Type 2 now Type 1

[Michele01]

I'm very interested to understand how I could possibly have gone from pre-diabetic to type 2 and then type 1 in less than a year! So, could I ask some advice please in advance of seeing my consultant?

- In December 2014 I was diagnosed as pre-diabetic (with blood tests - not sure which but presume one was fasting).
- In March 2015 I was put on Metformin as my levels had moved "slightly" and the consultant thought it wise to start low level treatment.
- In June 2015 my levels were ok but I wasn't tolerating Metformin so was put on Forxiga.
- In July 2015 I was admitted to hospital with DKA (brought on by taking the Forxiga).
- On leaving hospital I was prescribed insulin injections because everybody was worried about giving me more tablets and what could happen.
- Since then, I've struggled to get my levels down (at one point they were all in the 20s and as high as 30).
- In November 2015 I had a GAD (?) and CPEP test that showed I am now a Type 1.

I had been left to my own devices by my original consultant and my GP (on Christmas Eve) transferred my care to the consultant I was under at the hospital that treated the DKA (and the one that did the test for Type 1 in November so I'm hopeful that my care will be much more thorough going forward BUT what I want to know is how I've gone from pre-diabetic to type 1 in a year! Could it be, as I suspect, that the Forxiga has damaged my pancreas with the DKA to the extent that it's destroyed any natural ability I had to produce insulin? Has the move from Type 2 to Type 1 happened to anybody else so quickly who hasn't had these tablets? I'd love your thoughts on this please.

 

[tim2000s]

@Michele01 Here's the news. You were never pre-diabetic or Type 2. The GAD and C-Peptide tests show that you are LADA/Type 1.5 - late onset T1, and you were misdiagnosed as T2. As LADA is much slower to take hold than Juvenile onset T1 seems to be, it is often mistaken for T2.

The GAD antibody test shows that you have the auto-immune antibodies that attack the beta cells, and thus have been doing for some time. I've tagged @LucySW as another LADA.

 

[mikeg1964]

I was diagnosed as T2 to start with and then T1 three months later. In my case the initial diagnosis was wrong and I am sure if I had the T1 tests at the start I would have been classified as t1 from the start.

 

[dannyw]

My guess would be that you were T1 all along, although possibly in the honeymoon phase ( Google it ). Quite a few here were originally deemed to be T2 but after GAD test later found out they were T1.
The most important thing now is to get your BG levels under control. Hopefully you will see your doc/consultant soon who will discuss basal/bolus injections.
For now, I would try to reduce carb intake as much as possible and have a good read at the various threads on here. Another thing I would suggest you talk to your healthcare team about is the possibility of getting on a DAFNE course.

 

[Michele01]

Ok - so silly question then! Why isn't everybody who is newly diagnosed, tested with a GAD test? Is late onset Type 1 unusual? I don't know if this helps but for 30 years I've had reactive hypoglaecemia, didn't take medication and managed it by diet alone (when I had an attack). Would this go hand in hand with becoming a Type 1. There's also no history of type 1 in my family although my father had late onset type 2.

Just for info, between Christmas and New Year I was put on a basal/bolus routine of Levemir/Novorapid and my levels are coming down and becoming more normalised. In my area they don't have a DAFNE course but apparently have something similar and I'm now on a waiting list for that.

Thank you for all your replies so far.

 

[azure]

Money, I guess.

I don't know about your reactive hypoglycaemia, but prior to being diagnosed, I had a number of episodes of what felt like hypos. They usually came on some hours after eating. I asked my consultant about this and she said that sometimes as the pancreas 'fails' it can still churn out insulin but takes too long to do so and then makes too much, causing a pattern of high just after eating and low before the next meal.

Glad your sugars are better controlled now

Edited to add - I don't know the figures for late onset Type 1 but it doesn't seem to be unusual.
​

 

[Michele01]

Another silly question (sorry)! Is LADA Type 1.5 reversible (like Type 2)? I'm guessing it's not because of the damage to the Pancreas?

 

[dannyw]

Another silly question (sorry)! Is LADA Type 1.5 reversible (like Type 2)? I'm guessing it's not because of the damage to the Pancreas?

No, unfortunately not. It is the auto-immune variety. Not reversible but very controllable

 

[tim2000s]

Ok - so silly question then! Why isn't everybody who is newly diagnosed, tested with a GAD test?

