Living With Type 3c Diabetes
Type 3c diabetes is not common. For those that have it, finding support, resources, or even information on what it is can be a challenge. Unlike Type 1 and Type 2 diabetes which are widely known by even those who do not have the disease, Type 3c remains in the shadows. Genteel ambassador, Jen M., is working to remove the mystery of Type 3c and provide a space for those who have it to share their experience, tips, and fellowship. We recently sat down to talk to Jen about her diagnosis and we are introducing her here to spread the word to those with Type 3c, that help is available.
What is Type 3c Diabetes
A Type 3c diagnosis, also sometimes referred to as pancreatogenic or pancreatogenous diabetes mellitus, only comes from cases where a person’s pancreas stops working properly through illness, a complex medical condition, or surgical removal. Most commonly, Type 3c will form in patients with pancreatitis, pancreatic cancer, cystic fibrosis, haemochromatosis, or in those without a pancreas. The first step towards diagnosing Type 3c is to determine if the pancreas is working correctly. If patients exhibit signs of digestive distress, a doctor can perform tests of the stool to look for undigested fats and food that would indicate problems in the pancreas. Blood work, as well as an ultrasound, CT, or MRI, might also be used. Symptoms associated with pancreatic issues include:
- Unexplained weight loss
- Stomach pain
- Gas and bloating
- Fatty or oily stools
- Hypoglycemia, also called low blood sugar.
In addition, studies have shown the average age of diagnosis of Type 3c diabetes is 59, and the majority of patients diagnosed are men.
For Jen, who founded the @Jenhasdiabetes account and is a regular on social media, the journey with Type 3c began when her pancreas was removed due to chronic hereditary pancreatitis. But the removal of her pancreas wasn’t all. Her spleen, gallbladder, and parts of her small intestine and stomach were also removed. She had major digestive system surgery and understood her relationship with food would have to change dramatically. If that wasn’t enough, without a pancreas, her body had no way to make insulin so she was informed that after surgery she would be diabetic.
During her several years of recovery, Jen found that while Type 3c is similar to Type 1 diabetes as it is a form of insulin-dependent diabetes, there is very little information out there on Type 3c. She doesn’t meet the description of the average patient as she is far from the age of 59 and she is female, which only left her feeling more alone.
At first, she found information and a social network through Type 1 groups online, but, while helpful, they somehow missed the mark of exactly what someone with Type 3c is living with. She decided that by sharing her story, she could help weed out others who had Type 3c and create a safe space for discussing the frustrations, experiences, and successes of fighting the disease. “Type 3c is very under-researched and underrepresented so there isn’t much out there that is easy for anyone to understand. I’m fortunate to have a medical background and a bachelor’s degree with a focus on reading peer-reviewed medical research. So I like to use my background to break down the difficult to understand information and post on my page to help people learn and actually understand what it all means,” she explains.
Type 3c Diabetes Treatment
The pancreas is responsible for insulin production to control blood sugar and enzyme production for proper digestion. Type 3c is a double whammy where the patient needs both insulin and enzyme replacement therapies. In addition, those with Type 3c diabetes can have difficulty absorbing vitamins A, D, E, and K and often have to take supplements.
“Since Type 3c is caused by some sort of pancreas issue people, like myself with Type 3c tend to have several comorbidities. Most of us have digestive issues and have to take supplemental pancreatic enzymes in order to digest our food and prevent malabsorption of nutrients. These enzymes are incredibly expensive, even more so than insulin if you can believe it,” Jen comments.
The body’s inability to absorb nutrients correctly can cause a host of problems if enzymes are not used or dosing is done incorrectly. Digestive enzymes break down food, fats, carbohydrates, and proteins, so when those enzymes are missing because the pancreas is no longer functioning, the patient has to take enzymes when they eat. It takes time to determine the correct dose to take as meals vary so much in size and what’s on the plate. A missed dose or overdose can be highly disruptive to the digestive system.
Managing Type 3c is challenging because treatment needs vary by the degree of damage to the pancreas. Generally, treatment starts with Metformin which helps any insulin the pancreas is producing to work better. Failing that, or in the case of Jen where the pancreas has been removed, insulin is the answer.
Self-care through healthy eating and exercise is also recommended for those with Type 3c, all under the guidance of your healthcare team.
As with any type of diabetes, regular testing of blood glucose is a must. Jen says her Genteel Lancing Device has been a lifesaver in taking the pain and fear out of regular testing. She loves that she can help share Genteel through her coupon code, jenhasdiabetes, which gives users a 10% discount on Genteel Kits. Although she is learning to live with diabetes, she concedes it is not always easy. “Bad diabetes days happen to everyone. I remind myself that the next day will be better. It always gets better. Having access to the tools and resources I need helps a lot. You learn to appreciate the small wins,” she says. Jen also says that while management is a lot of work, it becomes part of your life and she’s thankful that diabetes is 100% manageable so she can keep living her life.