Question

[Michelle F 1991]

Hi Everyone,
I was diagnosed with Type 1 Diabetes nearly 5 years ago, I have been going through what they class as the 'honeymoon' stage for quite a while but I think it could be changing. I have got a question that I need help with.
As a type 1, before my dinner without any insulin throughout the day (I do take 3 units of Levemir overnight however) my blood sugar levels are usually between 4.5 and 6 (i do stick to a relatively low carb diet). After dinner they do rise if I don't take insulin however they do come down to a safe level on their own. Does this suggest my body is still producing insulin?
Thank you!

 

[Bruce Stephens]

Does this suggest my body is still producing insulin?

That's how I'd interpret it, yes. That's apparently not all that unusual (that they produce significant quantities of insulin) in people with Type 1 though you do sound rather unusual in how much, and I'd assume your doctors will be interested at some point in rechecking what type you are just to be more confident, just because you sound so atypical.

 

[helli]

Hi @Michelle F 1991 and welcome to the forum.
With the huge caveat that I have no medical training, I would suggest it one of a few things is happening
- firstly, everyone's BG rises when they eat. Even if they eat low carb.
- your Levemir may be high enough to "mop up" any excess carbs - does it keep your BG steady throughout the rest of the day or do you find you need to "feed it"?
- you body is definitely producing some insulin. I think there have been test of people who had Type 1 for more than 20 years who are still producing a little of their own and, from personal experience, my honeymoon period lasted about 8 years with my insulin dose slowly rising through that time until it plateaued. Whether your body is producing "enough" insulin, depends on things like how high your BG rise to and how long does it stay there?

 

[mashedupmatt]

Hi @Michelle F 1991 and welcome to the forum - the honeymoon period can quite often last years and from what you have said you must still be producing some homegrown insulin - it does change though - my insulin needs have doubled over the past year or so (both Levemir and Fiasp (for meals)) - the low carb approach is absolutely fine but when you do have more carbs what happens then?

 

[Inka]

Welcome @Michelle F 1991 🙂 When I was first diagnosed, my body could get my blood sugar down eventually. I experimented by omitting insulin (not recommended). After a normal breakfast, my blood sugar spiked but then by lunch had come down to 3.8. My consultant explained it was just part of a failing pancreas, producing a little too much insulin and too late. She also explained that insulin would help my remaining beta cells last longer even though they were still making some insulin. So, I didn’t omit my insulin again, and had a very long honeymoon period and am still making a tiny bit now.

Eating low carb just masks the issue and still wears out your beta cells because too few carbs cause a form of insulin resistance. If you’re want to do the best for your beta cells, then eat normally and support them with insulin. It’s hard coming to terms with Type 1 but eating well and taking insulin is the way forward.

 

[Lucyr]

Your body is definitely producing insulin. Did you have any tests done to determine that you’re definitely T1? If not it may be worth asking for tests to check if you’re really T1 or actually T2

 

[Michelle F 1991]

That's how I'd interpret it, yes. That's apparently not all that unusual (that they produce significant quantities of insulin) in people with Type 1 though you do sound rather unusual in how much, and I'd assume your doctors will be interested at some point in rechecking what type you are just to be more confident, just because you sound so atypical.

Thanks Bruce, I've got an appointment with my GP to discuss the possibility of misdiagnosis just in case!

 

[Michelle F 1991]

Your body is definitely producing insulin. Did you have any tests done to determine that you’re definitely T1? If not it may be worth asking for tests to check if you’re really T1 or actually T2

They did do some tests to determine which one but I've read that misdiagnosis is possible. I've got an appointment with my GP to discuss. Thanks for your reply Lucy!

 

[Michelle F 1991]

Welcome @Michelle F 1991 🙂 When I was first diagnosed, my body could get my blood sugar down eventually. I experimented by omitting insulin (not recommended). After a normal breakfast, my blood sugar spiked but then by lunch had come down to 3.8. My consultant explained it was just part of a failing pancreas, producing a little too much insulin and too late. She also explained that insulin would help my remaining beta cells last longer even though they were still making some insulin. So, I didn’t omit my insulin again, and had a very long honeymoon period and am still making a tiny bit now.

