Stories From Real People With Post-Bariatric Hypoglycemia
The Everyday Impact of PBH
The Everyday Impact of PBH
Living with post-bariatric hypoglycemia (PBH) can demand considerable time and attention. It’s not just about blood sugar, it’s the constant planning, the mental checklists, the decisions you make around meals, timing, travel, work, or social plans. Always having to plan ahead and stay alert may feel exhausting, and it’s completely understandable if your confidence or sense of freedom has changed over time.
Hearing how others describe their experiences, what they noticed, how they found language for it, and what helped them feel more supported can make a difference.
Deanna,
person with PBH
Living with Post-Bariatric Hypoglycemia: Cindy's Story
In 2021, fifteen years after her bariatric surgery, Cindy was diagnosed with PBH. She shares how she first realized something was wrong, the impact the diagnosis had on both her life and her family's, and the vital role her loved ones have played in supporting her.
When Someone You Love Has PBH: Emily and Ray's Story
The experience of PBH is shared, affecting not just the person with PBH, but often everyone in their circle. Cindy's daughter and husband, Emily and Ray, share how their lives have changed since her diagnosis, emphasize the importance of strong support systems, and offer advice for those caring for a loved one with PBH.
Living with Post-Bariatric Hypoglycemia: Maria's Story
For Maria, bariatric surgery was a life-changing decision made with hope of a healthier and fuller life. However, about two years after her procedure, an unexpected condition changed everything. Maria shares her personal journey with PBH and how it has affected her day-to-day life and overall well-being.
When Someone You Love Has PBH: Kelly's Story
PBH doesn't just affect the person living with it. It also affects those closest to them. Kelly, Maria's daughter, opens up about what it's like to support a family member through the daily challenges of this condition.
Finding the Words
Many people find that hearing how others describe PBH helps them put their own experiences into words. There’s no single “right” way to talk about symptoms, but knowing how others talk about them may make conversations feel easier.
I was writing a note at work and my hand started shaking and I couldn't make it stop. So I called a friend in the office and she came and she has diabetes so she checked my blood sugar. It was in the 50s.
Cindy, person with PBH
There are times that I don't even realize that I'm having an episode. I can feel perfectly fine, not a symptom at all, but something nagging me in my mind is telling me something is off. Other times I feel dizzy, my head feels like it's in the clouds, I start to shake, and I have passed out.
Ashley, person with PBH
It was this combination of physical unease/unwellness, racing heart, headache, sweats and a strong sense of anxiety. It often felt very similar to a panic attack. [It would be an] anxious, unsettled feeling along with the physical symptoms, but without a clear emotional trigger.
Deanna, person with PBH
It's like getting on a roller coaster ride blindfolded every day. Battling highs and lows, and no idea how high or low you'll go each day. No two days are the same. You can do everything right with your diet but your body just doesn't respond the same way it did the last time you ate that same combination.
Jennifer, person with PBH
It is ever-changing. It's never the same. I can eat the food today, not ever react. You know, my blood sugar's good, stays good all day long. Tomorrow I can eat exactly the same thing and it will go crazy. So that is the most discouraging part.
Cindy, person with PBH
In that first year or so, I was experiencing strange symptoms after eating. Light headedness, nausea, sweating, shakiness, inability to articulate or make sense, my tongue would get numb, and also confusion.
Elizabeth, person with PBH
My blood sugars drop anywhere from 30 minutes to two hours and when they get low I start sweating and am hot and my skin is burning and also cold at the same time.
Heather, person with PBH
What People With PBH Say Helped
Everyone's journey with PBH looks different. Still, many people share similar reflections when they look back on what helped them feel more supported or prepared.
“Having my family know what the condition is and that it is REAL has been a big help. Being connected with others is also helpful. But having an endocrinologist that understands the disease and validates it has been golden. It has helped me push forward and want to help others through.”
— Maria, person with PBH
“The biggest thing that helped me start noticing patterns was using a continuous glucose monitor. I currently use an over-the-counter version and pay for it out of pocket, but it’s been so important for my safety and understanding that I plan to keep using it.”
— Deanna, person with PBH
“I have the most amazing support system. From my family, friends and coworkers. Everyone knows what to do if I ask for help.”
— Ashley, person with PBH
“My biggest learning tool is my glucose monitor. Without it, I would probably overreact a whole lot. So the CGM is my most important thing, my best friend during the day, all day.”
— Cindy, person with PBH
“I always make anyone in my circle aware of my situation. It helps bring awareness that I have this medical condition in case it affects me.”
— Jess, person with PBH
“Once I found the [support groups] as well as a specialist who treats and researches this, I have felt (finally) more supported and once again VALIDATED! This is real, it's not in my head and it's not something I'm doing wrong.”
— Elizabeth, person with PBH
What Would You Tell Someone Newly Diagnosed With PBH?
Looking back, people with PBH often wish they’d known certain things earlier. Here’s what others with PBH have shared.
“Know that everyone is different. Responses to medications, responses to foods. Take any advice you get and bring it to your endocrinologist. There are many people who want to help.”
Maria, person with PBH
“I would emphasize that they are not alone. There are more people dealing with this than it might seem at first, even if it doesn’t feel that way initially.”
Deanna, person with PBH
“I would validate that what they are experiencing is very real. I would encourage support groups and therapy. Finally, I would like to encourage hope.”
Elizabeth, person with PBH
“Some days are easier than others and you can do it, but it may not be easy. [Planning helps]… so much in life revolves around food. I plan everything that I eat, everyday.”
Heather, person with PBH
“I would tell them that I’m truly sorry they’re going through this. It’s not an easy condition to live with, and it can be very frustrating.”
Cindy, person with PBH
“Knowing I wasn’t alone, and talking to others dealing with this same condition, was reassuring. It has helped me learn better ways to deal with and cope with this condition.”
Jennifer, person with PBH
"I would advise them to try to continue with hobbies that bring joy and inspiration so that they get a little break from the everyday problems of PBH. It is important not to forget to live."
Person with PBH
"This is not your fault. I can eat the exact same meal - 2 separate days - and have 2 separate reactions. In order to live your life at a level of normalcy, you will need to work at it every day and it can be exhausting."
Jess, person with PBH
"Try to not let PBH stop you from what you love doing. Find what works best for you and stick with it."
Ashley, person with PBH
Want to Share Your PBH Story?
If you’d like to share your experience, we’d love to hear from you.
Click here for more information about how we may use health information you share with us.