Is this normal?

[annlu]

About 3 years ago when I was 16 I was diagnosed with type 1 diabetes. After a couple of years with no significant change, I was diagnosed with type 1.5. Now, over 3 years later I am still pre-diabetic and there still hasn’t been much change in my health that I’ve noticed -my blood sugars are higher than normal but they have been like that since the first diagnosis. I’m wondering how long it took other people to develop type 1.5 diabetes after diagnosis? Is it normal for it to take several years?

 

[azure]

Welcome @annlu

Can you explain a little more about your diagnosis of Type 1? Did you lose weight beforehand? How high was your blood sugar? We're you taking insulin? Does anyone else in your family have diabetes?

What's your blood sugar now?

 

[annlu]

@azure Thank you!

It was discovered I had type 1 because I was having a blood test for something unrelated and the doctor's noticed I had high blood sugars, so they did more tests which concluded I was going to develop type 1. There were no others signs of it such as weight loss.
No one in my family has diabetes that we know of!
On average my blood sugars tend to be 7.5 mmol/L before meals and around 9 mmol\L after meals. They have been like this ever since I was diagnosed as pre-diabetic. I have never taken insulin or any medication for diabetes - I'm told I will start to when my blood sugars start getting higher. But it seems to be taking very long for that to happen

 

[Pmerrill]

Doesn't sound like a particularly thorough diagnosis to me. I was diagnosed as 1.5 almost 3 yrs ago and I'm still in the honeymoon period, no insulin yet. I wonder if you might be 1.5 as well?

 

[annlu]

@Pmerrill That sounds a lot like my situation. I've been told by a doctor that I am type 1.5. You say you are in the honeymoon period, does this mean you don't need to take any medication at all?

 

[catapillar]

@azure Thank you!

It was discovered I had type 1 because I was having a blood test for something unrelated and the doctor's noticed I had high blood sugars, so they did more tests which concluded I was going to develop type 1. There were no others signs of it such as weight loss.
No one in my family has diabetes that we know of!
On average my blood sugars tend to be 7.5 mmol/L before meals and around 9 mmol\L after meals. They have been like this ever since I was diagnosed as pre-diabetic. I have never taken insulin or any medication for diabetes - I'm told I will start to when my blood sugars start getting higher. But it seems to be taking very long for that to happen

Have you been diagnosed as pre-diabetic? Pre-diabetic is for pre-type2diabetes, there is no pre-diabetes for type 1.

Type 1 diabetes is an autoimmune disease. The immune system takes against insulin producing beta cells in the pancreas and kills them off. The kill off doesn't happen like a switch being flipped. Most type 1 diabetics will need insulin on diagnosis, but even then there will be a honeymoon where there is some residual insulin production. Sometimes the honeymoon is so strong that insulin can be avoided, and it can continue for a while. Usually it is people diagnosed with type 1 diabetes at an older age that have a strong honeymoon period and this is called type 1.5, but all it means is type 1 with a long honeymoon period. It migh take a while, but in type 1 the immune system will continue to kill off the beta cells until insulin is required.

Were the further tests you had were antibody tests to confirm type 1?

If youre type 1.5 enjoy the honeymoon, keep in close contact with your HCP while you aren't on insulin with regular hba1c tests and random testing after meals so you aren't missing anything that might suggest you need to consider insulin.

 

[Pmerrill]

That's right no meds at all although I do have emergency insulin in the fridge. I think I continue to have fairly good control through a lowing carb intake and I exercise a lot. I'm sure my insulin will run out at some point but everyone is different. I've got my 6mth hba1c at the end of this week so I'll find out how things are progressing. Do you have regular checks?

 

[annlu]

@catapillar Ahh thank you, this helps so much

I wasn't aware that pre-diabetic was only for type 2. I suppose I must be in the honeymoon period as I am type 1.5.

I actually can't remember what the tests were, I wasn't really informed of what was going on at the time. I wish I had been as I have very little understanding of everything even now.

Thanks again, this has cleared up a lot for me!

 

[annlu]

@Pmerrill I see well hopefully your insulin doesn't run out for a while still, and good luck with the hba1c test! Yes I have check-ups every 6 months.

 

[azure]

@catapillar Ahh thank you, this helps so much

I wasn't aware that pre-diabetic was only for type 2. I suppose I must be in the honeymoon period as I am type 1.5.