Eating low carb just masks the issue and still wears out your beta cells because too few carbs cause a form of insulin resistance. If you’re want to do the best for your beta cells, then eat normally and support them with insulin. It’s hard coming to terms with Type 1 but eating well and taking insulin is the way forward.

Thank you! I have low carb for diet purposes mainly. Sounds very similar to my situation how you have been.
It has been very hard to come to terms with, thinking I need to count carbs for the rest of my life is not something I want to do but that's probably my reality. I have got an appointment with my GP to discuss if there is a possibility of a misdiagnosis so we shall see the outcome of that!

 

[Michelle F 1991]

Hi @Michelle F 1991 and welcome to the forum - the honeymoon period can quite often last years and from what you have said you must still be producing some homegrown insulin - it does change though - my insulin needs have doubled over the past year or so (both Levemir and Fiasp (for meals)) - the low carb approach is absolutely fine but when you do have more carbs what happens then?

Higher carbs do obviously give me a spike but then it comes back down it's own probably within a couple of hours. I'm very naive when it comes to Diabetes, from what I understand, it's the spikes, whether or not they come down quickly or not, that are dangerous, is that right?

 

[Michelle F 1991]

Hi @Michelle F 1991 and welcome to the forum.
With the huge caveat that I have no medical training, I would suggest it one of a few things is happening
- firstly, everyone's BG rises when they eat. Even if they eat low carb.
- your Levemir may be high enough to "mop up" any excess carbs - does it keep your BG steady throughout the rest of the day or do you find you need to "feed it"?
- you body is definitely producing some insulin. I think there have been test of people who had Type 1 for more than 20 years who are still producing a little of their own and, from personal experience, my honeymoon period lasted about 8 years with my insulin dose slowly rising through that time until it plateaued. Whether your body is producing "enough" insulin, depends on things like how high your BG rise to and how long does it stay there?

It does keep it relatively steady, I get a slight spike after my breakfast and coffee but then by lunch time it has generally fallen again.
I read somewhere that Metformin can help Type 1's with regards to Insulin sensitivity so am going to discuss with my GP. I'm also going to discuss the possibility of a misdiagnosis as there is no history in my family of type 1, only type 2, so we shall see the outcome of that!

 

[Inka]

It does keep it relatively steady, I get a slight spike after my breakfast and coffee but then by lunch time it has generally fallen again.
I read somewhere that Metformin can help Type 1's with regards to Insulin sensitivity so am going to discuss with my GP. I'm also going to discuss the possibility of a misdiagnosis as there is no history in my family of type 1, only type 2, so we shall see the outcome of that!

Most people diagnosed with Type 1 have no close relatives with it @Michelle F 1991 It’s good you’re getting checks if there’s any doubt about your diagnosis though. They can do tests to help confirm your type - ie the Type 1 antibodies test and a C Peptide test.

What I forgot to say in my post above is that I’m still making a tiny bit of insulin more than 30 years after diagnosis. You mention Metformin. Most Type 1s do not take that as it’s a Type 2 drug to help insulin resistance (which is associated with Type 2). Most Type 1s are sensitive to insulin.

Were you diagnosed by your GP or in hospital? Did you have ketones? There must have been a reason why you were thought to be Type 1?

 

[mashedupmatt]

Can you tell us what led your healthcare team to diagnose you as type 1? Did you lose lots of weight unexpectedly (I did)? Any other symptoms (Going to the toilet frequently, excessive thirst, feeling very tired)? Did they do a couple of extra blood tests (Auto-antibody and C-Peptide) ? Sorry for all the questions! It is completely normal (for anyone, even those without diabetes) to have "spikes" after food but it is unusual for a type 1 that without taking any insulin that it would come down so well (not unheard of in the honeymoon period, but rare)

 

[mashedupmatt]

You beat me to it @Inka 🙂

 

[Inka]

Can you tell us what led your healthcare team to diagnose you as type 1? Did you lose lots of weight unexpectedly (I did)? Any other symptoms (Going to the toilet frequently, excessive thirst, feeling very tired)? Did they do a couple of extra blood tests (Auto-antibody and C-Peptide) ? Sorry for all the questions! It is completely normal (for anyone, even those without diabetes) to have "spikes" after food but it is unusual for a type 1 that without taking any insulin that it would come down so well (not unheard of in the honeymoon period, but rare)

The Levemir might be helping @mashedupmatt As you see above, during my brief experimentations without insulin, I came down to 3.8, and when I was diagnosed I was on the verge of DKA. It was a long time ago now so I can’t remember exactly when I did my experiment but I would guess it was a fair few weeks after diagnosis. I did it because I found it hard to accept that I suddenly had Type 1.

