Probably type 1.5

[Eastynh]

Hi everyone.

I was diagnosed with type 2 Diabetes last year. My HbA1C was 68. I had been told that I was prediabetic, around 5 years earlier.
I did not have any of the usual characteristics associated with type 2 diabetes. I am 6 foot 3 and 13.5 stone. I run and did weights regularly (I still do). My cholesterol and blood pressure are perfect.
Now I do like chocolate, its my only vice and my diet could have been better. But with my weight and all other aspects being fine, I did not think there was an issue. Unfortunately, I must have got lost in the system, as after my initial diagnosis last year, I never heard anything again until I was called for an annual check up. 5 weeks ago, I received a call to say my HbA1c was 101. After urgent consultation with my diabetes nurse, I cut the chocolate and paid far more attention to my diet.
Due to the nurse being a little confused regarding my diagnosis of type 2, I was given a Libre sensor, while we tried to see what has gone on.
Over the last four weeks, I have had a time in range of 99%. The sensor is estimating my HbA1c to be at 6.4%.
So, I thought that I was on the right path and that it would not be too difficult putting the diabetes into remission. My fasting blood sugar was below 6 and I was seeing my glucose rise on the Libre sensor, then coming back down to below 7.8, within 2 hours of eating.
I thought all was looking good, until I got some blood test results back last week. My Islet Autoantibody profile has come positive for 2 of the antibodies. My IA2 has come back at 8 (It should be below 7.5), while my ZNT8 has come back at 15 (it should be less than 10). My GAD65 have come back as negative. I need to go back on Monday to have these tests repeated.
Now this has left my nurse a little bemused. As these results suggest I may be type 1. But she would have thought that after being diagnosed with Prediabetes around 5 years ago, I should be insulin dependant by now.
One thing to add at this point, I also have Crohns disease. I have been on Vedolizumab for the last 2 years and I have been in remission.
So, at the moment, it seems that I do have diabetes. But, no one is sure of the type or what the future outlook is for me. At the moment I am controlling my blood sugar well, so not in any immediate danger. But, it is all a little bewildering, to say the least.

 

[Leadinglights]

Hi everyone.

I was diagnosed with type 2 Diabetes last year. My HbA1C was 68. I had been told that I was prediabetic, around 5 years earlier.
I did not have any of the usual characteristics associated with type 2 diabetes. I am 6 foot 3 and 13.5 stone. I run and did weights regularly (I still do). My cholesterol and blood pressure are perfect.
Now I do like chocolate, its my only vice and my diet could have been better. But with my weight and all other aspects being fine, I did not think there was an issue. Unfortunately, I must have got lost in the system, as after my initial diagnosis last year, I never heard anything again until I was called for an annual check up. 5 weeks ago, I received a call to say my HbA1c was 101. After urgent consultation with my diabetes nurse, I cut the chocolate and paid far more attention to my diet.
Due to the nurse being a little confused regarding my diagnosis of type 2, I was given a Libre sensor, while we tried to see what has gone on.
Over the last four weeks, I have had a time in range of 99%. The sensor is estimating my HbA1c to be at 6.4%.
So, I thought that I was on the right path and that it would not be too difficult putting the diabetes into remission. My fasting blood sugar was below 6 and I was seeing my glucose rise on the Libre sensor, then coming back down to below 7.8, within 2 hours of eating.
I thought all was looking good, until I got some blood test results back last week. My Islet Autoantibody profile has come positive for 2 of the antibodies. My IA2 has come back at 8 (It should be below 7.5), while my ZNT8 has come back at 15 (it should be less than 10). My GAD65 have come back as negative. I need to go back on Monday to have these tests repeated.
Now this has left my nurse a little bemused. As these results suggest I may be type 1. But she would have thought that after being diagnosed with Prediabetes around 5 years ago, I should be insulin dependant by now.
One thing to add at this point, I also have Crohns disease. I have been on Vedolizumab for the last 2 years and I have been in remission.
So, at the moment, it seems that I do have diabetes. But, no one is sure of the type or what the future outlook is for me. At the moment I am controlling my blood sugar well, so not in any immediate danger. But, it is all a little bewildering, to say the least.

