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Geoff_Evans 08-30-2012 22:46

I Lived Life as a Type 1 Diabetic for 93 Days… Then Learned I Was Misdiagnosed!
 
A year ago I was hospitalized with a blood sugar level above 30 mmol/L (540 mg/dl) and suffering from severe ketoacidosis. Within 24 hours I was diagnosed (“unequivocally” by the endocrinologist on call) as a Type 1 Diabetic.

I was prescribed a regime of insulin that included 18 units of Lantus before bed and appropriate units of Novo Rapid that corresponded with my carb intake (ranging between 4 units and 10 units per meal). I lived the life of a Type 1 Diabetic for 3 months. Until, one day, I forgot to take my lunch hour insulin. A few hours later I realized my mistake and checked my blood sugar (expecting it to be high following a 74g carb lunch) only to discover that my blood sugar was actually 4.8mmol/L (86.4 mg/dl). Completely normal. I made the decision to monitor my blood sugar closely and skip my insulin injection at dinner. After a meal of 55 g of carbs I checked my blood sugar again just before bedtime. It was 5.2 mmol/L (93.6 mg/dl).

I consulted with my Endocrinologist (at St. Joseph’s Health Care in London Ontario – a leader in research for Diabetes) and, of course, it was suggested that I was merely experiencing a “Honeymoon Period”. Many websites and discussion forums also indicated that this was likely a honeymoon period. I was prepared to accept that but decided I wanted to push for more testing. I had read so much about LADA and “a-typical ketosis-prone Diabetes” (aka Flatbush) that I wanted further clarification. As a result I pushed for more testing and it was suggested that I could complete a blood test that would measure C-Peptide – a byproduct of insulin production and a clear indicator of the amount of insulin that my body was producing. If C-peptide levels were low then I had low insulin production. If C-peptide levels were high then I had high insulin production.

The test results showed that I had very high C-peptide levels, which indicated I had a high level of insulin production. So, as it turned out my issue was not that my pancreas wasn’t producing insulin (i.e. Type 1 Diabetes) but that my body was not efficiently able to process insulin and was creating an abundance of it (i.e. Type 2 or perhaps Insulin Resistance).

So, only after accidentally discovering the reality that my body was still producing insulin and then demanding follow-up tests was I able to confirm that I did not, in fact, have Type 1 Diabetes.

The doctors now suggest I’m Type 2… but even that I question. I continue to monitor my blood sugar levels but do not inject insulin nor do I take any medications such as metformin. And yet, my average blood sugar levels in the morning continue to be below 7 mmol/L (126 mg/dl).

Don’t get me wrong… I’m not proclaiming any sort of miracle cure! I’m proclaiming a misdiagnosis. In Canada, it seems, you are either Type 1 or Type 2… there is no recognition of any other version or form of Diabetes. Because I presented with high blood sugar and ketoacidosis I was conclusively proclaimed Type 1.

Has anyone else ever had this sort of experience and ultimately been correctly diagnosed with a completely different version of Diabetes?? Or some other illness altogether?

Sincerely,
Geoff Evans
London, Ontario, Canada

VeeJay 08-30-2012 23:06

Well, this is a turnaround. Most people, if misdiagnosed, are told they are T2 when in fact they are T1.

You are wise to monitor your blood sugar. If you haven't yet read the site Blood Sugar 101 I'd recommend it to increase your knowledgea about diabetes. There you will learn what is and is not normal BG levels, and the best way to test to see how your body metabolizes carbohydrates.

You probably are at least insulin resistant, and may be able to achieve normal BG through a tweakin of your diet alone. You are in a good position to avoid full blown diabetes if you do.

Geoff_Evans 08-30-2012 23:11

Thanks VeeJay. I will say that living as a Type 1 certainly forced me to re-evaluate my eating and exercise habits... having experienced the challenges of a Type 1 I know I want to do everything I can to avoid it.

Thanks for the reference to Blood Sugar 101... I'll check that out.

Shanny 08-30-2012 23:14

My guess is that if the original endo had the brains to order a test for GAD antibodies, the whole thing would have been a non-issue and you'd have been spared the insulin therapy beyond just what it took to get your blood sugar down to safe levels.

My contention is that EVERYBODY presenting with symptoms indicative of diabetes should be tested for GAD antibodies and c-peptide. Why the medical community insists on making these 'unequivocal' assumptions when there is a freakin' test that would settle the issue once and for all, is more than my feeble brain can comprehend!

(can you tell you tripped my trigger, Geoff? :rolleyes:)




Geoff_Evans 08-30-2012 23:20

AMEN Shanny! My immediate response to learning of the misdiagnosis was to proclaim that I would write a book that would reveal the incompetence of the medical world!! (Then I calmed down). The worst part is that I not only asked the on call doc... but also the actual head of the Endocrinology department if there was any doubt I was Type 1 or if there were any other tests. In their minds there was no question... high blood sugar + ketoacidosis = Type 1. Wrong.

Now I just wonder how many other people in similar situations to myself have incorrectly diagnosed.

Shanny 08-30-2012 23:54

Two of our members come to mind right off the top of my head & both presented in DKA. One is LADA and only was finally properly diagnosed because she fought like a tiger for the tests; the other is type 2 and I believe was correctly diagnosed at the outset, and while he required insulin in the beginning, is now on no meds at all.




John.in.France 08-31-2012 09:56

I think I join this club.

Two years ago, I was treated for DKA in hospital. After I got free of the insulin pump, I was given NovaMix insulin to be taken morning an evening.

I was then sent home for the weekend and when I came back on the Monday with my results, the prescription was changed - without explanation to Levemir and Prandin. So my guess is that because of the DKA I was automatically tagged as Type 1, but then due to my reaction to the Novamix (and my age), the doctor changed her opinion.

I think, that like Canada, France recognises only type 1 or type 2 - and doesn't even tell folk which they are (I still don't officially know) but some of my results fit the LADA scenario better than Type 2 but as long as I can control the numbers using diet I'll carry on pretending it's Type 2.

I really like it when the professionals are so on the ball!:rolleyes:

Shanny 08-31-2012 10:05

Quote:

Originally Posted by John.in.France (Post 115380)
So my guess is that because of the DKA I was automatically tagged as Type 1, but then due to my reaction to the Novamix (and my age), the doctor changed her opinion.

Okay - then you prob'ly weren't diagnosed correctly in the beginning. Glad you made that clear - I shouldn't be trying to tell other peoples' stories! :o




John.in.France 08-31-2012 10:11

Quote:

Originally Posted by Shanny (Post 115382)
Okay - then you prob'ly weren't diagnosed correctly in the beginning. Glad you made that clear - I shouldn't be trying to tell other peoples' stories! :o

I don't think you were far wrong.

In essence I think I was diagnosed as "diabetic" without qualification as to type and my medication prescription came out of a "standard book of rules" based on my age, weight and general symptoms.

The other detail that I would have liked to have seen is a bit of specialist follow up after my hospital treatment. Perhaps I expect too much from the French medical service :(

Oh, you sad cynic John:)

tish 08-31-2012 11:32

My doctor tells me 'medicine is not an exact science'. Interesting!

Judging by the change in numbers within a few mins in meter readings alone, not to mention different meters, how dependent are they on machines.

Hard to live with them, cant live without them...


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