 

[Michelle F 1991]

Most people diagnosed with Type 1 have no close relatives with it @Michelle F 1991 It’s good you’re getting checks if there’s any doubt about your diagnosis though. They can do tests to help confirm your type - ie the Type 1 antibodies test and a C Peptide test.

What I forgot to say in my post above is that I’m still making a tiny bit of insulin more than 30 years after diagnosis. You mention Metformin. Most Type 1s do not take that as it’s a Type 2 drug to help insulin resistance (which is associated with Type 2). Most Type 1s are sensitive to insulin.

Were you diagnosed by your GP or in hospital? Did you have ketones? There must have been a reason why you were thought to be Type 1?

I think an antibody test was carried out, it was a few years back now so I can't remember exactly what they did, I just remember them taking a lot of blood!
Oh really, that's handy to know, roughly how much do you inject before a balanced meal if you don't mind me asking? And do you still feel you can have treats from time to time? At the moment, I feel frightened to death to eat anything out of the ordinary for me!
I has blood tests done at the hospital and then my GP informed me. I didn't have any ketone and I still don't now.
It's all so confusing, I feel like I am never going to get my head around it!

 

[mashedupmatt]

The Levemir might be helping @mashedupmatt As you see above, during my brief experimentations without insulin, I came down to 3.8, and when I was diagnosed I was on the verge of DKA. It was a long time ago now so I can’t remember exactly when I did my experiment but I would guess it was a fair few weeks after diagnosis. I did it because I found it hard to accept that I suddenly had Type 1.

Very true @Inka - it took me some time to come to terms with it all - I tried similar a few months after diagnosis (eating a grab bag of crisps and a sandwich) with no insulin on board other than Lantus (I was on that at the time, with a very conservative dose) and it did come down ok but tried again about 6 months later and it was a different story - just shows how everyone is completely different and why this place is so good to get multiple different perspectives - it has helped me beyond belief

 

[Inka]

I think an antibody test was carried out, it was a few years back now so I can't remember exactly what they did, I just remember them taking a lot of blood!
Oh really, that's handy to know, roughly how much do you inject before a balanced meal if you don't mind me asking? And do you still feel you can have treats from time to time? At the moment, I feel frightened to death to eat anything out of the ordinary for me!
I has blood tests done at the hospital and then my GP informed me. I didn't have any ketone and I still don't now.
It's all so confusing, I feel like I am never going to get my head around it!

Yes! I eat a normal diet, including treats 🙂 I eat cereal, bread, pasta, rice, potatoes, cake, desserts, etc etc - just normal things. The recommended diet for Type 1 is the same healthy diet recommended for everyone 🙂 I inject my bolus insulin depending on how many carbs I’m going to eat, what my blood sugar is and what I’m going to be doing after my meal. My meal ratios vary (different for breakfast, lunch and evening meal).

You shouldn’t be afraid of food. It makes me sad when Type 1s are. Type 1 can really cause issues with food. It’s a horrible thing. I eat what I’d have eaten if I hadn’t developed Type 1 basically. The ‘only’ difference is I have to be my own pancreas.

 

[mashedupmatt]

You shouldn’t be afraid of food. It makes me sad when Type 1s are. Type 1 can really cause issues with food. It’s a horrible thing. I eat what I’d have eaten if I hadn’t developed Type 1 basically. The ‘only’ difference is I have to be my own pancreas.

That is SO true - the best quote ever IMO - I'm going to steal that one - thanks @Inka (hope you haven't copyrighted it lol)

 

[Inka]

That is SO true - the best quote ever IMO - I'm going to steal that one - thanks @Inka (hope you haven't copyrighted it lol)

You can pay me royalties @mashedupmatt I accept all form of chocolate as payment