Have you ever been on steroids for your Crohn's as in some people they can increase blood glucose in which case it may be steroid induced diabetes.

 

[Eastynh]

Have you ever been on steroids for your Crohn's as in some people they can increase blood glucose in which case it may be steroid induced diabetes.

Hi, Leadinglights.
I was on and off steroids for a few years (Prednisolone). I had multiple stays in hospital where I was given I/V steroids. I have not had to use any steroids for about 2 and a half years now.

 

[rebrascora]

Hi and welcome.

It sounds like you could be LADA which is just a slow onset form of Type 1 and your dietary changes and activity (running and weights) are enabling your body to cope with your reduced insulin production at the moment, hence your 99% Libre TIR. However your antibody results are only just over the threshold, so I would say that the Type 1 diagnosis is perhaps not clear cut from those results.
It certainly is possible for LADA to take 5 years or even significantly longer to develop so you may just be in the early stages, or as suggested, if you have taken steroids that could have caused your inflated HbA1c result.

I know the uncertainty about your diagnosis is disconcerting but we do have a few members whose diabetes doesn't follow any of the obvious profiles and sometimes you just have to monitor and manage it as best you can until the situation becomes clearer. If it is LADA, you will likely reach a crisis point at some stage, perhaps after an illness or virus, when your immune system gets stirred up and kills a few more insulin producing beta cells and the remaining ones are no longer able to keep your BG levels balanced even with the dietary changes and exercise you do, but for now it may just be a waiting game. If things have not progress a lot in the last 5 years then it may be another 5 or 10 years before things develop further or you may get Covid next week and that could trigger it. Obviously I hope not, but worth knowing that an illness, even a flare up of your Crohn's could perhaps trigger it, so it is worth continuing to do some less intensive testing after the Libre is finished via finger prick tests to monitor the situation longer term. That is just my non-medical opinion.

 

[Eastynh]

Hi and welcome.

It sounds like you could be LADA which is just a slow onset form of Type 1 and your dietary changes and activity (running and weights) are enabling your body to cope with your reduced insulin production at the moment, hence your 99% Libre TIR. However your antibody results are only just over the threshold, so I would say that the Type 1 diagnosis is perhaps not clear cut from those results.
It certainly is possible for LADA to take 5 years or even significantly longer to develop so you may just be in the early stages, or as suggested, if you have taken steroids that could have caused your inflated HbA1c result.

I know the uncertainty about your diagnosis is disconcerting but we do have a few members whose diabetes doesn't follow any of the obvious profiles and sometimes you just have to monitor and manage it as best you can until the situation becomes clearer. If it is LADA, you will likely reach a crisis point at some stage, perhaps after an illness or virus, when your immune system gets stirred up and kills a few more insulin producing beta cells and the remaining ones are no longer able to keep your BG levels balanced even with the dietary changes and exercise you do, but for now it may just be a waiting game. If things have not progress a lot in the last 5 years then it may be another 5 or 10 years before things develop further or you may get Covid next week and that could trigger it. Obviously I hope not, but worth knowing that an illness, even a flare up of your Crohn's could perhaps trigger it, so it is worth continuing to do some less intensive testing after the Libre is finished via finger prick tests to monitor the situation longer term. That is just my non-medical opinion.

Hi Rebrascora.
Thank you for the reply.
I am just going to take it one day at a time. I have been prescribed the Libre sensors for another month, while they await the 2nd antibody test results.
I am just going to do what ever I can to help maintain my blood glucose levels at their current levels, as best I can. I am fully prepared for the eventuality of insulin, if that is what the future holds.
Having Crohns has mentally toughened me up, so I have had a far more pragmatic attitude towards the diabetes diagnosis.
It will be interesting to see what the ultimate conclusion is, as my current state of flux has left the diabetic nurse a little bewildered.

 

[Leadinglights]

Hi, Leadinglights.
I was on and off steroids for a few years (Prednisolone). I had multiple stays in hospital where I was given I/V steroids. I have not had to use any steroids for about 2 and a half years now.

