Extended honeymoon not feeling good

[Ethanw57]

I was diagnosed with T1 a touch over 2 years ago with a 13% hba1c. It was an incredible shock, and prompted me to reform my unhealthy diet until that December when I got a 5% hba1c back and my endo told me stop taking insulin altogether. This felt like great news at the time (yay no more injections) but I've slowly drifted back to the constant feeling of exhaustion that I had pre-diagnosis. When I was taking insulin I was exercising 5-6 times a week and playing/training for sport over the summer. Now I struggle to get out of bed of a morning and make it through the day. Is this something to be expected of the honeymoon period? Are there many T1s out there with this much of a honeymoon period?

I Ieel like I am in diabetic limbo, alone. My endo and my GP have not been able to help and I am at a loss for what to do next

 

[EllieM]

So what are your current blood sugars like? Your symptoms would suggest it's time for insulin, but I assume your levels are OK or your specialist would be putting you back on insulin.

And an "unhealthy" diet doesn't cause T1, though a healthy diet may prolong the honeymoon period.

Honestly, as a T1, insulin is both inevitable and your friend. You don't go onto insulin because you're somehow a failure and have a bad diet, you go onto insulin because an autoimmune condition has killed your own insulin production.

Good luck, hope you feel better soon. You shouldn't be feeling ill like that if your condition is managed properly. There are professional athletes with T1.

 

[Ethanw57]

Hello @Ethanw57

No expert and I cant diagnose you.

However you have been diagnosed T1 and now told you don't need to take insulin?????????????

Sorry but T1 is an autoimmune condition which basically means something has triggered an immune response and gone overboard on your pancreas. That's if the original diagnoses is correct.

If you search around the forum you will find that there are a few T1 that have extended their honeymoon period for sometime but in the end it usually comes to an end at some point and usually they are started on an insulin regime.

If you are feeling the way you are it is almost like you are running some very high blood sugar numbers which is not good.

If I were you I would:
Go back to your GP/Endo and ask for reassessment.
Buy a blood meter and see if that sheds any light on things.

But really go back to your GP LIKE NOW, things do not sound good and better safe than sorry.

Take care.

Definitely T1 present with antibodies. I keep strict diet & control of my BG using a libre

 

[ert]

Definitely T1 present with antibodies. I keep strict diet & control of my BG using a libre

There will be a time when you can no longer control your blood sugars with diet and exercise, no matter how extreme your regime is. Your c-peptide and blood ketones should be monitored to keep track of your deterioration and requirement for insulin. What are your latest c-peptide results and waking blood ketones? They're what your specialist should be tracking.

I moved to insulin when my c-peptide reached 0.126 nmol/l. No amount of diet or exercise would lower my blood sugars below 13 mmol/L or drop my blood ketones below 3 mmol/L. I knew the honeymoon game was up.

 

[MeiChanski]

I think you may be coming to the end of the honeymoon phase, so you'll need to contact your team again to discuss reintroducing insulin. Whether in small amounts or not because you can run the risk of DKA if you're not taking insulin now. Have you been testing for ketones?

 

[Ethanw57]

There will be a time when you can no longer control your blood sugars with diet and exercise, no matter how extreme your regime is. Your c-peptide and blood ketones should be monitored to keep track of your deterioration and requirement for insulin. What are your latest c-peptide results and waking blood ketones? They're what your specialist should be tracking.

Not sure of C peptides but ketones sitting on 1 right now. I am fully aware that I will one day be taking insulin again but for now my endo has not said it is necessary. Under her guidance I started a course of 8 units of Lantus but that caused several hypos so I have since stopped taking it. I have been tested for different auto immune conditions (Addisons, Coeliac etc) and other possible causes and everything has come back negative. This is an ongoing issue that I'm in discussions with both my GP and my endo but I am curious to know if other T1s out there have had a similar experience (long period of full remission with lethargy)

 

[MeiChanski]

Not sure of C peptides but ketones sitting on 1 right now. I am fully aware that I will one day be taking insulin again but for now my endo has not said it is necessary. Under her guidance I started a course of 8 units of Lantus but that caused several hypos so I have since stopped taking it. I have been tested for different auto immune conditions (Anderson's, Coeliac etc) and other possible causes and everything has come back negative. This is an ongoing issue that I'm in discussions with both my GP and my endo but I am curious to know if other T1s out there have had a similar experience (long period of full remission with lethargy)

Was there any discussion of reducing insulin? You can reduce insulin if it is too much and you can experiment with smaller doses of insulin.

