Update post DKA and a little confused

[digihat]

Good Afternoon everyone

Its been over a month now since my DKA episode which put me in hospital for four days. Quick background originally diagnosed as type 2 in summer 23 after two high hba1c just over 50. Did what they told me diet, exercise (gym) lose weight etc. Hba1c had risen to 107 in December 23 still don't know how that happened considering how much i tweaked my life style and cut so many things. Fast forward and one DKA episode later, I didn't know this was happening at the time.

I am currently on the following regime 30 units toujeo in the morning and novo rapid 1:12 carb ratio for meals etc. They are happy with my time in range about 50% going by libre at the moment tweaking the long acting insulin seems to have helped me here quite abit.

The thing I find confusing at the moment they are waiting on two blood tests one has come back negative for type 1 think they are waiting for the GAD still from what they said I think. Alot of the staff I've been dealing seemed it was type 1/LADA based on what happened subject to tests of course. Its looking like type 2 at the moment subject to the final test which completely threw me the other week. Only just about getting used to the insulin regime and processing what happened.

Final thing rapid insulin i tend to leave 10-15 mins before a meal when I inject novorapid. Just wondered how long people tend to inject before a meal doing rapid insulin?

 

[RBZ5416]

Not sure what you mean by "leave it" but 10-15 mins prior to eating is the usual starting point. You then need to check your Libre to see how well that works. You may need to inject earlier or later depending on what you see from the Libre.

 

[digihat]

Not sure what you mean by "leave it" but 10-15 mins prior to eating is the usual starting point. You then need to check your Libre to see how well that works. You may need to inject earlier or later depending on what you see from the Libre.

Yeah that's what's ive been tending to do recently trying to flatten out the big spikes going by libre. I've reworded the sentence so hopefully its clearer now

 

[Dragonheart]

The thing I find confusing at the moment they are waiting on two blood tests one has come back negative for type 1 think they are waiting for the GAD still from what they said I think. Alot of the staff I've been dealing seemed it was type 1/LADA based on what happened subject to tests of course. Its looking like type 2 at the moment subject to the final test which completely threw me the other week. Only just about getting used to the insulin regime and processing what happened.

Do you know what type 1 tests they did specifically? And what the actual results were (not their summary in words). There are antibody tests other than GAD, a negative for antibodies doesn’t entirely rule out type 1 and there are types other than 1 and 2. A few thoughts in case you need to do some further investigation and have some questions ready for the next appointment.

Being correctly diagnosed makes a difference to the tech and care you get in the nhs, even if the actual treatment of insulin is the same. Also to the opportunity or not for remission via lifestyle change. Doesn’t matter what a type 1 does it’s not going away as science stands right now. A true type 2 quite possibly has that chance.

A doubling in 6 months of hba1c when doing appropriate actions for type 2 to me makes it highly unlikely it’s that. Assuming what you did was appropriate. What food and drink changes did you make? What exercise and weight changes occurred in that time?

Add in a DKA - which is unusual in correctly diagnosed type 2 - and I’m even more doubtful. A lack of insulin is typically key for DKA and type 2 especially in the early years have a lot of it, but are resistant to its effects, so it doesn’t do its job unless levels are high (the brute force approach). So not enough is a relative term when used for type 2, mostly.

 

[RBZ5416]

And for balance, I was a well managed T2 for 10 years before Covid sent me into DKA with an HbA1c of 117.

 

[Dragonheart]

And for balance, I was a well managed T2 for 10 years before Covid sent me into DKA with an HbA1c of 117.

Not quite the same as within 6 months of an initial hba1c of just 50 though. Nor what I’d call early years. A decade of type 2 (plus however long it was before being diagnosed) can be quite different in terms of the effect it’s had on you especially depending on what “well managed“ means exactly too. Add in the rest of the story and it’s an overall picture that has me doubting, as it did @digihat ‘s experts at the time of the DKA. I wonder who now is reverting back to the type 2 opinion? The specialist or the practice nurse?