Hopefully you will get a more certain diagnosis.
It was just that my other half has Crohn's and was largely asymptomatic and he was prescribed Pentasa, but a flare up last Nov he was put on IV steroids and then 3 month oral steroids followed by a immunosuppressant medication which made him feel really unwell so the consultant agreed for him to stop it but did not want him to take the Pentasa again so he had been on no meds since and has been fine. He is not diabetic but the steroids caused unwanted weight gain which he is struggling to lose.

 

[Eastynh]

Hopefully you will get a more certain diagnosis.
It was just that my other half has Crohn's and was largely asymptomatic and he was prescribed Pentasa, but a flare up last Nov he was put on IV steroids and then 3 month oral steroids followed by a immunosuppressant medication which made him feel really unwell so the consultant agreed for him to stop it but did not want him to take the Pentasa again so he had been on no meds since and has been fine. He is not diabetic but the steroids caused unwanted weight gain which he is struggling to lose.

I am on Pentasa and have been on it for over 5 years. I am on Vedolizumab (Immunosuppressant) and it has given me a new lease of life. My BMI has remained at around 23 and from the outside, I look in pretty good shape.
What will be, will be, I am not going to beat myself up about it. I am 45, so hopefully I still have a few more years in me yet. I need to try and make sure I can make them as healthy as I possibly can.

Looking forward to learning from you all and picking up some tips and advice, which will make my journey a little more tolerable :-D

 

[rebrascora]

Hi Rebrascora.
Thank you for the reply.
I am just going to take it one day at a time. I have been prescribed the Libre sensors for another month, while they await the 2nd antibody test results.
I am just going to do what ever I can to help maintain my blood glucose levels at their current levels, as best I can. I am fully prepared for the eventuality of insulin, if that is what the future holds.
Having Crohns has mentally toughened me up, so I have had a far more pragmatic attitude towards the diabetes diagnosis.
It will be interesting to see what the ultimate conclusion is, as my current state of flux has left the diabetic nurse a little bewildered.

I think that is a great attitude to have!
Excellent that you have Libre for another month as that will enable you to test more foods and establish a good repertoire of meals that work well for you and find a good routine of meals and exercise to keep things stable for now and hopefully the future. I would be surprised if your second test results come back much different in that relatively short space of time but will be interested to know the result if you don't mind updating us.

 

[Eastynh]

I think that is a great attitude to have!
Excellent that you have Libre for another month as that will enable you to test more foods and establish a good repertoire of meals that work well for you and find a good routine of meals and exercise to keep things stable for now and hopefully the future. I would be surprised if your second test results come back much different in that relatively short space of time but will be interested to know the result if you don't mind updating us.

I shall report back, once I know.

 

[everydayupsanddowns]

Interesting that you are taking an immunosuppressant. I wonder if that may be contributing to slowing down the attack on your beta cells, and helping to retain more of your ‘stock’ or insulin production?

Good luck with whatever your future holds @Eastynh - and long may your excellent diabetes management continue, whether you are on insulin or not!

 

[Eastynh]

Interesting that you are taking an immunosuppressant. I wonder if that may be contributing to slowing down the attack on your beta cells, and helping to retain more of your ‘stock’ or insulin production?

Good luck with whatever your future holds @Eastynh - and long may your excellent diabetes management continue, whether you are on insulin or not!

Good morning, mate.

I did mention this fact to my diabetic nurse. But, I don't want to be jumping to any hypothesis, not based on any scientific fact. It is an interesting little nugget though.

I am getting pains in my wrists and ankles, which may be arthritis. Or, it could be a side affect of the Vedo.

It is pretty much 10 years since I was diagnosed with Crohns. That is after complaining numerous times regarding bleeding from my rear end (GP told me it was piles and anxiety). Its about 5 years since I was told that I was pre-diabetic. Nothing was done about that, even though I did not fit the the profile for type 2. At that time, I was in and out of hospital with the Crohns and requiring vast amounts of steroids.

Without boring you all, I then had 4 years of excessive trauma, which must have exacerbated the situation.

I now have my life on an even keel. My Crohns is under control. I am not in any immediate danger with the Diabetes. It was just a bit of a kick in the teeth when the antibody tests came back as positive. I really thought that I could get this thing into remission.

