Stopped taking insulin. Type 1

[wersterlobe]

Hi

I stopped taking my insulin on 31st of March just to see how long I could last without it however as time has gone on my ketones are still fine 0.1 - 0.2 range and I’m coming up to a month without any insulin at all. What do you think the reason could be, me being able to last this long without any problems? FYI I’m 26 and diagnosed 2021.

 

[mouseee]

What are your blood sugars looking like?

 

[jaywak]

I would say you have been misdiagnosed type 1 , your body would not last more than a couple of days without insulin .

 

[kkapo18]

Have you stopped just the fast acting insulin or just keeping the long acting in the background?

Not taking any insulin for a month either your pancreas is still making a lot insulin or you've been misdiagnosed T1!

 

[kkapo18]

I would say you have been misdiagnosed type 1 , your body would not last more than a couple of days without insulin .

Could it be that he just has an extremely long 'honeymoon' period? I guess unlikely but curious as for some people they can have a prolonged one from what i've read.

 

[wersterlobe]

Have you stopped just the fast acting insulin or just keeping the long acting in the background?

Not taking any insulin for a month either your pancreas is still making a lot insulin or you've been misdiagnosed T1!

I have stopped taking both short acting and long acting entirely.

 

[wersterlobe]

What are your blood sugars looking like?

They do go high sometimes but come down naturally over time

 

[kkapo18]

They do go high sometimes but come down naturally over timwhat are your ave

I have stopped taking both short acting and long acting entirely.

What are your average blood sugars?
What level does it go up to after meals before coming back down?
How long does it take for sugars to come back down?

 

[wersterlobe]

What are your average blood sugars?
What level does it go up to after meals before coming back down?
How long does it take for sugars to come back down?

They can sometimes go up to 15-18 and come down after a few hours back down to 7-8

 

[kkapo18]

They can sometimes go up to 15-18 and come down after a few hours back down to 7-8

Thats pretty high though? Sounds like you could still have a fairly high HBA1C - I would urgently check your level with your medical doctor to see if what you are doing is safe...You might still need some background insulin atleast?

 

[wersterlobe]

Can I ask when were you diagnosed please ?

November 2021

 

[kkapo18]

November 2021

What you don't want to risk, is lets say you are still in honeymoon phase and suddenly your pancreas packs in, you could very quickly go into DKA.

Definitely check with doctor to see what your C-peptide is - this will show you how much insulin your pancreas is making!

Do you have the GAD-antibody / C peptide results from your initial diagnosis?

 

[wersterlobe]

Thats pretty high though? Sounds like you could still have a fairly high HBA1C - I would urgently check your level with your medical doctor to see if what you are doing is safe...You might still need some background insulin atleast?

I did speak to them but they didn’t seem that bothered and said they would just discharge me if that was the case. My hba1c is 9.6

 

[jaywak]

They can sometimes go up to 15-18 and come down after a few hours back down to 7-8

That is still high ! I would say you will need some sought of medical intervention or cause yourself some harm .

 

[Antje77]

I did speak to them but they didn’t seem that bothered and said they would just discharge me if that was the case. My hba1c is 9.6

With your hba1c at 9.6, your average blood glucose has likely been close to 13.

You're only two and a half years in. early enough to still produce enough insulin to keep you out of DKA because of the honeymoon period for now.

But why are you choosing to not take insulin and run this high? You're young, and you're going to need your eyes, feet and kidneys for a long time hopefully, please take care of yourself!

 

[LittleGreyCat]

They can sometimes go up to 15-18 and come down after a few hours back down to 7-8

Those numbers look similar to mine as a T2 of 17 years, with a presumed slowly failing pancreas.
It is worth talking to your medical team about non-insulin medication given to T2s as they might help to moderate your BG.
Your numbers are still too high.
My last HbA1c was 7.8% and that was enough to decide to start an additional medication.

I am surprised a medical team would sign you off with those numbers, unless it was an endocrine clinic which treats T1s referring you back to your GP surgery which treats T2s.
[Yes, I know that is a broad generalisation. ]

 

[searley]

My dad is a type 1 and has had periods without insulin but that can quickly change and unchecked has ended up in hospital

I’m type one, my c peptide test was 60 and anything below 600 in considered low T1.. and the T1 was confirmed by a genetics consultant.. I have had periods where I’ve gone without insulin, again over time this changes

The theory being that where I’ve been totally supported by injections my pancreas has rested and recovered a little and kickstarted itself however stopping insulin it soon burns out again.. the further I get from diagnosis the less this has happened so some form of extended honeymoon?

 

[jaywak]

I was always told that with type 1 diabetes the insulin producing beta cells were destroyed by the bodies own immune system and didn't realise that giving them a rest could reactivate them somehow , maybe there's another type of diabetes to add to the growing list . Perhaps an underactive pancreas .

 

[In Response]

I was always told that with type 1 diabetes the insulin producing beta cells were destroyed by the bodies own immune system and didn't realise that giving them a rest could reactivate them somehow , maybe there's another type of diabetes to add to the growing list . Perhaps an underactive pancreas .

It is not so much that dead cells are reactivated. More that dormant “dying” cells can be temporarily reactivated if they are given a rest.

 

[jaywak]

Yes I guess that could be a possibility , I just assumed mine died pretty quickly as I went from perfectly healthy to comatose within a few weeks , on the odd occasion when I have forgotten an injection my blood sugar has shot through the roof so I hate to think what would happen if I just stopped .