Wow! My pancreas is producing Insulin Again!

PeteN11

Well-Known Member
Messages
81
Type of diabetes
Type 1
Treatment type
Insulin
I was diagnosed T1 just over 3 years ago. Usual symptoms and BS of 38. A week in intensive care with insulin being pumped in 3 ways including via my neck.:eek:

On recovery I was on 40 Units of Lantus and 30+ Units of Nova Rapid with each meal.

My NHS trust team trumpets the need for 225g of carbs a day and on a Bertie course would not even discus lowering the carb count to reduce the amount of Insulin I need to take. :grumpy:

I needed to loose weight as I had put back on the 3 stone I lost whilst ill and put on even more to almost 21 Stone but with that amount of insulin running through my body I was never going to burn an ounce of stored fat so thought I would give Keto "light" a go.

I am just not regimented enough to cut out carbs completely to induce Ketosis but have given up on Spuds, Pasta & Rice. I still eat bread and limit myself to at the most 100g of carbs but normally just the 2 slices of toast in the morning. Obviously my Insulin use reduced and I was able to slowly cut both amounts down to where 4 months ago I stopped the Lantus altogether. I was injecting for my morning toast but found that a few hours later I was feeling wobbly and having to eat wine gums to get in range again so even that is now stopped.

I now only inject NR for my evening meal, if at all, depending on what I eat. I started monitoring my Keytone levels regularly and get readings of around 1 on most day times that I did not use insulin. After evening injections that always reverted to "Lo".

I have lost a Stone and a half with no change in exercise routine.

My yearly Consultant review took place last month, face to face, and explaining all of the above he ordered another blood test and yesterday he told me that my Pancreas was indeed producing Insulin again! :happy: Although how much and why he does not yet know.

We talked about coming off Insulin and taking tablets instead but he advised against it till after the winter just in case things go wrong/change as "you really do not want to end up needing hospital care over the next few months." I had to agree.

I suppose it could all go pear shaped again and obviously the reduction in carbs could just be a coincidence but has anyone else had such an experience?
 
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StewM

Well-Known Member
Messages
390
Type of diabetes
Type 1
Treatment type
Insulin
I could be wrong, but this sounds more like you were misdiagnosed than anything else.
 

Ronancastled

Well-Known Member
Messages
1,236
Type of diabetes
Type 2
Treatment type
Diet only
Hmmmmmm . . . . is there any way you could've got diabetic through pancreatic injury/infection ?
Welcome to the boring old world of T2.
 

boggle

Well-Known Member
Messages
77
Type of diabetes
MODY
Treatment type
Diet only
Dislikes
Carbohydrates
Hi Pete

I was originally thought to have type 1 diabetes in May with a hbA1c of 104. With a ketogenic diet I have been able to stop taking insulin maybe 6 weeks ago. Maybe around 2 months ago I found out I had monogenic diabetes instead. Perhaps you have something similar.
 
M

Member496333

Guest
Misdiagnosis is alarmingly common but I have also read it may not actually be impossible for a T1 pancreas to restore some ability to produce insulin if the trigger that may have caused it is removable/removed. There is some anecdotal evidence out in the wild but obviously I can’t speak to the veracity of such claims. I’m aware I will take some flak for posting this but the reality is that no one knows.
 

PeteN11

Well-Known Member
Messages
81
Type of diabetes
Type 1
Treatment type
Insulin
I could be wrong, but this sounds more like you were misdiagnosed than anything else.
During the consultation he was bordering on being apologetic as he knows I lost my career with the diagnosis. Although earlier tests show I was not producing any Insulin.
 

PeteN11

Well-Known Member
Messages
81
Type of diabetes
Type 1
Treatment type
Insulin
Hmmmmmm . . . . is there any way you could've got diabetic through pancreatic injury/infection ?
Welcome to the boring old world of T2.
I suppose next year we will be able to look at it in more detail but I do not intend going near a hospital for the next few months.
 

NicoleC1971

BANNED
Messages
3,451
Type of diabetes
Type 1
Treatment type
Pump
I was diagnosed T1 just over 3 years ago. Usual symptoms and BS of 38. A week in intensive care with insulin being pumped in 3 ways including via my neck.:eek:

On recovery I was on 40 Units of Lantus and 30+ Units of Nova Rapid with each meal.

My NHS trust team trumpets the need for 225g of carbs a day and on a Bertie course would not even discus lowering the carb count to reduce the amount of Insulin I need to take. :grumpy:

I needed to loose weight as I had put back on the 3 stone I lost whilst ill and put on even more to almost 21 Stone but with that amount of insulin running through my body I was never going to burn an ounce of stored fat so thought I would give Keto "light" a go.

I am just not regimented enough to cut out carbs completely to induce Ketosis but have given up on Spuds, Pasta & Rice. I still eat bread and limit myself to at the most 100g of carbs but normally just the 2 slices of toast in the morning. Obviously my Insulin use reduced and I was able to slowly cut both amounts down to where 4 months ago I stopped the Lantus altogether. I was injecting for my morning toast but found that a few hours later I was feeling wobbly and having to eat wine gums to get in range again so even that is now stopped.