No negativity from me though. My pancreas is still fighting the good fight. I want to ensure I do whatever is required to prolong any kind of function that I can.

Regardless of all the ailments I have, I am still fit and able to get exercise. I can put all the good habits in place and deal with the mental aspects of things now, to ensure I can lead a positive and healthy life.

 

[everydayupsanddowns]

Regardless of all the ailments I have, I am still fit and able to get exercise. I can put all the good habits in place and deal with the mental aspects of things now, to ensure I can lead a positive and healthy life.

That’s a great way of looking at things

 

[Eastynh]

Had my 2nd lot of inlet antibody tests taken on Tuesday. Nurse seems to think it will be 4 weeks before I receive the results.
Had another HBA1C done. This is 7 weeks after my last. I have managed to bring it sown from 101 to 63. That was with a week at Glastonbury, where I let my hair down a little (Although you do walk 6/7/8 miles a day).
The whole thing is rather confusing. But there is nothing I can do until I get these antibody results back.

 

[Katie_P34]

Hi everyone.

I was diagnosed with type 2 Diabetes last year. My HbA1C was 68. I had been told that I was prediabetic, around 5 years earlier.
I did not have any of the usual characteristics associated with type 2 diabetes. I am 6 foot 3 and 13.5 stone. I run and did weights regularly (I still do). My cholesterol and blood pressure are perfect.
Now I do like chocolate, its my only vice and my diet could have been better. But with my weight and all other aspects being fine, I did not think there was an issue. Unfortunately, I must have got lost in the system, as after my initial diagnosis last year, I never heard anything again until I was called for an annual check up. 5 weeks ago, I received a call to say my HbA1c was 101. After urgent consultation with my diabetes nurse, I cut the chocolate and paid far more attention to my diet.
Due to the nurse being a little confused regarding my diagnosis of type 2, I was given a Libre sensor, while we tried to see what has gone on.
Over the last four weeks, I have had a time in range of 99%. The sensor is estimating my HbA1c to be at 6.4%.
So, I thought that I was on the right path and that it would not be too difficult putting the diabetes into remission. My fasting blood sugar was below 6 and I was seeing my glucose rise on the Libre sensor, then coming back down to below 7.8, within 2 hours of eating.
I thought all was looking good, until I got some blood test results back last week. My Islet Autoantibody profile has come positive for 2 of the antibodies. My IA2 has come back at 8 (It should be below 7.5), while my ZNT8 has come back at 15 (it should be less than 10). My GAD65 have come back as negative. I need to go back on Monday to have these tests repeated.
Now this has left my nurse a little bemused. As these results suggest I may be type 1. But she would have thought that after being diagnosed with Prediabetes around 5 years ago, I should be insulin dependant by now.
One thing to add at this point, I also have Crohns disease. I have been on Vedolizumab for the last 2 years and I have been in remission.
So, at the moment, it seems that I do have diabetes. But, no one is sure of the type or what the future outlook is for me. At the moment I am controlling my blood sugar well, so not in any immediate danger. But, it is all a little bewildering, to say the least.

Hello I also know how you feel,
After not feeling very well since February I finally went to the doctors in may had bloods done, was told my hba1c was raised had a repeated test 2 weeks after which was raided even more, was told I was type 2 diabetic. After having skipped the pre-diabrtic phase I was really shocked. I was started on metformin with no changes to my sugars going as high as 27 some days. I went back to my diabetic team and they did some antibody tests the only one that is back is my anti-gad which returned as 80, normal should be 1-5. They tested my pancreas to see if it's still working and that returned at 1000. Not sure what the normal should be. Anyways. They have diagnosed me as LADA type 1.5. I have a live 2+,They have started me on insulin novarapid fast acting with meals and lanctus on an evening. I'm still unsure about it all still learning. X

 

[Eastynh]