I'm not sure which is more expensive, GAD or C-Peptide. Whichever is cheapest should be used, and both would give a good indication. In the case of the C-Peptide test you'd be seen to produce too little insulin, instead of too much which is what is seen in T2.

 

[Andy-Sev]

I think the answer is sadly whilst they can run expensive tests the experts also know that as diabetes runs its course in the first couple of years things will become clearer when a clear diagnosis is not easy at presentation. It means that sadly many with non clear cut diabetes either end up in limbo or diagnosed as Type 2 only to end up Type 1.

In my case I was diagnosed last September with some thinking I was type 2 due to age and weight whilst a specialist suspected I was late type 1 despite having a negative GAD test. So my course of treatment has been pretty much we will see how it plays out and as it does it will become clearer what you are but it can take time. As such I started on insulin then when my numbers came down I switched to Metformin with it being suspected that I was having a Type 1 honeymoon but couldn't stay on insulin because small doses caused hypos. Now in the last few weeks I have noticed a minor creeping up of my blood sugar readings and will be back in touch with my DNS later this week. Initially this state of limbo really annoyed me but I was fortunate to have been allocated a DNS who is happy for me to call with any minor concerns which has meant I have been more comfortable with letting things play out knowing that I had someone willing to listen to me and keep an eye on me. I hope you get a DNS who is as patient as mine as I know I have been lucky.

One thing I would recommend is getting the book "Think Like a Pancreas", I have read it twice now and it has provided not just an education but a lot of reassurance.

 

[PD Oz]

I'm very interested to understand how I could possibly have gone from pre-diabetic to type 2 and then type 1 in less than a year! So, could I ask some advice please in advance of seeing my consultant?

- In December 2014 I was diagnosed as pre-diabetic (with blood tests - not sure which but presume one was fasting).
- In March 2015 I was put on Metformin as my levels had moved "slightly" and the consultant thought it wise to start low level treatment.
- In June 2015 my levels were ok but I wasn't tolerating Metformin so was put on Forxiga.
- In July 2015 I was admitted to hospital with DKA (brought on by taking the Forxiga).
- On leaving hospital I was prescribed insulin injections because everybody was worried about giving me more tablets and what could happen.
- Since then, I've struggled to get my levels down (at one point they were all in the 20s and as high as 30).
- In November 2015 I had a GAD (?) and CPEP test that showed I am now a Type 1.

I had been left to my own devices by my original consultant and my GP (on Christmas Eve) transferred my care to the consultant I was under at the hospital that treated the DKA (and the one that did the test for Type 1 in November so I'm hopeful that my care will be much more thorough going forward BUT what I want to know is how I've gone from pre-diabetic to type 1 in a year! Could it be, as I suspect, that the Forxiga has damaged my pancreas with the DKA to the extent that it's destroyed any natural ability I had to produce insulin? Has the move from Type 2 to Type 1 happened to anybody else so quickly who hasn't had these tablets? I'd love your thoughts on this please.

I agree with all the comments that you were Type 1 all along. Same thing happened to me but on a much slower basis. Gradual weight loss without rational explanation is a good indicator. At least take heart from the fact that type 2s mostly eventually need insulin and all that does is help them pack on more weight and hence need higher doses etc. I think you should get some good advice on a dietician and re-evaluate your diet. You should aim for higher fibre foods with slow release energy. A good balance and monitoring of insulin levels should end up arriving at your usual dose. If you cannot get a consultant to monitor those levels over a couple of weeks perhaps you can get a good diabetic care nurse monitoring and discussing levels as your food and dose adjustments settle in.

 

[bambee3]