And whilst I’d never say never as it obviously can and does happen I do suspect many type 2 DKA are either misdiagnosed type 1 or triggered by a specific event (Covid in your case which also can send non diabetics into DKA too) on top of their type 2. If only they tested insulin/peptide at diagnosis, or at least on any rapid deterioration, a lot fewer type 1 would be missed.

 

[digihat]

Do you know what type 1 tests they did specifically? And what the actual results were (not their summary in words). There are antibody tests other than GAD, a negative for antibodies doesn’t entirely rule out type 1 and there are types other than 1 and 2. A few thoughts in case you need to do some further investigation and have some questions ready for the next appointment.

Being correctly diagnosed makes a difference to the tech and care you get in the nhs, even if the actual treatment of insulin is the same. Also to the opportunity or not for remission via lifestyle change. Doesn’t matter what a type 1 does it’s not going away as science stands right now. A true type 2 quite possibly has that chance.

A doubling in 6 months of hba1c when doing appropriate actions for type 2 to me makes it highly unlikely it’s that. Assuming what you did was appropriate. What food and drink changes did you make? What exercise and weight changes occurred in that time?

Add in a DKA - which is unusual in correctly diagnosed type 2 - and I’m even more doubtful. A lack of insulin is typically key for DKA and type 2 especially in the early years have a lot of it, but are resistant to its effects, so it doesn’t do its job unless levels are high (the brute force approach). So not enough is a relative term when used for type 2, mostly.

Thanks for the detailed reply

I was going to ask about what the tests were at my last appointment but after they told one had come back it threw me when the result wasn't what i expected and didn't end up asking in the end will do at the next appointment in a few weeks

I was quite a heavy chocolate eater and soda drinker along with being very inactive at the time. I joined a gym with a PT going 3x a week 2 now post dka while i get myself going again. Cut down soda switched to sugar free which i have every once in while. Practically removed chocolate sweets except for the odd thing here and there. Followed meal plan from PT more standard meals calculated to a degree. Weight started falling off although this could have been the diabetes was around 2kg every 2 weeks ish did slow down. Lost around 22.65kg during that time July-December I was under eating at times just wasnt hungry or could barely finish some meals this happened near the dka. Was doing whole body workout to strengthen muscles increase fitness gradually. Also increased the amount i walked alot. Those were the main changes I did

 

[Lucyr]

I’d ask for the actual values on these test results. One of the tests coming back as T2 I’m guessing means you have a high cpeptide, but is it actually high or is it low but just not low enough for T1? The actual number makes a massive difference here.

 

[digihat]

Good shout will make a note now to do that at my next appointment in a couple of weeks . They did talk about the honey money phase when I first got out had forgotten about that until now

 

[Inka]

I agree with @Lucyr It sounds like that was the C Peptide. It’s quite often unclear and sometimes misinterpreted. Get the actual number.

 

[rebrascora]

I agree with @Lucyr It sounds like that was the C Peptide. It’s quite often unclear and sometimes misinterpreted. Get the actual number.

Yes, my C-peptide result came back borderline. ie. it was in the normal range but right at the bottom end of normal. That was considered inconclusive but then my GAD came back positive. I believe that even if your GAD comes back negative, there are other antibodies which can indicate Type 1 but they are less common, so it might be worth asking which antibody tests they requested. Hopefully, the GAD will be positive and you will have a straightforward diagnosis (not that I hope you are Type 1, but just to know where you stand and therefore what approach you can take) and hopefully it will simply be that you are in the honeymoon phase and still producing some insulin which has skewed the C-peptide result slightly. Your circumstances certainly make it sound like Type 1.
Take a list of questions to your next appointment and tick them off as you go through them or write the answers/results next to the questions so that you have a record of what was said, because it is all too easy to go into these appointments and get side tracked, like you did by the C-pep result and lose track of all the other stuff you wanted to ask. I make a note on my appointment letter and keep adding things as I think of them.

