Not using insulin

[diegoisnuts]

Has any of you lot that have diabetes type 1 ever stopped needing insulin ive not had any for five days and keep going hypo and when ive had a big meal ive not took a jab and its not gone over 5 also wen i went pub it didnt go over 5 all day had a bbq last night that always shoots my sugar high with lots of jabs it still didnt go up, then 4am this morning i could not get it over 2.5 im confused to **** had a pint of milk big bowl of cornflakes with sugar 4 whisber bars it only just hit 5 woke up its still 5 now ***

 

[Benny G]

I do not know any of the details of your medical situation. Please consult your health care team to discuss your reduced insulin dosage. Take care.

 

[MeiChanski]

I can assure you that all type 1 diabetics need insulin, unless you're misdiagnosed, otherwise well... we'd be in hospital for DKA. I hope you find some time to speak to a diabetes specialised nurse or consultant in regards to your medication and possibly doing a carb counting course for dose adjustments.

 

[DCUKMod]

Has any of you lot that have diabetes type 1 ever stopped needing insulin ive not had any for five days and keep going hypo and when ive had a big meal ive not took a jab and its not gone over 5 also wen i went pub it didnt go over 5 all day had a bbq last night that always shoots my sugar high with lots of jabs it still didnt go up, then 4am this morning i could not get it over 2.5 im confused to **** had a pint of milk big bowl of cornflakes with sugar 4 whisber bars it only just hit 5 woke up its still 5 now ***

Hi there - How long have you been diagnosed? Some newly diganosed T1s go through a bit of a honeymoon period where their pancreas sometimes makes a contributionion the insulin front, meaning they need to inject less or even not inject frrom time to time.

A honeymoon period can last a short or a longer time, if that is what's happening to you. Some also find their insulin needs change a bit with the seasons - some needing more and some less in good weather.

If you have been diagnosed a long time, arrer your injection sites good> Some find, over time, they can have a few absorption issues, where some insulin ends up "stuck" under the skin, then it releases, without warning. When that happens it sometimes leads to lots of hypos, so that may not be it for you.

Bottom line is those are guesses, obviously, and not any form of diagnosis. Nobody can diagnose what's going on.

Do please keep testing, and testing quite a lot, just in case things change again, just as quickly as they have to get to this position. If it continues, please do have chat with your team and see if they can work it out for you.

Keep us in the loop. It'd be good to know how it all works out.

 

[diegoisnuts]

Ive been type 1 for 20 years this has never happened only 1st week i was released from hospital my honeymoon period lasted 6 months i was taken back off both night jab and day jab my diabetes has always been like clock work

 

[DCUKMod]

Ive been type 1 for 20 years this has never happened only 1st week i was released from hospital my honeymoon period lasted 6 months i was taken back off both night jab and day jab my diabetes has always been like clock work

Very odd indeed.

I notice our friend @therower is online. He is a long time T1, so I wonder if he has any wisdom to offer you.

 

[diegoisnuts]

Its still going on so i will go hospital later if i dont get a break as its a bank holiday i need this to stop before i return to work on tuesday

 

[ert]

I imagine it's because your pancreas is still producing insulin.

 

[therower]

@diegoisnuts . That all seems rather strange. My own insulin requirements do change over time. The onset of warmer weather sees my insulin dosage go down. Different exercise or work regime can make a difference. Obviously other things could be at play with you.
A quick question, you mention injecting for meals but are you using a basal insulin, lantus, tresiba or something similar.
If you are on a basal bolus regime then it’s always a good idea to re evaluate your basal doseage as a first option. To much basal could keep you low .
Other than that the only other advice I can offer is that you speak to your diabetic team to find out what could be occurring.
Good luck.

 

[ert]

I imagine it's because your pancreas is still producing insulin.

There's a study to show that T1DM produce insulin for 40 years after diagnosis. Richard A. Oram, Most People With Long-Duration Type 1 Diabetes in a Large Population-Based Study Are Insulin Microsecretors, pub online, Diabetes Care, Dec. 17. doi: 10.2337/dc14-0871

 

[EllieM]

Hmm, there's always Daniel Darkes ?

https://www.diabetes.co.uk/forum/threads/dan-darkes-type-1-diabetes-reversal.153777/

I don't suppose you've both been running marathons and have a rare gene (well, you probably wouldn't know about the latter but if you've actually started producing insulin again then I expect the doctors would be keen to give you the blood tests to find out).

