Well, the hits just keep on comin’! Apparently, I’m going to receive the diagnosis tomorrow from an NP I saw a few weeks back that my loving pancreas, other than not providing insulin, also isn’t providing enough Pancreatic Elastase, an enzyme that breaks down fat/protein. My wife says I’ve been eating a lot, apparently it’s because I literally can’t get enough!
You all know I like to be prepared with questions and be my own advocate (even more so as it took nearly 3 months just to get in to see the NP)! So, anyone with anecdotal, experience, or factual information on the Exocrine Pancreatic Insufficiency (EPI) is welcome to bombard me with it…particularly how it interacts with T1 treatment! In the meantime, despite all warnings not trust the internet, I’ll be looking up what it is, how it works, what the medical community likes to do about it, and…of course, our favorite…how it will screw with my diet, insulin, etc.! I figure with any luck, the 50% of foods my Endo would prefer I not eat and the other 50% of foods my kidney doc would prefer I not eat because of kidney stones, will be joined by another 50% of foods I can’t eat because of the EPI! I think approaching saturation…I CAN’T WAIT!
No experience but funny enough I just listened to a podcast about it concerning T1Ds. If the link doesn’t work in my Apple podcast app the show is called Diabetes Connections , June 25th, episode 651. I’m a bit addicted to all sorts of podcasts right now.
It would be interesting to know if your appetite decreases once you start on medication.
@Josie Thanks very much for the reference. Amazing that Dana Lewis, the one that helped invent the DIY APS system, the one that started the very system I’m using today, should be the one you reference!! I’ll have to wait to take her test as I don’t know my elastase test score as yet. Very interesting that she’s discovered T1s have an 30% correlation with EPI. Anyway, thank you very much!
Well, the diagnosis is severe EPI, based on an Elastase count of 10.5 when normal is over 200. Picking up a sample pack of pills while the script gets sent to/prepared by the pharmacy. Apparently they prescribe the pills base on up to 4/meal-snacks/day, so the supply could be huge for a 90 day supply. Anything with fat, you take a pill with it, including cream in your coffee! The enzymes don’t stick around long, used/excreted with your food, so impact is relatively immediate. No known impacts to T1 treatments, nor weight gain due to nutrient load (that part doesn’t make sense to me), isn’t known to be hereditary (will tell my daughter anyway), and while there are three different “lases” the pills pretty much address all the nutrients: carbs, proteins, and fats (apparently it takes more effort than its worth to separate the “lases”). So, now the fun begins…I see a larger pill container in my future and a little more space required for traveling! My thanks again to @Josie for the reference, the NP seemed impressed with my questions and informed status: “Most patients don’t know this much or know to ask these questions.”
I’ll still take any info anyone has to offer though…
Sorry to hear of you having EPI added to your type 1 diabetes. I thought I knew the causes of EPI pancreatitis, cystic fibrosis and pancreatic cancer. Then I find it is fairly common in in both type 1 &2 diabetes.Worse it’s often misdiagnosed or not at all.
At least you have a proper diagnosis and treatment. Now you get to take a pill along with your meal bolus.
From what I’ve read it seems that the loss of lipase is the most common enzyme to be lost. Elastase is mostly to break down proteins in especially elastin into amino acids.
Let us know how it goes. I wonder if some diagnoses of gastroparesis might actually be EPI.
@TomH
I have way too much info on pancreatic enzyme pills! (As do most of us 3cs. There’s only a handful of us on here, I think). There are a few different meds. I’m on Viokace, (the only one my pancreas guy subscribes now) largest dosage, 1 to 2 with every little thing and 4 with every meal. With this med, you need to be on a PPI (pantoprazole or the likes) as well. When you start on the enzymes, you’ll most likely notice a huge increase in after meal BGs. Although hopefully not too much of a rollercoaster for long.