 

[Dragonheart]

Thanks for the detailed reply

I was going to ask about what the tests were at my last appointment but after they told one had come back it threw me when the result wasn't what i expected and didn't end up asking in the end will do at the next appointment in a few weeks

I was quite a heavy chocolate eater and soda drinker along with being very inactive at the time. I joined a gym with a PT going 3x a week 2 now post dka while i get myself going again. Cut down soda switched to sugar free which i have every once in while. Practically removed chocolate sweets except for the odd thing here and there. Followed meal plan from PT more standard meals calculated to a degree. Weight started falling off although this could have been the diabetes was around 2kg every 2 weeks ish did slow down. Lost around 22.65kg during that time July-December I was under eating at times just wasnt hungry or could barely finish some meals this happened near the dka. Was doing whole body workout to strengthen muscles increase fitness gradually. Also increased the amount i walked alot. Those were the main changes I did

I’m slightly curious about the diet plan from the PT. What were some typical meals on there? As you say the weight loss could be at least partially the diabetes. If it is type 1 the question probably isn’t so relevant. If it’s type 2 and the diet was very carb heavy it could possible answer some of the questions that end asking about the dramatic rise in a short term.

In 6 yrs of heavy forum use (this and the red one and other grpups) I can’t recall such a high and fast rise in a type 2 hba1c especially whilst weight loss and exercise and a better diet was being deployedand followed by a dka. You could be the first but ……..

 

[digihat]

I agree with @Lucyr It sounds like that was the C Peptide. It’s quite often unclear and sometimes misinterpreted. Get the actual number.

Will make sure to ask for the figures

 

[digihat]

Yes, my C-peptide result came back borderline. ie. it was in the normal range but right at the bottom end of normal. That was considered inconclusive but then my GAD came back positive. I believe that even if your GAD comes back negative, there are other antibodies which can indicate Type 1 but they are less common, so it might be worth asking which antibody tests they requested. Hopefully, the GAD will be positive and you will have a straightforward diagnosis (not that I hope you are Type 1, but just to know where you stand and therefore what approach you can take) and hopefully it will simply be that you are in the honeymoon phase and still producing some insulin which has skewed the C-peptide result slightly. Your circumstances certainly make it sound like Type 1.
Take a list of questions to your next appointment and tick them off as you go through them or write the answers/results next to the questions so that you have a record of what was said, because it is all too easy to go into these appointments and get side tracked, like you did by the C-pep result and lose track of all the other stuff you wanted to ask. I make a note on my appointment letter and keep adding things as I think of them.

Thanks for your detailed reply 🙂

Not fully sure if the test that came back was c-peptide it sounds like it based on I know the other is the GAD from what I heard the nurse say last week after I asked for some advice. It probably is based on everyone's experience and suggestion. Yeah alot of people of said to me it sounds like type 1 after what happened in December that's why i got really flustered after they said the test was negative. Although i was rushing as appointment was late and had a PT session to get to. Yeah its been taking quite a mental toll trying to figure out what happened if type 1 or 2 etc will get the answer eventually hopefully

Yeah I took quite a list last time got through a few before I lost my chain of thought. Will switch to a written list this time I think. Need to get more detail is the recurring theme I am noticing 🙂

 

[digihat]

I’m slightly curious about the diet plan from the PT. What were some typical meals on there? As you say the weight loss could be at least partially the diabetes. If it is type 1 the question probably isn’t so relevant. If it’s type 2 and the diet was very carb heavy it could possible answer some of the questions that end asking about the dramatic rise in a short term.

In 6 yrs of heavy forum use (this and the red one and other grpups) I can’t recall such a high and fast rise in a type 2 hba1c especially whilst weight loss and exercise and a better diet was being deployedand followed by a dka. You could be the first but ……..

I can give examples of how i applied it didn't always follow to the letter it as i found it very restrictive did my take toa degree

I also have celiac disease so have to so gluten free life as well.

Breakfast - Gluten Free cereal in morning with milk this was the highest carb meal which was around 52g carbs seen as I still use occasionally
Lunch - Roast chicken with salad (my choice)
Dinner- Chicken/Fish with veg or veg stir fry with rice

I have learnt through this journey that I have had habit of causing firsts when DSN's were going through what to do in hospital the meter wouldn't work with my blood tried 3 of same model. Said that never has happened before (works with it now). When they showed me how to do libre it bled when first one went in said that doesn't usually happen hasn't since. So never know 🙂

 

[Dragonheart]

I can give examples of how i applied it didn't always follow to the letter it as i found it very restrictive did my take toa degree

I also have celiac disease so have to so gluten free life as well.