He hasn't been online since October, though. I couldn't find anything on google to confirm whether or not he's still T1 free.

So you've had no insulin whatsoever for 5 days???!!!

I suppose there's the possibility that you've got MODY rather than T1, which doesn't always need insulin?

https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody

But I agree with @Knikki, keep insulin to hand and keep testing. Talk to your medical team and please please update us here on what transpires.

Good luck.

 

[diegoisnuts]

I am on lantus 28units every night at 10pm it has never changed the only time this happened before was wen i was 26 i am 36 now they never found out what caused this before the nurses put me on slide and scale and they could not even control it, i also have diabetes insipidus which is extreemly rare so i will get checked i stupidly forgot to lower my lantus tonight i hope it dont carry on it settled down this evening all i have done today is lay up and rest every time i moved even walk up to the bathroom it would then drop again

 

[evilclive]

So you've kept taking the Lantus, but haven't needed any fast acting insulin? That makes a lot more sense than no insulin at all.

 

[endocrinegremlin]

@ert thank you for the paper you mentioned above, however although the paper did detected insulin in the patients we are talking micro secretions and once the patients had got past 15 years duration they were talking about detection of >0.0003mmol.

The patients in the study were also taking their insulin as normal.

Returning to the OP, who looking back has consumed a considerable amount of sugar/carbs with out taking any insulin and still maintaining BSL round the 5 mmol mark, does not fit it to what the paper discusses.

As for why and how the OP manages this I have no idea and afraid I can't give any advice other than to meter carefully and check your meter is working as you expect and keep your insulin handy in case you start to rise dramatically.

Good luck is all I can say, sorry I can't be more help.

My aunt also found her pancreas began producing insulin after X number of years. The insulin levels themselves were not high but they caused her body to react to them and go into turmoil. It can happy in diabetics around the 20 or 30 year mark and is a noted thing, though unfortunately there are not enough of us to create 'official studies'

 

[endocrinegremlin]

Has any of you lot that have diabetes type 1 ever stopped needing insulin ive not had any for five days and keep going hypo and when ive had a big meal ive not took a jab and its not gone over 5 also wen i went pub it didnt go over 5 all day had a bbq last night that always shoots my sugar high with lots of jabs it still didnt go up, then 4am this morning i could not get it over 2.5 im confused to **** had a pint of milk big bowl of cornflakes with sugar 4 whisber bars it only just hit 5 woke up its still 5 now ***

reading the thread it sounds like you might be one of the folks whose pancreas decides to kick itself back into semi life decades later. It may be producing some levels of insulin that can't be measured and your body is not sure how react to. I'd advise contacting your name asap. It is a known complication for Ds who've had it decades.

Edited by Mod

 

[diegoisnuts]

Oh ok thankyou i will contact them after bank holiday when they open

 

[diegoisnuts]

So you've kept taking the Lantus, but haven't needed any fast acting insulin? That makes a lot more sense than no insulin at all.

I worded it wrong when i 1st wrote it yes ive not needed my daily jab per meal for five days.

 

[Robinredbreast]

Hi, I have no idea what is happening to your body, tests need to be done asap and you said you will contact your diabetes team after the Easter break. Good luck and it would be interesting to know what is going on, would you be able to keep us updated on your progress ?
Take care

 

[endocrinegremlin]

reading the thread it sounds like you might be one of the folks whose pancreas decides to kick itself back into semi life decades later. It may be producing some levels of insulin that can't be measured and your body is not sure how react to. I'd advise contacting your name asap. It is a known complication for Ds who've had it decades.

Edited by Mod

wait. what was edited and why? a message saying it was changed to remove a 'questionable word'? What word. If I am not messaged with more info this does not help but only makes me look bad.

 

[ert]

@ert thank you for the paper you mentioned above, however although the paper did detected insulin in the patients we are talking micro secretions and once the patients had got past 15 years duration they were talking about detection of >0.0003mmol.

The patients in the study were also taking their insulin as normal.

Returning to the OP, who looking back has consumed a considerable amount of sugar/carbs with out taking any insulin and still maintaining BSL round the 5 mmol mark, does not fit it to what the paper discusses.

As for why and how the OP manages this I have no idea and afraid I can't give any advice other than to meter carefully and check your meter is working as you expect and keep your insulin handy in case you start to rise dramatically.

Good luck is all I can say, sorry I can't be more help.

Wishful thinking on my part.