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Misdiagnosed type 1

A

Amy2993

Active Member
Messages
31
Hello,

I was diagnosed in June after DKA as a type 1. I was on insulin for 3 months before my levels were fine and I was using none eventually. I was tested for antibodies which came back negative. The doctors assured me I was type 1 and this was just a good honeymoon period, though I struggled to believe it, explained it was denial which I understand happens.

Now I’m fully aware I may be a rare case. But I just want to let others know in case they ever have the same issue. Today at my consultant appointment he has said I was misdiagnosed type 1. I do not have diabetes. He couldn’t say why I went into DKA, but he said he can quite confidently say I am not type 1.

Just want to put it out there as I couldn’t find anyone who had been through a similar situation online. I realise this is a very rare case and I’m not bragging here as I realise how difficult it must be for all you.

But just in case anyone looks this up in the future, it’s possible to be misdiagnosed type 1.

Thank you
Xxx
 
Wow, @Amy2993 ! What a rollercoaster you have been riding all this time.

Did you consultant suggest you keep a close eye on things over time?

I was diagnosed T2 in 2013, and have had excellent HbA1c results since then, albeit on a reduced carb diet. I see and Endo for a wonky thyroid, and his throwaway remark, closing a meeting, a couple of years ago was to keep an eye out for that sneaky LADA as it can be a tricky devil.

Please, please don't think I am trying to burst your happy bubble, because I imagine you are delighted, but more to urge a bit of mindfulness as you move forward.

Fingers crossed for you.
 
That's brilliant. Did they check your insulin production to see if you were producing enough?
 
As Ciruspony says a C peptide check might be in order to see what your fasting insulin levels are. The antibody test may not be conclusive if the need for antibodies went away before you got tested.
I have honestly never heard of someone getting ketoacidosis when not type 1 without insulin so your post is fascinating. Not that I am a doctor and I don't know of any other reasons why you got DKA.
I'd keep up the vitamin D levels to keep your immune system so no autoimmune reaction gets triggered. For the same reasons you might reduce exposure to gluten as there is a connection with that autoimmune reaction too.
I hope you remain diabetes free!
 
Yes he mentioned LADA, but said he thought it was extremely unlikely. He said he personally hasn’t know a case of DKA, where it wasnt type 1 or anorexic or alcoholic, but he said strange things happen and perhaps we will never know why the DKA happened. But he said with some certainty it wasn’t not diabetes.
 
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He did tell me to keep an eye once a month on my levels, and will continue to see them annually just to ensure everything was still ok.
 
Yes has a C-peptide which he said was normal and antibodies are negative, he did say a small percent a negative for antibodies. But he genuinely believed it was not diabetes
 

Hi Amy, thanks for posting. Not many Consultants/GPs have seen cases of DKA in type 2 say, but it does exist. My case seems similar to yours initially in that I had DKA (albeit following months of symptoms of high glucose). I went onto insulin and quickly began getting normal numbers so they took me off insulin for 3 months. During this period they did a C Peptide test which showed I was producing insulin but 'low normal', they did antibody tests which showed positive for 'GAD'. I was diagnosed as type 1 and told because of the honeymoon period I could possibly go up to 3 years or more without using insulin BUT would need it eventually. I stayed on small doses of insulin and now, 3 years later my hb1ac would show pre diabetic levels but I know that I am type 1 nonetheless. Are you able to tell us HOW he came to that conclusion as I assume it wasn't just based on your normal hb1ac levels or the fact you've managed without insulin? I hope you don't mind us asking but there must be a specific reason WHY he says you do not have diabetes because not using insulin and a negative antibody test does NOT (on its own) rule out diabetes, what symptoms did you have leading up to your DKA? x
 

Or hyperemesis during pregnancy. Been there!
 
Any chance you'd had covid before the dka? Doctors still seem to be discovering new ways it can mess up different organs....? But I am guessing that they would have alreadyxtested for that.
 
Wow incredible results for you! Keep us updated if any changes!

This is how I was diagnosed 1 month ago in hospital with a dka. But I’m mixed on whether I want a misdiagnosis, sounds so weird I know. But - I actually look after myself now! I have no other choice! I went into hospital drinking a bottle of full fat coke! As soon as I was diagnosed I stopped eating so much sugar and also quit smoking and now I cook healthy for my family and enjoy sweet treats such as 90% dark chocolate instead, would I have done this without being diagnosed - no I would have never had the motivation!
 

This! I am 100% more cantered on healthy eating than pre diagnosis. Though to be fair, I had always prepared food from scratch including all bread and cakes, and had a fairly balanced diet. The problem was over eating. But now I am very strict and have managed to maintain a weight below 9st 5lbs for the first time in my adult life. I have always struggled with weight. Losing vast amounts when pregnant, due to hyperemesis. Then going back up to 10-11 stone. Lost shed loads of weight quickly, prior to diagnosis, then put about 5lbs back on and have maintained that easily for the last 7 years. I do not over eat, never ever snack if it requires insulin. Very rarely eat sweet products and feel so much better for it. Would I have done this pre Type 1? Absolutely not.
 
Thanks for sharing. It's been my dream since day 1 that my specialist tells me that I was misdiagnosed, and I don't have type 1 diabetes.
 
hi i have pancreatitis, i was diagnosed with supposedly type 1 3 year ago, i can go without insulin an was told time an time again im type 1, but i seen a consultant who actually told me my antibodies were negative also, after the others saying i am, iv not had dka or anything, but i can live without insulin, as iv told them is till produce, loads said honeymoon, but now i was told it isnt an my bs will be because my pancreatitis, believe it or not, my partner an daughter or type 1, but that is through my partner passing it on, mine is from the pancreatitis,, the consultant is going to do a test when covid dies down
 
Antibodies will test whether your diabetes is autoimmune related, but if your pancreatitis is from other causes (infection?), then you may be negative for antibodies, but still fail to produce enough or any insulin if the insulin producing beta cells have been damaged. The typical test to measure whether you are still producing insulin is the c-peptide test, maybe that is what your consultant is considering.

Honeymoon periods, particularly in adults, can go on for variable number of years. But please take care, DKA is the extreme emergency due to high blood glucose/lack of adequate insulin. Sadly there are many more complications due to chronic high blood glucose levels if not producing enough insulin - do you use a BG monitor (I assume your partner and daughter do, if confirmed T1)?

This forum has been a godsend to me with so much useful information - please explore!
 
Hello all, so have rang doctor back just to ask for a second opinion. Was feeling confident, but this has made me doubt things a little. Will update when I know. Thank you all
 
wow i so wish i had that out come also diagnosed in June with type 1 rushed in with DKA but im also not producing any insulin 136 my blood sugar was at the time the toilet was my best friend
i still struggle now believing it!!
Hope you get the result there best wishes
 


Hello all,

It looks like June was a hell of a month for it, same here admitted with DKA 5 days coma, type 1 knew nothing about it till I went bang lifes full of surprises.

Steve.
 
Thanks for this.

I had DKA last month and was diagnosed in hospital as type 1. Have been on insulin at the same dose since being out and every day my readings get lower and lower. Averaging around 6 over the last week.

My diabetes consultant today told me they they’re treating me as type 1 due to DKA but said that my blood results haven’t been confirmed yet and there’s still a chance I may be a type 2 or something else.

It’s interesting to see that it’s possible to come off insulin in rare cases! Although as another poster said above, it was a needed wake up call and I’m taking much better care of myself now so I’m not totally desperate to let it go!
 
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