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Misdiagnosed?

B

Big_Col

Well-Known Member
Messages
61
Type of diabetes
Type 1
Treatment type
Insulin
T1 for 15+ years.

Went along for my six monthly review with nurse at GP. She says that given my history of results she doesn't think I'm T1 and referred me to the local hospital!

Anyone else had this happened to them!
 
Hi. I've seen this happen but it's unusual. Did you ever have GAD and/or c-peptide tests for your T1. If so and they indicated T1 then you are still a T1. What insulin regime have you been on? Why did the nurse think you no longer needed any or lower insulin? What was your most recent HBa1C?
 
Did the nurse give any reason why she thought this? In what way did she think your results indicated this? And by results - results of what exactly?
 
azure said:
Did the nurse give any reason why she thought this? In what way did she think your results indicated this? And by results - results of what exactly?
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My HbA1c has been 42 tops.
 
Big_Col said:
No idea what those are.
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A cpeptide test shows if you are still making any insulin of your own - 15 years post diagnosis it would be very unusual for a type 1 to have residual beta cell function.

A gad test shows if you have the antibodies associated with type 1.

What is your hba1c and your total daily dose of insulin? Have you been having a lot of hypos?
 
catapillar said:
A cpeptide test shows if you are still making any insulin of your own - 15 years post diagnosis it would be very unusual for a type 1 to have residual beta cell function.

A gad test shows if you have the antibodies associated with type 1.
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If yes, probably only when I was first diagnosed.

catapillar said:
What is your hba1c and your total daily dose of insulin?
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Usually less than 40. Humulin I 6 and S around 20 spread across the day.

catapillar said:
Have you been having a lot of hypos?
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Until recently hardly ever. Last few months, a couple of times a week. I have a physical job and it happens then.
 
What is your weight? Do you know roughly how many grams of carbs you eat a day?
 
catapillar said:
What is your weight? Do you know roughly how many grams of carbs you eat a day?
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Around 120Kg. Never done carb counting. I think I've got a good idea of how much Insulin I need after all these years.
 
Big_Col said:
My HbA1c has been 42 tops.
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My last HbA1C was 33 and I'm pretty confident I'm still Type 1 (unfortunately)

Can you tell us a liitle about what you eat and your insulin doses? Maybe you just have good control?
 
40 units isn't an amazingly low TDD. To work out the average TDD for weight multiple you weight in kg X 0.53 so for you = about 60 so your TDD is below average, perhaps because you are very active.

A low HbA1c does not indicate misdiagnosis - it suggests you have good control. Sounds like the hypos are occurring in connection with an increase in activity.

If they really suspect misdiagnosis the first step should be cpeptide and gad testing.

Even then, frankly, a "misdiagnosis" isn't going to have made a blind bit of difference to your treatment/management or prognosis - you obviously need the insulin (40u isn't an insignificant amount) to keep in good control.

If it was your GP practice nurse, I'm going to suggest she was just not used to seeing type 1 s with such good control & her misdiagnosis theory is unfounded and reflects a possible lack of experience.
 
If you have a physical job, that woukd probably help your good control.

You say the nurse has referred you to a local hospital, do you not see a consultant there regularly? All Type 1s should see a consultant even if only annually.
 
Big_Col said:
25.
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Ah sorry - I can see you were answering two questions at once now:
  • Hba1c - usually less than 40
  • TDD - 20.
Even so, same applies.

You have never seen an endocrinologist in 15 years of type 1? Even on diagnosis?
 
Big_Col said:
This will be the first time since I was diagnosed.
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What?? : O That's surprising. I know some big medical centres have specialists who visit and see patients with diabetes, but 'normal' surgeries don't have that. If your surgery is anything like mine, you'll have a nurse with an interest in diabetes who tends to do the diabetes things, but most of those only really know about Type 2. Type 1 patients like myself see a consultant at the hospital as often as needed.

I believe NICE guidelines recommend this too.
 
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