Misdiagnosis

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bryan low

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I was diagnosed with type 1 diabetes 7 years and immediately put on abasaglar and Humalog, diagnosis was made on the spot due to rapid weight lose and Hba1c blood test.

had a peptide blood test last moth and got a letter to say that in actual fact I am type 2, having been on insulin for 5 years they have said to keep insulin regime going until next appointment, next year.

will at some point be able to throw the insulin in the bin and start tablet treatment, to say I am confused and to be honest a little angry as life was turned upside down at the beginning.
 
How much insulin do you take and how are your blood sugars @bryan low ? It might be that you stay on pretty much the same insulin regime anyway, as some Type 2s do need insulin quite early in diagnosis.
 
I take 24 units of Abasaglar in the morning and bolus at meals, never need much more than 4-5 units of humalog, I have good hba1c checks and clinic have been happy with the control I have
 
Ok, so not vast amounts of insulin then. I wonder if they’ll start by adding Metformin and reducing your insulin. It must be frustrating to have to wait until your appointment to find out the plan.
 
Its not very fair, letter states " there is no great incentive to change anything but we can discuss things further at next clinic appointment"
 
That implies to me that they might keep you on the same or similar regime @brian low Perhaps they’ll offer you some things to try but it sounds to me that they’re happy with your control on insulin. If you insisted you wanted to try something else, they might then offer you some options to trial.

Just the feeling I get from that bit you’ve quoted.
 
I went onto a basal/bolus routine last year after 10 years of good control on Metformin. I then restarted Metformin, added Empaglifozin & started titrating doses down. I got to a point at the end of the year where I stopped the bolus & had the basal down to 9u, which I'm still on. So you may be able to do something similar.

The original plan was to hopefully wean me off insulin altogether, but this hasn't happened. I'm due a full review in December & need a discussion around whether to continue with this routine or maybe go back to bolus. After the last HbA1c it was suggested that there are other significant benefits with the oral meds, so that warrants further investigation.
 
Sorry to hear about the confusion around your diabetes type @bryan low

Diabetes does seem to be a fickle and tricksy character when it comes to diagnosis, and that the ‘types’ are really must umbrella terms for various shades of different experience and pathology.

There aren’t really definitive tests which can separate types with high levels of confidence, only measures which can add some clarity to the overall clinical presentation (which still seems to be the best way of deciding the most appropriate label). Checks like GAD antibodies and cPeptide still have potential false positives or false negatives if simply taken at face value.

Hope you are able to transition to a more suitable treatment for you.

If there is ‘no real incentive to change anything’ you might argue that since your diabetes appears to fall between two types, you’d prefer to stick with a T1 label, because of the way health economics divides up budgets and which types of diabetes are generally offered which sorts of diabetes education courses, and technologies?
 
I would be wary of a change of diagnosis based solely on a C-pep result. Were you given instructions to prep for the test by eating something unbolused an hour or so before the blood test? And of course test results can get mixed up occasionally. Was the blood sample drawn at the hospital or GP practice? It needs to be frozen within 20 mins of being drawn and sent off to the lab frozen which most GP surgeries do not have facilities for, so potentiall for the test to be compromised by mishandling. It may also be that you are a slow onset Type 1 and therefore still producing some insulin but not enough and they are perhaps mistakenly taking that as an indication that you are type 2 by assuming that after 7 years, your honeymoon period would be over, when there is at least one study which shows that some people who have been diagnosed decades with Type 1 still have some insulin production, but not enough to survive without insulin.
I think I would want to know the test results and why they think that indicates a change of diagnosis.

Your Insulin needs suggest Type 1 rather than Type 2 because they are reasonably small doses and the noticeable weight loss at diagnosis usually indicates Type 1.

I wonder why they are suddenly reassessing your diagnosis and the cynic in me wonders if it might be an attempt at a cost cutting exercise....
 
everydayupsanddowns said:
Sorry to hear about the confusion around your diabetes type @bryan low

Diabetes does seem to be a fickle and tricksy character when it comes to diagnosis, and that the ‘types’ are really must umbrella terms for various shades of different experience and pathology.

There aren’t really definitive tests which can separate types with high levels of confidence, only measures which can add some clarity to the overall clinical presentation (which still seems to be the best way of deciding the most appropriate label). Checks like GAD antibodies and cPeptide still have potential false positives or false negatives if simply taken at face value.

Hope you are able to transition to a more suitable treatment for you.

If there is ‘no real incentive to change anything’ you might argue that since your diabetes appears to fall between two types, you’d prefer to stick with a T1 label, because of the way health economics divides up budgets and which types of diabetes are generally offered which sorts of diabetes education courses, and technologies?
Click to expand...
I was given no warning, I was in getting hba1c check and they said we are taking blood to test cpep, this is the letter
 

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rebrascora said:
I would be wary of a change of diagnosis based solely on a C-pep result. Were you given instructions to prep for the test by eating something unbolused an hour or so before the blood test? And of course test results can get mixed up occasionally. Was the blood sample drawn at the hospital or GP practice? It needs to be frozen within 20 mins of being drawn and sent off to the lab frozen which most GP surgeries do not have facilities for, so potentiall for the test to be compromised by mishandling. It may also be that you are a slow onset Type 1 and therefore still producing some insulin but not enough and they are perhaps mistakenly taking that as an indication that you are type 2 by assuming that after 7 years, your honeymoon period would be over, when there is at least one study which shows that some people who have been diagnosed decades with Type 1 still have some insulin production, but not enough to survive without insulin.
I think I would want to know the test results and why they think that indicates a change of diagnosis.

Your Insulin needs suggest Type 1 rather than Type 2 because they are reasonably small doses and the noticeable weight loss at diagnosis usually indicates Type 1.

I wonder why they are suddenly reassessing your diagnosis and the cynic in me wonders if it might be an attempt at a cost cutting exercise....
Click to expand...
 
bryan low said:
I was given no warning, I was in getting hba1c check and they said we are taking blood to test cpep, this is the letter
Click to expand...

Ah, so they did the Type 1 antibodies test too, which was negative. That would be part of their re-diagnosis of your diabetes type.
 
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