I actually can't remember what the tests were, I wasn't really informed of what was going on at the time. I wish I had been as I have very little understanding of everything even now.

Thanks again, this has cleared up a lot for me!

Ask for some more information about what tests were done. It's normal not to take everything in at the time, so don't be worried about asking for clarification.

It's good you're being monitored regularly. Insulin can help preserve your remaining beta cells so don't be afraid if it's mentioned, or be afraid to ask if you need it if your BS stays higher than desired.

 

[Pmerrill]

Good luck to you too annlu. Hope your honeymoon period lasts a long time too!

 

[annlu]

@azure thank you! I will definitely be asking about this at my next appointment

 

[Daibell]

Hi. In one sense there is pre-diabetes for T1 and that's the honeymoon period where the pancreas is going downhill but produces enough to avoid meds. My T1.5 (= Late onset T1) has taken around 12 years so far to develop and my natural insulin is still going down as I have to keep increasing my insulin. My weight has been virtually unchanged for 15 years or so and I'm slim. Note that Late onset T1 isn't always caused by GAD antibodies as viruses, pancreatitis etc can all result in damage to the islet cells. My GAD was negative but my c-peptide but low enough to need insulin.

 

[Engineer88]

sounds more like one of the forms of MODY to me...

 

[DaftThoughts]

Note that Late onset T1 isn't always caused by GAD antibodies as viruses, pancreatitis etc can all result in damage to the islet cells.

The definition of type 1 and LADA are that the body has an auto-immune response to the beta-cells, which shows up in a GAD test. Other forms of insulin-dependent diabetes don't have this and cannot be classified as T1 for this reason. For example, T2 diabetics can become insulin dependent because they no longer produce any insulin either due to damage to the cells, but that doesn't make them have an auto-immune condition and become T1. Pancreatitis isn't caused by an auto-immune response either. Viruses causing damage don't classify as auto-immune either. It can all become insulin dependent diabetes, but if it's not an auto-immune condition, it's not T1.

It's very very important to make this distinction because having an auto-immune condition can indicate an increased risk for other auto-immune conditions, and needs to be monitored differently. To say that a condition like pancreatitis is the same as having late-onset type 1 diabetes is not correct.

 

[Daibell]

The definition of type 1 and LADA are that the body has an auto-immune response to the beta-cells, which shows up in a GAD test. Other forms of insulin-dependent diabetes don't have this and cannot be classified as T1 for this reason. For example, T2 diabetics can become insulin dependent because they no longer produce any insulin either due to damage to the cells, but that doesn't make them have an auto-immune condition and become T1. Pancreatitis isn't caused by an auto-immune response either. Viruses causing damage don't classify as auto-immune either. It can all become insulin dependent diabetes, but if it's not an auto-immune condition, it's not T1.

It's very very important to make this distinction because having an auto-immune condition can indicate an increased risk for other auto-immune conditions, and needs to be monitored differently. To say that a condition like pancreatitis is the same as having late-onset type 1 diabetes is not correct.

I'm sorry but I have to disagree with you. I'm not aware that T1 is defined purely as an auto-immune disease. Mostly T2s don't suffer from reduced insulin output but in fact too much due to insulin resistance. It's just as confusing to be classified as a 'T2' when you are slim and suffering from low-insulin when the majority will result from a completely different cause i.e. excess weight and insulin resistance is not helpful. It was this confusion and ignorance on the part of my GP that caused my insulin to be delayed for a year or so when needed. To quote 'You are not T1 you are T2 and insulin is a last resort'. So I will continue to refer to myself as Late onset T1 as the cause of the islet failure is irrelevant but the right treatment is. I accept that those with an auto-immune cause should be monitored for other auto-immune conditions just as I would have liked to be treated for low insulin and not bundled in the T2 group. and fed with the complete set of tablets when they were no longer working.

 

[Nidge247]

I'm sorry but I have to disagree with you. I'm not aware that T1 is defined purely as an auto-immune disease. Mostly T2s don't suffer from reduced insulin output but in fact too much due to insulin resistance. It's just as confusing to be classified as a 'T2' when you are slim and suffering from low-insulin when the majority will result from a completely different cause i.e. excess weight and insulin resistance is not helpful. It was this confusion and ignorance on the part of my GP that caused my insulin to be delayed for a year or so when needed. To quote 'You are not T1 you are T2 and insulin is a last resort'. So I will continue to refer to myself as Late onset T1 as the cause of the islet failure is irrelevant but the right treatment is. I accept that those with an auto-immune cause should be monitored for other auto-immune conditions just as I would have liked to be treated for low insulin and not bundled in the T2 group. and fed with the complete set of tablets when they were no longer working.