Breakfast - Gluten Free cereal in morning with milk this was the highest carb meal which was around 52g carbs seen as I still use occasionally
Lunch - Roast chicken with salad (my choice)
Dinner- Chicken/Fish with veg or veg stir fry with rice

I have learnt through this journey that I have had habit of causing firsts when DSN's were going through what to do in hospital the meter wouldn't work with my blood tried 3 of same model. Said that never has happened before (works with it now). When they showed me how to do libre it bled when first one went in said that doesn't usually happen hasn't since. So never know 🙂

Well whilst that wasn’t the lowest carb I’ve seen it’s not particularly high either so that pt diet doesn’t explain the rise either (unless you were chugging cartons of orange juice or similar).

Has anyone actually said it’s type 2 since the result came back negative or is that putting 2+2 together yourself? If they do try and pin a type 2 purely on a negative antibody test I’d really try and have the discussion about how that isn’t always an absolute (ie antibodies are not always detected or they may be of a type not tested for). Make sure they did an c-peptide/insulin test too. Ask them to explain the rest of the situation and how that equates to type 2 (because it really doesn’t).

 

[digihat]

Well whilst that wasn’t the lowest carb I’ve seen it’s not particularly high either so that pt diet doesn’t explain the rise either (unless you were chugging cartons of orange juice or similar).

Has anyone actually said it’s type 2 since the result came back negative or is that putting 2+2 together yourself? If they do try and pin a type 2 purely on a negative antibody test I’d really try and have the discussion about how that isn’t always an absolute (ie antibodies are not always detected or they may be of a type not tested for). Make sure they did an c-peptide/insulin test too. Ask them to explain the rest of the situation and how that equates to type 2 (because it really doesn’t).

Just before i went in to hospital when i had the extreme thirst and going toilet alot i did have some orange juice abit then but not lots and was mainly sticking to water and zero sugar drinks. I do like my milk which i didn't really know had carbs at the time( wasn't looking at carbs prior to Dka). Was struggling to keep food down without feeling sick as well

Not officially anyone hasn't said its type 2 yet barring the original summer diagnosis. I got a hint it was looking that way after the test but not officially yet subject to the last test coming back. Will make sure to ask them about the above thanks . I did say to them I am going to fight my corner on this which they agreed sometimes you have to do be your own advocate etc

 

[everydayupsanddowns]

It feels helpful to post the NICE guidance for T1 in adults here. I was on the group that reviewed the guidance for the 2015 update, and was amazed how patchy and inconclusive the data around antibody tests and cPep were. It is perfectly possible to be T1 with no antibodies (they disappear if they have already splatted all your beta cells) and also to be T1 with reasonable amounts of cPeptide.

The best indicators for T1 are the clinical factors in the presentation.

1.1 Diagnosis and early care plan​

Initial diagnosis​

1.1.1​

Make an initial diagnosis of type 1 diabetes on clinical grounds in adults presenting with hyperglycaemia. Bear in mind that people with type 1 diabetes typically (but not always) have 1 or more of:

• ketosis
• rapid weight loss
• age of onset under 50 years
• body mass index (BMI) below 25 kg/m2
• personal and/or family history of autoimmune disease. [2015, amended 2022]

1.1.2​

Do not use age or BMI alone to exclude or diagnose type 1 diabetes in adults. [2022]

1.1.3​

Take into consideration the possibility of other diabetes subtypes and revisit the diagnosis at subsequent clinical reviews. Carry out further investigations if there is uncertainty (see recommendations 1.1.7 and 1.1.8). [2022]

1.1.4​

Measure diabetes-specific autoantibodies in adults with an initial diagnosis of type 1 diabetes, taking into account that:

