1 diabetic by a hospital over 8 years ago, I had very high sugar levels over 44, extreme thirst, excessive urinating and I lost over a stone in 5 days. I was rushed to hospital and admitted for a week, I was on an insulin drip for 3 days and then was told I would be on insulin for the rest of my life. I have had regular appointments at the hospital over the years and apart form hypos and hypers I manage it ok. However after seeing a new diabetic doctor at the hospital he has now decided I am type 2 and ordered a c-peptide urine test. I was told to take a urine test 2 hours after eating a main meal. This test has now come back as 2.9 which is high-but I did inject insulin after I ate-I wasn't told not to. So 2 questions- firstly would me taking my insulin before urine test give a high reading and second question- could I have been misdiagnosed for all those years. I am normal weight, and otherwise fit and healthy. I have done a little research but didn't think you could change from a type 1 to a type 2 diabetic?????
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misdiagnosed as type 1 ?
- Thread starter red_rich
- Start Date
Daibell
Master
Hi. I know nothing about urine c-peptide tests only a bit about c-peptide blood tests and for the latter taking insulin does not influence the result as only the body's own insulin comes with the associated enzyme that is measured. It's very unusual for the pancreas to recover and produce more insulin but can happen. What amount of insulin and types have you been taking? I wonder why the doc thought to test you for a revised diagnosis?
catapillar
Well-Known Member
I'm on insulin (obviously) and I had a completely non detectable urinary c peptide test while on insulin, like you I wasn't told not to take for the test. I don't think it effects the test (but I am basing that on blind faith rather than and actual research).
However, a cpeptide test is not a test to determine what type of diabetes you have. If you have cpeptide it simply shows that you are producing some of your own insulin.
Urinary c peptide of 2.9 is high for a type 1 over 5 years diagnosis. But that doesn't mean you aren't type 1. Plenty of LADAs / 1.5 continue with significant residual beta cell function - because this condition is slow onset type 1 where it takes ages for the beta cells to die.
You might want to look into genetic testing & MODY - there is a diabetesgenes.org website.
But, before you will get a genetic test, they will want to test for antibodies - have you had a GAD test?
However, a cpeptide test is not a test to determine what type of diabetes you have. If you have cpeptide it simply shows that you are producing some of your own insulin.
Urinary c peptide of 2.9 is high for a type 1 over 5 years diagnosis. But that doesn't mean you aren't type 1. Plenty of LADAs / 1.5 continue with significant residual beta cell function - because this condition is slow onset type 1 where it takes ages for the beta cells to die.
You might want to look into genetic testing & MODY - there is a diabetesgenes.org website.
But, before you will get a genetic test, they will want to test for antibodies - have you had a GAD test?
I had loads of tests when they first diagnosed me - so will check if I had a GAD test when I go next week. My mother was a type 1 diabetic so maybe there is a genetic link there. The new doctor at the hospital was shocked by my high levels after my 12 week blood test and suggested meteor in- which made me I'll. But if I was producing my own insulin surely my blood levels would be low as I am having to take more and more insulin to get the low. Thanks for the advice, it's a bit concerning
catapillar
Well-Known Member
I don't think it's anything to be concerned about. It sounds like you presented with a textbook type 1 presentation. It's pretty standard that in those circumstances they don't do further diagnostic tests, they just treat it as type 1. If you need the insulin to manage your blood sugar, then being managed as type 1 isn't doing you any harm at all. I suspect it's exactly the same as you would have been treated regardless of what type of diabetes is meaning you need the insulin.
While your cpeptide is high for a long standing diabetic, I have no idea what the reference range for a non diabetic is - I am going to assume significantly higher. Whatever insulin you are producing, it's probably a lot less than someone with a working pancreas.
See if you have had GAD test. Look at LADA/1.5 definitions. And ask about genetic testing for MODY.
What is your HbA1c? What has prompted them to look into your type status? I know when I had GAD & cpeptide tests it was because the DSN was convinced I was type 2 because I was having random hypos overnight (she was wrong, I'm convinced it was lantus causing it) but my point is, they don't usually do GAD testing unless there is a query over type status.
While your cpeptide is high for a long standing diabetic, I have no idea what the reference range for a non diabetic is - I am going to assume significantly higher. Whatever insulin you are producing, it's probably a lot less than someone with a working pancreas.
See if you have had GAD test. Look at LADA/1.5 definitions. And ask about genetic testing for MODY.
What is your HbA1c? What has prompted them to look into your type status? I know when I had GAD & cpeptide tests it was because the DSN was convinced I was type 2 because I was having random hypos overnight (she was wrong, I'm convinced it was lantus causing it) but my point is, they don't usually do GAD testing unless there is a query over type status.
Hi, when I saw this new diabetic Dr - my HbA1 test was high, so I explained that I was having to take more and more insulin to get it to a normal level. He then suggested that I take Metformin-which made me really ill and then asked me to do this urine test as he suspected I was type 2. But surely if my own body was producing enough insulin and I was taking more than he recommended then I was be in a constant state of Hypo. It just really confusing. The letter I received this morning is suggesting I get weaned off insulin!!!??
catapillar
Well-Known Member
It is possible to be a type 1 with insulin resistance (which is not the same as moving from type 1 to type 2, because that is not a thing) and there are plenty of type 1s on metformin to help with insulin resistance.
Having a long honeymoon (I.e. A long time post diagnosis when you're still producing your own insulin) does not determine that you are not type 1. If your hba1c is high I'm not sure a move to reduce insulin is the best plan and you might want to discuss this with your doctor a bit more, if I were you, I would be sure to discuss:
- your presentation on diagnosis (which is textbook type 1)
- your family history & your mums type 1 diabetes
- ask if you have had a GAD test and if not, ask for antibody testing
- ask for genetic testing if the GAD test is negative
- ask what the normal (non diabetic) reference range is for a urine c peptide test is - how far outside of this are you
- ask what the plan is for reducing your high hba1c without insulin, if the plan is to wean you off insulin
If you're concerned about the plan going forward maybe get in touch with your doctor to explain that you aren't sure of his reasons for weaning you off insulin, what your diabetic status is or what the plan is for managing your high hba1c now. If you have an email address, at least it would all be in writing to discuss at your next appointment.
Having a long honeymoon (I.e. A long time post diagnosis when you're still producing your own insulin) does not determine that you are not type 1. If your hba1c is high I'm not sure a move to reduce insulin is the best plan and you might want to discuss this with your doctor a bit more, if I were you, I would be sure to discuss:
- your presentation on diagnosis (which is textbook type 1)
- your family history & your mums type 1 diabetes
- ask if you have had a GAD test and if not, ask for antibody testing
- ask for genetic testing if the GAD test is negative
- ask what the normal (non diabetic) reference range is for a urine c peptide test is - how far outside of this are you
- ask what the plan is for reducing your high hba1c without insulin, if the plan is to wean you off insulin
If you're concerned about the plan going forward maybe get in touch with your doctor to explain that you aren't sure of his reasons for weaning you off insulin, what your diabetic status is or what the plan is for managing your high hba1c now. If you have an email address, at least it would all be in writing to discuss at your next appointment.