Any questions, definitely ask, as I’m sure I have as much useless info as useful…
@CarlosLuis My wife asked me to ask the doc at my next appt (two weeks) if there’s a scan they can use to rule out pancreatic cancer (the NP did mention a potential MRI/CT at my first appt). I think one of my kidney stone docs said there didn’t appear to be any concern based on MRI results that viewed the area, but I’ll need to check the lab reports to see if it was recorded. I get her concerns given recent history of pancreatic cancer announcements with celebrities; apparently pancreatic cancers don’t cause sufficient problems to be diagnosed until its stage 4 and then its like “Sorry, not much we can do…” Doesn’t hurt to ask anyway, though it kind of runs in the “Do I really want to know?” category. I’ve now had my introductory doses of enzymes; I’m not sure it isn’t psychosomatic, but my guts seem a bit less angry…less pressure (bloat) and gas that warrants its on environmental warning label. Time will tell! It would be nice if the pills weren’t so big! I’m on introductory Creon low dose (36K units/pill, one pill per meal). Based on visuals only (one side of the capsule is clear) it seems they could shrink this stuff down a bit! C’est la…when I’m king…
@Mariethm Thanks for the warnings on the BG extremes; I asked the NP, but I don’t think she had a clue about T1 impacts (not her expertise after all). I have noticed both meals so far zoomed unto 200, but both immediately dropped back down without lingering high. I wasn’t sure if it was the meals or the new drug, could have been either, but I’ll keep a watchful eye. I was surprised that the NP said to take a pill even with coffee if creamer is used (I’m a morning coffee drinker but sans cream, milk, etc., just a some sweetener). Interesting note on the proton pump inhibitor, will keep that in mind. Thanks for the response!
@Mariethm The NP I saw said to titrate based on my response to the enzyme pills, start with 1 per meal/snack and work up to 4 if needed to control bloating discomfort, gas, etc. Did you/folks you know do similar or jump right in with the 4 pill/meal level? Interestingly, the instruction sheet the NPs office gave with sample bottles of pills was different from the NP’s verbal instructions (sheet said 1 pill with largest meal for three days, then 1 pill w/two largest meals for 3 days (I know some plan meals a week out, I’m not one of them, who writes this stuff?), then 1 pill w/three largest meals (“three largest”? How many meals am I supposed to eat?), then call and let them know how its going (I had a hard enough time getting the script sent to the right place, I’m not expecting the office staff to understand my call!). Then, do it all over again with 2, 3, and 4 pills. It would make sense if the meds needed build up, but the NP said the enzymes get used or flushed down the toilet. Though mostly anecdotal, I prefer the voice of experience…so your take? Thanks!
I started with ZenPep, which is very similar to Creon, and my former GI guy just said to start taking 3 with a large meal, but that there was no real formula. (There’s a reason why he’s former). I was taking 3 Viokace with every meal for awhile, and realized it wasn’t enough.
Personally, I’d jump right in to 3 with every real meal and then play with it a bit. But I also get 600/month, so I don’t worry about wasting a few here or there. (Sorry if this is too indelicate, but I judge it by farting, burping, and stool.)
@Mariethm and others that may go down this path: As @Mariethm warned, I’ve noted a large increase in post meal spikes in BG. I’ve increase my ICR trying to compensate (ICR of 1:7.5 avg is down to 1:6.6) and may have to go further. Late yesterday post early dinner, I went up to 250 and just stayed there for a few hours, nothing I did, neither additional Novolog nor an hour on the treadmill at high incline) would bring it down. Partially my fault, we had our grandson for the weekend and promised him Chuy’s for early dinner. My usual approach to control did NOT work as advertised! I’ll result to lower carb meals to try to control it in addition to higher ICR. My insulin intake has all but doubled; for the first time in in 2+ years I’ve had to replace the last two pods early by several hours for lack of insulin remaining…and that’s with adding to the load by 20+ units; I’ve gone from TDD of 22-27 (yes, I know others use much more) to 44-49 since starting the enzyme replacement. I’ll give it another couple of days to “normalize” then re-test basal, ICR, and ISF. I need to send notes to the prescribing NP and my Endo about the impacts I’m seeing; if it keeps up I’ll need an increase in prescribed Novolog.
If any of the rest of you get dx’d with EPI, fair warning to be on the watch for significant changes in insulin need/use. I suspected it would increase, how could it not with added nutritional loads, but this borders on the ridiculous and close to scary.
@TomH have you adjusted your basal rate. I forget how you administer insulin. I use a Tandem with C-IQ. Since my surgery and being on immunotherapy I find it helpful to take a couple of small food Lantus.
I find this works better than just increasing pump basal rate. My pump is set to 1.4u/hr the Lantus is 0.4u/hr. C-IQ will turn of basal if going too low.