I too have had a long ? misdiagnosed type. When I was 17yrs old I had a medical to start working. My blood test showed high BG levels. For years I would have symptoms, excessive thirst ++++++ nothing to drink 3 litres and still want more. My weight was reasonable as I walked a lot as were I worked very was spread out. In my 20's I was told I had Hyperglycemia with Hypoglycemic turns and again left to my own devices. I tried to watch what I ate, cont to walk a lot and battled with the symptoms I had. One day I questioned my doctor about why they didn't just say I was diabetic and be done with it. I was told that my blood levels sit on the border line and until they cross the line I just have to manage it,. I now have a long standing joke - we moved to another state when I was 35yrs old, and within a few weeks I was not well. The Dr did some blood tests and bingo - my blood tests had finally crossed the line. My Diab Ed has also stated previously that she thinks I was misdiagnosed.
Here in Australia we have Diabetes Australia a govt thing to help with costs etc. The Dr at diagnosis has to let them know what type of Diabetes you have when they complete the forms. I silly me did not ask the type of diabetes as I was just happy I guess to finally be in the category to get some help. The original Dr moved away just a few days after my tests came back. Now many years later ( 50+yrs old) I have been put onto an Insulin pump thanks to my Diabetes Ed - I was taking massive amounts of Insulin daily 300+ units at times.Since being on the pump I have just about halved the amount of Insulin. She has told me that Diab Aust has me listed as a Type 1, but for all these years Dr's have been listing and treating me as Type 2. When I asked my Dr about testing to check he told me it doesn't matter as long as the treatment I am on is working. So I am still unsure, although I tend to believe I am Type 1 as you can not get an insulin pump here if you are Type 2, although I do believe in extreme circumstances you can apply for one. I also contacted Diab Aust to see what I was registered as and was told I had to be a Type 1 to get a pump.
Sorry for the long winded reply, but it just shows there are many of us labelled and treated under misdiagnosis

 

[PD Oz]

I too have had a long ? misdiagnosed type. When I was 17yrs old I had a medical to start working. My blood test showed high BG levels. For years I would have symptoms, excessive thirst ++++++ nothing to drink 3 litres and still want more. My weight was reasonable as I walked a lot as were I worked very was spread out. In my 20's I was told I had Hyperglycemia with Hypoglycemic turns and again left to my own devices. I tried to watch what I ate, cont to walk a lot and battled with the symptoms I had. One day I questioned my doctor about why they didn't just say I was diabetic and be done with it. I was told that my blood levels sit on the border line and until they cross the line I just have to manage it,. I now have a long standing joke - we moved to another state when I was 35yrs old, and within a few weeks I was not well. The Dr did some blood tests and bingo - my blood tests had finally crossed the line. My Diab Ed has also stated previously that she thinks I was misdiagnosed.
Here in Australia we have Diabetes Australia a govt thing to help with costs etc. The Dr at diagnosis has to let them know what type of Diabetes you have when they complete the forms. I silly me did not ask the type of diabetes as I was just happy I guess to finally be in the category to get some help. The original Dr moved away just a few days after my tests came back. Now many years later ( 50+yrs old) I have been put onto an Insulin pump thanks to my Diabetes Ed - I was taking massive amounts of Insulin daily 300+ units at times.Since being on the pump I have just about halved the amount of Insulin. She has told me that Diab Aust has me listed as a Type 1, but for all these years Dr's have been listing and treating me as Type 2. When I asked my Dr about testing to check he told me it doesn't matter as long as the treatment I am on is working. So I am still unsure, although I tend to believe I am Type 1 as you can not get an insulin pump here if you are Type 2, although I do believe in extreme circumstances you can apply for one. I also contacted Diab Aust to see what I was registered as and was told I had to be a Type 1 to get a pump.
Sorry for the long winded reply, but it just shows there are many of us labelled and treated under misdiagnosis

I think you should ask your Dr for a referral to a specialist Endocrinologist and seek for a C Peptide test to establish if you are producing any C Peptides. That should confirm a diagnosis. I believe it is true that if your HBA1c levels were within reasonable range, despite the misdiagnosis, then you would not likely have suffered any harm. If oral meds do the trick on their own that is quite okay I think.

 

[amdram]

1. Diabetes is not an exact science by any manner of means - I used to think diabetes was divided in to ~Type 1 ( insulin using) and Type 2 (diet and/or pills), but I am a Type 2 insulin user..

2. I took Forxiga last year, but only for a week - I lost weight, was terribly lethargic and felt generally unwell, so back on the insulin. At least I can alter the units depending on the levels - you can't add a bit to a pill or cut a bit off!

 

[tim2000s]

If you are a Type 1.5 Forxiga is the last thing you should take as it encourages the pancreas to produce insulin, causing the autoimmune attack to destroy what beta cells you have left.

If you are type 1.5 and can't handle it by low carb diet alone, insist on insulin.

 

[tim2000s]

As an FYI, T1.5s are not supposed to be treated with drugs like Forxiga unless under strict supervision. Very high risk of euglycemic DKA.
Guidelines are insulin. If you suspect you are 1.5, insist on getting it checked out.

 

[Michele01]

Anybody who is on Forxiga should be testing for ketones (at least for the first few weeks) and I'm horrified that this isn't insisted on as "standard" practice.