When low carb/keto doesn’t work

[Member496333]

So what are you if you only have mild insulin resistance and aren't over producing insulin?

Not type 2?

 

[LittleGreyCat]

Not type 2?

OK brainiac, make your diagnosis.

I am a diabetic who still produces insulin and only takes Metformin.

Away you go.

 

[Member496333]

OK brainiac, make your diagnosis.

I am a diabetic who still produces insulin and only takes Metformin.

Away you go.

No need to get snarky. I’m simply saying that the pathology of true type 2 diabetes starts with hyperinsulinemia and the resistance will remain even if the pancreas begins to fail at a later time. I’m not about to start commenting on your diabetes, and this thread isn’t about you or me anyway, so let’s leave it at that.

 

[ziggy_w]

It’s an assumption on my part based on the information provided. Firstly type 2 is hyperinsulinemia. Even if the pancreas has packed up, the insulin resistance remains, and any added or drug-teased insulin would need to be in high quantities, which is still hyperinsulinemia. You can’t really be a true type 2 and not insulin resistant, and pathological insulin resistance is hyperinsulinemia.

Obviously I’m not a doctor, so not making a diagnosis, but all the above point to hyperinsulinemia. Happy to be wrong but I’m willing to bet 10p I’m not

EDIT: for clarity, yes it’s possible the pancreas has had enough and is on its last legs, but a true type 2 would then need to be adding very large quantities of exogenous just to cover the resistance, which then amounts to exogenous hyperinsulinemia - the same mechanism that can bring about double diabetes in type 1. Hope I’m making sense

Hi @Jim Lahey,

It's good to see you posting on the forum again.

With respect to the OP, my guess would be that insulin resistance is minimal as a very low dose of gliclazide has a huge effect.

 

[boggle]

Hi Debbie, I have MODY 12, I was originally thought to have type 1 about 6 months ago. I would not be surprised if you had a MODY variant.

I was on insulin but have stopped about 6 weeks ago after doing keto for a while, but lately things for me are a little similar. I think I will likely be starting a sulfonylurea soon, which makes me nervous. Keeping an eye on this thread. Hope everything gets better for you soon.

 

[Jaylee]

Stopped gliclazide yet again on 18/10/21 because of the hypos
Since then I’ve logged everything I’ve eaten & drank on mfp and have kept to 20g total carbs (not net carbs as I haven’t deducted the fibre)
Last few days b/s had been rising & yesterday after the gym libre said 13.9 with an upward arrow, had 20mg of gliclazide & it fell quite quickly, down to 4.4 this morning.
This is the 4th time since May I’ve been back on it, seems like my pancreas needs a kick every few weeks.
I’m now being referred to a consultant to be tested for MODY, don’t know if that’s why low carb/keto doesn’t work
Been told to only take gliclazide long enough to stabilise b//s
So fed up

Hi,

Just a reference to the Libre you use. This drop down to "4.4." Did you back the reading up with a meter?
As a T1 Libre user myself, they are great. But can turn funny from time to time..

 

[Member496333]

With respect to the OP, my guess would be that insulin resistance is minimal as a very low dose of gliclazide has a huge effect.

You make a good point. Perhaps the low-carbing has gone a long way to reduce the insulin resistance but the pancreas is still having trouble. Or maybe type 2 was an erroneous diagnosis and a failing pancreas was always the problem. Interesting stuff. Anyway best of luck to OP.

 

[DEBBIESCOTT]

Hi @DEBBIESCOTT,

Hugs. It must be very frustrating what you are going through ... and it's definitely not what most of us T2s experience. So, in this sense it's a good that you've been referred to an endo for further exploration -- as I feel that MODY is a possibility in your case.

Here's a link to Jenny Ruhl's website (https://www.bloodsugar101.com/mody), who's herself been diagnosed with MODY after 7 years of diet control and believing she was a T2.

Maybe some of this sounds familiar (this is an excerpt from her website):

"People with some forms of MODY are not insulin resistant. They will respond to very small doses of insulin or drugs that stimulate insulin production. If misdiagnosed as having Type 1 diabetes and given insulin, they will typically remain using the very low doses used in the so-called "honeymoon" stage of Type 1 diabetes. However, this is not always true of other forms of MODY where high blood sugars apparently cause insulin resistance, though the genetic defect, not the insulin resistance, is thought to be the primary cause of the diabetes." ​

"MODY-1 and MODY-3 respond very well to drugs that stimulate insulin secretion. In these forms of MODY, the genetic defect causes the beta cell to fail to get the signal telling it to secrete insulin when blood sugar starts to rise. A strong response to a very small dose of a sulfonylurea drug or repaglinide may actually be diagnostic of the two forms of MODY that have this characteristic."