@CarlosLuis Thanks for the question and pointer to basal testing. I’m using Dash pods, the G7 (it works well for me, consistent and accurate the great majority of the time) all via Trio 0.2.0 software as an eAGC (Automated Glucose Controller). I’ve been using Trio about 4 weeks, previously used iAPS and Loop; will settle on one of them soon. Trio and iAPS allow compensating for fat and protein in addition to carbs which I find helpful. The Trio 0.2.0 is close to finalized and it’s 1.0 release. The basal seems pretty good based on morning reviews of previous night readings. Of late; BG takes some time to settle down to an even keel of 95-115, basal on and off at times overnight, but that’s with the eAGC software working. I need to test it open loop and adjust if warranted. Its the waking hours with meals that have become the with enzymes: my understanding, that’s usually a sign ISF is too strong (too low of a number) and ICR isn’t strong enough (there’s a lot of confusion on what high and low mean, hence use of strong/weak).
I started pumping with Dash so as to avoid tubes (seems a complication factor I wanted to avoid), other than that T:Slim has a good rep and I’d be interested. I also knew I hated the concept of “blackbox” approaches like O5, iLet, etc., and knew I wanted to try OpenSource DIY Loop. In addition, I depend on Medicare (primary) and military Tricare For Life (secondary) and I tend to use my military benefit which doesn’t cover or support T:Slim, but does Dash pods. So all that taken together resulted in my current status.
@Mariethm and anyone else with recommendations: I’ve about given up on what to try to overcome the rollercoaster of BGs with the enzyme EPI treatment. Seems no matter what I do with ISF and ICR, amount or timing, BG’s take off about an hour or so after taking the enzymes with meals, 1x36K dose, zoom up to a BG of 225-275 (and wanting to go higher) and sit there for 2-3 hours before reluctantly letting go and drifting down. Exercise lowers it for about 30 minutes, then right back up. I’ve literally doubled my insulin use with only marginal effect, tried numerous correction doses to no discernable effect. Then, about 3-5 hours later, I drop like a rock, have to take glucose tabs to stem the tide or eat something that starts the process all over because eating anything requires another enzyme pill. I’ve reduced to two meals a day because I’m just too high at lunch time to eat and compound the issue. Even tried multiple smaller meals, no joy; plus they disrupt my wife’s efforts and I’m not going to do that, she helps enough with T1 meal planning as it is! I’ve researched the enzyme’s available and haven’t found anything hopeful. I plan to talk with/message my Endo and Gastroenterologist today, but I can’t live with this yo-yo process. I’m at my wits end trying to come up with a solution that’s even partially acceptable at this point. Any suggestions? And yes, its taking a mental toll, can’t live without the enzymes, can’t live with them.
@TomH I hear ya on the mental toll. It can be insane.
Until you get used to fully digesting food (you weren’t before) its going to be rough. Just being honest.
what dosage are you on? Mine’s 20880 lipase/78300 amylase/78300 protease. It may make a difference with how it affects digestion. Edit: just read your dose.
So, when I first started on enzymes, I DID stop eating all carbs because I could not control BG at all. That’s totally not the right thing to do. Are you prebolusing? Or after it starts to go up? My trick is take like 1-2 units right after meal and just watch it like a hawk, especially if I eat higher fat or protein. (I’ve basically stopped eating eggs because they throw everything off with digestion). I still have weird days, where I can’t bolus at all because it can take up to 6 hours to digest. But then I’m rage bolusing. (Hence not wanting to deal with a pump.)
If you ever want to actually talk, or have specific questions, message me and I’ll send my #.
Talk to your GI dr. If they don’t have enough info, find a new one.
@TomH I am so sorry to hear about all you are going through.
I have been experimenting with Trio & I was wondering if you are still using it?
Yesterdays experiment I thought might help. I enabled both Dynamic ISF & CR. The Adjustment Factor I brought down from .8 to .55. Max SBA basal minutes @90 Max UAM SBA basal minutes I brought down to 20. At these setting I still had to micromanage it but I did not have the crashing low like on the standard settings. I had it on all day & shut it off & went back to the standard setting at night after eating. The ISF & CR varied quite a lot & just maybe with you managing it could take the edge off your highs & lows.
for the best for you!