Q: I had the TPIAT in 2010 at UofMN Fairview- I had about 320,00 yield but my islets seem to have a mind of their own. My BG shoots up to 250+ then crashes to under 65 within 50 min. My dexcom looks like a roller coaster ride. Any suggestions?

A: It is complicated, because it may seem like your islets are functioning well in the sense you can come off insulin therapy, and yet you have these kinds of highs and lows. Some of the reasoning for the “roller coaster ride” can be due to the gut surgery part of TPIAT – which changes the GLP-1 and incretin hormones. Also, if islets are slow, it might take longer to kick in after having a meal, so there are highs and lows. 

Q: PRSS1 – acute and chronic 12 yo male – how often do you recommend MRCPs? Also, should C-Peptides be drawn to the yearly lab work?  

There is not any universal recommendation on frequency of imaging. Usually it will be determined by your child’s physician depending on if there are concerns for anatomic obstructions or complications in the pancreas, and/or based on new symptoms. We do watch the C-peptide levels in those who had TPIAT surgery, but I don’t think we have any good guidance yet for routine pancreatitis for C-peptide. I would definitely recommend yearly fasting glucose and HbA1c however for monitoring.

Q: Is there a connection between acute necrotizing pancreatitis & osteoporosis? I’ve had a diagnosis of osteopenia for 6 years.

A: Yes, or at least in chronic pancreatitis it is well established that risk for osteopenia and osteoporosis are increased. It is probably a risk with necrotizing pancreatitis for the same reasons. Nutritional deficiency, malabsorption (especially low vitamin D levels), inflammation and in some cases inactivity due to illness may all contribute. 

Read more about how pancreatitis affects nutritional deficiencies and bone disease

Q: I am in the Boston area. I have CP dx a year ago. My A1c is normal or near normal. But I have frequent symptoms of hypoglycemia. I tested it on my home monitor. Also have many many hypoglycemic sx. I cannot find a doctor to address this. My CP doc dismisses it. How can I find a knowledgeable doctor for this in the Boston area?

A: We do sometimes see hypoglycemia in patients with CP. It could be due to undernutrition, prolonged fasting, or associated with pancreatic surgeries, or caused by reasons we don’t yet understand. True hypoglycemia is <70 mg/dL with symptoms or <54 mg/dL in someone without diabetes, but a few people will be more sensitive and may have low symptoms at a higher threshold. For evaluation you could ask for referral to an endocrinologist who sees patients with hypoglycemia, or a diabetes specialist.  

Q: Is it better to live with a CP with multiple acute attacks and T3C or to have the pancreas removed and be T1?

A: The answer for this may be different for different people, so it is a good question to discuss with your doctors. If you consider a total pancreatectomy, you can have a consult evaluation (which does not require you to have surgery) to get more information. 

Q: Probably a very strange one. Our son had a very high thirst throughout his pancreatitis journey – minimum requirement of 5 liters per day and on one occasion in hospital consumed 10 liters in a 24 hour period. Alongside this he gained 70 lbs in a 2 year period, he also has Hashimotos. His HbA1c was checked throughout but was fine. Strangely when he had his TPIAT his thirst returned to normal as has his weight – is this normal?

A: It is not typical (but that’s not to say it is abnormal). I’m not sure why your son had these symptoms. Thirst and urine output are tightly regulated in our body to keep the right balance of water and sodium in our blood. Some people do also have behavioral drinking (meaning they are just big drinkers – and sometimes this can lead to a cycle of drinking a lot because the kidneys stop concentrating urine as well and someone needs to keep drinking to keep up with their needs).  

Q: Re: GLP-1 agonists, can you explain the mechanism that might create or effect pancreatitis?

This is a bit difficult to answer because the studies vary in whether or not these agents truly cause pancreatitis, and how high that risk is. However, we do see some stimulation of the exocrine pancreas with the GLP-1 agonists, and there are GLP-1 receptors on the exocrine cells. This is presumably why patients with type 2 diabetes in clinical trials have about a 2-fold increase in lipase levels on treatment, and may be a mechanism for acute pancreatitis risk. Rapid weight loss can also increase the risk of gallstones forming, which can then cause gallstone pancreatitis. 

Q: I am now supplementing with IV infusions to help with nutritional deficits. I’m already prescribed Creon in a rather large dose and although it helps with digestion, my tests show I’m still not absorbing enough nutrients.

Given the relationship between exocrine dysfunction and  T3c, I’m wondering if there’s any benefit to supplementing with IV to help manage the endocrine dysfunction? I’ve read that science isn’t sure whether the call on insulin – via incretin – (associated with the attrition process of digestion) is a cause or an effect of T3c…. I would imagine this could make a difference as to whether or not IV infusions may or may not help.

A:  I don’t have any data on IV infusions of vitamins. TPN (or nutrition through the vein) which is sometimes used, has some vitamins in it. For most people, what we recommend for vitamins are special vitamins made for those without a pancreas. These are formulations like MVW,  AquaDEKs, and DEKAs. In fact, the company that makes Creon has a program called Creononcourse.com where some individuals on Creon may be able to get vitamins for free. What these vitamins do is make the vitamin A, D, E, and K so that they don’t need normal fat digestion to be absorbed, and also include much higher doses of these vitamins than a standard multivitamin, so they usually work better than your typical vitamin on the shelf at Walgreens does.

Learn more about Vitamins and Pancreatitis

Q: Hi from a sunny but nippy Ireland. Just wondering, our son had his TPIAT 4 months ago and a 630,000 islet yield was achieved which we are delighted about. Currently he is only on background insulin and is reducing this. Is there an average lifespan of islets in the liver? Is there anything we should be prepared for? Thanks so much

A: We know that most people who come off insulin stay off for 2-5 years then gradually go back on. There are a number of individuals who do stay off insulin >10 years, and I am aware of only a couple of cases out to ~20 years. 

Q: My daughter had a feeding tube placed due to having chronic pancreatitis and she passed away 9 months after this. Could the feeding tube have exacerbated her symptoms?

A: I am so sorry for your loss. Feeding tubes are common in chronic pancreatitis, and for many (but not all) people they help with the symptoms (reduce pain or nausea).   

Q: I had endometriosis at a very early age and had to have a hysterectomy at the age of 23. Could any of that have an effect on having pancreatitis and diabetes later in life?

A: This will probably not affect pancreatitis or diabetes directly. However, if ovaries were removed (oophrectomy) at the time of hysterectomy, do consider screening for bone health with a bone density scan. Individuals with pancreatitis and diabetes have a higher risk for low bone mineral density, and estrogen is one of the most important hormones for building bone strength, so surgical removal of the ovaries or early menopause might increase this risk.  

Learn more about bone disease and pancreatitis

Q: PRSS1 acute and chronic pancreatitis – any specific diet recommendations?

A: Balancing diet in pancreatitis can be complicated as people’s daily calorie needs, absorption, activity level, and “safe” foods (those that reduce pancreatitis symptoms) vary. If considering how to reduce risk of diabetes long-term, the best diet is one that helps maintain a body mass index in the normal range (around 20-25 kg/m2).

Learn more about nutrition and pancreatitis