Howdy everyone. My name is Michael and I just got diagnosed with T1D on January 13, so I don’t know much of anything yet. My doc slapped a Libre 3 Plus on me and I go back on Tuesday to discuss the data and put a plan together. No medications yet, but I’m sure insulin is in my near future. If you have suggestions of questions I should ask at my appointment, I’d appreciate the info. Insights on CGMs and apps would be appreciated. I’m a techy/gadgety person, so I’m all in on the technology side of this.
Long story short on how I ended up here:
I had a pseudocyst on the tail of my pancreas that caused a “Pancreatico-pleural fistula connecting from the distal pancreas to the pleura at the level of the diaphragmatic crus.” Stupid thing decided to misbehave and cause problems.
On June 2, 2025, I had surgery. Distal pancreatectomy, splenectomy, partial left adrenalectomy, and lots of damage repair. I won’t go into details here, but if you are interested you can check out the blog (https://halfapancreas.blogspot.com/) I’ve started to dump my story, my feelings, and to post about T1D info.
I created an AI agent to automatically research and post on the blog every week, which I will use as part of my learning journey, and maybe it will help someone else, too. I just started the blog and there isn’t much on there yet. Just a few posts sharing how I got here and the blessings I’ve experienced along the way. Yes, blessings. My God has taken good care of me through this, and the church my wife and I go to have been a true picture of Christ’s “hands and feet” throughout. If you check it out and see any inaccurate info, let me know and I will correct it. Can’t trust AI to always be right.
While I was testing my AI agent, it created some good posts which I will publish once I’ve proof-read them. The official automatic post should hit tomorrow morning if I did it right
Anyway, here I am, eager to learn and help others along the way.
Well, I had hoped someone would have responded by now. I’m only 14 hours out from my doctor’s appointment and I have no idea what questions I should be asking.
Welcome to the club @MichaelDx ! Since you’re a gadget person I’m sure you’ll be looking forward to discussing pumps with your doctor. Lots of docs light to start their patients on pumps right away but do take your time and be sure to research them. Tubed pumps typically require a 4 year commitment once any trial period is over so you don’t want to jump too fast.
I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful. Diabetes has a steep learning curve but you should find his insights helpful and a good addition to what you will learn from your team. A new version was recently published so check the date.
I have been a little on edge about the insulin stuff. I have trypanophobia (fear of needles), so injections aren’t all that appealing, however I am not sure if I want to have a pump either (if I have a choice).
@MichaelDxWelcome Michael to the Breakthrough T1D Community Forum! Although, technically, you do not have what is currently referred to as “TypeOne” diabetes, you are welcome to this Forum.
“TypeOne” refers exclusively to Autoimmune Diabetes, and as you describe your potential diabetes is brought on through surgery that potentially damages the pancreas ability to produce the insulin hormone and the other 5 glucose management hormones produced in the Isles of Langerhans; your description indicates a probable Classification III diabetes variety. The good news for you, most of the Class 3 forms of diabetes can be effectively managed by the same methods as Class 1 - Autoimmune Diabetes. I suggest that you listen to what the doctor has to say, think about the information offered to you and ask YOUR questions based on real intelligence.
My doctor specifically told me type 1 diabetes, so now you have given me my first question to ask.
Anyway, whatever type I have, it seems the treatment is similar. Thanks for not kicking me out of the forum!
I just posed the question to my AI Agent and it seems to be confirming what you said:
A distal pancreatectomy can definitely cause diabetes, but it is usually not classified as classic Type 1 diabetes—it is typically called “pancreatogenic diabetes” or type 3c diabetes.pmc.ncbi.nlm.nih+1
What kind of diabetes is it?
When part of the pancreas is removed, you lose insulin-producing beta cells, so blood sugar can rise and diabetes may develop.oncotarget+1
Because the cause is pancreatic damage/surgery (not an autoimmune attack like Type 1), it’s grouped under “diabetes due to diseases of the exocrine pancreas,” often referred to as type 3c.diabetes+1
That said, in everyday clinical practice some people are simply told they are “insulin-dependent” or even labeled “type 1” after major pancreatic surgery, especially after total pancreatectomy, because they require lifelong insulin and intensive management similar to Type 1.diabetes+1
How common is diabetes after distal pancreatectomy?