I now only inject NR for my evening meal, if at all, depending on what I eat. I started monitoring my Keytone levels regularly and get readings of around 1 on most day times that I did not use insulin. After evening injections that always reverted to "Lo".

I have lost a Stone and a half with no change in exercise routine.

My yearly Consultant review took place last month, face to face, and explaining all of the above he ordered another blood test and yesterday he told me that my Pancreas was indeed producing Insulin again! :happy: Although how much and why he does not yet know.

We talked about coming off Insulin and taking tablets instead but he advised against it till after the winter just in case things go wrong/change as "you really do not want to end up needing hospital care over the next few months." I had to agree.

I suppose it could all go pear shaped again and obviously the reduction in carbs could just be a coincidence but has anyone else had such an experience?
That is fantastic news and kudos for finding your own way to lowering your insulin needs safely.
It is possible for a pancreas that is under producing insulin to recover when you lose weight via low carb but that means you weren't not really type 1 in the first place. Not that it matters because I assume you are feeling good off such high doses of insulin that caused you to put extra weight on. On diagnosis it is understandable you were put straight onto insulin because 38 is dangerously high.
As you now know the actual bodily requirement for carbs is not 225g but Zero but some fibre from veg can be useful!
 

PeteN11

Well-Known Member
Messages
81
Type of diabetes
Type 1
Treatment type
Insulin
Hi Pete

I was originally thought to have type 1 diabetes in May with a hbA1c of 104. With a ketogenic diet I have been able to stop taking insulin maybe 6 weeks ago. Maybe around 2 months ago I found out I had monogenic diabetes instead. Perhaps you have something similar.
Great on not having to use Insulin. I read about monogenic last week. It is interesting that your diet changed your Insulin use.
 

PeteN11

Well-Known Member
Messages
81
Type of diabetes
Type 1
Treatment type
Insulin
Misdiagnosis is alarmingly common but I have also read it may not actually be impossible for a T1 pancreas to restore some ability to produce insulin if the trigger that may have caused it is removable/removed. There is some anecdotal evidence out in the wild but obviously I can’t speak to the veracity of such claims. I’m aware I will take some flak for posting this but the reality is that no one knows.
No reason you should get any flak as my consultant tends to agree with you that the knowledge is just not there.
 

PeteN11

Well-Known Member
Messages
81
Type of diabetes
Type 1
Treatment type
Insulin
That is fantastic news and kudos for finding your own way to lowering your insulin needs safely.
It is possible for a pancreas that is under producing insulin to recover when you lose weight via low carb but that means you weren't not really type 1 in the first place. Not that it matters because I assume you are feeling good off such high doses of insulin that caused you to put extra weight on. On diagnosis it is understandable you were put straight onto insulin because 38 is dangerously high.
As you now know the actual bodily requirement for carbs is not 225g but Zero but some fibre from veg can be useful!
Thanks for the encouragement. In a way loosing my job with diagnosis gave me the time to research and take the process slowly. I feast on veg and also some inappropriate fruit. :playful: But cannot give up meat.

On the Bertie course the insistence of 225g was infuriating not only to my circumstances but I also felt deeply for at least 4 others who had far busier lifestyles than mine and were unable to get below BS 20 even with increased injections.
 
M

Member496333

Guest
No reason you should get any flak as my consultant tends to agree with you that the knowledge is just not there.

Overwhelmingly likely that the cause of your insulin deficiency was not autoimmune related but, yeah, who knows…

EDIT: I’m sure you don’t need telling to be extremely careful with your monitoring and dosing if your pancreas is also spluttering back into life.
 

StewM

Well-Known Member
Messages
390
Type of diabetes
Type 1
Treatment type
Insulin
Misdiagnosis is alarmingly common but I have also read it may not actually be impossible for a T1 pancreas to restore some ability to produce insulin if the trigger that may have caused it is removable/removed. There is some anecdotal evidence out in the wild but obviously I can’t speak to the veracity of such claims. I’m aware I will take some flak for posting this but the reality is that no one knows.
It was cited in another, now closed, thread that a gluten-free diet had seemingly reversed Type 1 Diabetes. It seems like the study had carried out vigorous tests to confirm the Type 1 Diagnosis and the remission, but any attempts at recreating (that are available to read about) have failed. What was clear from the study (and the subsequent ones that tried to recreate it), no one really knows why it succeeded the first time and failed the following times.
 

