T3cDM

@woodspixie I’ve never heard of T3cDM but I obviously don’t know everything there is to know about Diabetes. I myself have an uncommon type (having gone from type 1 at age 18, to a pancreas transplant at age 48, then type 2 at age 59.) At least that is what my local endocrinologist tells me. I’m 68 now. I learned from a Mayo endocrinologist that “Diabetes is high blood sugar and needs to be addressed regardless of the particular type”. So that is what I focus on. Yes my diabetes has been “brittle” at times but I am blessed to have great providers to help me on this journey. I’m curious; what surgery did you have, if you don’t mind me asking? What is being done about your pancreatitis and your iron overload? I’m afraid to ask what you mean by “etc”. Last but not least, you also have biliary issues as in liver? Bless your heart! I hope other members join this discussion soon who have more experience with what you are dealing with specifically.

Type 3c is also called pancreatic diabetes (DM), (sounds like what you may technically now claim with your history, but I would ask your endo!)

There are similarities to Types 1 and 2 DM in type 3, but the causes are different. Often people with T3 are lumped in with T2.

Pancreatic damage typically means beta cell damage (amongst other dysfunction). The liver, pancreas, adrenals (and more) communicate and act in coordination (in healthy people). If your pancreas (and possibly other organs) are not functioning properly, the signals fall out of sync, production of hormones, polymers, etc, like insulin, glucose, glycogen, cortisol can be under or overproduced, under or over utilized, and become more variable/ unpredictable, as time passes. (…if I’m understanding it properly; I’m not a physician, not advising anything)

The result is “brittle” or “labile” diabetes - hallmarks are excessive peaks and troughs (ie: excessive variability), especially following meals, but also often at night/ sleeping.

Sometimes glucose is within range, but often with variability of ~5 mmol, and rebounds even greater are not uncommon (re: reactive hypoglycaemia).
ie: You can be symptomatic of a hypo with your glucose in range, if it rises and falls rapidly, by >5. Example: pre meal ~5, rapid rise to ~10, rebound to 3.9 is technically within range, but indicates delays, overproduction, underutilization of insulin, issues with gluconeogenesis, insulin resistance, or etc, and you can experience symptoms.

Having this happen 3 x a day every day, (from what I understand) potentially causes stress/ damage, such as microvascular complications (e.g., neuropathy, retinopathy).

“Brittle” diabetes isn’t well documented, treated, nor well understood. Finding info is nearly impossible.

In T3cDM, one’s a1c and OGTT are often in range. These tests are generally used to dx diabetes but don’t show glycaemic variability (GV).

The greatest issue from my POV is it’s a “Catch-22”; you need an a1c of >7 to have insurance cover insulin, CGMs, BGMs, or to have a GP manage it without involving an endocrinologist.

Monitoring is critical, both to dx and treat - but you need CGMs to diagnose, and meds to treat.

So a GP could start treatment without the “blessing” of an endo with an elevated a1c. But they aren’t permitted to do so without it. And seeing a specialist is a long wait.

So I’m paying out of pocket for all the sensors, strips, etc so I don’t pass out, or seize from hypos in my sleep, (CGM alerts), and to document it (which CGM reports don’t do well, so I must screen shot the variability). The reports are a lot like the OGTT and a1c in that they only capture time in range (TIR), which doesn’t supply any information about variability.

My CGM peaks, rebounds, (also called “reactive hypoglycaemia) looks like the Swiss Alps.

The other problem is getting information, anywhere. T3cDM only comprises ~1% of all DM cases, so even the DEC (diabetic education centre) at the hospital didn’t have information, they’d never even heard of it, can’t dx nor treat; they have no physicians, just nurses.

You asked about “etc”; EDS, (a connective tissue disease/ insufficient collagen) which wreaks havoc with…pretty much everything, and also untreated adrenal insufficiency (steroids drove up my BP, so they just stopped care, which wasn’t a great idea), which further complicates the picture, poses increased risks of hypos.

I got here via multiple illnesses and insults to my biliary tract over time:
cholecystectomy long ago; then this last year: ERCP, sepsis, enlarged CBD, sphincterotomy, sludge, gallstones sans gallbladder. Blood products from the sepsis caused iron overload, which caused issues with my liver, so pancreas, liver, and likely adrenals are at play.

Underwent venesection the last few months for iron overload, pancreatitis isn’t managed, other than when it was acute, and I was septic (had infected pancreas, lungs, kidneys) last year. Hospitalized for months (…that sucked). No one followed up.

I requested an iron panel/ discovered the overload because of radical hair loss. I didn’t even know I’d had transfusions until I sought explanations. And because the iron overload lasted a year, it caused a lot of damage, despite no significant deposition.

I’m hoping to connect with anyone who has pancreatic diabetes; seeking information re: management, shared experiences, getting an idea of what to expect, which professionals can help; there’s nearly no specific information online.

There aren’t collectives/ support groups for us online; we simply don’t have the numbers.

Apologies if this was TMI. Hoping some of the details may be read by one or two people in similar circumstances, or by a professional who may have info.

I appreciate your input/ response! If your journey has been anything like mine, I’d love to hear more about how it’s managed/ about your journey.

Hope you feel well, or do soon!
Warm wishes. 💕