Studies show a sizable risk of new-onset diabetes after distal pancreatectomy: reported rates range roughly from about 8–50%, depending on how much pancreas is removed, other health conditions, and length of follow-up.sciencedirect+2
Risk is higher if someone is older, has obesity, pre-existing impaired glucose tolerance, dyslipidemia, chronic pancreatitis, or if a large portion of the pancreas is resected.drc.bmj+2
How is this diabetes different from Type 1?
Cause:
Type 1: autoimmune destruction of beta cells.[diabetes]
Post-pancreatectomy/type 3c: physical loss or damage of pancreatic tissue from surgery, pancreatitis, trauma, or tumors.pmc.ncbi.nlm.nih+1
Hormones affected:
In type 3c, both insulin and glucagon (and sometimes digestive enzymes) can be reduced, which can make blood sugars more “brittle” with higher risk of lows when on insulin.beyondtype1+1
Autoimmune markers:
Type 1 usually has islet autoantibodies; pancreatogenic/type 3c diabetes usually does not.[pmc.ncbi.nlm.nih]
What this means for you
If you’ve had, or are planning, a distal pancreatectomy:
You are at increased risk for a form of diabetes caused by loss of pancreatic tissue, not classic autoimmune Type 1.oncotarget+1
Management often still includes insulin, regular glucose monitoring, and sometimes digestive enzyme replacement, but with recognition that this is pancreatogenic/type 3c diabetes.diabetes+2
This depends on your insurance. For example my insurance (private, group plan through work) treats pumps like DME “Durable medical equipment “ and will only pay for a pump 1x/4 years. If I wanted an omnipod however, this is paid via pharmacy benefit and not DME and there is no multiple year wait for renewed coverage. Your plan may be very different, so ask your plan manager what your deductible and your benefit includes.
All people with diabetes are welcome here. Is you pancreas producing any insulin?
As @Dennis illustrated one good question is how best to communicate your particular diabetes to the rest of your care team. Something that may help with that conversation is be aware that there is diabetes the disease, aka autoimune type 1 or type 2 or gestational etc, and diabetes the symptom: poor glucose control. Another question, if you are producing some insulin now does your doc expect that to continue? If there’s time ask about the reliability of CGMs and how to handle readings that don’t match how you feel. I think it takes almost a year to lean how to maximize reliability and how to handle the less good data.
Other homework that may help, open up your health plan’s Evidence of Coverage, called different things in some states, and search for diabetes to get an idea of coverage and copays. Then search your drug formulary for insulin to get an idea of which brands have which copays. Last, search the formulary for Libre and Dexcom CGMs. The docs office should be sorting out what’s covered but knowing ahead of time can sometimes save a couple of denials in case they don’t have the tools.
Beyond that, take a pen and paper and take lots of notes. Write down questions as you have them so you can maximize your appointment time by only asking the ones that don’t get answered.
Yup, I have a notebook already started just for this journey. We just got new insurance this year. I’ve tried finding info about this stuff, but haven’t really known what to look for. I’ll check what you mentioned and see what I find.
Fortunately for me, my doctor is also my friend. We go to church together, so I can just text him at 2AM!
Hope the appt went well. Let us know if there’s anything we can help with. I’m even willing to read insurance plans if it’ll help to explain something. Might as well use the suffering I’ve gone through for some good. And yes I tried AI on insurance docs when comparing plans a couple months ago, didn’t work, yet.
Thanks, @spdif , It was ok. A little more confusion in regards to the type of diabetes I have. When I asked, he initially said Type 2, and when I told him that at my last appointment they said Type 1 and I questioned about Type 3c he said I probably have a mix. So I guess I’m a diabetes mutt.
Whatever type it is, they put me on metformin, lispro and lantus - all three very cheap on my insurance plan. They’re getting me on Dexcom 7, cause it’s the one my insurance will cover. It’s going to be a lot cheaper than I originally thought, too. I got very conflicting information on that from the insurance lady vs. the pharmacy company. I guess we’ll see how it comes out.
), so injections aren’t all that appealing, however I am not sure if I want to have a pump either (if I have a choice).
and it seems to be confirming what you said:
