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Misdiagnosed type 1 after DKA?

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UKamy27

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Type 1
Just wondering in anyone’s experienced anything similar.
was diagnosed in the summer after going into DKA. Was put on insulin which gradually decreased over 3 months until I was taking nothing and still maintaining normal BG.
I kept questioning if I was misdiagnosed, but DN and endo pretty much laughed it off everytime. Said it was normal to be in denial and it was just a good honeymoon phase. Had antibody tests taken which came back negative. Had an appointment with an endo who said I wasn’t diabetic and was misdiagnosed. I was happy with this so never asked anything more was a 10 minute appointment.
In the letter he sent after he said ‘it seems unlikely you have type 1 requiring treatment or in a honeymoon phase based on negative antibodys. Type 2 seems very unlikely given the history of presentation.’

I would obviously be delighted not to be diabetic. But why did I have the DKA, why did I need insulin in the 3 months afterwards. My family feel I should move on and be grateful, but can’t stop obsessing about it. Anyone had anything similar?
 
Hello and welcome to the forum @UKamy27 🙂

Somebody will be along shortly to answer your question I'm sure and to help.
 
@UKamy27 Its completely understandable you’re still thinking about it - I would be too. Diabetes is a big cause of ketoacidosis but it’s not the only cause. I’m presuming other causes were ruled out?

I think I’ve read about some people with Type 1.5 diabetes not having antibodies. My memory is saying up to 25% of them, but I might be muddled about the number. Has that been explored, and did you have a C Peptide test along with your antibody test?

How much insulin did you take for the 3 months and what were your blood sugars like?
 
I’m not sure they considered other causes for the DKA. I’ve looked online and can only really see it could be caused by starvation or being an alcoholic, (I may be wrong here) but once insulin is started you would get more ill, so they would have been able to see that?

I never had a C-peptide I asked for it but at the time they said because I was in my honeymoon period it would come back normal. Never had a HBA1C at the time either, first one I had was 4 months after diagnosis which was 33.
I was taking 12U evening and night and then around 9/8U for my meals. Initially levels were around 6-7 some spikes up to 11 after meals, but gradually as time went on I began having hypos. Nothing crazy lowest reading was 3.8. But I just took less and less over 3 months til I took none. Been around 6 months insulin free now. Levels are always are 4-6 when I check now.

sorry just to add, he never discussed with me LADA or the likelihood of that. I was 26 when diagnosed. It something I’ve read about since.
 
Hmm, interesting. So on the surface of it, it does sound like Type 1 - apart from the lack of antibodies. I know you said they thought Type 2 was unlikely, but have they definitely ruled that out? Does anyone else in your family have diabetes?

I have Type 1, confirmed recently by antibody and C Peptide tests. During my honeymoon, my basal (background) insulin went right down to 1 unit.

Could you have had Covid and not realised? Covid can affect the pancreas.
 
My GP did discuss the fact it could be Covid related, however I’m aware their diabetes knowledge isn’t great. No family with diabetes and not overweight.

in the months leading up I had been very ill. Had abdominal pains which they gave me antibiotics but never diagnosed with anything, I collapsed during this time and fractured my head, which didn’t need any treatment other than pain killers. I had lost 12kg in 3 weeks which is quite significant for me. Was extremely tired and depressed, but don’t recall drinking or weeing more. I also had a car crash on the motorway 2 days before I went into DKA. (As passenger not driver)
Just confused If any of these things are related, or the cause or symptoms or just bad luck.
 
Weight loss like that is associated with Type 1, but I wonder if you could have had a virus or some kind of inflammation in your pancreas that temporarily affected its ability to make insulin? That could potentially cause weight loss, pain and high blood sugars. I’m not sure if there’d be any way to test for that now your symptoms have receded.

Stress (like a car crash) can also affect blood sugar if you’re heading for problems anyway so might be the trigger which pushes someone into ketoacidosis.

The abdominal pains you mention make me think it was some kind of inflammation or virus that affected you.
 
Thank you so much! That’s what I kept asking at the time. So is it possible to have some type of infection that cause the pancreas to stop working temporarily and I’m perfectly healthy now?

there’s nothing that would make me happier, I just can’t see any similar cases online or anyone who’s experienced anything similar.
 
I don’t know @UKamy27 because I’m not a medical person, just someone with diabetes. But there can only be a limited number of possibilities, and some kind of transient inflammation or infection sounds feasible, especially as you mention the abdominal pain. Pancreatitis can cause diabetes or temporary hyperglycaemia from what I’ve read.

I guess only time will tell. If you’re worried, I’d suggest a chat with your GP when all of this Covid stuff has died down a little.
 
Well thank you so much! Really appreciate your opinion on it all! Time will tell I have another appointment with the consultant in April, just to see alls well, so can ask more then. Thank you
 
You’re welcome 🙂 Make a list of questions for your follow-up appointment. It’s easy to forget when you’re sitting there!
 
Hi. There is a lot of mis-understanding amongst the medics about the best approach to diagnosis of T1 versus T2 versus no diabetes. For T1 you need a C-Peptide test as well as antibody tests. There are other causes for T1 than antibodies e.g. viruses hence the C-peptide test will determine whether you have high or low insulin even with a negative antibody test. The most common antibody is GAD but there are others such as IA2 and these aren't always tested for. Doing a C-Peptide test during honeymoon might indicate a low'ish level of insulin which might give a guide. If your BS levels are OK, with mid-range C-Peptide and not having excessive weight it would be some indication of no-diabetes. Why the DKA who knows...
 
