Brittle diabetes

[Melgar]

I have just returned from a Dr consultation. The Dr said I have Brittle diabetes / labile diabetes, and that we cannot rule out Autoimmune diabetes. Does anyone else have this Brittle condition? How do you cope with it? I just edited to attach a pic of my blood sugar just now. This is after a cup of tea (Lactose free) at 6am. The 12.5 mmol/l spike is a few pieces of avocado a small piece of salmon and about a table spoon of wild rice. That is all I've had to eat today. I'm now at 9.1 mmol/L in the minute it took to post my graph.

 

[EllieM]

Hi @Melgar can I ask how your diabetes is treated? I always assumed that brittle diabetes happened to people on insulin, mostly T1s (or T3cs).

 

[Melgar]

Hi @Melgar can I ask how your diabetes is treated? I always assumed that brittle diabetes happened to people on insulin, mostly T1s (or T3cs).

EllieM, so did I! Diet and exercise only. They will not put me on any meds due to the frequency of low blood sugar events. They can go really low, like low twos. I don't drink alcohol because of the risk my liver will not intervene. These hypos come in swarms. My very low carb diet made no difference which I was on for about 9 months. I have only been diabetic since 2022. Before that I had elevated blood sugars which began at the end of 2019. Funny enough, not long after I was seriously ill with sepsis pneumonia and spent 5 days in the ICU. The Dr I saw today is all over low carb / keto so he's switched on. I really think it is related to my coeliac disease.

 

[HSSS]

I too thought brittle diabetes was a type 1 thing.

@Melgar what are the “unusual“ features of your diabetes that makes it different to a “typical” type 2 that have earned you this label from the consultant?

From this single graph I’m curious about the following
1. Did the tea follow getting up? Could dawn phenomenon be a thing for you?
2.That doesn’t sound like enough food for anyone so maybe your liver is dumping or using protein for gluconeogenisis in addition to the carb content of the meal. Or maybe you are particularly sensitive to rice.
3. Do you often see big unexpected rises and lower than pre prandial patterns after? I’m thinking about RH

 

[Melgar]

It's scary when you google it

I too thought brittle diabetes was a type 1 thing.

@Melgar what are the “unusual“ features of your diabetes that makes it different to a “typical” type 2 that have earned you this label from the consultant?

From this single graph I’m curious about the following
1. Did the tea follow getting up? Could dawn phenomenon be a thing for you?
2.That doesn’t sound like enough food for anyone so maybe your liver is dumping or using protein for gluconeogenisis in addition to the carb content of the meal. Or maybe you are particularly sensitive to rice.
3. Do you often see big unexpected rises and lower than pre prandial patterns after? I’m thinking about RH

No I had a DP of 7.5 around 5am which is when I get up. It usually drops to around 6 mmol/ls and stays there. I had a tea around 6am tea (lactose free milk no sugar). It rose to around 8 about thirty minutes later, settling back down again. Then it started to rise around 9:30am and kept on going up. I ate around 11:30 am which was the salmon and avocado and that bit of wild rice. Not sure how far it rose up but I caught it at 12.5 mmol/ls as I was driving. It slowly dropped down as you see from the cgm graph but rose again to 9.5 mmol/ls of its own accord. So my pre prandial is usually around 6 mmols. Today, post prandial around 2 1/2 hours later was about 9.9 mmols then dropped down then rose up again as I posted. Some of it might be the stress of seeing a doctor. What makes the Dr question the type 2 diagnosis, my lowish c-peptides, the fact that my low card did next to nothing for my blood sugars despite losing 35lbs in weight. I am 120 lbs, 5'6 very fit, but I do have coeliac. I was on that wretched low carb diet for 9 long months. That coupled with gluten free made it a miserable experiance. And yes I am sensitive to rice, actually I am sensitive to anything that has a carb in it. I had a tea with regular milk a while back when I was out as they did not have lactose free milk. My blood sugar rose to 11.3 mmols. No its definitely not RH.

 

[EllieM]

If you've got lowish cpeptide have they investigated the state of your pancreas? My (limited and possibly incorrect) understanding of T3c and brittle diabetes is that the lows can happen if your pancreas doesn't produce glucagon properly, as non diabetics have a neat little feedback loop involving glucagon and insulin and it's the glucagon that prevents hypos. So though I'm obviously unhappy that my pancreas doesn't produce insulin, I'm very happy that it still produces glucagon and various useful digestive enzymes.

 

[Melgar]

If you've got lowish cpeptide have they investigated the state of your pancreas? My (limited and possibly incorrect) understanding of T3c and brittle diabetes is that the lows can happen if your pancreas doesn't produce glucagon properly, as non diabetics have a neat little feedback loop involving glucagon and insulin and it's the glucagon that prevents hypos. So though I'm obviously unhappy that my pancreas doesn't produce insulin, I'm very happy that it still produces glucagon and various useful digestive enzymes.

Interesting. At the beginning of 2023 I had a bunch of tests to see what was going on with my pancreas and why I was having some bad hypos. Everything seemed normal. Actually they were not too concerned about my c-peptides (I'm thinking they were in the 500's pnols ??) I have the lab results somewhere, but everything else was normal. I can go several months with no hypos at all. Then whoosh back they come with no obvious reason like different foods. I don't drink and all my meals are made from scratch in case I consume gluten that makes me very sick.

 

[EllieM]

Given the coeliacs didn't they do all the antibody tests when you were first diagnosed?

edited to add, as in, "autoimmune diseases love company"

 

[Melgar]

Given the coeliacs didn't they do all the antibody tests when you were first diagnosed?

edited to add, as in, "autoimmune diseases love company"

I have the IgA antibodies as I do get dermatitis herpetiformis which is an immune response to gluten. I also have the DQ 2 and 8 genes, and my daughter has tested positive for coeliac. I can't keep down anything with gluten long enough for the test to be conclusive. Unlike type 1 diabetes the antibody test for coeliac is not straight forward.

 

[Melgar]

Thanks everyone for all your comments. I really appreciate them. .

 

[Melgar]

C-peptides 587pmol/L (fasting) - lab range 260-1730 pmol/L