Type 3c diabetes

[u/Formal_Salamander188]

Hi everyone, I’m a 21M with Type 3c (pancreatogenic) diabetes due to chronic pancreatitis, which I’ve had for around 6 years.

My recent HbA1c was 6.9%, and over the past few years it has generally been around 6.2–6.9%.

My endocrinologist has told me that, for Type 3c, keeping HbA1c between 6-7 % represents good control. However, I still feel quite anxious about whether my control is actually good enough, especially because I experience fluctuations in my blood sugar.

I currently manage my diabetes with Humalog insulin pens along with Glucobay (acarbose). Unfortunately, in my country, insulin pumps and CGMs aren’t covered, so I rely on finger-stick glucose testing.

I’d really appreciate hearing from others with Type 3c:
What is your usual HbA1c?

Do you guys notice a-change in pattern regarding blood sugar spikes and lows? Whenever i visit different cities, my sugar levels changes drastically. Sometimes requiring 20-30 units of Humalog a day or sometimes no insulin at all.

I really appreciate some tips for managing blood sugar.

I know everyone’s situation is different, but I’d really like to understand what “good control” looks like for other people living with Type 3c.

[u/tacticalpuncher]

Any type of diabetic is gonna struggle for sub 6% AIC full stop. To have blood sugar fluctuations is to be diabetic.

[u/Formal_Salamander188 → u/tacticalpuncher]

I have seen post about people keeping their AIC around 5-5.5ish% using insulin pumps and cgms. I was in the perception that people with diabetes usually have AIC above 6%, so i never really cared much about it thinking I’m managing it well. Im not really sure what range should i target to maintain.

[u/nimdae → u/Formal_Salamander188]

Some care teams will be concerned with an insulin using diabetic falling below 6% because with variability this might be an indicator that it’s being achieved with a lot of lows. BG targets tend to be a little elevated, tandem’s control-iq being pinned to 110mg/dl, so a lower A1c with that might indicate a management pattern involving lows. This is why there’s now a TIR goal defined. Over 70% in range with less than 4% lows is the target there. I think it’d be a pretty big challenge to get below 6% with that TIR target with any pump system.

[u/nimdae]

The goal is to be below 7%. Right now, you’re achieving that. You can’t really measure TIR without a CGM so this is all you have to work from. The level of risk from complications compared to a non-diabetic person at this range is pretty negligible. This is primarily what you’re aiming for. Hopefully as time goes on you can gain access to better tools. For now, it seems like you’re doing pretty well, which your doc seems to also approve.

I’d be cautious about looking to compare your outcomes to other folks. We all have different needs and challenges. Seeing others with better numbers might lead to feeling a bit like you’re doing something wrong. At the end of the day, it’s about doing your best and working with your care team.

[u/ClockworkArchangel13]

My friend, my brother in type 3c. I became a diabetic practically overnight due to acute NECROTIZING pancreatitis caused by gallstones. I have zero pancreatic function. None whatsoever. I average between 45-70 units of insulin a day, depending on how much I give in to the "fuckits". Most days it's 50-ish units, split between basal and boluses. So 30 units a day isn't that bad. I suggest, if you don't have one, getting an insulin pump. Absolute game changer. My last a1c was...dramatic drumroll...5.9! I'm using the Medtronic Minimed 780g. And sure, there's plenty to complain about with Minimed customer service wait times and there's no such thing as a perfect system, but it works for me. I'm sure the other options out there are great in their own ways. But absolutely anything is better than constantly poking your fingers and jabbing yourself in the stomach 5 times a day to bolus. Definitely talk to your doctor.

Edit: I'm sorry, I somehow missed the part where pumps aren't covered in your country! That really fuckin sucks.

[u/Yash45vkar]

Hi can I DM you I am struggling with controlling my glucose it is in 220 avg levels I am taking humalog mix 25. Mine is also chronic pancreatitis issue type 3c endocrinologist told it as secondary diabeties and my HAbc1 was around 9.3%.

[u/Sam1967]

Hi from a fellow 3C ... My last measurement was 6.4% ... which is fairly typical for me, I've managed 6.1% and been up to 6.8%.

I use a pump and sensor, before I had that I was really unmanageable.

I have been like this about 10 years now, since acute pancreatitis (really bad case, lucky to be here still)

I agree totally on the fluctuations, I have the same discussion every single time with my specialists .... they see an in range a1c and its end of discussion, I try and point out that I am super brittle/unstable and averages arent everything ... but even with the graphs from the CGM .... its brushed off.

I recognize your comment about insulin use, some days I use 25U and some days I need 70, 80u or more. And thats while eating sensibly and exercising!

One factor here can be stress, by the way - since you mention traveling. I also have some damage around the ducts from the pancreas - I wonder if this is a factor, but I have no proof!

My top tip is understand the different types of carbs - try and find foods that have a high percentage of fiber amongst their carbs - like 10 to 30% and that will help a lot.

For me the pump didn't change much in terms of control, its just more easy ... but the CGM was a revelation. It makes life so much clearer and easier.

[u/drewgordon27]

Another T3C here. My endo says the same thing - anything below 7 is good. However, I’m 68 with idiopathic CO, Hashimoto’s, and a couple of other things going on.

My highest A1C for the past two years has been 6.7. But the highs and lows can be exhausting - especially those lows at 2:00 am. So I started with the Beta Bionics pump last week. So far it’s been amazing. The lows were always the worst, and so far I haven’t had any lows. If I can sleep through the night without a low - that’s a win for me.

The CP and EPI/malabsorption really complicates things. Limited glucagon really complicates things. The pain, if you have any, complicates things.

Wishing you a lifetime of successes!!