PeteN11

Well-Known Member
Messages
81
Type of diabetes
Type 1
Treatment type
Insulin
Overwhelmingly likely that the cause of your insulin deficiency was not autoimmune related but, yeah, who knows…

EDIT: I’m sure you don’t need telling to be extremely careful with your monitoring and dosing if your pancreas is also spluttering back into life.
Thanks but yes I monitor well. Lows I do not suffer from and any highs (never had a 15+ since diagnosis) can be dealt with by jabbing. I am not trusting solely on my pancreas just yet, if ever again.:D
 
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LittleGreyCat

Well-Known Member
Messages
4,233
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Diet drinks - the artificial sweeteners taste vile.
Having to forswear foods I have loved all my life.
Trying to find low carb meals when eating out.

searley

Well-Known Member
Retired Moderator
Messages
1,880
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
Diabetes, not having Jaffa Cake
my dad a T1 of many years has gone through periods of insulin production to that point he has ceased insulin.... then all of a sudden 1 day back in hospital with DKA
 

Fenn

Well-Known Member
Messages
1,405
Type of diabetes
Type 1.5
Treatment type
Insulin
Thanks for the encouragement. In a way loosing my job with diagnosis gave me the time to research and take the process slowly. I feast on veg and also some inappropriate fruit. :playful: But cannot give up meat.

On the Bertie course the insistence of 225g was infuriating not only to my circumstances but I also felt deeply for at least 4 others who had far busier lifestyles than mine and were unable to get below BS 20 even with increased injections.
Hi, interesting story, nice job helping yourself.

Just out of curiosity, why were they unable to get BS under 20 even with insulin? Even eating 225g of carb, insulin has to work? Surely? Isn’t it absolute that it will work? Sorry If I’m being thick
 

LionChild

Well-Known Member
Messages
225
Type of diabetes
LADA
Treatment type
Insulin
Dislikes
whisky
During the consultation he was bordering on being apologetic as he knows I lost my career with the diagnosis. Although earlier tests show I was not producing any Insulin.
I was diagnosed T1 just over 3 years ago. Usual symptoms and BS of 38. A week in intensive care with insulin being pumped in 3 ways including via my neck.:eek:

On recovery I was on 40 Units of Lantus and 30+ Units of Nova Rapid with each meal.

My NHS trust team trumpets the need for 225g of carbs a day and on a Bertie course would not even discus lowering the carb count to reduce the amount of Insulin I need to take. :grumpy:

I needed to loose weight as I had put back on the 3 stone I lost whilst ill and put on even more to almost 21 Stone but with that amount of insulin running through my body I was never going to burn an ounce of stored fat so thought I would give Keto "light" a go.

I am just not regimented enough to cut out carbs completely to induce Ketosis but have given up on Spuds, Pasta & Rice. I still eat bread and limit myself to at the most 100g of carbs but normally just the 2 slices of toast in the morning. Obviously my Insulin use reduced and I was able to slowly cut both amounts down to where 4 months ago I stopped the Lantus altogether. I was injecting for my morning toast but found that a few hours later I was feeling wobbly and having to eat wine gums to get in range again so even that is now stopped.

I now only inject NR for my evening meal, if at all, depending on what I eat. I started monitoring my Keytone levels regularly and get readings of around 1 on most day times that I did not use insulin. After evening injections that always reverted to "Lo".

I have lost a Stone and a half with no change in exercise routine.

My yearly Consultant review took place last month, face to face, and explaining all of the above he ordered another blood test and yesterday he told me that my Pancreas was indeed producing Insulin again! :happy: Although how much and why he does not yet know.

We talked about coming off Insulin and taking tablets instead but he advised against it till after the winter just in case things go wrong/change as "you really do not want to end up needing hospital care over the next few months." I had to agree.

I suppose it could all go pear shaped again and obviously the reduction in carbs could just be a coincidence but has anyone else had such an experience?

But Pete, didn't the hospital do a C peptide test in the first instance - that is usually what is definitive?
 

AndBreathe

Master
Retired Moderator
Messages
11,321
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
It was cited in another, now closed, thread that a gluten-free diet had seemingly reversed Type 1 Diabetes. It seems like the study had carried out vigorous tests to confirm the Type 1 Diagnosis and the remission, but any attempts at recreating (that are available to read about) have failed. What was clear from the study (and the subsequent ones that tried to recreate it), no one really knows why it succeeded the first time and failed the following times.

StewM, vis-a-vis a gluten free diet: My Endo (whom I see for thyroid challenges, not diabetes) is keen on a gluten-free diet for those with auto-immune issues. At the time, I was having a while skip load of auto-immune related blood tests, including s coeliac panel, due to the quantum of AI issues in my family history.

My whole panel came back negative or inconclusive, but the Endo strongly recommended a GF diet because, "people with AI related conditions tend to do very well on it".

I have a telephone review in a couple of weeks, if I recall, I'll ask him about the case you cite.
 
M

Member496333

Guest
@andbreath you may like to have a sniff around for a book called Wheat Belly by William Davis. Quite the eye opener. I’m not asserting that the content is all fact, but it’s certainly an interesting read and highly recommended for anyone who suspects that wheat proteins may be causing them issues. Apparently it isn’t just gluten that people react to.