Hello I also know how you feel,
After not feeling very well since February I finally went to the doctors in may had bloods done, was told my hba1c was raised had a repeated test 2 weeks after which was raided even more, was told I was type 2 diabetic. After having skipped the pre-diabrtic phase I was really shocked. I was started on metformin with no changes to my sugars going as high as 27 some days. I went back to my diabetic team and they did some antibody tests the only one that is back is my anti-gad which returned as 80, normal should be 1-5. They tested my pancreas to see if it's still working and that returned at 1000. Not sure what the normal should be. Anyways. They have diagnosed me as LADA type 1.5. I have a live 2+,They have started me on insulin novarapid fast acting with meals and lanctus on an evening. I'm still unsure about it all still learning. X

How are you doing now Katie? Now that you are on insulin. Do you have it under control?
My sugars are not going anywhere near as high as yours did. I am also still producing insulin, as I have managed to reduce my readings, without any medication. On the face of it, it would suggest I am type 2. But, I am not overweight, I exercise a lot and my diet was not bad. Then there is the fact I have tested positive for 2 antibodies. Again, I do not really not the type 1 profile.
There are also added complications with the fact I have Crohns and been subjected to long courses of steroids.
I just don't know at the minute, it's all very bewildering.

 

[Katie_P34]

Since I've been on the insulin I feel so much better, I feel more alert, not so tired all the time just generally feel better all round. My blood sugars now are rather steady, I'm learning to carb count and adjust my insulin accordingly as some times I need more or less but I'm also producing insulin so it's all a learning curve.
I am over weight current bmi 33. I have changed my diet and now exercise 3 times a week but am really struggling to lose weight.
I have had the anti body tests but the only 1 that has returned is the anti gad it say 4-6 week wait for the others that was 2nd June so not sure what's going there. They are retesting my c-peptide in 6 months to see if it drops in levels to support the diagnosis, but they are certain I'm LADA.
They say LADA presents itself after a big inflammatory response happened to the body, have you been poorly before your symptoms started? Your doing really well to get your levels within range without medication, let's hope you can stay like that for as long as you can.

 

[Eastynh]

Since I've been on the insulin I feel so much better, I feel more alert, not so tired all the time just generally feel better all round. My blood sugars now are rather steady, I'm learning to carb count and adjust my insulin accordingly as some times I need more or less but I'm also producing insulin so it's all a learning curve.
I am over weight current bmi 33. I have changed my diet and now exercise 3 times a week but am really struggling to lose weight.
I have had the anti body tests but the only 1 that has returned is the anti gad it say 4-6 week wait for the others that was 2nd June so not sure what's going there. They are retesting my c-peptide in 6 months to see if it drops in levels to support the diagnosis, but they are certain I'm LADA.
They say LADA presents itself after a big inflammatory response happened to the body, have you been poorly before your symptoms started? Your doing really well to get your levels within range without medication, let's hope you can stay like that for as long as you can.

Hi Katie. I also have Crohns Disease, which has resulted in numerous stays in hospital and courses of steroids.
Because I was so well unwell for so long, I just thought the diabetes symptoms were due to the Crohns.

 

[Eastynh]

Can anyone make sense of this for me? It looks like only 1 on my antibody tests has come back positive thus time. The ZnT8 is still positive, but the result is a little lower. The other 2 are negative.

I have absolutely no idea what is going on.

 

[Katie_P34]

Can anyone make sense of this for me? It looks like only 1 on my antibody tests has come back positive thus time. The ZnT8 is still positive, but the result is a little lower. The other 2 are negative.

I have absolutely no idea what is going on.
View attachment 31189

Have they talked to you about the different types of diabetes you could have. It's not just as simple as type 1 or type 2. There is also LADA and MODY (also known as type 1.5). When I went for my appointment only my anti GAD came back as positive they did a score for MODY which was less than 1% chance but cos I had a positive GAD they are treating me as LADA my other results came back as N/A but they are retesting me in September.
Maybe ask them the question if it's MODY. As I know one of the antibody tests is for that diagnosis. I hope you get some answers soon. It's really hard to accept something when no-one really knows for sure.

 

[Lucyr]

Have they talked to you about the different types of diabetes you could have. It's not just as simple as type 1 or type 2. There is also LADA and MODY (also known as type 1.5).

There’s loads of other types too, and unknown types, I don’t even have a type yet 15 years in. I can’t understand where the numerical results are in the screenshot compared to the numerical ranges to give any thoughts though