Agree with @Daibell that T1 (and indeed T1.5) is not purely an auto-immune condition.

Just my twopenneth...

I was diagnosed 28 months ago as LADA, but still have plenty of beta-cells producing insulin, and no auto-immune issues to date. I needed insulin initially due to my hba1c being dangerously high, until changing my diet to LCHF, whereupon I steadily reduced my insulin doses to not needing it at all. My consultant has always stated that many conditions of D do overlap, and some people will exhibit some of the different types; thus making the Type Definition quite difficult in several cases.
I was (am) T1.5, due to the rapid weight loss prior to diagnosis and my age, but DONT have the auto-immune condition as yet. Whether this proves to be a honeymoon, or simply management of the condition by halting further issues will come to the fore in the future. All I can say is that I'm now fitter and healthier than I've been in decades, and can only attribute that change to LCHF as nothing else has changed. I did THAT change to manage my D and stop the hypers and hypos; the added health benefits were a welcome bonus.

 

[NewTD2]

Agree with @Daibell that T1 (and indeed T1.5) is not purely an auto-immune condition.

Just my twopenneth...

I was diagnosed 28 months ago as LADA, but still have plenty of beta-cells producing insulin, and no auto-immune issues to date. I needed insulin initially due to my hba1c being dangerously high, until changing my diet to LCHF, whereupon I steadily reduced my insulin doses to not needing it at all. My consultant has always stated that many conditions of D do overlap, and some people will exhibit some of the different types; thus making the Type Definition quite difficult in several cases.
I was (am) T1.5, due to the rapid weight loss prior to diagnosis and my age, but DONT have the auto-immune condition as yet. Whether this proves to be a honeymoon, or simply management of the condition by halting further issues will come to the fore in the future. All I can say is that I'm now fitter and healthier than I've been in decades, and can only attribute that change to LCHF as nothing else has changed. I did THAT change to manage my D and stop the hypers and hypos; the added health benefits were a welcome bonus.

Hi mate,

My GP suspects LADA with my diabetes.

I suffered from ketoacidos and nearly died at the hospital, that's when I found out I was diabetic.

And because my blood readings were high, they immediately put me on Insulin Glargine (Lanthus) and this was stopped after 13 days when my blood glucose levels went down to 5s and 6s.

And the reason for this was LCHF diet.

Now only taking Metformin 500 mg.

I want to know from your experience if we are on honeymoon period?

Andrew

 

[Alexandra100]

Hi mate,

My GP suspects LADA with my diabetes.

I suffered from ketoacidos and nearly died at the hospital, that's when I found out I was diabetic.

And because my blood readings were high, they immediately put me on Insulin Glargine (Lanthus) and this was stopped after 13 days when my blood glucose levels went down to 5s and 6s.

And the reason for this was LCHF diet.

Now only taking Metformin 500 mg.

I want to know from your experience if we are on honeymoon period?

Andrew

Maybe, but in a way it doesn't make any difference. Whatever your problem, you have had a huge success and enormously improved your condition with the LCHF diet. I'm no expert, but my understanding is that you can preserve your beta cells and extend any honeymoon for the longest possible time by continuing what you are doing. I like Dr Bernstein's idea that what counts is not the category - T1, T2 or LADA - but the levels of glucose in your blood. It's up to you to decide what levels you want to aim for. Personally, I am aiming for <5 fasting in the morning, <5.5 pre and post prandial, and NEVER over 6.6. I got these figures from Jenny Ruhl
http://www.phlaunt.com/diabetes/
I have to admit, I have not yet reliably achieved my fasting, pre and post prandial aims yet, perhaps they are too ambitious for me, but I have not seen anywhere near 6.6 for a long time. Good luck!

 

[Boozon]

Hi @Pmerrill - I notice you are now on basal insulin. How did things change?

I'm nearly 2 yrs since diagnosis and still no insulin but feel harder to bring my levels down without an hour walk.