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Misdiagnosed type 1?

A

Amy2993

Active Member
Messages
31
Hello,

I was diagnosed type 1 after going into DKA a month ago. My question is, does anyone get misdiagnosed type 1 and that’s not what they have? I’m taking very little insulin now, which I know is due to the honeymoon period. I know it’s probably wishful thinking, but are there any cases where the BG levels return to normal and they don’t have diabetes?
 
Did you have the antibody tests done? If you did, and it was positive, it won't change. When you make antibodies that means your body is attacking the cells that make insulin. Your body will still try to keep making beta cells to make insulin until it loses the battle. Sometimes they think you might be able to slow the process down, but you can't stop it. (yet, maybe one day)

The honeymoon period can last years and a lot of people are misdiagnosed as a type 2 partly because you do still make insulin for quite a while. Most type 1's require insulin within 3 years, which means some make enough to get by for quite a while.
 
It's very unlikely that being diagnosed T1 that it's wrong. I've seen one or two posts where that may have happened. A C-Peptide test is pretty conclusive and a positive GAD also adds to that.
 
Hello and welcome to the forum @Amy2993

Sadly it’s highly unlikely you have been misdiagnosed after DKA, after you start taking insulin your pancreas becomes less stressed and will start to temporarily produce insulin hence this period of ‘bargaining’ I was the same as me after diagnosis thinking they had got it all wrong. Diagnosis brings many emotions with it, have a read of this thread: https://www.diabetes.co.uk/forum/threads/5-things-any-newly-diagnosed-type-1-should-know.175425/

Hope this helps.
 
Hello,

Thanks for your replies! I’ve seen people writing about C-peptide and antibody tests. I don’t know what either of those are and so I’m unaware if I had any of those tests. I’m sure everyone feels this way at first, just the doctor as my surgery questioned why I had been diagnosed type 1 and seem confused about it, which maybe gave me some false hope.
 
A few have had that assumption made just on the basis of a high hb1ac. Dka is unusual in type 2 but still possible. I guess if these were the sole reasons for deciding type 1 it’s possible it could be wrong. Usually the other tests would have been done though to confirm. Give your surgery/hospital a ring and ask which tests were done and what the results were (numbers not just words) to put your mind at rest. Hopefully this will allow you to move forward and not be stuck on this question at least.
 
@Amy2993 An antibody test, the most common is a GAD test, tells you if you are making the antibodies that attack your beta cells. The beta cells are responsible for making insulin. If you have those antibodies then that process has started and doesn’t stop. Rarely a type 1 could still test negative but not make insulin. They don’t know the why of that.

A C-peptide test tells how much insulin you are making. Over the initial honeymoon period of course that changes. But a low or low normal is a sign of type 1, high or high normal is a sign of type 2. A type 2 makes insulin, usually a higher amount, they are just insulin resistant so they don’t use insulin well.

When you get DKA it is caused by a lack of insulin, hence why it is very unusual for a type 2 to get because they still make some kind of insulin. A few over time sometimes end up lacking or certain medications for diabetes can make you more prone to the possibility. But DKA is almost always a type 1 problem.

So yes as @HSSS has said call and ask what tests were done. If they just diagnosed from the DKA the odds are still you are a type 1, but I would ask for the tests to be done to confirm because otherwise you will always wonder. And it’s best if you know so you can make your decisions knowing you have to always have insulin or not.
 

There are said to be some conditions that cause high blood sugars, most notably pancreatitis but I regret to inform you but no other condition apart from type 1 diabetes can cause diabetic ketoacidosis. Type 2s still produce insulin so they make some insulin to prevent DKA but type 1s don’t
 
I was one of those rare T2s. When i was admitted to hospital they said I was only hours away from a fatal coma. My hba1c wasn't that high at 125 but I was told that I probably had undiagnosed T2 for over 20 years. I only had mild symptoms - apart from.massive weight loss.

Initially the doctors thought I might have T1 and was put straight on insulin. I am now diabetes resolved and no longer on insulin but have to stay on under 20g carbs.
 

Do you mind me asking how old you are? I’m 26 and had lost a significant amount of weight in the 6 months leading up to the DKA. I’ve pretty much come to accept that I’m type 1 now, but probably deep down there is still that doubt.
 

I guess DKA is different for everyone. I had a HbA1C of 136 and I honestly felt okay and the doctor even said I looked healthy. Only complaints were thirst and weight loss nothing else which is why I was undiagnosed for a year as a type 1 and lost more than 30kg (I should’ve known but I just put it down to a “fast metabolism”).

If I hadn’t been persuaded by my family to call the doctors I would’ve burnt the 3kg remaining fat on my body (based on my scale) and then probably started cannibalising my own organs, muscles and tissue.
 
Amy2993 said:
Do you mind me asking how old you are? I’m 26 and had lost a significant amount of weight in the 6 months leading up to the DKA. I’ve pretty much come to accept that I’m type 1 now, but probably deep down there is still that doubt.
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I was very early sixties when diagnosed and had also lost a significant amount of weight in the year prior to diagnosis. I was basically just skin and bones.
 
I was teaching pilates 6 days a week. One of the hospital doctors told me that they were trying to work out how I was even upright and walking let alone teaching pilates.

I must admit though that some of my clients had expressed concern at how thin and frail I was looking. I had definitely started to cannibalise my muscles - but put it down to getting older.

I only went to the doctor because I used my husband's blood pressure machine which showed my resting heart rate at 122.
 
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