"In one common form of MODY, fasting blood sugar is normal, but insulin secretion begins to fail as blood sugars go over 144 mg/dl. ...
​

Hope this info helps a bit.

Thank you for this, I’ve read through it all & seems very familiar from gestational diabetes ( put a stone o.

Hi @DEBBIESCOTT,

Hugs. It must be very frustrating what you are going through ... and it's definitely not what most of us T2s experience. So, in this sense it's a good that you've been referred to an endo for further exploration -- as I feel that MODY is a possibility in your case.

Here's a link to Jenny Ruhl's website (https://www.bloodsugar101.com/mody), who's herself been diagnosed with MODY after 7 years of diet control and believing she was a T2.

Maybe some of this sounds familiar (this is an excerpt from her website):

"People with some forms of MODY are not insulin resistant. They will respond to very small doses of insulin or drugs that stimulate insulin production. If misdiagnosed as having Type 1 diabetes and given insulin, they will typically remain using the very low doses used in the so-called "honeymoon" stage of Type 1 diabetes. However, this is not always true of other forms of MODY where high blood sugars apparently cause insulin resistance, though the genetic defect, not the insulin resistance, is thought to be the primary cause of the diabetes." ​

"MODY-1 and MODY-3 respond very well to drugs that stimulate insulin secretion. In these forms of MODY, the genetic defect causes the beta cell to fail to get the signal telling it to secrete insulin when blood sugar starts to rise. A strong response to a very small dose of a sulfonylurea drug or repaglinide may actually be diagnostic of the two forms of MODY that have this characteristic."

"In one common form of MODY, fasting blood sugar is normal, but insulin secretion begins to fail as blood sugars go over 144 mg/dl. ...
​

Hope this info helps a bit.

Thank you for this, I’ve read all the way th &

Hi @DEBBIESCOTT,

Hugs. It must be very frustrating what you are going through ... and it's definitely not what most of us T2s experience. So, in this sense it's a good that you've been referred to an endo for further exploration -- as I feel that MODY is a possibility in your case.

Here's a link to Jenny Ruhl's website (https://www.bloodsugar101.com/mody), who's herself been diagnosed with MODY after 7 years of diet control and believing she was a T2.

Maybe some of this sounds familiar (this is an excerpt from her website):

"People with some forms of MODY are not insulin resistant. They will respond to very small doses of insulin or drugs that stimulate insulin production. If misdiagnosed as having Type 1 diabetes and given insulin, they will typically remain using the very low doses used in the so-called "honeymoon" stage of Type 1 diabetes. However, this is not always true of other forms of MODY where high blood sugars apparently cause insulin resistance, though the genetic defect, not the insulin resistance, is thought to be the primary cause of the diabetes." ​

"MODY-1 and MODY-3 respond very well to drugs that stimulate insulin secretion. In these forms of MODY, the genetic defect causes the beta cell to fail to get the signal telling it to secrete insulin when blood sugar starts to rise. A strong response to a very small dose of a sulfonylurea drug or repaglinide may actually be diagnostic of the two forms of MODY that have this characteristic."

"In one common form of MODY, fasting blood sugar is normal, but insulin secretion begins to fail as blood sugars go over 144 mg/dl. ...
​

Hope this info helps a bit.

Xx

Hi @DEBBIESCOTT,

Hugs. It must be very frustrating what you are going through ... and it's definitely not what most of us T2s experience. So, in this sense it's a good that you've been referred to an endo for further exploration -- as I feel that MODY is a possibility in your case.

Here's a link to Jenny Ruhl's website (https://www.bloodsugar101.com/mody), who's herself been diagnosed with MODY after 7 years of diet control and believing she was a T2.