 

[Ethanw57]

Was there any discussion of reducing insulin? You can reduce insulin if it is too much and you can experiment with smaller doses of insulin.

It was actually my suggestion to take insulin again. She said to stop taking it if I have any issues and book in again. I'm made to believe 8 units of Lantus is not a lot for a ~90kg male in the first place

 

[MeiChanski]

It was actually my suggestion to take insulin again. She said to stop taking it if I have any issues and book in again. I'm made to believe 8 units of Lantus is not a lot for a ~90kg male in the first place

I don't know if you're monitoring your levels at the moment, but I know insulin varies for people and people can tolerate smaller doses at the beginning of diagnosis. If you're hypoing because of lantus, you can certainly discuss reducing it. It's how we all manage ourselves - too little then you need more, too much then you reduce it. If you feel your endo is incorrect and you are running ketones and high numbers, then something must be done.

 

[Ethanw57]

I don't know if you're monitoring your levels at the moment, but I know insulin varies for people and people can tolerate smaller doses at the beginning of diagnosis. If you're hypoing because of lantus, you can certainly discuss reducing it. It's how we all manage ourselves - too little then you need more, too much then you reduce it. If you feel your endo is incorrect and you are running ketones and high numbers, then something must be done.

On the contrary the numbers are ok for the most part, aside from the morning rise. Ketones are good too. Just wondering if others with a similar condition to myself have also experienced the lethargy

 

[ert]

Not sure of C peptides but ketones sitting on 1 right now. I am fully aware that I will one day be taking insulin again but for now my endo has not said it is necessary. Under her guidance I started a course of 8 units of Lantus but that caused several hypos so I have since stopped taking it. I have been tested for different auto immune conditions (Addisons, Coeliac etc) and other possible causes and everything has come back negative. This is an ongoing issue that I'm in discussions with both my GP and my endo but I am curious to know if other T1s out there have had a similar experience (long period of full remission with lethargy)

Diagnosis of type 1 is a combination of c-peptide and antibodies. Normal people can have antibodies and never get diabetes. In some type 1's the diagnosis comes too late to see the antibodies. You need to ask your specialist about your c-peptide and what it means in terms of your insulin requirement.
Because of the life-threatening dangers of DKA, as a type 1 without insulin, you need to be monitoring and understanding your results and not just relying on your specialist input every 3 months. My next appointment was 4 weeks away, but I understood my numbers, saw my sudden deterioration and walked into A&E.

 

[Bluey1]

If you felt good on insulin and now you don’t have a chat to you endo about going back on insulin. I suspect I’m not the only one here, but my main motivation for taking insulin and eating carefully (most of the time) is about feeling good, the health things are just a bonus.

 

[Circuspony]

I'm 2 years post diagnosis on a hba1c of 148 and I'm still making some of my own insulin - but I'm taking Tresiba and Novorapid. I would have to manage my diet ridiculously tightly if I didn't use insulin.

I have 1/2 unit pens because sometimes I only need 1/2 unit of Novorapid.

If being on insulin would help you then try again. If you were getting hypos then a lower amount or different type is worth a try.

 

[KPD]

So what are your current blood sugars like? Your symptoms would suggest it's time for insulin, but I assume your levels are OK or your specialist would be putting you back on insulin.

And an "unhealthy" diet doesn't cause T1, though a healthy diet may prolong the honeymoon period.

Honestly, as a T1, insulin is both inevitable and your friend. You don't go onto insulin because you're somehow a failure and have a bad diet, you go onto insulin because an autoimmune condition has killed your own insulin production.

Good luck, hope you feel better soon. You shouldn't be feeling ill like that if your condition is managed properly. There are professional athletes with T1.

Hi. I was diagnosed just over 2 years ago. Was immediarely admitted to hospital under emergency order. After hours of testing was put on insulin drip and 24 hrs later released with prescription for Lantus. Just last week have now been advised to start Novorapid.End of honeymoon but have just got Freestyle Libre.Cannot understand why a doctor would tell type 1 to stop taking insulin