DaveB said:
Hi. There is a lot of mis-understanding amongst the medics about the best approach to diagnosis of T1 versus T2 versus no diabetes. For T1 you need a C-Peptide test as well as antibody tests. There are other causes for T1 than antibodies e.g. viruses hence the C-peptide test will determine whether you have high or low insulin even with a negative antibody test. The most common antibody is GAD but there are others such as IA2 and these aren't always tested for. Doing a C-Peptide test during honeymoon might indicate a low'ish level of insulin which might give a guide. If your BS levels are OK, with mid-range C-Peptide and not having excessive weight it would be some indication of no-diabetes. Why the DKA who knows...
Click to expand...
I find the talk about C-peptide and GAD test to diagnose Type 1 really interesting.
I believe they are relatively recent tests (or at least, their availability has been more widespread more recently) and Type 1 has been correctly diagnosed amongst people of all ages for years without them.
I think it is fantastic that we now have the tools to ease the diagnosis and, hopefully, reduce the number of people incorrectly diagnosed with type 2.
Fifteen years ago, in my mid-30s, I was lucky to be correctly diagnosed with Type 1 but the justification was far from scientific. I was told, "You're too slim to have type 2 so we'll start you on insulin straight away." The more I have learnt about both types of diabetes since then has shown me how naive that view was but glad it worked for me.

I wonder what the future will bring.
 
I too would suspect pancreatitis as a possible cause since you mention severe abdominal pain and I wonder if a scan of your pancreas might show any remaining inflammation or tissue damage as a result of an acute attack. There are one or two people on this forum who have been sent for a scan of their pancreas to rule out possible cancer at the time of their diagnosis, so I don't think it is too out of the ordinary to have one done. Not that I am suggesting that as a cause for you but surprising that it hasn't been suggested when you were experiencing abdominal pain well before your DKA diagnosis. I would certainly ask about the possibility of a scan when you see the consultant and if it would pick up any trace of pancreatitis this long after the event.
My mother had 3 episodes of acute pancreatitis and one occurred when she was on holiday in Tenerife and she was in intensive care there for several weeks which was a huge worry to all of us. I would want to know if that was the cause so that you at least have it on your medical notes and obtain the correct treatment more promptly if it were to happen again.

As regards others having similar experiences, the only member whose diagnosis has been in question that I can think of is @Gwynn. He is now also off insulin and BG levels are in the normal range now, but he has made considerable lifestyle changes which may have influenced things to some extent.

I also wondered if Covid might have been a trigger for this diabetic episode. I believe ketones can develop at much lower BG levels with Covid, so whilst your body might have been just about managing on reduced insulin production (perhaps due to pancreatitis) Covid might have triggered the DKA. The hospital treatment for the DKA may have helped to alleviate the pancreatitis and enabled it to gradually return to insulin production again. I wonder if a Covid antibody test might shed some light on that, or again if it is too long after the event.

It is a very interesting situation and I don't blame you for wanting to get to the bottom of it. I hope some of our combined thinking helps you to find a possible explanation with the help of your clinical team.
 
Thank you all so much for your replies!
so I was tested for GAD, IA2 and ZnT8 in September which were negative.
just hard for me after so long being told it wasn’t possible to be misdiagnosed type 1, they’d never seen it before, to a ten minute appointment telling me I’m not diabetic and not to worry.
I am extremely grateful for all your input. Hopefully will know more after April, will update!
 
I have always wondered if pancreatitis would cause diabetes years later as my mother outlaw at 95 years old has been showing some of the symptoms, tiredness, thirsty, visits to the loo. She has severe pancreatitis 50 years ago but the only thing she seemed not to tolerate was dairy products. She has had an HBA1C plus other tests which are normal. So her tiredness is probably just old age and issues with macular degeneration and deafness, can't be fun.
 
Benny G said:
You have been on quite a journey, to me it sounds like you have had an episode of pancreatitis.
Click to expand...
Yes it really was a bizarre couple of months before diagnosis. Can only describe it like a fog on my brain. Really can’t remember a lot the 2 months leading up to diagnosis. Then when I was treated in hospital it was like the fog instantly lifted and I was back to myself.
 
helli said:
I find the talk about C-peptide and GAD test to diagnose Type 1 really interesting.
I believe they are relatively recent tests (or at least, their availability has been more widespread more recently) and Type 1 has been correctly diagnosed amongst people of all ages for years without them
Click to expand...

The clinical evidence around antibody testing is a bit mixed. They can be useful, but when the evidence was reviewed for the 2015 NICE guidelines for T1 in adults it showed that they should not be used routinely, and that more than one antibody should be assessed, close to the time of diagnosis, to reduce the risk of false negatives. It is also possible for people with T2 and the metabolic syndrome to test positive for antibodies.

The best option generally still seems to be to diagnose based on the clinical presentation - which will get it right most of the time. And to use further checks where there is confusion and uncertainty.

It has certainly been a strange time for you @UKamy27 and your case seems very unusual. I suspect you will only really understand what is happening and has happened in hindsight after more time has passed. That’s not very helpful for you right now of course, but I guess just keep an eye on things, and enjoy your ‘diabetes holiday’ while it stays away 🙂
 
Just an update!
been to see a private consultant today. He said he was as sure as he could be I was not diabetic.
he said it was a rare case but he believes it is transient pancreatic shock. And after going on insulin it started the pancreas working again.
he did say had they done a HBA1C at the time they would have seen my BG levels were low and wouldn’t have diagnosed it as type 1.
he did say he can’t say 100% but he thinks it’s very unlikely that it’s type 1 /2 or LADA
Thanks for all your help and advice on here!!
 
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