Maybe some of this sounds familiar (this is an excerpt from her website):

"People with some forms of MODY are not insulin resistant. They will respond to very small doses of insulin or drugs that stimulate insulin production. If misdiagnosed as having Type 1 diabetes and given insulin, they will typically remain using the very low doses used in the so-called "honeymoon" stage of Type 1 diabetes. However, this is not always true of other forms of MODY where high blood sugars apparently cause insulin resistance, though the genetic defect, not the insulin resistance, is thought to be the primary cause of the diabetes." ​

"MODY-1 and MODY-3 respond very well to drugs that stimulate insulin secretion. In these forms of MODY, the genetic defect causes the beta cell to fail to get the signal telling it to secrete insulin when blood sugar starts to rise. A strong response to a very small dose of a sulfonylurea drug or repaglinide may actually be diagnostic of the two forms of MODY that have this characteristic."

"In one common form of MODY, fasting blood sugar is normal, but insulin secretion begins to fail as blood sugars go over 144 mg/dl. ...
​

Hope this info helps a bit.

thank you for this, I’ve read all the way through & sounds very familiar from gestational diabetes (put on a stone in a week) to going hypo on 20mg of gliclazide all the symptoms seem to fit

 

[DEBBIESCOTT]

With respect, I'm not sure that Debbie has a diagnosis of hyperinsulemia (which assumes serious Insulin Resistance).
I may of course have missed this in this/other threads.
@DEBBIESCOTT
Have you had your insulin production checked by CPeptide or similar?

Yes, I’ve had c-peptide & gad test this summer, producing lots of insulin & no antibodies

 

[DEBBIESCOTT]

Watching this with much interest.
I am only diagnosed for 13.5 years but now can't get my HbA1c below 7% when trying very hard to stay low carbohydrate.
I am considering that I may have to go to the next stage, possibly gliclazide, but your experience goes straight to my concerns.

If I start on gliclazide will I have to up my carbohydrates to avoid hypos?
How long will the drug continue to work.

Your strategy of taking gliclazide for a bit then stopping, then taking again if BG keeps going up is an interesting one.
Timing is the interesting part.
Like making sure you pay the Pied Piper before he steals the children.

I had a private IR test some years back and was diagnosed with mild IR.
My insulin production was low normal, but my fasting BG was above normal so I was not fully utilising the insulin.
Thus I had some IR but was not over producing insulin.
I would be interested to know (if you can find out) what your insulin production level is when you are not taking the gliclazide.

Hope you get a proper diagnosis soon.

Thank you, hope you manage to get yours under control with low carb, Is the insulin production test the c-peptide one? If it is I can look back on my records to see what the result was, I had it straight after being put on gliclazide in May.
Last time I saw the doctor he said to stop the gliclazide but if blood sugars go up to take it again . Spoke to DSN this week & could only suggest taking it to get blood sugar normal again then stop again, she’s spoken to a consultant who deals with MODY & he wants to see me, she’s told my go to refer me

 

[DEBBIESCOTT]

It’s an assumption on my part based on the information provided. Firstly type 2 is hyperinsulinemia. Even if the pancreas has packed up, the insulin resistance remains, and any added or drug-teased insulin would need to be in high quantities, which is still hyperinsulinemia. You can’t really be a true type 2 and not insulin resistant, and pathological insulin resistance is hyperinsulinemia.

Obviously I’m not a doctor, so not making a diagnosis, but all the above point to hyperinsulinemia. Happy to be wrong but I’m willing to bet 10p I’m not

EDIT: for clarity, yes it’s possible the pancreas has had enough and is on its last legs, but a true type 2 would then need to be adding very large quantities of exogenous just to cover the resistance, which then amounts to exogenous hyperinsulinemia - the same mechanism that can bring about double diabetes in type 1. Hope I’m making sense

It’s an assumption on my part based on the information provided. Firstly type 2 is hyperinsulinemia. Even if the pancreas has packed up, the insulin resistance remains, and any added or drug-teased insulin would need to be in high quantities, which is still hyperinsulinemia. You can’t really be a true type 2 and not insulin resistant, and pathological insulin resistance is hyperinsulinemia.