• the false negative rate of diabetes-specific autoantibody tests is lowest at the time of diagnosis
• the false negative rate can be reduced by carrying out quantitative tests for 2 different diabetes-specific autoantibodies (with at least 1 being positive). [2022]

1.1.5​

Do not routinely measure serum C‑peptide to confirm type 1 diabetes in adults. [2022]

1.1.6​

In people with a negative diabetes-specific autoantibody result, and if diabetes classification remains uncertain, consider measuring non-fasting serum C‑peptide (with a paired blood glucose). [2022]

The guidance goes on to say that you can always check cPep later if there is uncertainty over whether the classification is correct (but carry on treating as T1 in the meantime). it feels as if you have a lot of the T1 indicators listed.

Recommendations | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk

 

[digihat]

It feels helpful to post the NICE guidance for T1 in adults here. I was on the group that reviewed the guidance for the 2015 update, and was amazed how patchy and inconclusive the data around antibody tests and cPep were. It is perfectly possible to be T1 with no antibodies (they disappear if they have already splatted all your beta cells) and also to be T1 with reasonable amounts of cPeptide.

The best indicators for T1 are the clinical factors in the presentation.

1.1 Diagnosis and early care plan​

Initial diagnosis​

1.1.1​

Make an initial diagnosis of type 1 diabetes on clinical grounds in adults presenting with hyperglycaemia. Bear in mind that people with type 1 diabetes typically (but not always) have 1 or more of:

• ketosis
• rapid weight loss
• age of onset under 50 years
• body mass index (BMI) below 25 kg/m2
• personal and/or family history of autoimmune disease. [2015, amended 2022]

1.1.2​

Do not use age or BMI alone to exclude or diagnose type 1 diabetes in adults. [2022]

1.1.3​

Take into consideration the possibility of other diabetes subtypes and revisit the diagnosis at subsequent clinical reviews. Carry out further investigations if there is uncertainty (see recommendations 1.1.7 and 1.1.8). [2022]

1.1.4​

Measure diabetes-specific autoantibodies in adults with an initial diagnosis of type 1 diabetes, taking into account that:

• the false negative rate of diabetes-specific autoantibody tests is lowest at the time of diagnosis
• the false negative rate can be reduced by carrying out quantitative tests for 2 different diabetes-specific autoantibodies (with at least 1 being positive). [2022]

1.1.5​

Do not routinely measure serum C‑peptide to confirm type 1 diabetes in adults. [2022]

1.1.6​

In people with a negative diabetes-specific autoantibody result, and if diabetes classification remains uncertain, consider measuring non-fasting serum C‑peptide (with a paired blood glucose). [2022]

The guidance goes on to say that you can always check cPep later if there is uncertainty over whether the classification is correct (but carry on treating as T1 in the meantime). it feels as if you have a lot of the T1 indicators listed.

Recommendations | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk

@everydayupsanddowns thanks for posting the NICE guidelines I've been looking at them in closer detail and have come to the same conclusion regarding the T1 indicators.

Also thanks to @HSSS @Inka @Lucyr @rebrascora @RBZ5416 @everydayupsanddowns for the feedback and suggestions above feeling abit more confident for my next appointment on the 13th going to prep with the above suggestions and pester for more detail!

 

[digihat]

@everydayupsanddowns thanks for posting the NICE guidelines I've been looking at them in closer detail and have come to the same conclusion regarding the T1 indicators.

Also thanks to @HSSS @Inka @Lucyr @rebrascora @RBZ5416 @everydayupsanddowns for the feedback and suggestions above feeling abit more confident for my next appointment on the 13th going to prep with the above suggestions and pester for more detail!

@everydayupsanddowns @HSSS @Inka @Lucyr @rebrascora @RBZ5416

Just thought i would update this thread with the outcome after seeing the diabetes team today.

Test results I saw:

ZNT8: 1093.7
Gad Profile: Negative
IA2: Negative

Diagnosis of type 1 confirmed from my understanding and they've moved me to longer appointments now as they are happy with my progress so far seeing the consultant in June

Thanks for everyone's advice and suggestions above it was a big help