Obviously I’m not a doctor, so not making a diagnosis, but all the above point to hyperinsulinemia. Happy to be wrong but I’m willing to bet 10p I’m not

EDIT: for clarity, yes it’s possible the pancreas has had enough and is on its last legs, but a true type 2 would then need to be adding very large quantities of exogenous just to cover the resistance, which then amounts to exogenous hyperinsulinemia - the same mechanism that can bring about double diabetes in type 1. Hope I’m making sense

I’ve never actually been diagnosed as type 2 only as gestational diabetes that didn’t go away after my son was born, I think the doctors just presumed type 2, I’ve had hba1c’s in the normal range & ones not in the normal range since then, been told I’m diabetic then I’m not them I am

 

[DEBBIESCOTT]

Hi Debbie, I have MODY 12, I was originally thought to have type 1 about 6 months ago. I would not be surprised if you had a MODY variant.

I was on insulin but have stopped about 6 weeks ago after doing keto for a while, but lately things for me are a little similar. I think I will likely be starting a sulfonylurea soon, which makes me nervous. Keeping an eye on this thread. Hope everything gets better for you soon.

Thank you

 

[DEBBIESCOTT]

Hi,

Just a reference to the Libre you use. This drop down to "4.4." Did you back the reading up with a meter?
As a T1 Libre user myself, they are great. But can turn funny from time to time..

 

[DEBBIESCOTT]

Been using blood tests been down to 3.8 twice today (this morning & this evening) libre is reading higher than it actually is

 

[Lamont D]

I’ve never actually been diagnosed as type 2 only as gestational diabetes that didn’t go away after my son was born, I think the doctors just presumed type 2, I’ve had hba1c’s in the normal range & ones not in the normal range since then, been told I’m diabetic then I’m not them I am

I have read, that gestational diabetes is known to have similar symptoms to Hypoglycaemia.
Without looking, what is your hba1c and fasting levels since you started testing?

 

[DEBBIESCOTT]

I have read, that gestational diabetes is known to have similar symptoms to Hypoglycaemia.
Without looking, what is your hba1c and fasting levels since you started testing?

HBA1C was 128 in May, now 47
Fasting levels when everything is ok high 4’s to mid 5’s, rises to high 7’s (then rise to 9-11 within about half an hour)when things go pear shaped, this morning after 1 gliclazide tablet down to 4.4

 

[DEBBIESCOTT]

Hi Debbie, I have MODY 12, I was originally thought to have type 1 about 6 months ago. I would not be surprised if you had a MODY variant.

I was on insulin but have stopped about 6 weeks ago after doing keto for a while, but lately things for me are a little similar. I think I will likely be starting a sulfonylurea soon, which makes me nervous. Keeping an eye on this thread. Hope everything gets better for you soon.

Thank you
Why are you nervous of sulfonylurea? Personally I think having to inject insulin is much scarier (fear of needles) keto doesn’t work for me, but maybe it will for you, have you got a libre?, not totally accurate but at least you would be able to see when levels start going up
Take care

 

[boggle]

I don't have much issue with insulin as I only use a pen with a 4mm head on it and injecting into the abdomen is not painful at all if I take care. I find the finger pricking more painful.

My body is capable of making insulin, but there is something wrong when it comes to releasing it. The idea of taking a Sulfonylurea makes me nervous because it stimulates the release of insulin and only a small amount could increase my risk of hypo's. Some people with MODY need a very small amount and some need a lot. I think also it would mean I would need to eat more carbs and more regular meals, which would mean I would put the weight back on I have worked hard to lose. I like that with insulin you can decide how many units you are going to take.

I do have a libre, it's been extremely helpful.

 

[DEBBIESCOTT]

Think you should do what you feel is right for you, we’re all different, I hypo every day on 20mg of gliclazide if I don’t eat enough carbs with every meal, taken it for 3 days, tomorrow back to low carb, really wouldn’t want to take it all the time as blood sugar keeps going too low, & can’t drive, nice to be able to eat hot buttered toast though

 

[Hopeful34]

Think you should do what you feel is right for you, we’re all different, I hypo every day on 20mg of gliclazide if I don’t eat enough carbs with every meal, taken it for 3 days, tomorrow back to low carb, really wouldn’t want to take it all the time as blood sugar keeps going too low, & can’t drive, nice to be able to eat hot buttered toast though

This must be so frustrating for you. Just wondered if any medics had suggested taking the Gliclazide on alternate days, or more on one day, less the next etc? Not suggesting you do this without medical input, but a family member with type 2 ended up being told to do this by their endocrinologist, as they were having lots of hypo's, and it worked well for them until they were able to come off it completely.